Swimming Through Winter
2021
From the beginning......
From the beginning......
29th December 2020
In the middle of the air conditioning vent is a small square. It's surrounded by six other squares with gaps in between each one. I can see the silver duct through the gaps. The room has two down lights, a smoke alarm and a small water stain. I wonder if this is going to be my life now. Looking at consultation room ceilings. I've just had a mammogram downstairs, the lady's cheerfulness disappeared the longer my examination went on. I'm now here having an ultra sound. The sonographer is trying to be positive but I can tell that he knows what he's looking at will change my life. He goes and gets another sonographer who then asks for a doctor. They keep going outside the room and coming back in so that they can speak without me listening. When they return the doctor says "the lump on your breast is suspicious. We'll need to do a biopsy. I can do it today. It will tell us what kind of oncology you'll need". I try not to shake and I reply with a small "okay". I knew this would be the outcome. Ever since the local bulk billing GP said "I don't think the lump will be anything serious". He's never been right. He told us our son's arm was definitely broken when it wasn't. On another time he told us our son's arm wasn't broken when it was. That was the moment I knew that I had breast cancer. The doctor at the ultrasound was confirming it and now I had a six day wait for biopsy results just to have my thoughts go back and forth. Is it really cancer? Maybe it's just a cyst. Do I think the worst so that when it's confirmed I'm ready to deal with it? or do I tell myself it's nothing so that during these days of waiting I haven't spent my time worrying for no reason.
The biopsy room ceiling was slightly bigger but with the same air con vent, same smoke alarm but two big water stains, about the size of a puddle that I could jump in. The doctor was very matter of fact. Providing straightforward information. The assistant was gentler, giving care to the whole person who was lying there. Was it really me lying there? This is not happening to me.
4th January 2021
Erin peers through the caravan curtain and yells out "Mum. What you're doing is illegal". I consider that she's probably correct. We've broken down between Taralga and Oberon and I need a shower. I've heated up a bucket of water, stripped off and am doing just that on the side of the road. There hasn't been a car for at least fifteen minutes, but of course I hear one approach, so I duck down behind my car and shield the occupants from the sight of me.
I give Liam a hair cut, make us some lunch, deflate our inflatables and find five bucks in my pocket. Winning. The NRMA arrives with a tow truck and a hire car as it starts to storm and we make our way cautiously to Lithgow through the pounding rain. We find Callum and his friends at our intended camping spot as the rain clears and I'm served up dinner. My head doesn't have space to think about test results. I need to get us, a broken car and a caravan back to Robertson tomorrow. But I know as I lie there that this will be my last night before I have cancer.
5th January 2021
The NRMA sorts out everything. Another tow truck to Robertson for the car and van and offer me a hire car. But I know that I'm not going to be capable of driving. I know I have to face it and contact the doctor and hear my results. We leave Callum with his friends to catch the much looked forward to XPT later that night. Liam, Erin and I hop on a silver V set train with a purple interior, and plan to go from Lithgow to Central and then Moss Vale. We get to the station and I realise we need masks. They're now mandatory on public transport. They're not hard to find. Erin's anxiety about public transport is mounting so we board the train even though it won't leave for another twenty five minutes. I take a deep breath and call the Doctor. They say that they have my results but are booked out and can't fit me in for another two days. I ask, "Please. Please find someone who can do a phone consult". She agrees. We settle down into our seats when I realise that we're in a quiet carriage. We cannot be in a quiet carriage. As we weave our way past the seats and into the next carriage my phone rings and I answer. The Doctor says that I'll need to come in. "I'm on a train in Lithgow" "Do you have family with you?" I pause. I know she means a supportive adult. I look at Liam and Erin and say "yes, I'm with family". "I don't want to tell you news like this over the phone. I think you should come in". Is she serious right now? I guess this kind of lead up prepares you for the final blow. "I'm ready. Tell me". I know it's coming. I know what she's going to say, but it doesn't prevent the adrenaline from surging through me. "I'm really sorry to have to say this but you have invasive breast carcinoma". I try my best to concentrate on the sentences that follow. Further scans. Bone scans. Abdominal scans. Specialist Appointments. We hang up.
"Liam and Erin. I'm really sorry, but I have breast cancer". "Noooo. No mummy. No. Nooo mummy. No. Nooooo". We cry and cuddle together until I can manage to call Jon. "I have breast cancer. Can you pick us up in Glenbrook or something? We don't want to stay on the train til Central then Moss Vale". We decide on Penrith.
I want to let people know. It's a task that has to be done and I want it done now. I have no intention of keeping this a secret. I want the love and support that I know I'll receive. I go to the notes that I've previously written in my phone. There's two. I scroll past the one that says "It's just a cyst" and I copy and paste the other one.
I think mum is in denial. My dad and my brother know it's real. I drive back to Mittagong to pick up Callum. He's filthy after three days with no shower and completely exhausted. I tell him on the way home. He's strong.
Jon and I haven't had a moment alone yet.
In the middle of the air conditioning vent is a small square. It's surrounded by six other squares with gaps in between each one. I can see the silver duct through the gaps. The room has two down lights, a smoke alarm and a small water stain. I wonder if this is going to be my life now. Looking at consultation room ceilings. I've just had a mammogram downstairs, the lady's cheerfulness disappeared the longer my examination went on. I'm now here having an ultra sound. The sonographer is trying to be positive but I can tell that he knows what he's looking at will change my life. He goes and gets another sonographer who then asks for a doctor. They keep going outside the room and coming back in so that they can speak without me listening. When they return the doctor says "the lump on your breast is suspicious. We'll need to do a biopsy. I can do it today. It will tell us what kind of oncology you'll need". I try not to shake and I reply with a small "okay". I knew this would be the outcome. Ever since the local bulk billing GP said "I don't think the lump will be anything serious". He's never been right. He told us our son's arm was definitely broken when it wasn't. On another time he told us our son's arm wasn't broken when it was. That was the moment I knew that I had breast cancer. The doctor at the ultrasound was confirming it and now I had a six day wait for biopsy results just to have my thoughts go back and forth. Is it really cancer? Maybe it's just a cyst. Do I think the worst so that when it's confirmed I'm ready to deal with it? or do I tell myself it's nothing so that during these days of waiting I haven't spent my time worrying for no reason.
The biopsy room ceiling was slightly bigger but with the same air con vent, same smoke alarm but two big water stains, about the size of a puddle that I could jump in. The doctor was very matter of fact. Providing straightforward information. The assistant was gentler, giving care to the whole person who was lying there. Was it really me lying there? This is not happening to me.
4th January 2021
Erin peers through the caravan curtain and yells out "Mum. What you're doing is illegal". I consider that she's probably correct. We've broken down between Taralga and Oberon and I need a shower. I've heated up a bucket of water, stripped off and am doing just that on the side of the road. There hasn't been a car for at least fifteen minutes, but of course I hear one approach, so I duck down behind my car and shield the occupants from the sight of me.
I give Liam a hair cut, make us some lunch, deflate our inflatables and find five bucks in my pocket. Winning. The NRMA arrives with a tow truck and a hire car as it starts to storm and we make our way cautiously to Lithgow through the pounding rain. We find Callum and his friends at our intended camping spot as the rain clears and I'm served up dinner. My head doesn't have space to think about test results. I need to get us, a broken car and a caravan back to Robertson tomorrow. But I know as I lie there that this will be my last night before I have cancer.
5th January 2021
The NRMA sorts out everything. Another tow truck to Robertson for the car and van and offer me a hire car. But I know that I'm not going to be capable of driving. I know I have to face it and contact the doctor and hear my results. We leave Callum with his friends to catch the much looked forward to XPT later that night. Liam, Erin and I hop on a silver V set train with a purple interior, and plan to go from Lithgow to Central and then Moss Vale. We get to the station and I realise we need masks. They're now mandatory on public transport. They're not hard to find. Erin's anxiety about public transport is mounting so we board the train even though it won't leave for another twenty five minutes. I take a deep breath and call the Doctor. They say that they have my results but are booked out and can't fit me in for another two days. I ask, "Please. Please find someone who can do a phone consult". She agrees. We settle down into our seats when I realise that we're in a quiet carriage. We cannot be in a quiet carriage. As we weave our way past the seats and into the next carriage my phone rings and I answer. The Doctor says that I'll need to come in. "I'm on a train in Lithgow" "Do you have family with you?" I pause. I know she means a supportive adult. I look at Liam and Erin and say "yes, I'm with family". "I don't want to tell you news like this over the phone. I think you should come in". Is she serious right now? I guess this kind of lead up prepares you for the final blow. "I'm ready. Tell me". I know it's coming. I know what she's going to say, but it doesn't prevent the adrenaline from surging through me. "I'm really sorry to have to say this but you have invasive breast carcinoma". I try my best to concentrate on the sentences that follow. Further scans. Bone scans. Abdominal scans. Specialist Appointments. We hang up.
"Liam and Erin. I'm really sorry, but I have breast cancer". "Noooo. No mummy. No. Nooo mummy. No. Nooooo". We cry and cuddle together until I can manage to call Jon. "I have breast cancer. Can you pick us up in Glenbrook or something? We don't want to stay on the train til Central then Moss Vale". We decide on Penrith.
I want to let people know. It's a task that has to be done and I want it done now. I have no intention of keeping this a secret. I want the love and support that I know I'll receive. I go to the notes that I've previously written in my phone. There's two. I scroll past the one that says "It's just a cyst" and I copy and paste the other one.
I think mum is in denial. My dad and my brother know it's real. I drive back to Mittagong to pick up Callum. He's filthy after three days with no shower and completely exhausted. I tell him on the way home. He's strong.
Jon and I haven't had a moment alone yet.
7th January 2021
Damn*. I forgot sunscreen. I don't want to get cancer. I use Brian's.
The river water is brown. Almost black from all the run off. No one should be putting their head under in this. We wade over to the beach hoping for something clearer to swim in. It looks like less of a sewerage system over there. I dive under a wave and pop up doing butterfly. It makes me feel strong. I settle into freestyle behind the breakers and the swell gently rocks me. It's calming. I'm completely comfortable. I'm swimming. I usually look up about every eight strokes to make sure I'm going in a straight line, but today I have no desire to reach the other end of the beach. I just want to be swimming. I can't tell if I'm moving forward, the beach is too far away and the sand on the bottom is too stirred up to tell. I smile, and when I fall off the back of a wave, I laugh. It's a stretch of beach that has a small reputation for the occasional fin. Not the fins that we saw last week, the pod of about fifty dolphins, the other kind. Today the thought of them doesn't give me any kind of fear. I have a different perspective now. We get closer to the rocks where the weed is swirling around with the sand and I can feel it make sharp scratches under my cozzies. It's a swim through churning whitewash to get back to land. As we walk back down the beach I kick up the water and it seems to fall down in small balls of frothy bubbles in slow motion. Today is odd. It's completely normal yet nothing is normal at all.
*apologies to the Canadians for the poor language. In Australia our swear words are a bit more coarse. And damn (sorry), isn't one of them.
There is a truck stuck on the pass so we have to turn around and go back up the mountain and then go back down through Jamberoo. At the hospital the lifts aren't working so there is nothing to do but wait in the foyer. Someone comes over to the lady in front of us and says she'll have to reschedule her appointment for another day. I turn to Jon "I can't do that, I can't reschedule". I'm not even sure why I'm here. The GP said I'd need bone and abdominal scans but this is an appointment with a surgeon. I found that out by googling his name. I can't do this. My stomach starts churning and the nausea makes me go to the bathroom for the second time in ten minutes. I can't do this. I sit down on the ground in the foyer and start writing about my swim. I can take myself back there. I can feel the gentle movement of the ocean and picture the sand puffing up underneath me while my arms turn over and my legs kick. Forty five minutes later the lifts are fixed. We're sitting in the waiting room. "I don't want to be here". "I know".
The doctor calls us in and starts explaining things. I'm trying my best to concentrate. He thinks my cancer is smaller than two centimetres and he thinks it's localised. He won't know until he operates and then the lump and some lymph gland will go away for testing, but he suggests a lumpectomy is our first step. I suggest a double mastectomy. I tell him "I don't want one boob. I'll have two or none. Only one would be weird and I don't want to go round in circles when I'm swimming cause I'm lop sided". He kindly tells me, although that is an option for me, it's probably a bit extreme at this stage.
My surgey will be on the 21st.
I have grade 3 aggressive cancer. It's the highest grade so he explains that this means as well as surgery, I will need chemotherapy. I ask about the further scans that I thought I had to have. He doesn't think I need them. Jon explains to him that I've had a sore elbow and the GP has told us that it's tennis elbow. "I'll send you for a bone scan tomorrow, just for peace of mind. You're from Robertson, are you farmers? Where would be the closest place for you to go?". I say "Bowral". "Bowral?!". He says it like it's on the other side of the country even though we're only in Wollongong. Coasties don't tend to come up the mountain. If they do it's for an overnight stay. "I'll book you into Shellharbour tomorrow, is that okay?". Shellharbour will be fine. Maybe I can get another swim in. I'm still trying to concentrate but it's too hard. I don't have to anyway. Jon is here.
I feel like I've been told that I'm completely fine. The relief just from having further information has eased the sickening feeling that I had before the appointment. I'm at ease. I'm happy.
Callum is getting a taco making lesson from his Uncle. There's plans for cooking a roast next time "Because Cal. It will impress the ladies". There is laughter and happiness everywhere as we sit down and eat together. I start to sink. I've got cancer. It's grade 3 aggressive cancer. I excuse myself to walk home. It's freezing in Robbo. I'm shivering but glad to be walking. Glad to be moving.
Jon gets the fire roaring. I put my head on his chest and listen to his heart until I get sleepy enough to go to bed. This is going to be hard.
Damn*. I forgot sunscreen. I don't want to get cancer. I use Brian's.
The river water is brown. Almost black from all the run off. No one should be putting their head under in this. We wade over to the beach hoping for something clearer to swim in. It looks like less of a sewerage system over there. I dive under a wave and pop up doing butterfly. It makes me feel strong. I settle into freestyle behind the breakers and the swell gently rocks me. It's calming. I'm completely comfortable. I'm swimming. I usually look up about every eight strokes to make sure I'm going in a straight line, but today I have no desire to reach the other end of the beach. I just want to be swimming. I can't tell if I'm moving forward, the beach is too far away and the sand on the bottom is too stirred up to tell. I smile, and when I fall off the back of a wave, I laugh. It's a stretch of beach that has a small reputation for the occasional fin. Not the fins that we saw last week, the pod of about fifty dolphins, the other kind. Today the thought of them doesn't give me any kind of fear. I have a different perspective now. We get closer to the rocks where the weed is swirling around with the sand and I can feel it make sharp scratches under my cozzies. It's a swim through churning whitewash to get back to land. As we walk back down the beach I kick up the water and it seems to fall down in small balls of frothy bubbles in slow motion. Today is odd. It's completely normal yet nothing is normal at all.
*apologies to the Canadians for the poor language. In Australia our swear words are a bit more coarse. And damn (sorry), isn't one of them.
There is a truck stuck on the pass so we have to turn around and go back up the mountain and then go back down through Jamberoo. At the hospital the lifts aren't working so there is nothing to do but wait in the foyer. Someone comes over to the lady in front of us and says she'll have to reschedule her appointment for another day. I turn to Jon "I can't do that, I can't reschedule". I'm not even sure why I'm here. The GP said I'd need bone and abdominal scans but this is an appointment with a surgeon. I found that out by googling his name. I can't do this. My stomach starts churning and the nausea makes me go to the bathroom for the second time in ten minutes. I can't do this. I sit down on the ground in the foyer and start writing about my swim. I can take myself back there. I can feel the gentle movement of the ocean and picture the sand puffing up underneath me while my arms turn over and my legs kick. Forty five minutes later the lifts are fixed. We're sitting in the waiting room. "I don't want to be here". "I know".
The doctor calls us in and starts explaining things. I'm trying my best to concentrate. He thinks my cancer is smaller than two centimetres and he thinks it's localised. He won't know until he operates and then the lump and some lymph gland will go away for testing, but he suggests a lumpectomy is our first step. I suggest a double mastectomy. I tell him "I don't want one boob. I'll have two or none. Only one would be weird and I don't want to go round in circles when I'm swimming cause I'm lop sided". He kindly tells me, although that is an option for me, it's probably a bit extreme at this stage.
My surgey will be on the 21st.
I have grade 3 aggressive cancer. It's the highest grade so he explains that this means as well as surgery, I will need chemotherapy. I ask about the further scans that I thought I had to have. He doesn't think I need them. Jon explains to him that I've had a sore elbow and the GP has told us that it's tennis elbow. "I'll send you for a bone scan tomorrow, just for peace of mind. You're from Robertson, are you farmers? Where would be the closest place for you to go?". I say "Bowral". "Bowral?!". He says it like it's on the other side of the country even though we're only in Wollongong. Coasties don't tend to come up the mountain. If they do it's for an overnight stay. "I'll book you into Shellharbour tomorrow, is that okay?". Shellharbour will be fine. Maybe I can get another swim in. I'm still trying to concentrate but it's too hard. I don't have to anyway. Jon is here.
I feel like I've been told that I'm completely fine. The relief just from having further information has eased the sickening feeling that I had before the appointment. I'm at ease. I'm happy.
Callum is getting a taco making lesson from his Uncle. There's plans for cooking a roast next time "Because Cal. It will impress the ladies". There is laughter and happiness everywhere as we sit down and eat together. I start to sink. I've got cancer. It's grade 3 aggressive cancer. I excuse myself to walk home. It's freezing in Robbo. I'm shivering but glad to be walking. Glad to be moving.
Jon gets the fire roaring. I put my head on his chest and listen to his heart until I get sleepy enough to go to bed. This is going to be hard.
8th January 2021
I sat down in one of those big blood test chairs. The man comes over and says "I'm just going to give you a radioactive injection. It's not a dye, so it won't hurt". "Ok". "You'll need to come back in two hours for the scan".
The two hours pass quickly. I'm having the best day spending time with Jon. Until I'm not. He's not even aloud into the building because of covid. I lie down in something like a big sandwich press. He explains this test will go for fifteen minutes. He slides me under the top lid. It's just a few centremetres above my nose. I think of Callum. He gets claustrophobic in the caravan bunk bed. He would hate this. I realise that if I wanted to get up I couldn't. I tell my self over and over that I'm not claustrophobic. It's hard. I also have a mask on because of covid. I get the sensation that I might panic. So I close my eyes and imagine that I'm swimming. I'm swimming. I'm swimming. I'm swimming. I just keep saying it and picturing the river and my friends swimming alongside me. I can picture their strokes and who wears which colour cap. I breath and I keep swimming. When I settle, I open my eyes and see that the top lid of the sandwich press has moved down to my chin. I'm looking at the ceiling. It's the same air conditioning vent. The square one. This one has a dirty old piece of sticky tape flapping around. I can also see the screen and know that I have seven minutes to go. The next test is in a different room. Another square air con vent and another piece of dirty sticky tap. I guess the tape has something to do with the vent rather than being left over from holding up Christmas decorations. This test is the one you see on tv. The one in the round tube. There's a tiny little radioactive sign above my face that I can see when I slide in and out of the big circle. That can't be healthy. There's one more test with a machine that moves from side to side around me while I stay still, and then a few like xrays. The man asks me where I swim. I don't remember telling him that I swim. I must have. I say "in the river at Minnamurra", he says "aren't there sharks in there". I reply a bit bluntly "I've never seen one". He's not sure when I'll get the results from the Doctor, but says there's an app.
I've asked Jon to take me to the beach. The water is so blue. Like tropical island blue. I swim out under the waves and freestyle back and forth parallel to the sand. Everything is normal out here. The waves are strong. Their power is comforting. I like the reassurance that there are things stronger than me.
At home I'm tired. Completely emotionally exhausted and I can't think any further ahead than the next fifteen minutes. But I feel confident. Jon has downloaded the scans and reckons they look alright. I have breast cancer and that's becoming normal. I'm okay.
I sat down in one of those big blood test chairs. The man comes over and says "I'm just going to give you a radioactive injection. It's not a dye, so it won't hurt". "Ok". "You'll need to come back in two hours for the scan".
The two hours pass quickly. I'm having the best day spending time with Jon. Until I'm not. He's not even aloud into the building because of covid. I lie down in something like a big sandwich press. He explains this test will go for fifteen minutes. He slides me under the top lid. It's just a few centremetres above my nose. I think of Callum. He gets claustrophobic in the caravan bunk bed. He would hate this. I realise that if I wanted to get up I couldn't. I tell my self over and over that I'm not claustrophobic. It's hard. I also have a mask on because of covid. I get the sensation that I might panic. So I close my eyes and imagine that I'm swimming. I'm swimming. I'm swimming. I'm swimming. I just keep saying it and picturing the river and my friends swimming alongside me. I can picture their strokes and who wears which colour cap. I breath and I keep swimming. When I settle, I open my eyes and see that the top lid of the sandwich press has moved down to my chin. I'm looking at the ceiling. It's the same air conditioning vent. The square one. This one has a dirty old piece of sticky tape flapping around. I can also see the screen and know that I have seven minutes to go. The next test is in a different room. Another square air con vent and another piece of dirty sticky tap. I guess the tape has something to do with the vent rather than being left over from holding up Christmas decorations. This test is the one you see on tv. The one in the round tube. There's a tiny little radioactive sign above my face that I can see when I slide in and out of the big circle. That can't be healthy. There's one more test with a machine that moves from side to side around me while I stay still, and then a few like xrays. The man asks me where I swim. I don't remember telling him that I swim. I must have. I say "in the river at Minnamurra", he says "aren't there sharks in there". I reply a bit bluntly "I've never seen one". He's not sure when I'll get the results from the Doctor, but says there's an app.
I've asked Jon to take me to the beach. The water is so blue. Like tropical island blue. I swim out under the waves and freestyle back and forth parallel to the sand. Everything is normal out here. The waves are strong. Their power is comforting. I like the reassurance that there are things stronger than me.
At home I'm tired. Completely emotionally exhausted and I can't think any further ahead than the next fifteen minutes. But I feel confident. Jon has downloaded the scans and reckons they look alright. I have breast cancer and that's becoming normal. I'm okay.
9th January 2021
I feel like a fraud.
I have no pain nor any discomfort. The shock of the diagnosis is over, and the tests are complete for now, so what do I do?
My friends are delivering meals to someone who has spent the day at the river kayaking. Tomorrow I'll swim in the Gerringong community swim off the southern end of Werri beach. And I guess I should go to work this week. How long will this good bit last? Is the hard bit already over? Am I going to get sick? Will I loose my hair? Will the surgery results be good?
He said I'd need chemotherapy. He said the cancer was grade 3 and aggressive. So I guess I just take these days and do what I please.
All day I'm caught up in what I'm doing. Most of the time I completely forget that I have cancer. Sometimes I stop to see if the lump is even still there. It is. I can feel it. I can't do anything about it today but give myself and our kids some kind of normal.
I feel like a fraud.
I have no pain nor any discomfort. The shock of the diagnosis is over, and the tests are complete for now, so what do I do?
My friends are delivering meals to someone who has spent the day at the river kayaking. Tomorrow I'll swim in the Gerringong community swim off the southern end of Werri beach. And I guess I should go to work this week. How long will this good bit last? Is the hard bit already over? Am I going to get sick? Will I loose my hair? Will the surgery results be good?
He said I'd need chemotherapy. He said the cancer was grade 3 and aggressive. So I guess I just take these days and do what I please.
All day I'm caught up in what I'm doing. Most of the time I completely forget that I have cancer. Sometimes I stop to see if the lump is even still there. It is. I can feel it. I can't do anything about it today but give myself and our kids some kind of normal.
10th January 2021
I feel the barnacles scrape the bottom of my foot as I dive off the rocks over the top of an incoming wave. I hope I've timed it right. I swim away from the rocks before the next wave has a chance to push me backwards. I hope I've done it neatly because there are a lot of people watching. Simon steps up and stands on the edge and tells people when to dive. He's suggested a community swim today and far more than the usual group of Werri Point Swimmers have turned up. I'm out further than everyone else, and as I wait, I sense the water go darker underneath me. I'm treading water in a giant bait ball. Each fish is about the length of my arm. I dive down in an attempt to swim amongst them. I'm in awe of the way they move together and wonder if there is just one fish that determines their direction. I wait for more swimmers to enter the water. There is a sense of excitement from the first timers, pride from the locals, and slight concern from the surf rescue team who diligently scan their eyes from one swimmer to the next. I start to swim, and just like the bait ball, we start to swim together. We're not racing. There's no competition. Those who feel confident keep looking around and checking that everyone else around them is okay. We all swim different distances. Each of us making our own 90° turns towards the sand, which in the end, scatters us at different places along the beach. I wander back around to the starting point tempted to have another turn but alone. Instead I watch a group that have swum back to the rocks. I watch them, wanting to learn how they use the ocean to propel themselves back onto the rocks without a scatch. I'm a competent swimmer but these guys know their patch of the east coast.It's not yet 9am. Everyone disperses back to their lives and to their Sunday mornings. Thanks to the Werri Point Swimmers, we all have a memory to draw back on.
I feel the barnacles scrape the bottom of my foot as I dive off the rocks over the top of an incoming wave. I hope I've timed it right. I swim away from the rocks before the next wave has a chance to push me backwards. I hope I've done it neatly because there are a lot of people watching. Simon steps up and stands on the edge and tells people when to dive. He's suggested a community swim today and far more than the usual group of Werri Point Swimmers have turned up. I'm out further than everyone else, and as I wait, I sense the water go darker underneath me. I'm treading water in a giant bait ball. Each fish is about the length of my arm. I dive down in an attempt to swim amongst them. I'm in awe of the way they move together and wonder if there is just one fish that determines their direction. I wait for more swimmers to enter the water. There is a sense of excitement from the first timers, pride from the locals, and slight concern from the surf rescue team who diligently scan their eyes from one swimmer to the next. I start to swim, and just like the bait ball, we start to swim together. We're not racing. There's no competition. Those who feel confident keep looking around and checking that everyone else around them is okay. We all swim different distances. Each of us making our own 90° turns towards the sand, which in the end, scatters us at different places along the beach. I wander back around to the starting point tempted to have another turn but alone. Instead I watch a group that have swum back to the rocks. I watch them, wanting to learn how they use the ocean to propel themselves back onto the rocks without a scatch. I'm a competent swimmer but these guys know their patch of the east coast.It's not yet 9am. Everyone disperses back to their lives and to their Sunday mornings. Thanks to the Werri Point Swimmers, we all have a memory to draw back on.
11th January 2021
My jaw is sore. I realise that I've been clenching it for the last little while. Mostly I'm brave. Right now I'm not. My chest feels tight and I don't feel like I can get enough air. I can't get my breath out before I need to breathe in. I try to slow it down. I don't want this. I can't do it. I want it all to go away. I want my normal future outlook back. "Jon, I can't do it". "Yes you can. Yes you can".
My body clock has somehow changed to wake up at 4am. It's been like this all week now. I don't know which bit is making me tried. The 4am starts. The strength that it takes to be brave or those tiny cancerous cells. More likely it's the extra swimming, the abseiling and staying up late in front of the camp fire.
What is normal anyway.
Fear.
'Fear is an emotion caused by the threat of danger, pain or harm'. Fear keeps us safe. Fear made me go and get a referral for a mammogram. Fear makes sure I double check the anchors on an abseil. Fear makes me swim back closer to others instead of staying to play in the middle of a bait ball.
Fear gets a bad rap. It's really just trying to be helpful.
My jaw is sore. I realise that I've been clenching it for the last little while. Mostly I'm brave. Right now I'm not. My chest feels tight and I don't feel like I can get enough air. I can't get my breath out before I need to breathe in. I try to slow it down. I don't want this. I can't do it. I want it all to go away. I want my normal future outlook back. "Jon, I can't do it". "Yes you can. Yes you can".
My body clock has somehow changed to wake up at 4am. It's been like this all week now. I don't know which bit is making me tried. The 4am starts. The strength that it takes to be brave or those tiny cancerous cells. More likely it's the extra swimming, the abseiling and staying up late in front of the camp fire.
What is normal anyway.
Fear.
'Fear is an emotion caused by the threat of danger, pain or harm'. Fear keeps us safe. Fear made me go and get a referral for a mammogram. Fear makes sure I double check the anchors on an abseil. Fear makes me swim back closer to others instead of staying to play in the middle of a bait ball.
Fear gets a bad rap. It's really just trying to be helpful.
12th January 2021
The water is clear and it's new goggles day. Every swimmer loves new goggles day. The day when you break open the packet, peel off the protective stickers and swim with clarity and no fog. Four kilometres later and you're back to smearing them with baby shampoo before each swim, so new goggles day is a day to be enjoyed.
It's a high 1.8m tide. The tiny fish dart away from me when I startle them. The tide is on it's way out, so I can see the weed picking up speed underneath me as I cross the river and the weed heads out towards the ocean. It's hot, and a relief to enter back into the river water after walking along the beach. Under my arm is hurting. It's a bit off putting. I'm not used to feeling any discomfort when I'm swimming. I set it aside and swim solidly alongside Wayne. I can hear the strong beat of my kick and I can see the patterns that the wispy clouds make when I turn my head to breathe. I'm comfortable again. I drop off Wayne's pace and relax until I turn towards the boat ramp and have to change gear and push hard against the tide to make it to the edge.
I'm strong in the water. I'm working on being just as strong out of it.
The water is clear and it's new goggles day. Every swimmer loves new goggles day. The day when you break open the packet, peel off the protective stickers and swim with clarity and no fog. Four kilometres later and you're back to smearing them with baby shampoo before each swim, so new goggles day is a day to be enjoyed.
It's a high 1.8m tide. The tiny fish dart away from me when I startle them. The tide is on it's way out, so I can see the weed picking up speed underneath me as I cross the river and the weed heads out towards the ocean. It's hot, and a relief to enter back into the river water after walking along the beach. Under my arm is hurting. It's a bit off putting. I'm not used to feeling any discomfort when I'm swimming. I set it aside and swim solidly alongside Wayne. I can hear the strong beat of my kick and I can see the patterns that the wispy clouds make when I turn my head to breathe. I'm comfortable again. I drop off Wayne's pace and relax until I turn towards the boat ramp and have to change gear and push hard against the tide to make it to the edge.
I'm strong in the water. I'm working on being just as strong out of it.
13th January 2021
WARNING: This content may distress some readers.
😂.
No really, mum, maybe give this one a miss.
😬.
I manage to hang up the last of the socks before I kneel down under the clothesline and put my head on the grass. I've got to let it out. The tears start easily and before long there is noisy sobbing and there is snot involved. I allow myself to cry unreservedly until a little voice says "mummy, why are you crying? I don't like it when you cry". I pull her close to my chest and we cuddle until she ends up sitting on my tummy while I lay on the ground. I tell her that "I'm a bit scared and that crying sometimes makes you feel better". We've been working on decorating a cushion together. A project that we can work on, as well as something that I can hold on to when I need to be brave, I needed it today. She eventually says "Mum, go and sort yourself out. You're at least going to have to go and put some sunglasses on".
Without the guilt of thinking that I should be doing something constructive, I set up our hammock and lay there with my head resting on my new cushion, the gentle breeze quietly rocking me until I'm almost asleep.
Some of my team members turn up and do what I need them to do. I'm not doing this by myself. I can be as brave or as terrified as I like today.
WARNING: This content may distress some readers.
😂.
No really, mum, maybe give this one a miss.
😬.
I manage to hang up the last of the socks before I kneel down under the clothesline and put my head on the grass. I've got to let it out. The tears start easily and before long there is noisy sobbing and there is snot involved. I allow myself to cry unreservedly until a little voice says "mummy, why are you crying? I don't like it when you cry". I pull her close to my chest and we cuddle until she ends up sitting on my tummy while I lay on the ground. I tell her that "I'm a bit scared and that crying sometimes makes you feel better". We've been working on decorating a cushion together. A project that we can work on, as well as something that I can hold on to when I need to be brave, I needed it today. She eventually says "Mum, go and sort yourself out. You're at least going to have to go and put some sunglasses on".
Without the guilt of thinking that I should be doing something constructive, I set up our hammock and lay there with my head resting on my new cushion, the gentle breeze quietly rocking me until I'm almost asleep.
Some of my team members turn up and do what I need them to do. I'm not doing this by myself. I can be as brave or as terrified as I like today.
14th January 2021
I'm thankful for the breeze that is making the tips of my blue and purple hair sweep across my face. (It said on the packet one wash. Its now been five washes and four swims. It's not coming out. I kind of like it anyway and Erin had a lovely time putting it there). It's a muggy summers day so without the breeze, it wouldn't be as pleasant sitting on the Macdonaldtown train station. I've just seen my reflection in the train door as I waited to step off and onto the platform. What I saw was a strong young woman. She looks fit and healthy and happy. Four trains go past every minute here. Callum's enthusiasm rubs off on me. I'm looking forward to seeing the construction at Central and hoping that we get to spot something other than a Waratah. I like Waratahs but they're a very common train. Erin is at a friend's house and I've got some happy pictures of Liam on Dad's boat.
Jon is probably the most relieved of all of us, and I can hear it in his voice when I tell him that the Doctor has just called to let me know that my bone scan is all clear except for some developing arthritis. He had downloaded the scans on Friday. I couldn't bear to look at them myself. He told me that there was nothing to see. For five days he has held it together and not mentioned the dark irregularities that he could see in my elbow, knee and pinky finger. On this side of the news, I can tell him that my elbow is sore from swimming. I hurt my knee skiing in Colorado and I remember a time when I slammed my pinky in the car door. Before the phone call I would've been convinced that the scans were showing that the cancer had gone to my bones and I only had months to live. He knows me well. He knows what I need.
My swim this morning was beautiful. Callum had suggested that the best place to be on a hot day was in an air conditioned Sydney Train. I said that I'd take him, but only if I got a swim in first. He had to agree. He knows it's still a good deal.
I went to take off when Wayne yelled out "hey don't cheat". We've made a new rule that you have to swim around the poles even if the tide is coming in strong. I stand back up, choose an angle, and go for it. I grit my teeth. "Come on, come on, come on". But the water is too powerful. I back up so I don't get wrapped around the oyster covered pole. I try to swim between the poles instead. But there's no beating the ocean today. Wayne backs off too. I'm laughing. At least we tried. Peter and Richard are just shaking their heads at us. Brian and Mark are already well and truly up the river. I can't escape the thoughts of my impending bone scan results. My elbow is killing me as I swim. I think about that sentence literally. We've enjoyed some dark humor recently but that one doesn't make me smile. It hurts more as we continue under the train bridge and towards the ramp. I'm glad that it's hurting more when I'm freestyling. I'm taking it as a good sign. That it's something to do with repetitive strain. I'm ready for the doctor's call.
Yesterday I was overwhelmed with my situation. Today I feel like there's not much wrong with me. Just a little lump to remove, and a bit of chemo on the side. I'm happy. I can manage today. I see the B23 Waratah as it goes past on it's way to Leppington via Strathfield and the B9 in the other direction towards the City Circle. The Silver V sets are on the far line and the XPT is due in 25.
I'm thankful for the breeze that is making the tips of my blue and purple hair sweep across my face. (It said on the packet one wash. Its now been five washes and four swims. It's not coming out. I kind of like it anyway and Erin had a lovely time putting it there). It's a muggy summers day so without the breeze, it wouldn't be as pleasant sitting on the Macdonaldtown train station. I've just seen my reflection in the train door as I waited to step off and onto the platform. What I saw was a strong young woman. She looks fit and healthy and happy. Four trains go past every minute here. Callum's enthusiasm rubs off on me. I'm looking forward to seeing the construction at Central and hoping that we get to spot something other than a Waratah. I like Waratahs but they're a very common train. Erin is at a friend's house and I've got some happy pictures of Liam on Dad's boat.
Jon is probably the most relieved of all of us, and I can hear it in his voice when I tell him that the Doctor has just called to let me know that my bone scan is all clear except for some developing arthritis. He had downloaded the scans on Friday. I couldn't bear to look at them myself. He told me that there was nothing to see. For five days he has held it together and not mentioned the dark irregularities that he could see in my elbow, knee and pinky finger. On this side of the news, I can tell him that my elbow is sore from swimming. I hurt my knee skiing in Colorado and I remember a time when I slammed my pinky in the car door. Before the phone call I would've been convinced that the scans were showing that the cancer had gone to my bones and I only had months to live. He knows me well. He knows what I need.
My swim this morning was beautiful. Callum had suggested that the best place to be on a hot day was in an air conditioned Sydney Train. I said that I'd take him, but only if I got a swim in first. He had to agree. He knows it's still a good deal.
I went to take off when Wayne yelled out "hey don't cheat". We've made a new rule that you have to swim around the poles even if the tide is coming in strong. I stand back up, choose an angle, and go for it. I grit my teeth. "Come on, come on, come on". But the water is too powerful. I back up so I don't get wrapped around the oyster covered pole. I try to swim between the poles instead. But there's no beating the ocean today. Wayne backs off too. I'm laughing. At least we tried. Peter and Richard are just shaking their heads at us. Brian and Mark are already well and truly up the river. I can't escape the thoughts of my impending bone scan results. My elbow is killing me as I swim. I think about that sentence literally. We've enjoyed some dark humor recently but that one doesn't make me smile. It hurts more as we continue under the train bridge and towards the ramp. I'm glad that it's hurting more when I'm freestyling. I'm taking it as a good sign. That it's something to do with repetitive strain. I'm ready for the doctor's call.
Yesterday I was overwhelmed with my situation. Today I feel like there's not much wrong with me. Just a little lump to remove, and a bit of chemo on the side. I'm happy. I can manage today. I see the B23 Waratah as it goes past on it's way to Leppington via Strathfield and the B9 in the other direction towards the City Circle. The Silver V sets are on the far line and the XPT is due in 25.
15th January 2021
I close the window of the excel document that I've been working on and immediately forget the next thing that I have to do. This continues to happen all day. I have a reputation for being efficient, sometimes too efficient, but today everything is taking me ages. The last time I was here was before my biopsy results came back. I'd left little post it notes on everything just in case someone else had to step in and do my job. I'm grateful for the prompts and I work through each task. Next is filling out the burials register. The book is more than one hundred years old. It looks that old too, like when you brown the paper with a tea bag for a primary school assignment, and it smells like a museum. After a funeral, I usually fill in the details and pop it back into the church cupboard. It's often with a smile and a beautiful memory of an elderly person from our town who has passed away. A few weeks ago it was Mrs Comp. She was 99 and had continued to serve up morning tea at play group until she was 96 when it got a little too much for her. I'd never thought about my name ever going into the burial register before. The thought had never crossed my mind that one day I'll be listed in a burial register. I pause and wonder if it will be this one. The one I've been filling out for the past five years. The thought doesn't make me sad, it just hits me in the stomach and I loose my breath for a bit. I don't think breast cancer is going to kill me. I don't feel like I'm dying. That's the weirdest thing. Apart from the emotional toll that this is taking, I'm fine. I don't feel sick. I'm not in pain. I'm not dying more than anyone else around me who is ageing. But I'm the one that people are making meals for. The list for ten nights of meals after my surgery date filled up with offers within a few hours. It makes me feel supported and even stronger. I'll be able to focus on recovery and Jon will be able to care for me without having to worry about dinner.
I slide my hand down under my pajama top to make sure that I haven't just imagined the whole thing. It's still there. The lump feels hard and about the size of a pea. It's close to my skin.
Somehow yesterday I got into a counselling session with our butcher. It's actually not an odd situation for anyone who lives in Robbo. Our butcher is wise and knows what's important in life. If you need to talk, you can go and see Darryl. The conversation moved to breasts and their usefulness during child bearing and that once that's done they're just a piece of meat that can be chopped off. Many people have used these terms over the past week but it has never seemed quite as confronting whilst sitting on the lounge with the butcher in the butcher's shop surrounded by chicken breast and pieces of raw lamb and beef. I find the whole situation amusing. I leave knowing that our whole community will help with our family's needs, for as long as it takes.
I close the window of the excel document that I've been working on and immediately forget the next thing that I have to do. This continues to happen all day. I have a reputation for being efficient, sometimes too efficient, but today everything is taking me ages. The last time I was here was before my biopsy results came back. I'd left little post it notes on everything just in case someone else had to step in and do my job. I'm grateful for the prompts and I work through each task. Next is filling out the burials register. The book is more than one hundred years old. It looks that old too, like when you brown the paper with a tea bag for a primary school assignment, and it smells like a museum. After a funeral, I usually fill in the details and pop it back into the church cupboard. It's often with a smile and a beautiful memory of an elderly person from our town who has passed away. A few weeks ago it was Mrs Comp. She was 99 and had continued to serve up morning tea at play group until she was 96 when it got a little too much for her. I'd never thought about my name ever going into the burial register before. The thought had never crossed my mind that one day I'll be listed in a burial register. I pause and wonder if it will be this one. The one I've been filling out for the past five years. The thought doesn't make me sad, it just hits me in the stomach and I loose my breath for a bit. I don't think breast cancer is going to kill me. I don't feel like I'm dying. That's the weirdest thing. Apart from the emotional toll that this is taking, I'm fine. I don't feel sick. I'm not in pain. I'm not dying more than anyone else around me who is ageing. But I'm the one that people are making meals for. The list for ten nights of meals after my surgery date filled up with offers within a few hours. It makes me feel supported and even stronger. I'll be able to focus on recovery and Jon will be able to care for me without having to worry about dinner.
I slide my hand down under my pajama top to make sure that I haven't just imagined the whole thing. It's still there. The lump feels hard and about the size of a pea. It's close to my skin.
Somehow yesterday I got into a counselling session with our butcher. It's actually not an odd situation for anyone who lives in Robbo. Our butcher is wise and knows what's important in life. If you need to talk, you can go and see Darryl. The conversation moved to breasts and their usefulness during child bearing and that once that's done they're just a piece of meat that can be chopped off. Many people have used these terms over the past week but it has never seemed quite as confronting whilst sitting on the lounge with the butcher in the butcher's shop surrounded by chicken breast and pieces of raw lamb and beef. I find the whole situation amusing. I leave knowing that our whole community will help with our family's needs, for as long as it takes.
16th January 2021
Is that cancer? The dizziness and fatigue. Or is that the normal effect of trying to fill up school holidays with fun, in an attempt to make it have as little impact as possible on our kids. I'm not one to lie down during the afternoon but I have to today. It makes me feel lazy so I get up and try and help with building the retaining wall. I move two rocks and then return to the lounge.
I sit with Callum and cover his school books. The smell of new books and plastic creates anticipation of a fresh school year, but what will I put him through this year. How much will our children suffer.
Earlier, all of us had squeezed into the five seater Lancer. We're usually able to spread out over seven seats so that no one can poke each other. Today I would rather sit in the middle of the back seat than in the front, in the hope of preventing any squabbles. It turns out to be a bonus for me, I get to enjoy the physical closeness of being squashed in between the boys. Erin is invited to sit in the front because one of her siblings had put a cicada shell in her hair and she is still recovering from the experience. Liam puts his head on me and regularly turns his head and kisses my shoulder through my t-shirt all the way home.
We've spent the morning in the bush with friends. Good friends. The ones that you don't see for more than a year but their company is easy and instantly familiar and comfortable. The Australian bush is full of new growth after last year's fires. I can't help but compare my impending experience with the burnt trees. They're a year ahead of me. Their trunks are still showing their scars but their new growth is sprouting from everywhere. It's fresh and green and alive. They're beautiful. Even though you can still see what they've been through, their determination bursts from each new leaf. They are images of hope, and in the end, will have more branches than they did before.
Is that cancer? The dizziness and fatigue. Or is that the normal effect of trying to fill up school holidays with fun, in an attempt to make it have as little impact as possible on our kids. I'm not one to lie down during the afternoon but I have to today. It makes me feel lazy so I get up and try and help with building the retaining wall. I move two rocks and then return to the lounge.
I sit with Callum and cover his school books. The smell of new books and plastic creates anticipation of a fresh school year, but what will I put him through this year. How much will our children suffer.
Earlier, all of us had squeezed into the five seater Lancer. We're usually able to spread out over seven seats so that no one can poke each other. Today I would rather sit in the middle of the back seat than in the front, in the hope of preventing any squabbles. It turns out to be a bonus for me, I get to enjoy the physical closeness of being squashed in between the boys. Erin is invited to sit in the front because one of her siblings had put a cicada shell in her hair and she is still recovering from the experience. Liam puts his head on me and regularly turns his head and kisses my shoulder through my t-shirt all the way home.
We've spent the morning in the bush with friends. Good friends. The ones that you don't see for more than a year but their company is easy and instantly familiar and comfortable. The Australian bush is full of new growth after last year's fires. I can't help but compare my impending experience with the burnt trees. They're a year ahead of me. Their trunks are still showing their scars but their new growth is sprouting from everywhere. It's fresh and green and alive. They're beautiful. Even though you can still see what they've been through, their determination bursts from each new leaf. They are images of hope, and in the end, will have more branches than they did before.
17th January 2021
The rocks are uncomfortable under my bare feet as we walk out along the breakwall. They're uneven and set in concrete that has chipped and broken away.
I put my toes on the very edge with my back to the water like I'm some kind of Olympic diver going for glory. I bend my knees to push off, throw my arms up above my head, and arch my back as I dive backwards into the harbour. The water is deep and clear. It softly catches me. I desperately still want to be the fun mum and I feel like I'm running out of days. It'll only be for a time, but I don't know if that time will be long or short. How capable will I be? How patient with our children? Will it be a tiny blip that in time everyone forgets, or will my new identity be "the mum with cancer".
A new friend suggests a race back to the sand. She also suggests that it should be butterfly. I like her already. I agree, because win or loose, I love a competition. We start and I can feel my body move through the water with rhythm and with ease. The timing of my arms and legs comes without a thought. The methodical beat of my dolphin kick propels me forwards through the salty water which is helping my buoyancy.
My boob is hurting. (Erin says that I'm not allowed to say boob. "Breast is what you're meant to call it mum. Or a bazooka").
There are times when I forget about my diagnosis. Remembering again is still a heavy blow. The pain in my breast brings it back to the front of my mind. I ease off my speed and settle into a slower rhythm, breathing every stroke instead of every second one. I slow down not because of the pain but because I'm clearly ahead. If there was still a contest, the pain would've been set to the side while I battled on.
I have a battle ahead, but I like a competition and this one is a team sport. It's me, the doctors and specialists, family and friends, and the town of Robertson verses an 18 millimetre bunch of cells. There is no way they're going to beat us.
The rocks are uncomfortable under my bare feet as we walk out along the breakwall. They're uneven and set in concrete that has chipped and broken away.
I put my toes on the very edge with my back to the water like I'm some kind of Olympic diver going for glory. I bend my knees to push off, throw my arms up above my head, and arch my back as I dive backwards into the harbour. The water is deep and clear. It softly catches me. I desperately still want to be the fun mum and I feel like I'm running out of days. It'll only be for a time, but I don't know if that time will be long or short. How capable will I be? How patient with our children? Will it be a tiny blip that in time everyone forgets, or will my new identity be "the mum with cancer".
A new friend suggests a race back to the sand. She also suggests that it should be butterfly. I like her already. I agree, because win or loose, I love a competition. We start and I can feel my body move through the water with rhythm and with ease. The timing of my arms and legs comes without a thought. The methodical beat of my dolphin kick propels me forwards through the salty water which is helping my buoyancy.
My boob is hurting. (Erin says that I'm not allowed to say boob. "Breast is what you're meant to call it mum. Or a bazooka").
There are times when I forget about my diagnosis. Remembering again is still a heavy blow. The pain in my breast brings it back to the front of my mind. I ease off my speed and settle into a slower rhythm, breathing every stroke instead of every second one. I slow down not because of the pain but because I'm clearly ahead. If there was still a contest, the pain would've been set to the side while I battled on.
I have a battle ahead, but I like a competition and this one is a team sport. It's me, the doctors and specialists, family and friends, and the town of Robertson verses an 18 millimetre bunch of cells. There is no way they're going to beat us.
Photo cred: Jim Wilson
18th January 2021
I'm feeling all capable and motherly, because for the first time in days I'm preparing food for our kids (not because I haven't been able to, but because everyone else has been doing it for me).
*Okay, let's be honest. I haven't had the slightest desire to deal with catering. By 6pm, I want to go to sleep.
One of them doesn't want their egg on their toast, they want it on the side, unlike how I've 'plated it up' (thanks for your influence Masterchef Australia). Another won't even taste the fruit smoothie that I've presented in a tall sparkling clean glass. I'm just like every other mum today. It's ordinary life here. I'm sure every family is dealing with the wrestle of screen time and avoiding the need to go and buy new school shoes. Erin is "air pinching" Liam, and I'm becoming aware that although there is no contact and it causes no pain, it is more annoying than Liam can bear. It escalates into ordinary sibling behavior.
I realise that I've just cracked the egg into the compost bin instead of into the date loaf mix, my culinary skills are ordinary too.
Today is ordinary. And I'm grateful for every second of it.
And I bought school shoes online.
I'm feeling all capable and motherly, because for the first time in days I'm preparing food for our kids (not because I haven't been able to, but because everyone else has been doing it for me).
*Okay, let's be honest. I haven't had the slightest desire to deal with catering. By 6pm, I want to go to sleep.
One of them doesn't want their egg on their toast, they want it on the side, unlike how I've 'plated it up' (thanks for your influence Masterchef Australia). Another won't even taste the fruit smoothie that I've presented in a tall sparkling clean glass. I'm just like every other mum today. It's ordinary life here. I'm sure every family is dealing with the wrestle of screen time and avoiding the need to go and buy new school shoes. Erin is "air pinching" Liam, and I'm becoming aware that although there is no contact and it causes no pain, it is more annoying than Liam can bear. It escalates into ordinary sibling behavior.
I realise that I've just cracked the egg into the compost bin instead of into the date loaf mix, my culinary skills are ordinary too.
Today is ordinary. And I'm grateful for every second of it.
And I bought school shoes online.
19th January 2021
I sit down and do exactly as I'm asked. It starts to get dark as I drift away. I can only see tiny little lights in rows above my head. And then my stomach drops as I fall into complete darkness.
*My general anesthetic isn't for two more days. Right now I'm on the Taipan at Jamberoo Action Park.
I reach over and hold Arkie's hand just in case she still looks as terrified as when she sat down next to me in the rubber tube. I don't know what her facial expression is now as we whizz down the big dark pipe. She's not making a noise but the rest of us are. We're laughing and squealing as we swish from side to side and get splashed in our faces. Arkie is brave, and by the end of the day she's confidently sliding down the same ride over and over without a care. I need to be like Arkie and just deal with one terrifying moment at a time.
The unknown is terrifying. Once Arkie knew what to expect, she could manage. She could cope with the darkness. She knew that there would be twists and turns that threw her body from one side to the other. She knew that if she just held on tight, it would be over and she would pop out of the tunnel. I hope I'm as brave as Arkie.
I sit down and do exactly as I'm asked. It starts to get dark as I drift away. I can only see tiny little lights in rows above my head. And then my stomach drops as I fall into complete darkness.
*My general anesthetic isn't for two more days. Right now I'm on the Taipan at Jamberoo Action Park.
I reach over and hold Arkie's hand just in case she still looks as terrified as when she sat down next to me in the rubber tube. I don't know what her facial expression is now as we whizz down the big dark pipe. She's not making a noise but the rest of us are. We're laughing and squealing as we swish from side to side and get splashed in our faces. Arkie is brave, and by the end of the day she's confidently sliding down the same ride over and over without a care. I need to be like Arkie and just deal with one terrifying moment at a time.
The unknown is terrifying. Once Arkie knew what to expect, she could manage. She could cope with the darkness. She knew that there would be twists and turns that threw her body from one side to the other. She knew that if she just held on tight, it would be over and she would pop out of the tunnel. I hope I'm as brave as Arkie.
20th January 2021
"Mum, I don't want to sound rude, but you're much better at listening now than you ever were before".
I guess that's something. It's a big thing. And I hope it doesn't fade over time.
Today feels like the end of my life as I know it. Although, I don't pack up my desk like I'm going on extended leave this time. I leave it as if I'll be back in a week. Maybe I will be. I don't know. I don't know what post surgery recovery will be like. I don't know if I'll have to have another operation. I don't know when the chemo starts. I don't know how long treatment will be for.
"Mum, I don't want you to be sick on my birthday because I don't know how that will work".
I don't have space to be nervous about tomorrow. Tonight I'm the mum. Tonight I'm the one doing the reassuring as truthfully as I can. I can be the brave one tonight because I didn't have to think about dinner. I don't have to hold myself up because I have a profuse amount of messages from friends telling me of their support. I know that I could ask any one of them for help when I need it at any time.
I gently try to slide out of Erin's bed, hoping that she's finally fallen asleep. She hasn't. We go back to breathing exercises to try and settle her bouts of panic.
Finally I'm in the shower scrubbing myself with the pre operative wash and a brand new sponge that I've been kindly gifted today. My breast hurts to touch and the tenderness extends down my under arm. It's been thirty one days since I sat down and felt a lump. Twenty two days since I had an ultrasound and biopsy and fifteen days since I was told that I had breast cancer. I'm relieved that those days have all passed. I'm glad that I'm this far in, and I'm not starting from the beginning.
My engagement ring sparkles under the running water and I remember that I have to take my jewelry off for surgery. I dry myself off and stand in front of my wardrobe. What do I wear tomorrow? I've now got enough life experience to know that a gynecologist never even sees that you've worn your best undies, and you don't wear a dress for a mammogram. Tomorrow I'll just need to be comfy and have a button up shirt.
I'm sleepy. I managed to fill up my afternoon by cleaning my friends car that I've borrowed for the past two weeks. It gave me something to concentrate on. Something that I could see what I'd accomplished when I'd finished. I hope that the majority of the fine sand that I vacuumed up was from her kids feet rather than mine.
I'm tired. I'm not worried. I'm confident of a peaceful sleep.
Erin didn't last in her own bed. Jon tucked her into a sleeping bag on a camping mat next to our bed on the floor. She says "it's not fair. I didn't even get to tell my friends that you have cancer. They already know, and they don't say the right things".
Before she falls asleep, while I'm sqeezing her hand, I explain to her that it's very tricky for our friends to say the right thing. They care about us very much but they don't know if we feel like crying or laughing. They don't know if we feel like playing or sitting quietly. They really really want to say the right thing but the right thing for us keeps changing so it's very hard.
I think back to when I was on the other side of something like this (actually something much worse than this). I managed to say the wrong thing most of the time, but I can still clearly remember my worst offence. Zoe, at twenty two, had just lost her husband after two months of marriage, in a motorbike accident. She messaged me one night, only days later, to come and remove a huntsman spider from her ceiling. After a lot of laughter and girly squealing as it moved it's big hairy legs, we had it inside a jar. We took it outside. She said "how are we going to get rid of it" and I replied "we could put it on the road in front of oncoming traffic". I immediately was grateful that it was dark. I squeezed my eyes shut and I felt my cheeks burn in regret. Her husband had just been killed by oncoming traffic and without thinking, I had jokingly suggested the same death for the spider. Embarrassment washed over me and I hoped that she didn't realise what I'd just said.
Recently I asked her if she remembered what I said that night. She remembers the laughing and she remembers my determination to help get rid of the spider. She doesn't have any memory of my thoughtless comment.
When this is over, none of us will remember the conversation slip ups. We'll remember your presence and your willingness to help. We might even look back with laughter about something that you accidentally said. Or the text where you wished me 'bog love'. There is no right thing to say and words are rarely the important bit.
"Mum, I don't want to sound rude, but you're much better at listening now than you ever were before".
I guess that's something. It's a big thing. And I hope it doesn't fade over time.
Today feels like the end of my life as I know it. Although, I don't pack up my desk like I'm going on extended leave this time. I leave it as if I'll be back in a week. Maybe I will be. I don't know. I don't know what post surgery recovery will be like. I don't know if I'll have to have another operation. I don't know when the chemo starts. I don't know how long treatment will be for.
"Mum, I don't want you to be sick on my birthday because I don't know how that will work".
I don't have space to be nervous about tomorrow. Tonight I'm the mum. Tonight I'm the one doing the reassuring as truthfully as I can. I can be the brave one tonight because I didn't have to think about dinner. I don't have to hold myself up because I have a profuse amount of messages from friends telling me of their support. I know that I could ask any one of them for help when I need it at any time.
I gently try to slide out of Erin's bed, hoping that she's finally fallen asleep. She hasn't. We go back to breathing exercises to try and settle her bouts of panic.
Finally I'm in the shower scrubbing myself with the pre operative wash and a brand new sponge that I've been kindly gifted today. My breast hurts to touch and the tenderness extends down my under arm. It's been thirty one days since I sat down and felt a lump. Twenty two days since I had an ultrasound and biopsy and fifteen days since I was told that I had breast cancer. I'm relieved that those days have all passed. I'm glad that I'm this far in, and I'm not starting from the beginning.
My engagement ring sparkles under the running water and I remember that I have to take my jewelry off for surgery. I dry myself off and stand in front of my wardrobe. What do I wear tomorrow? I've now got enough life experience to know that a gynecologist never even sees that you've worn your best undies, and you don't wear a dress for a mammogram. Tomorrow I'll just need to be comfy and have a button up shirt.
I'm sleepy. I managed to fill up my afternoon by cleaning my friends car that I've borrowed for the past two weeks. It gave me something to concentrate on. Something that I could see what I'd accomplished when I'd finished. I hope that the majority of the fine sand that I vacuumed up was from her kids feet rather than mine.
I'm tired. I'm not worried. I'm confident of a peaceful sleep.
Erin didn't last in her own bed. Jon tucked her into a sleeping bag on a camping mat next to our bed on the floor. She says "it's not fair. I didn't even get to tell my friends that you have cancer. They already know, and they don't say the right things".
Before she falls asleep, while I'm sqeezing her hand, I explain to her that it's very tricky for our friends to say the right thing. They care about us very much but they don't know if we feel like crying or laughing. They don't know if we feel like playing or sitting quietly. They really really want to say the right thing but the right thing for us keeps changing so it's very hard.
I think back to when I was on the other side of something like this (actually something much worse than this). I managed to say the wrong thing most of the time, but I can still clearly remember my worst offence. Zoe, at twenty two, had just lost her husband after two months of marriage, in a motorbike accident. She messaged me one night, only days later, to come and remove a huntsman spider from her ceiling. After a lot of laughter and girly squealing as it moved it's big hairy legs, we had it inside a jar. We took it outside. She said "how are we going to get rid of it" and I replied "we could put it on the road in front of oncoming traffic". I immediately was grateful that it was dark. I squeezed my eyes shut and I felt my cheeks burn in regret. Her husband had just been killed by oncoming traffic and without thinking, I had jokingly suggested the same death for the spider. Embarrassment washed over me and I hoped that she didn't realise what I'd just said.
Recently I asked her if she remembered what I said that night. She remembers the laughing and she remembers my determination to help get rid of the spider. She doesn't have any memory of my thoughtless comment.
When this is over, none of us will remember the conversation slip ups. We'll remember your presence and your willingness to help. We might even look back with laughter about something that you accidentally said. Or the text where you wished me 'bog love'. There is no right thing to say and words are rarely the important bit.
21st January 2021
It's the same vent. I guess they're standard ones.
The radiographer explains what she's going to do. She asks Jon to hold my hand because it's going to be painful. She explains that there's no way to avoid the pain. A local anesthetic won't help the feeling of the radio active fluid travelling through my system. She inserts the needle but it falls out and she calls to her colleague, "I need another needle, the dye has just run down her boob". I guess the term 'boob' is a widely accepted term even in the medical profession, and Erin just needs to move on. She gets the second needle in and I wait. I wait for the sting and I'm ready to squeeze Jon's hand. But there's nothing. She says some people react differently than others. Jon says "oh well, at least you held my hand for a bit".
We turned up an hour late. The information that was given last night said that had to present at 9:30am. It was wrong. It was meant to be 8. I usually hate being late, but it doesn't bother me today. It meant we got to sit in the waiting room with a couple who talked about their grandkids and getting away to Batemans Bay in their van. I really hoped that they didn't ask what we were in for. I didn't want to upset them.
The radiographer starts the scans. I ask Jon "when is high tide", "3:07" he replies. And I start swimming. My mind can swim. I can breathe evenly like when I'm in the water. I can picture the bubbles and the stingrays. It's Thursday and exactly the time when I would usually be in the river with my friends. It's low tide now so we've walked across the sand bank rather than being able to swim across it. I dive under and relax into my stroke. I completely forget that I'm having a scan at all.
It's time to say goodbye to Jon. I'm so glad this situation isn't reversed. It would be much harder. I'm taken to the pre op room where I'm prepared for surgery. There's a clock on the wall that I'm looking directly at. I can subdue the panic by concentrating on the red second hand and breathing every 5 until I get to the red top. (My squad swimmers know about the red top. Sometimes I let them rest til the white 30 🤔). I'm asked to walk in to the busy theatre. I lie down and the anethesist, who's name is Liam and looks like a tradie, says "I'm just going to pop this in your arm to help you relax". Relax indeed. The circular lighting goes fuzzy and I'm out for the count.
The nausea builds when I wake and it takes me five hours to be able to keep my eyes open enough to hop into a wheel chair and get to Jon. I cry when I see him and I say "I don't feel well and my booby hurts". I don't need to be brave anymore now that I'm with him.
I'm dreading the pass. All day I've had comments about how I'd travelled all the way from Robertson and will I be staying the night? The Macquarie pass lies between me and our home and as carefully as Jon drives, the experience is horrendous. I've been up and down that mountain all my life and I've never felt like this. I manage to do a nice comfortably smooth spew with no chuncky bits in our back yard, it improves my well being immediately. I'm hurting but the nausea is gone. It's bearable. It's probably classed as discomfort rather than pain.
* * *
If you have used your time to read this, you have just helped me with large doses of pain relief. Describing my day has taken my mind of the uneasiness and away from the discomfort. I'm really very grateful that you would help me out in this way. Thank you 😊.
It's the same vent. I guess they're standard ones.
The radiographer explains what she's going to do. She asks Jon to hold my hand because it's going to be painful. She explains that there's no way to avoid the pain. A local anesthetic won't help the feeling of the radio active fluid travelling through my system. She inserts the needle but it falls out and she calls to her colleague, "I need another needle, the dye has just run down her boob". I guess the term 'boob' is a widely accepted term even in the medical profession, and Erin just needs to move on. She gets the second needle in and I wait. I wait for the sting and I'm ready to squeeze Jon's hand. But there's nothing. She says some people react differently than others. Jon says "oh well, at least you held my hand for a bit".
We turned up an hour late. The information that was given last night said that had to present at 9:30am. It was wrong. It was meant to be 8. I usually hate being late, but it doesn't bother me today. It meant we got to sit in the waiting room with a couple who talked about their grandkids and getting away to Batemans Bay in their van. I really hoped that they didn't ask what we were in for. I didn't want to upset them.
The radiographer starts the scans. I ask Jon "when is high tide", "3:07" he replies. And I start swimming. My mind can swim. I can breathe evenly like when I'm in the water. I can picture the bubbles and the stingrays. It's Thursday and exactly the time when I would usually be in the river with my friends. It's low tide now so we've walked across the sand bank rather than being able to swim across it. I dive under and relax into my stroke. I completely forget that I'm having a scan at all.
It's time to say goodbye to Jon. I'm so glad this situation isn't reversed. It would be much harder. I'm taken to the pre op room where I'm prepared for surgery. There's a clock on the wall that I'm looking directly at. I can subdue the panic by concentrating on the red second hand and breathing every 5 until I get to the red top. (My squad swimmers know about the red top. Sometimes I let them rest til the white 30 🤔). I'm asked to walk in to the busy theatre. I lie down and the anethesist, who's name is Liam and looks like a tradie, says "I'm just going to pop this in your arm to help you relax". Relax indeed. The circular lighting goes fuzzy and I'm out for the count.
The nausea builds when I wake and it takes me five hours to be able to keep my eyes open enough to hop into a wheel chair and get to Jon. I cry when I see him and I say "I don't feel well and my booby hurts". I don't need to be brave anymore now that I'm with him.
I'm dreading the pass. All day I've had comments about how I'd travelled all the way from Robertson and will I be staying the night? The Macquarie pass lies between me and our home and as carefully as Jon drives, the experience is horrendous. I've been up and down that mountain all my life and I've never felt like this. I manage to do a nice comfortably smooth spew with no chuncky bits in our back yard, it improves my well being immediately. I'm hurting but the nausea is gone. It's bearable. It's probably classed as discomfort rather than pain.
* * *
If you have used your time to read this, you have just helped me with large doses of pain relief. Describing my day has taken my mind of the uneasiness and away from the discomfort. I'm really very grateful that you would help me out in this way. Thank you 😊.
22nd January 2021
I've changed my mind. I've continually announced that I don't care if I end up having a double mastectomy. Turns out I do care. Not for the loss of my bazookas, but because if a tiny lump removal and a getting a few nodes out hurts like this then forget it. Worse than that, I've flippantly said that I can handle chemo. Nausea is actually far worse than pain. I'm done with this.
I started the day hard. Nana rang and told Erin not to wake me up. "Nana, she's outside making a pool". I lasted til 11am and then caved, accepted my situation for today, and then had a sleep. Jon also made me put those stockings things back on. I've got to pace myself. I've got to realise that it's okay to rest the day after surgery and maybe more days after that. Maybe the professionals were being serious about the 7-10 day recovery thing. They possibly know better.
I've changed my mind. I've continually announced that I don't care if I end up having a double mastectomy. Turns out I do care. Not for the loss of my bazookas, but because if a tiny lump removal and a getting a few nodes out hurts like this then forget it. Worse than that, I've flippantly said that I can handle chemo. Nausea is actually far worse than pain. I'm done with this.
I started the day hard. Nana rang and told Erin not to wake me up. "Nana, she's outside making a pool". I lasted til 11am and then caved, accepted my situation for today, and then had a sleep. Jon also made me put those stockings things back on. I've got to pace myself. I've got to realise that it's okay to rest the day after surgery and maybe more days after that. Maybe the professionals were being serious about the 7-10 day recovery thing. They possibly know better.
23rd January 7am
I can hear the fan click as it spins above my head. I've just slept for a solid nine hours. I move my right arm slightly and remember that today I'm going to be sensible. My biggest problem of the day will be the temperature above 30° and not being able to submerge myself as I usually would on a day like today. I'm sure I'll come up with some kind of solution.
* * *
The spider webs in our yard are glistening in the setting sun and the cool air is making me wish that I'd bought my quilt down to the hammock. The day wasn't as hot as predicted. A black cockatoo is screeching above me in one of our tall pine trees, I can hear other birds, insects, and multiple lawn mowers. Occasionally I hear a car head through town and for now the sounds of freight trains have subsided (the line via Robertson has been busy due to the track closure between Moss Vale and Yerrinbool).
Today I wasn't capable of making pools. I wasn't capable of much at all. A glance at the slip and slide made my eyes water and the thought of diving down it is incomprehensible. I've managed to lie in the hammock, move to the shade of the back yard, sit in the paddling pool, fall asleep in my bed and return to the hammock. I almost missed my friends visit during the sleep, but called her to ask if she would come back for a chat.
Dinner was delivered again. The generosity of my friends and their care makes me know that we'll be okay, not just for now but for whatever is ahead for us. I still have no idea what that is. Considering that I've had an operation and a lump has been removed, do I still have breast cancer or is it gone.
I message one of our kids to bring me my quilt. It seems to be the most effective form of communication and one that gets a response. The quilt instantly provides warmth and comfort. It's design is of the ocean with it's colours changing from sand to surf, then deeper water and the setting sun. It was made just for this 'occasion'. For me to drag it around from inside to out. Put my feet in it's pocket whether they're dirty or clean.
*Does this just go straight in the machine mum?
Jon joins me in the hammock and we watch as the Robertson mist starts to puff across our lawn. We're both tired. Physically and emotionally drained. I can still only do one day at a time. Planning ahead seems unattainable. Fortunatley, I'm not required to plan ahead right now. All I have to do is keep a sufficient amount of time between each dose of panadol. I'm not required to do anything, but I will choose to be thankful for everything that has made up today.
I can hear the fan click as it spins above my head. I've just slept for a solid nine hours. I move my right arm slightly and remember that today I'm going to be sensible. My biggest problem of the day will be the temperature above 30° and not being able to submerge myself as I usually would on a day like today. I'm sure I'll come up with some kind of solution.
* * *
The spider webs in our yard are glistening in the setting sun and the cool air is making me wish that I'd bought my quilt down to the hammock. The day wasn't as hot as predicted. A black cockatoo is screeching above me in one of our tall pine trees, I can hear other birds, insects, and multiple lawn mowers. Occasionally I hear a car head through town and for now the sounds of freight trains have subsided (the line via Robertson has been busy due to the track closure between Moss Vale and Yerrinbool).
Today I wasn't capable of making pools. I wasn't capable of much at all. A glance at the slip and slide made my eyes water and the thought of diving down it is incomprehensible. I've managed to lie in the hammock, move to the shade of the back yard, sit in the paddling pool, fall asleep in my bed and return to the hammock. I almost missed my friends visit during the sleep, but called her to ask if she would come back for a chat.
Dinner was delivered again. The generosity of my friends and their care makes me know that we'll be okay, not just for now but for whatever is ahead for us. I still have no idea what that is. Considering that I've had an operation and a lump has been removed, do I still have breast cancer or is it gone.
I message one of our kids to bring me my quilt. It seems to be the most effective form of communication and one that gets a response. The quilt instantly provides warmth and comfort. It's design is of the ocean with it's colours changing from sand to surf, then deeper water and the setting sun. It was made just for this 'occasion'. For me to drag it around from inside to out. Put my feet in it's pocket whether they're dirty or clean.
*Does this just go straight in the machine mum?
Jon joins me in the hammock and we watch as the Robertson mist starts to puff across our lawn. We're both tired. Physically and emotionally drained. I can still only do one day at a time. Planning ahead seems unattainable. Fortunatley, I'm not required to plan ahead right now. All I have to do is keep a sufficient amount of time between each dose of panadol. I'm not required to do anything, but I will choose to be thankful for everything that has made up today.
24th January 2021
My head is bent over into the laundry tub as Erin helpfully washes my hair with a shower hose plugged into the tap. The floor is wet and I'm pretty sure the walls and the ceiling will be too by the time we're done. It doesn't concern me.
In my normal life, my hair is wet most of the time. It doesn't get a chance to dry in between recreational swims, exercise swims or work swims. If I'm going out somewhere I wash it and never attempt to dry it. Wet hair is my look. I'm not saying that it's a good look, but I'm most comfortable with how I look, when my hair is wet.
This goes way back. I think I can remember a discussion about not wanting to dry my hair after swimming training before going to my Year 6 farewell disco. "It looks better wet mum" (in hindsight, and on this side of motherhood, mother's have a wider perspective and are often correct).
Today is as hot as predicted and I feel better with cool wet hair. It makes me feel normal. The sting of my wounds tingle down my arm continually throughout the day. I'm letting out an unavoidable gasp when it catches me by surprise. I'm relieved that school holidays can continue with friends and fun and water. The sounds of squeals from the girls, laughter, and loud deepening voices from the older boys keep waking me from my dosing, preventing a deep daytime sleep. There's nothing better than to be stirred by happy noises like those, to keep me awake in the hope of a better sleep tonight.
My head is bent over into the laundry tub as Erin helpfully washes my hair with a shower hose plugged into the tap. The floor is wet and I'm pretty sure the walls and the ceiling will be too by the time we're done. It doesn't concern me.
In my normal life, my hair is wet most of the time. It doesn't get a chance to dry in between recreational swims, exercise swims or work swims. If I'm going out somewhere I wash it and never attempt to dry it. Wet hair is my look. I'm not saying that it's a good look, but I'm most comfortable with how I look, when my hair is wet.
This goes way back. I think I can remember a discussion about not wanting to dry my hair after swimming training before going to my Year 6 farewell disco. "It looks better wet mum" (in hindsight, and on this side of motherhood, mother's have a wider perspective and are often correct).
Today is as hot as predicted and I feel better with cool wet hair. It makes me feel normal. The sting of my wounds tingle down my arm continually throughout the day. I'm letting out an unavoidable gasp when it catches me by surprise. I'm relieved that school holidays can continue with friends and fun and water. The sounds of squeals from the girls, laughter, and loud deepening voices from the older boys keep waking me from my dosing, preventing a deep daytime sleep. There's nothing better than to be stirred by happy noises like those, to keep me awake in the hope of a better sleep tonight.
25th January 2021
Patience is not my middle name. It turns out that all of this is going to take a whole lot of time. I will be waiting for results. Waiting for treatment. Waiting while my body heals. It also turns out that some of the days while I'm waiting are going to be awesome.
* * *
The ball slides down the polished bowling lane right over the middle arrow. It's another strike. It's followed by a few spares and some more strikes. I love a good competition but this wouldn't be a good competition if I was in it. I'm not actually at all disappointed that I can't lift the weight of a bowling ball today. Competing against Jon in ten pin, would be like him trying to race me in a 4x50m medley. There's not the slightest chance that I would come close to beating him. Our kids are in awe of his skills. Their gutter balls are widening the gap between themselves and his inspirational awesomeness. Their laughter and cheers are something money can't buy.
During covid, when work in the events industry ceased, he bought himself a new machine. A washing machine. He now anticipates "good drying days". He has always cleaned up the mess after dinner since our kids were born, because I seem to clock off for the day after everyone is fed. He's loyal and reliable. Caring and sincere. When you are with him you have his full attention. He's not thinking about whatever else he has to squeeze in that day. Whatever happens next, will happen with him alongside me carrying the weight.
I felt good today. No need for a rest. I start to enjoy wiping down the bathroom sink and smile when I realise that I'm appreciating my competency at being able to fold clothes. I shower and then as I pull my pyjamas on they catch and pull on my dressing under my arm. I have to stifle my need to scream. A little tear slips out of my squeezed eyes as I grip the edge of the bathroom vanity. I breathe and recover and we spend the next ten minutes together listening to our kids beg for more dad jokes.
* * *
My middle name is actually Faith. The reserve tank of it is already ready and waiting should I need to dip into it.
Patience is not my middle name. It turns out that all of this is going to take a whole lot of time. I will be waiting for results. Waiting for treatment. Waiting while my body heals. It also turns out that some of the days while I'm waiting are going to be awesome.
* * *
The ball slides down the polished bowling lane right over the middle arrow. It's another strike. It's followed by a few spares and some more strikes. I love a good competition but this wouldn't be a good competition if I was in it. I'm not actually at all disappointed that I can't lift the weight of a bowling ball today. Competing against Jon in ten pin, would be like him trying to race me in a 4x50m medley. There's not the slightest chance that I would come close to beating him. Our kids are in awe of his skills. Their gutter balls are widening the gap between themselves and his inspirational awesomeness. Their laughter and cheers are something money can't buy.
During covid, when work in the events industry ceased, he bought himself a new machine. A washing machine. He now anticipates "good drying days". He has always cleaned up the mess after dinner since our kids were born, because I seem to clock off for the day after everyone is fed. He's loyal and reliable. Caring and sincere. When you are with him you have his full attention. He's not thinking about whatever else he has to squeeze in that day. Whatever happens next, will happen with him alongside me carrying the weight.
I felt good today. No need for a rest. I start to enjoy wiping down the bathroom sink and smile when I realise that I'm appreciating my competency at being able to fold clothes. I shower and then as I pull my pyjamas on they catch and pull on my dressing under my arm. I have to stifle my need to scream. A little tear slips out of my squeezed eyes as I grip the edge of the bathroom vanity. I breathe and recover and we spend the next ten minutes together listening to our kids beg for more dad jokes.
* * *
My middle name is actually Faith. The reserve tank of it is already ready and waiting should I need to dip into it.
#changethedate
I'm waste deep in water when my foot slips on a mossy rock. The rest of my body plops under in the most ungraceful way possible. I thought my first submersion into water after a seven day absence would look something similar to a television ad where the model springs into a freshwater pool and then as she surfaces, droplets fall off her in slow motion. My head pops up and I briefly do a mental check to see if I'm ok. Nothing hurts. I've put waterproof dressings over my waterproof dressings. I can't stay in for a soak, only a dip to cool off.
A few days ago we googled the definition of swimming; 'the sport or activity of propelling oneself through the water using the limbs. I put my head under, push myself off the bottom and kick my legs. It counted. I swam today. The rest of the time I got to sit in the shallows in good company.
I wonder who sat here on this day in 1788. Was it a hot day? Did the children play here and splash in the pools? Did they find yabbies in the water holes? Did they ground rocks into a paste and make it into colourful paint like our kids did? Was it a social place or was it a private place, or a place of provision.
It's a special place for me. I have childhood memories here. After returning from overseas, I didn't feel like I was home until I had been here to smell the Australian air. I was proposed to here. I have sought adventures here. Our children have spent every summer of their lives here on Gundungurra land.
It's evening now and the light has dimmed. Clouds have covered the sky and the rain smells fresh as it cools the air. My eye lids are heavy and are pleading with me to let them close. My mind is well. My body is begging me to let it rest so that it can heal.
Three weeks ago......
My breath is hot and my mask uncomfortable. Although I like that it conceals my face. I feel some kind of security being hidden behind it. It's one day after hearing my diagnosis and we've decided that people with cancer should probably not get Covid.
I'm looking at the shopping mall floor. It's a highly used thoroughfare during these school holidays. It's polished look is suffering. A friend pops up in front of us and says "What do you have to do to be able to wander around the shops kid free? Are you well?" She's laughing and smiling and has no idea what I'm about to do to her. I briefly glance at Jon before I turn to her and reply "Nah, I found out yesterday that I have breast cancer". It was like she took a severe blow straight to the stomach with some kind of metal object. I'd just winded her. She then bent over trying to comprehend what I had just said all while trying to compose herself and act however you're meant to act and say whatever you're meant to say in this situation.
There's no right thing. There's no wrong thing. The things that seem right provide comfort and support. The things that seem wrong are lessons in wisdom. And eventually, these are the ones that provide the laughter.
Acknowledgment, and however it comes across, is what is appreciated. And that's exactly what my friend gave me that day.
My breath is hot and my mask uncomfortable. Although I like that it conceals my face. I feel some kind of security being hidden behind it. It's one day after hearing my diagnosis and we've decided that people with cancer should probably not get Covid.
I'm looking at the shopping mall floor. It's a highly used thoroughfare during these school holidays. It's polished look is suffering. A friend pops up in front of us and says "What do you have to do to be able to wander around the shops kid free? Are you well?" She's laughing and smiling and has no idea what I'm about to do to her. I briefly glance at Jon before I turn to her and reply "Nah, I found out yesterday that I have breast cancer". It was like she took a severe blow straight to the stomach with some kind of metal object. I'd just winded her. She then bent over trying to comprehend what I had just said all while trying to compose herself and act however you're meant to act and say whatever you're meant to say in this situation.
There's no right thing. There's no wrong thing. The things that seem right provide comfort and support. The things that seem wrong are lessons in wisdom. And eventually, these are the ones that provide the laughter.
Acknowledgment, and however it comes across, is what is appreciated. And that's exactly what my friend gave me that day.
28th January 2021
I take a big deep breath of salty air and let it out slowly. The boys wave me goodbye as they swim up the river and away from the ocean mouth with the tide. I had every intention of joining them before I left this morning (just for a few metres of one armed freestyle like 11 year old Lucas, who hurt his shoulder so has been competing in club events with one arm this season). Jon helped me stretch my cozzies over my arm. I started with my usual racers but their hem went straight over my stitches under my arm which caused instant discomfort. I tried another pair but same problem. I gently pulled on my tri suit. It zips up at the front and I'm relieved that it's comfortable.
*I'm not a triathlete. They are a different breed, with a different body shape, and expensive equipment. I really like triathletes but I am not one. I have a tri suit because it provides better sun protection (again, I don't want to get cancer).
At the river they're surprised and pleased to see me. Pete says " you look normal ". I think it might be a compliment.
The tide is high and has about half an hour before it eases and goes into reverse. It's moving solidly. I realise that if I get in and actually have to use my right arm it will hurt. I have no intention of delaying my healing or preventing further treatment from commencing, so I wave them goodbye and walk on the waters edge over the pebbles towards the island. Although I only make it about 300m, and am aware at once that it's the most I've done in more than a week (also, my tri suit isn't providing the support of my post surgery bra, that's for sure).
There are different coloured rocks and shells, sea sponges, and bright pink sea succulents. Blue bottles with electric blue coloured stingers rest where the water has left them. I sit down and watch a mangrove tree hold on tightly through its roots while the waves push and pull it in all directions. It gets tossed about and moves with the surf but it is not the least bit likely to fall over or get dragged out to sea.
I smile when I see my friends heading back towards me. They're my people and we're connected by our shared experiences in the water.
I take a big deep breath of salty air and let it out slowly. The boys wave me goodbye as they swim up the river and away from the ocean mouth with the tide. I had every intention of joining them before I left this morning (just for a few metres of one armed freestyle like 11 year old Lucas, who hurt his shoulder so has been competing in club events with one arm this season). Jon helped me stretch my cozzies over my arm. I started with my usual racers but their hem went straight over my stitches under my arm which caused instant discomfort. I tried another pair but same problem. I gently pulled on my tri suit. It zips up at the front and I'm relieved that it's comfortable.
*I'm not a triathlete. They are a different breed, with a different body shape, and expensive equipment. I really like triathletes but I am not one. I have a tri suit because it provides better sun protection (again, I don't want to get cancer).
At the river they're surprised and pleased to see me. Pete says " you look normal ". I think it might be a compliment.
The tide is high and has about half an hour before it eases and goes into reverse. It's moving solidly. I realise that if I get in and actually have to use my right arm it will hurt. I have no intention of delaying my healing or preventing further treatment from commencing, so I wave them goodbye and walk on the waters edge over the pebbles towards the island. Although I only make it about 300m, and am aware at once that it's the most I've done in more than a week (also, my tri suit isn't providing the support of my post surgery bra, that's for sure).
There are different coloured rocks and shells, sea sponges, and bright pink sea succulents. Blue bottles with electric blue coloured stingers rest where the water has left them. I sit down and watch a mangrove tree hold on tightly through its roots while the waves push and pull it in all directions. It gets tossed about and moves with the surf but it is not the least bit likely to fall over or get dragged out to sea.
I smile when I see my friends heading back towards me. They're my people and we're connected by our shared experiences in the water.
I had some time to fill. Buckle in.
29th January 2021
I can feel that familiar feeling that starts in the pit of my stomach. It begins in my gut and spreads and builds until I can feel the splintery pain in my chest. The adrenaline starts serging, the tips of my fingers are starting to tremor. I'm not actually aware of where my daily anxiety medication is. Possibly in my broken down car or at the bottom of my swimming bag. I haven't taken it for four weeks now. It turns out that breast cancer has filled my mind with other things to think about and masked any other issue. I reach for my phone and start to write. It organises my thoughts and in less than a minute I'm okay.
So far, breast cancer is easier than mental health. It's easier to understand. It's straightforward. You're allowed to feel however you want to because you have cancer. It's completely normal to feel sad or worried. You have a reason to. You can understand why your under arm is hurting because that's where the surgeon sliced it open and then stitched it back up. You can see the wound through the transparent dressing. Of course it hurts. It's not confusing. It's not hidden. You don't doubt the pain. You don't question it. You don't put off getting treatment.
It's the first day of school for the year in our house today (for two out of three of them). Last night one was excited. One had a sore tummy. This morning one is dressed and ready, the other is confused as to why I don't put up a fight about a lemon blouse verses a sport shirt, and black leather shoes verses sneakers. She thinks I'm giving reverse psychology a go. She's wrong. Which uniform on which day, has just taken a big back step in things to get emotional about before school in the mornings.
We drop them off at the gate. I barely hold it together when the questions hit. Will I miss their assemblies? Will I miss every recorder performance? Will I miss out on being involved in the struggle of the second verse of the national anthem? Will I miss their sports carnivals? Will someone else be dropping them off for excursions? What does this year hold? Will I be here to drop them off next year? The last question is over dramatic. Most cases of breast cancer patients recover. But some don't. In my situation I think it's fair that it crosses my mind. I start to cry. It was due. Jon runs me a bath because after 16 years of marriage today, he knows that in these situations he needs to add water.
We're early to my appointment, just how I like it. So early that we sit in the car for a while, then in the foyer for a while until we go into the waiting room. There are two women before me and both come out with happy relieved smiles. I look at Jon and say "surely the odds aren't three from three and that's why my appointment is last". We both are breathing more deeply than normal.
"Kirrilee?"
I don't really know if what he is telling us is good news but it's information and that in itself provides relief. "The tumor was bigger than we thought. 25mm not 18." That sounds bad. " We still managed to get a good 2mm clear margin around it". That sounds good. "You're ki-67 percentage is 30". That sounds good. "Anything over 20% is considered high". That sounds bad. "You're cancer is hormonal, these have the best prognosis". Good. "It's very aggressive and fast growing, so you will need to have radiation as well as chemotherapy". Bad. "We tested the sentinel lymph node. You have small amounts of tumerous cancer cells there". Bad. "These amounts are so small that we actually class them as a negative result. Good?". "You'll start chemo in about three to four weeks". "Your chemo will last for three to four months". "Radiation will follow chemo". The information coming out of his mouth is now no longer good or bad. It's information. It's knowledge. It lessens the unknown. It gives me goals. The information is ours to choose what to do with. We choose that it's good news. It is good news. There is no need for more surgery. There is the very smallest amount in my lymph nodes. Four months of chemo is achievable. Radiation is another form of treatment that will get rid of the bad cells. "Am I allowed to swim now?" "Yes". This is all good news.
I'm aware that my mind set will be the thing that will have the biggest impact on this experience. I'm determined to make that mind set as positive as possible. Who would've thought a breast cancer diagnosis would have so many opportunities to experience good stuff. We're still in the midst of ten days of meals delivered to our door after surgery. We had five nights post diagnosis. We've had groceries delivered and care packages supplied. Not only does this relieve us from cooking, better than that, it's love and care served up in (I want to say a taco shell, but that's a story for another day).
My friendships are closer now. My perspective has changed for the better. I'm going to be a better mum after this. Don't get me wrong. I'm aware that this is going to be tough. There have been times already when I'm overwhelmed with what is ahead. If I had a choice, I wouldn't choose this. There is going to be no part of this that is easy. It's going to hurt. I'm going to struggle. Some days I'll want to give up. Some people will see the very worst of me. Physically and emotionally. This is teaching me already how to ask for help and that no one has ever needed me to prove that I can achieve something alone.
The car bumps as we turn into the car park which causes me to hold my breath in pain. Erin says "hey mum, we're allowed to park in the top car park because your not working today, your just a mum at the pool. Can we park in the disabled spot because you have cancer?". "There are some advantages Ez, but let's be happy that our legs can walk easily from whichever spot we park in." We've got lots of things to be happy about.
29th January 2021
I can feel that familiar feeling that starts in the pit of my stomach. It begins in my gut and spreads and builds until I can feel the splintery pain in my chest. The adrenaline starts serging, the tips of my fingers are starting to tremor. I'm not actually aware of where my daily anxiety medication is. Possibly in my broken down car or at the bottom of my swimming bag. I haven't taken it for four weeks now. It turns out that breast cancer has filled my mind with other things to think about and masked any other issue. I reach for my phone and start to write. It organises my thoughts and in less than a minute I'm okay.
So far, breast cancer is easier than mental health. It's easier to understand. It's straightforward. You're allowed to feel however you want to because you have cancer. It's completely normal to feel sad or worried. You have a reason to. You can understand why your under arm is hurting because that's where the surgeon sliced it open and then stitched it back up. You can see the wound through the transparent dressing. Of course it hurts. It's not confusing. It's not hidden. You don't doubt the pain. You don't question it. You don't put off getting treatment.
It's the first day of school for the year in our house today (for two out of three of them). Last night one was excited. One had a sore tummy. This morning one is dressed and ready, the other is confused as to why I don't put up a fight about a lemon blouse verses a sport shirt, and black leather shoes verses sneakers. She thinks I'm giving reverse psychology a go. She's wrong. Which uniform on which day, has just taken a big back step in things to get emotional about before school in the mornings.
We drop them off at the gate. I barely hold it together when the questions hit. Will I miss their assemblies? Will I miss every recorder performance? Will I miss out on being involved in the struggle of the second verse of the national anthem? Will I miss their sports carnivals? Will someone else be dropping them off for excursions? What does this year hold? Will I be here to drop them off next year? The last question is over dramatic. Most cases of breast cancer patients recover. But some don't. In my situation I think it's fair that it crosses my mind. I start to cry. It was due. Jon runs me a bath because after 16 years of marriage today, he knows that in these situations he needs to add water.
We're early to my appointment, just how I like it. So early that we sit in the car for a while, then in the foyer for a while until we go into the waiting room. There are two women before me and both come out with happy relieved smiles. I look at Jon and say "surely the odds aren't three from three and that's why my appointment is last". We both are breathing more deeply than normal.
"Kirrilee?"
I don't really know if what he is telling us is good news but it's information and that in itself provides relief. "The tumor was bigger than we thought. 25mm not 18." That sounds bad. " We still managed to get a good 2mm clear margin around it". That sounds good. "You're ki-67 percentage is 30". That sounds good. "Anything over 20% is considered high". That sounds bad. "You're cancer is hormonal, these have the best prognosis". Good. "It's very aggressive and fast growing, so you will need to have radiation as well as chemotherapy". Bad. "We tested the sentinel lymph node. You have small amounts of tumerous cancer cells there". Bad. "These amounts are so small that we actually class them as a negative result. Good?". "You'll start chemo in about three to four weeks". "Your chemo will last for three to four months". "Radiation will follow chemo". The information coming out of his mouth is now no longer good or bad. It's information. It's knowledge. It lessens the unknown. It gives me goals. The information is ours to choose what to do with. We choose that it's good news. It is good news. There is no need for more surgery. There is the very smallest amount in my lymph nodes. Four months of chemo is achievable. Radiation is another form of treatment that will get rid of the bad cells. "Am I allowed to swim now?" "Yes". This is all good news.
I'm aware that my mind set will be the thing that will have the biggest impact on this experience. I'm determined to make that mind set as positive as possible. Who would've thought a breast cancer diagnosis would have so many opportunities to experience good stuff. We're still in the midst of ten days of meals delivered to our door after surgery. We had five nights post diagnosis. We've had groceries delivered and care packages supplied. Not only does this relieve us from cooking, better than that, it's love and care served up in (I want to say a taco shell, but that's a story for another day).
My friendships are closer now. My perspective has changed for the better. I'm going to be a better mum after this. Don't get me wrong. I'm aware that this is going to be tough. There have been times already when I'm overwhelmed with what is ahead. If I had a choice, I wouldn't choose this. There is going to be no part of this that is easy. It's going to hurt. I'm going to struggle. Some days I'll want to give up. Some people will see the very worst of me. Physically and emotionally. This is teaching me already how to ask for help and that no one has ever needed me to prove that I can achieve something alone.
The car bumps as we turn into the car park which causes me to hold my breath in pain. Erin says "hey mum, we're allowed to park in the top car park because your not working today, your just a mum at the pool. Can we park in the disabled spot because you have cancer?". "There are some advantages Ez, but let's be happy that our legs can walk easily from whichever spot we park in." We've got lots of things to be happy about.
30th January 2021
I slide my thumb over my unlock pattern on my phone. It's not a secret. Everyone knows what it is. There's now a well worn mark for anyone who didn't know it. I have an amazing amount of messages after yesterday of people sending me love and wishing me well. I've now got a frequently asked, but not answered question.
"How are you feeling?"
I feel well. I'm not sick. I'd always imagined people with cancer bed ridden, hairless and in pain from their time of diagnosis.
I feel tired. More than usual. Extremely tired. It's most probably because I'm attempting to live life as normally as possible while keeping up with the emotional side of things. Plus I had surgery a week ago, and my sleep has been quite broken.
I feel concern that were giving the kids the right information, in amounts they can understand and handle. I know I need to be more aware that my conversations with others need to consider them first. Not that anything is a secret from them but because it's unhealthy for them to hear the same conversation and details repeated about what might or might not happen during treatment.
I feel inadequate to provide Erin with enough support and reassurance.
I feel the pain under my arm. It physically hurts. It's uncomfortable all day.
I feel greatful. Greatful for my friends and family and for everyone who reads along. Grateful for the gifts, the flowers, the meals, the messages, the practical help and the prayers. I'm really thankful to my dad for the tank of fuel (tanks and tanks of fuel over my lifetime, in a range of vehicles).
I feel scared. I don't really know what is ahead yet, how it will work, or what impact it will have.
I feel confident that when this is over I'll be able to do everything that I did before.
I feel glad that I have things to help me like swimming and writing, or even just a bath.
I feel naive and fearful, followed by strong and capable, back and forth through the hours of the day.
Feelings aside. I am able.
I slide my thumb over my unlock pattern on my phone. It's not a secret. Everyone knows what it is. There's now a well worn mark for anyone who didn't know it. I have an amazing amount of messages after yesterday of people sending me love and wishing me well. I've now got a frequently asked, but not answered question.
"How are you feeling?"
I feel well. I'm not sick. I'd always imagined people with cancer bed ridden, hairless and in pain from their time of diagnosis.
I feel tired. More than usual. Extremely tired. It's most probably because I'm attempting to live life as normally as possible while keeping up with the emotional side of things. Plus I had surgery a week ago, and my sleep has been quite broken.
I feel concern that were giving the kids the right information, in amounts they can understand and handle. I know I need to be more aware that my conversations with others need to consider them first. Not that anything is a secret from them but because it's unhealthy for them to hear the same conversation and details repeated about what might or might not happen during treatment.
I feel inadequate to provide Erin with enough support and reassurance.
I feel the pain under my arm. It physically hurts. It's uncomfortable all day.
I feel greatful. Greatful for my friends and family and for everyone who reads along. Grateful for the gifts, the flowers, the meals, the messages, the practical help and the prayers. I'm really thankful to my dad for the tank of fuel (tanks and tanks of fuel over my lifetime, in a range of vehicles).
I feel scared. I don't really know what is ahead yet, how it will work, or what impact it will have.
I feel confident that when this is over I'll be able to do everything that I did before.
I feel glad that I have things to help me like swimming and writing, or even just a bath.
I feel naive and fearful, followed by strong and capable, back and forth through the hours of the day.
Feelings aside. I am able.
1st February 2021
My mind starts to roll through the questions as I wake from a deep and restful sleep.
What day is it? Monday. What are the kids doing today? They're all going to school. What do I do on Mondays? Work at the pool. My brain halts. I'm not working at the pool today. I have breast cancer.
I want a day off. But not from work, from cancer.
I want to go to work and blow bubbles with preschoolers. I want to see their little faces full of pride when they pop up from collecting a ring from underwater. I want to recieved their effortless and innocent hugs at the end of their lessons, and have to gently turn down their invitations to come over for a play at their houses after swimming.
I'm allowed in the water, but a three hour soak in a chlorinated pool with a high risk of a kick to the chest wouldn't be ideal.
I have an empty day ahead. I know there are people who wish for this. An empty day to lounge around. I don't ever wish for these days.
* * *
When the surgeon said I could swim, did he mean gently propelling myself through water? or did he mean a couple of k's with a few sets of one hundreds on the 1:45? He didn't clarify, so I can only assume the latter and make some kind of mid range attempt.
Still 1st February 2021
As soon as I'm underneath, the water surrounds me in familiarity. It's where I fit. Where I belong. Freestyle comes naturally. My body knows what to do without me asking it. Nothing hurts when I rotate my arms. It said in the post surgery pamphlet to 'use your arm as normal'. Freestyle is normal.
I flip into my tumble turn and push off the wall. My body doesn't respond as kindly to the force of the water rushing past it. My future turns are all gentler, pushing off with a little tap of one foot. I complete 200m and the waterproof dressing under my arm starts to peel down and annoy me. I switch to breaststroke and then one armed backstroke. It's becoming evident that I need to ease up. When I change to side stroke, I kick my toe on the round disc of the waveless lane rope. I make a mental note to give my swimmers more empathy next time they do it. I know it's time to stop but I only have 100m to go. I cross my arms over my chest and complete the kilometre doing backstroke kick.
I haven't completed any hard sets. I haven't used the pace clock. I've swum a slow kilometre in the time that it usually takes me to swim two. But my aim was 250m and I've achieved well above it. I feel good, and I've had a day off.
My mind starts to roll through the questions as I wake from a deep and restful sleep.
What day is it? Monday. What are the kids doing today? They're all going to school. What do I do on Mondays? Work at the pool. My brain halts. I'm not working at the pool today. I have breast cancer.
I want a day off. But not from work, from cancer.
I want to go to work and blow bubbles with preschoolers. I want to see their little faces full of pride when they pop up from collecting a ring from underwater. I want to recieved their effortless and innocent hugs at the end of their lessons, and have to gently turn down their invitations to come over for a play at their houses after swimming.
I'm allowed in the water, but a three hour soak in a chlorinated pool with a high risk of a kick to the chest wouldn't be ideal.
I have an empty day ahead. I know there are people who wish for this. An empty day to lounge around. I don't ever wish for these days.
* * *
When the surgeon said I could swim, did he mean gently propelling myself through water? or did he mean a couple of k's with a few sets of one hundreds on the 1:45? He didn't clarify, so I can only assume the latter and make some kind of mid range attempt.
Still 1st February 2021
As soon as I'm underneath, the water surrounds me in familiarity. It's where I fit. Where I belong. Freestyle comes naturally. My body knows what to do without me asking it. Nothing hurts when I rotate my arms. It said in the post surgery pamphlet to 'use your arm as normal'. Freestyle is normal.
I flip into my tumble turn and push off the wall. My body doesn't respond as kindly to the force of the water rushing past it. My future turns are all gentler, pushing off with a little tap of one foot. I complete 200m and the waterproof dressing under my arm starts to peel down and annoy me. I switch to breaststroke and then one armed backstroke. It's becoming evident that I need to ease up. When I change to side stroke, I kick my toe on the round disc of the waveless lane rope. I make a mental note to give my swimmers more empathy next time they do it. I know it's time to stop but I only have 100m to go. I cross my arms over my chest and complete the kilometre doing backstroke kick.
I haven't completed any hard sets. I haven't used the pace clock. I've swum a slow kilometre in the time that it usually takes me to swim two. But my aim was 250m and I've achieved well above it. I feel good, and I've had a day off.
2nd February 2021
I can feel my stomach churn. I sit down. The other two women in the waiting room are wearing comfortable head wear to cover their hair loss. This is as real as it's been so far. I don't want to be here, so I think back to this morning....
I can feel the warmth of the sun on my shoulders. My arms and legs are propelling me through the clear water. The sun and the swell are making tortoise shell patterns on the sand underneath me. The fish that I pass are lingering, hovering over the sand. They face towards the incoming tide waiting for unsuspecting prey who can't swim against the current but instead go straight into their open mouths. I swim cautiously. Gently.
The further up the river we go, the more the water turns from something that you'd see on a tourism ad to something that you'd see in a classroom fish tank after six weeks of summer holidays. I'm glad I've covered my wounds up with new waterproof dressings. My arm needs a rest so I tuck my little wing in across my chest and continue swimming with one arm, just like I've watched Lucas do. He gains even more of my respect as I keep on going. My right arm might have had enough, but the rest of my body, my lungs, my heart and my head have not. I have no intention of getting out of the water. As the others pass me, each one stops their stroke to check if I'm okay. I am. And I make it all the way to the beach. On our walk back, we see hundreds of pieces of cunjie (cungevoi). They've been washed onto the beach after last night's storm. My friends reminisce about jumping on them as kids to make them squirt.
"Kirrilee?"
We walk in to the consultation room and are given loads of information. I'll need a blood test and a heart ultrasound. I'll need to attend a chemotherapy information session. In two weeks time I'll have chemo by intravenous drip one day out of every fourteen for 8 weeks, and then I'll do it all over again on a different drug. I'll loose my hair possibly as quickly as after the first session. I'll go through menopause and because I'm young, it will be more unpleasant than usual. When the chemo is finished I'll start radiation. I'll need to stay out of the sun and especially sun reflecting off water because I'll be over sensitive to it.
Wait. What?
Jon says "this is going to be a problem".
I can do chemo and hair loss and menopause.
I try to bargain. "What if I wear a steamer and I stay face down in the water?".... She picks up that the correct answer for that question right now is "that will be okay". Okay then. We'll all be okay.
I can feel my stomach churn. I sit down. The other two women in the waiting room are wearing comfortable head wear to cover their hair loss. This is as real as it's been so far. I don't want to be here, so I think back to this morning....
I can feel the warmth of the sun on my shoulders. My arms and legs are propelling me through the clear water. The sun and the swell are making tortoise shell patterns on the sand underneath me. The fish that I pass are lingering, hovering over the sand. They face towards the incoming tide waiting for unsuspecting prey who can't swim against the current but instead go straight into their open mouths. I swim cautiously. Gently.
The further up the river we go, the more the water turns from something that you'd see on a tourism ad to something that you'd see in a classroom fish tank after six weeks of summer holidays. I'm glad I've covered my wounds up with new waterproof dressings. My arm needs a rest so I tuck my little wing in across my chest and continue swimming with one arm, just like I've watched Lucas do. He gains even more of my respect as I keep on going. My right arm might have had enough, but the rest of my body, my lungs, my heart and my head have not. I have no intention of getting out of the water. As the others pass me, each one stops their stroke to check if I'm okay. I am. And I make it all the way to the beach. On our walk back, we see hundreds of pieces of cunjie (cungevoi). They've been washed onto the beach after last night's storm. My friends reminisce about jumping on them as kids to make them squirt.
"Kirrilee?"
We walk in to the consultation room and are given loads of information. I'll need a blood test and a heart ultrasound. I'll need to attend a chemotherapy information session. In two weeks time I'll have chemo by intravenous drip one day out of every fourteen for 8 weeks, and then I'll do it all over again on a different drug. I'll loose my hair possibly as quickly as after the first session. I'll go through menopause and because I'm young, it will be more unpleasant than usual. When the chemo is finished I'll start radiation. I'll need to stay out of the sun and especially sun reflecting off water because I'll be over sensitive to it.
Wait. What?
Jon says "this is going to be a problem".
I can do chemo and hair loss and menopause.
I try to bargain. "What if I wear a steamer and I stay face down in the water?".... She picks up that the correct answer for that question right now is "that will be okay". Okay then. We'll all be okay.
3rd February 2021
Happy birthday Zoe.
The sky is finally getting lighter. The birds are starting to wake. It's been a long wait. I'm aching. I'm uncomfortable. I'm restless. And then like a switch, it's a normal day with normal lunch box packing, normal unwelcome hair brushing, normal sock finding, alongside a search for the missing library bag. Another day to navigate.
I open the door of the medical practice. It's been just over a month since I was here asking for a referral for a mammogram. Same practice. Different GP. I forgot my mask. It's no problem. Even though it's made clear that you have to provide your own, I'm handed one instantly with empathy and care from the admin staff. There is one in particular who holds the reason why I don't want to go any other medical practice. She will do anything to fit kids in for a last minute appointment after school. She'll juggle time slots to suit work days. She genuinely cares for my family and the people in our village.
"Kirrilee?"
I walk into the consultation room. The floor boards are clean and polished. She asks "How are you today? Are you well?". I pause and wonder why doctors ask that. Surely there are a high percentage of people who go to the doctors who are not well. "I'm okay" I say. She looks through the files of returned results from the past few weeks and realises my body is not well. She asks how I am emotionally. I say "I need to have a cry for a bit, but other that I'll be okay". We talk through test results and upcoming appointments. When it's time to leave, I make my way back past the reception desk to make another appointment and the tears start. The receptionist stands up, walks around from behind the covid screens and comforts me. The tears are a relief. I'm glad to get them all out. I go home and cry without inhibition. I know it will help.
Work and every day tasks all seem to take more effort at the moment. I'm tired from the night before when a friend pops over. It's one of those friends who you're instantly comfortable with. One who you've happily left your crying pre-schooler with, snuggled in her arms and walked away because you know they're as safe with her as they are with you. She brightens my afternoon. Everything seems bearable again.
I sink my head down under the water to the bottom of the bath and stay there for as long as I can. There was no swim today but this will do. The flickering candles start to annoy me so I blow them out and sit there in the dark. I breathe. I relax. I'm comfortably tired and ready for bed. Ready to face another night and navigate another day.
Happy birthday Zoe.
The sky is finally getting lighter. The birds are starting to wake. It's been a long wait. I'm aching. I'm uncomfortable. I'm restless. And then like a switch, it's a normal day with normal lunch box packing, normal unwelcome hair brushing, normal sock finding, alongside a search for the missing library bag. Another day to navigate.
I open the door of the medical practice. It's been just over a month since I was here asking for a referral for a mammogram. Same practice. Different GP. I forgot my mask. It's no problem. Even though it's made clear that you have to provide your own, I'm handed one instantly with empathy and care from the admin staff. There is one in particular who holds the reason why I don't want to go any other medical practice. She will do anything to fit kids in for a last minute appointment after school. She'll juggle time slots to suit work days. She genuinely cares for my family and the people in our village.
"Kirrilee?"
I walk into the consultation room. The floor boards are clean and polished. She asks "How are you today? Are you well?". I pause and wonder why doctors ask that. Surely there are a high percentage of people who go to the doctors who are not well. "I'm okay" I say. She looks through the files of returned results from the past few weeks and realises my body is not well. She asks how I am emotionally. I say "I need to have a cry for a bit, but other that I'll be okay". We talk through test results and upcoming appointments. When it's time to leave, I make my way back past the reception desk to make another appointment and the tears start. The receptionist stands up, walks around from behind the covid screens and comforts me. The tears are a relief. I'm glad to get them all out. I go home and cry without inhibition. I know it will help.
Work and every day tasks all seem to take more effort at the moment. I'm tired from the night before when a friend pops over. It's one of those friends who you're instantly comfortable with. One who you've happily left your crying pre-schooler with, snuggled in her arms and walked away because you know they're as safe with her as they are with you. She brightens my afternoon. Everything seems bearable again.
I sink my head down under the water to the bottom of the bath and stay there for as long as I can. There was no swim today but this will do. The flickering candles start to annoy me so I blow them out and sit there in the dark. I breathe. I relax. I'm comfortably tired and ready for bed. Ready to face another night and navigate another day.
4th February 2021
Pete breaks off from the group and heads out off the sand and into the water. I follow him. The others stay on the beach. The river is tip juice after the heavy rains, so we wade through the scratchy seaweed and out into the Pacific Ocean. "We'll get our money's worth today" he says.
The swell is washy and bumpy. It's not long before my goggles are slapped askew and fill with water. Emptying them and putting them back on in these conditions is near impossible. We're swimming into a head wind, against the current and in a swell with several rips to negotiate. It's perfect. I bet it saves me $160 by avoiding a post surgery physio appointment.
It takes all my concentration to breathe at the right moment to avoid taking in salt water. I miss-time only the once, and gulp a mouthful that goes straight to my belly. It's better than it going into my lungs. I don't even need to stop and cough.
We settle in for a long swim. The ocean feels enormous. I swim close to Peter in angst of any lurking fin. Three times during the swim we change to breaststroke and check in with each other. We egg each other on in our aim to make it to the rocks at the far end of the beach. We go close but the current becomes too strong. To finish off, I suggest a competition to get a handful of sand from the bottom like we've done before. It's deep. Really deep. Ear equalising deep. We both win.
On the beach they're saying that we were three hundred metres off shore. They're exaggerating. We would never do that. Peter and I are the only ones being sensible today.
Pete breaks off from the group and heads out off the sand and into the water. I follow him. The others stay on the beach. The river is tip juice after the heavy rains, so we wade through the scratchy seaweed and out into the Pacific Ocean. "We'll get our money's worth today" he says.
The swell is washy and bumpy. It's not long before my goggles are slapped askew and fill with water. Emptying them and putting them back on in these conditions is near impossible. We're swimming into a head wind, against the current and in a swell with several rips to negotiate. It's perfect. I bet it saves me $160 by avoiding a post surgery physio appointment.
It takes all my concentration to breathe at the right moment to avoid taking in salt water. I miss-time only the once, and gulp a mouthful that goes straight to my belly. It's better than it going into my lungs. I don't even need to stop and cough.
We settle in for a long swim. The ocean feels enormous. I swim close to Peter in angst of any lurking fin. Three times during the swim we change to breaststroke and check in with each other. We egg each other on in our aim to make it to the rocks at the far end of the beach. We go close but the current becomes too strong. To finish off, I suggest a competition to get a handful of sand from the bottom like we've done before. It's deep. Really deep. Ear equalising deep. We both win.
On the beach they're saying that we were three hundred metres off shore. They're exaggerating. We would never do that. Peter and I are the only ones being sensible today.
5th February 2021
The pool is noisy and full of happy, excited and a few nervous kids before club night. It's a casual affair. We're all still learning. Other clubs have automatic timing systems and race officials. We have parents with stop watches and kids who are welcome to swim in their floaties.
Once it clicks over to 6pm, it starts and the evening continually rolls through race after race. My mind is completely taken up with marshalling swimmers and noting down their times. Race after race, event after event. This is what I do every Friday night. Nothing is different.
I've forgotten.
"Why is there blue in your hair?" an interested kid asks kindly. I stop. I'd forgotten that I had a strip of blue hair. I'd forgotten that my hair will be gone soon. I'd forgotten that I'd had surgery. I'd forgotten what is ahead. Remembering and facing the harsh reality sends pain to my chest. I don't want the kid to experience the same, so I say "why not, a bit of blue hair is fun don't you think?" She's not sure of an answer, so she smiles and skips off to swim in her race.
I thought I didn't care about loosing my hair. I've been practicing wearing bandanas. I do care. One of the mum's who is time keeping stands beside me, puts her arm around my shoulder and whispers "you have a lovely face, you're still going to look beautiful". Her eyes are welling up, she swallows, I take a deep breath and then return to the busyness of coordinating the kids and reminding them to touch with two hands at the end of breaststroke. "Which one is breaststroke again?" "Froggie" I say while I move my arms to show them which stroke to do as they're about to launch themselves into the water in ever which way they can manage.
It's always a big night at the end of the week. This time I get home, soak in the bath and then have ten uninterrupted hours of peaceful sleep.
The pool is noisy and full of happy, excited and a few nervous kids before club night. It's a casual affair. We're all still learning. Other clubs have automatic timing systems and race officials. We have parents with stop watches and kids who are welcome to swim in their floaties.
Once it clicks over to 6pm, it starts and the evening continually rolls through race after race. My mind is completely taken up with marshalling swimmers and noting down their times. Race after race, event after event. This is what I do every Friday night. Nothing is different.
I've forgotten.
"Why is there blue in your hair?" an interested kid asks kindly. I stop. I'd forgotten that I had a strip of blue hair. I'd forgotten that my hair will be gone soon. I'd forgotten that I'd had surgery. I'd forgotten what is ahead. Remembering and facing the harsh reality sends pain to my chest. I don't want the kid to experience the same, so I say "why not, a bit of blue hair is fun don't you think?" She's not sure of an answer, so she smiles and skips off to swim in her race.
I thought I didn't care about loosing my hair. I've been practicing wearing bandanas. I do care. One of the mum's who is time keeping stands beside me, puts her arm around my shoulder and whispers "you have a lovely face, you're still going to look beautiful". Her eyes are welling up, she swallows, I take a deep breath and then return to the busyness of coordinating the kids and reminding them to touch with two hands at the end of breaststroke. "Which one is breaststroke again?" "Froggie" I say while I move my arms to show them which stroke to do as they're about to launch themselves into the water in ever which way they can manage.
It's always a big night at the end of the week. This time I get home, soak in the bath and then have ten uninterrupted hours of peaceful sleep.
7th February 2021
My Google search history shows 'cancer headwear' and 'outdoor spas'. I ended up contacting my friend for help. She is a Muslim, so I knew that she would have the best information on the most comfortable options. She mailed me five beautifully soft scarves and I've been practicing wearing them. It's hard to get used to the feeling of something around my head, but I want it to feel normal before I actually have to use one to cover my hair loss. I've also continued to learn more about her faith and how we have far more similarities than differences.
Searching up outdoor spas is fun. My friends have decided to raise some money so that we can buy one. For my whole life water has been my pain relief. It's been far more effective than paracetamol. Even better when I've combined the two. I've had to quickly turn my guilt and awkwardness over receiving such a large gift into gratitude and acceptance of the way the contributions have been intended. People have given with love and care and thoughtfulness towards a gift specifically to suit me. I'm grateful, and I'm excited to go spa shopping.
My Google search history shows 'cancer headwear' and 'outdoor spas'. I ended up contacting my friend for help. She is a Muslim, so I knew that she would have the best information on the most comfortable options. She mailed me five beautifully soft scarves and I've been practicing wearing them. It's hard to get used to the feeling of something around my head, but I want it to feel normal before I actually have to use one to cover my hair loss. I've also continued to learn more about her faith and how we have far more similarities than differences.
Searching up outdoor spas is fun. My friends have decided to raise some money so that we can buy one. For my whole life water has been my pain relief. It's been far more effective than paracetamol. Even better when I've combined the two. I've had to quickly turn my guilt and awkwardness over receiving such a large gift into gratitude and acceptance of the way the contributions have been intended. People have given with love and care and thoughtfulness towards a gift specifically to suit me. I'm grateful, and I'm excited to go spa shopping.
9th February 2021
The bathroom light reflects patterns onto the ceiling. All I can do is lay in the bath and stare at them. Forming sentences isn't one of my best skills at the best of times (which is why I'm confused that my writing seems comprehendable at all), I've just tried to relay the information from the day to Jon. There's so much of it. Canulas, mouthwash, temperature checks, infections, support groups, head scarves, car parking, bulk billing forms, consent, blood test results, side effects, it keeps going. This morning's swim seems like a very long time ago.
* * *
The dark clouds made puffy shapes in the sky and cover the sun, which makes Brian shiver. The rest of us have more padding, we can comfortably enjoy the sight of the pod of dolphins playing behind the breakers. No matter how often I see them, their graceful motion in the water creates awe. We cross the spit and wade into the river into a gentle outgoing tide. I move my arms and legs but the tide carries me. It does most of the work. I relax into steady and even breathing and enjoy the ride. At the boat ramp I take my cap and goggles off and shake my hair under the water. When I come up I can feel my long wet hair against my back. It occurs to me that the feeling of my hair doing that, has a very limited time frame. I wander back to my car and mum says "I just don't know where you got these skills". I thought she meant swimming a couple of kilometres in open water, but realised that she meant washing my hair with an old milk bottle full of warm water, in a car park.
* * *
After the overload of information, I'm taken through to look at the treatment room. I thought it would be a quiet room full of dying people but it's a busy place with happy and helpful staff. Everyone looks like they're just getting on with it. She shows me a chemo chair and how the table folds out so I can bring work to do if needed. I can have the Wi-Fi code and lunch will be provided. The car parking fee will be waived, and as long as I complete the form, treatment will be bulk billed. It almost sounds like a little day retreat, and for free.
I'm fortunate to be an Australian and I'm grateful for Medicare.
The bathroom light reflects patterns onto the ceiling. All I can do is lay in the bath and stare at them. Forming sentences isn't one of my best skills at the best of times (which is why I'm confused that my writing seems comprehendable at all), I've just tried to relay the information from the day to Jon. There's so much of it. Canulas, mouthwash, temperature checks, infections, support groups, head scarves, car parking, bulk billing forms, consent, blood test results, side effects, it keeps going. This morning's swim seems like a very long time ago.
* * *
The dark clouds made puffy shapes in the sky and cover the sun, which makes Brian shiver. The rest of us have more padding, we can comfortably enjoy the sight of the pod of dolphins playing behind the breakers. No matter how often I see them, their graceful motion in the water creates awe. We cross the spit and wade into the river into a gentle outgoing tide. I move my arms and legs but the tide carries me. It does most of the work. I relax into steady and even breathing and enjoy the ride. At the boat ramp I take my cap and goggles off and shake my hair under the water. When I come up I can feel my long wet hair against my back. It occurs to me that the feeling of my hair doing that, has a very limited time frame. I wander back to my car and mum says "I just don't know where you got these skills". I thought she meant swimming a couple of kilometres in open water, but realised that she meant washing my hair with an old milk bottle full of warm water, in a car park.
* * *
After the overload of information, I'm taken through to look at the treatment room. I thought it would be a quiet room full of dying people but it's a busy place with happy and helpful staff. Everyone looks like they're just getting on with it. She shows me a chemo chair and how the table folds out so I can bring work to do if needed. I can have the Wi-Fi code and lunch will be provided. The car parking fee will be waived, and as long as I complete the form, treatment will be bulk billed. It almost sounds like a little day retreat, and for free.
I'm fortunate to be an Australian and I'm grateful for Medicare.
10th February 2021
My thoughts feel scrambled. I'm not sure where I'm up to or what has actually happened so far. I decide to read what I've written. I go to the beginning, and start to read.
As I read it through it, I notice the spelling mistakes, the poor grammar and the wrong or missing punctuation marks. I'm not embarrassed like I usually would be about my mistakes. I'm not trying to win the Miles Franklin Literary Award. Reading through what I've written helps me to accept where I'm up to and prepare for another day.
Today is a pre chemotherapy heart ultrasound. The sonographer hands me a gown. Gowns should be simple. They're the same gown. But depending on which test your having depends on which way the gown goes. Opening at the front for a biopsy. Opening at the back for a bone scan. Opening at the back for a lumpectomy. Opening at the front for this ultrasound. I wonder if it's just the practitioners preference, but why is the patient somehow always expected to know?
This consultation room has a pink wall with a tree made out of different pieces of coloured contact. The lights are dim and I feel like I better keep my eyes open or I'll fall asleep. Throughout the process I can hear the sound of my heart through the machine. It sounds like a wobble board which sadly no longer provides funny memories of the eighties, just disappointment in the one who played it.
I sit up, get dressed and I'm another step into this whole thing. Closer to beginning chemo. Further and further away from my normal life.
My thoughts feel scrambled. I'm not sure where I'm up to or what has actually happened so far. I decide to read what I've written. I go to the beginning, and start to read.
As I read it through it, I notice the spelling mistakes, the poor grammar and the wrong or missing punctuation marks. I'm not embarrassed like I usually would be about my mistakes. I'm not trying to win the Miles Franklin Literary Award. Reading through what I've written helps me to accept where I'm up to and prepare for another day.
Today is a pre chemotherapy heart ultrasound. The sonographer hands me a gown. Gowns should be simple. They're the same gown. But depending on which test your having depends on which way the gown goes. Opening at the front for a biopsy. Opening at the back for a bone scan. Opening at the back for a lumpectomy. Opening at the front for this ultrasound. I wonder if it's just the practitioners preference, but why is the patient somehow always expected to know?
This consultation room has a pink wall with a tree made out of different pieces of coloured contact. The lights are dim and I feel like I better keep my eyes open or I'll fall asleep. Throughout the process I can hear the sound of my heart through the machine. It sounds like a wobble board which sadly no longer provides funny memories of the eighties, just disappointment in the one who played it.
I sit up, get dressed and I'm another step into this whole thing. Closer to beginning chemo. Further and further away from my normal life.
11th February 2020
There's nothing quite like the look of a fifty metre pool and it's stillness before a swimming carnival. Not a ripple. A perfectly smooth keeper of hundreds of thousands of litres of water that hold the anticipation of the day ahead.
This pool is especially familiar to me. It's where our Bong Bong carnivals were held. Yes, Bong Bong. Yes, we were teased when we continued on to the district carnival representing Bong Bong. It's an indigenous name meaning either 'many waters' or 'the seating part of the human anatomy' so it's fair that we were made fun of. It's the name of a place between Moss Vale and Bowral where the Europeans first settled in the Southern Highlands. But in our case it was the collection of all of the small village schools combining together for their sports carnivals. From here we set aside our own school colours and competed in the united Bong Bong black and yellow.
The same pool and thirty one years later, the only difference is the waveless lane ropes instead of bits of orange rope. When I was ten at this level of competition, I was unbeatable. I was bigger and stronger than everyone else. As it turns out, developing early makes you a champion in the pool in primary school, but puts you in a high risk category for breast cancer later on.
At the end of the day I can sense a conspiracy. The parents vs teachers vs students relay has been cancelled due to "lack of time". I know it's to prevent me from swimming. They all want to keep me safe and ready for chemo tomorrow. I try to explain that 35 seconds in a pool when my surgery has healed and before my immune system is compromised will be completely fine. Fun even. The only one who agrees with me is a theatre nurse and a very gifted triathlete who knows far better than anyone else. But we can't sway the crowd to let me swim. I convince them to still hold the race but without me. I know the kids love seeing their teachers give it a crack. Close race. Kids win.
I always look forward to the swimming carnival. This year it has kept my mind off my impending treatment. Now that it's over I've run out of days. I don't want to do this. I want to go to work as usual tomorrow. I don't want this to be happening. I don't want to be sick. I don't want my life to change. I don't want our parents to have to worry. I don't want our kids to suffer.
It's happening whether I want it to or not, so I might as well get on with it and get it done.
There's nothing quite like the look of a fifty metre pool and it's stillness before a swimming carnival. Not a ripple. A perfectly smooth keeper of hundreds of thousands of litres of water that hold the anticipation of the day ahead.
This pool is especially familiar to me. It's where our Bong Bong carnivals were held. Yes, Bong Bong. Yes, we were teased when we continued on to the district carnival representing Bong Bong. It's an indigenous name meaning either 'many waters' or 'the seating part of the human anatomy' so it's fair that we were made fun of. It's the name of a place between Moss Vale and Bowral where the Europeans first settled in the Southern Highlands. But in our case it was the collection of all of the small village schools combining together for their sports carnivals. From here we set aside our own school colours and competed in the united Bong Bong black and yellow.
The same pool and thirty one years later, the only difference is the waveless lane ropes instead of bits of orange rope. When I was ten at this level of competition, I was unbeatable. I was bigger and stronger than everyone else. As it turns out, developing early makes you a champion in the pool in primary school, but puts you in a high risk category for breast cancer later on.
At the end of the day I can sense a conspiracy. The parents vs teachers vs students relay has been cancelled due to "lack of time". I know it's to prevent me from swimming. They all want to keep me safe and ready for chemo tomorrow. I try to explain that 35 seconds in a pool when my surgery has healed and before my immune system is compromised will be completely fine. Fun even. The only one who agrees with me is a theatre nurse and a very gifted triathlete who knows far better than anyone else. But we can't sway the crowd to let me swim. I convince them to still hold the race but without me. I know the kids love seeing their teachers give it a crack. Close race. Kids win.
I always look forward to the swimming carnival. This year it has kept my mind off my impending treatment. Now that it's over I've run out of days. I don't want to do this. I want to go to work as usual tomorrow. I don't want this to be happening. I don't want to be sick. I don't want my life to change. I don't want our parents to have to worry. I don't want our kids to suffer.
It's happening whether I want it to or not, so I might as well get on with it and get it done.
12th February 2021
It feels like I've been dumped in a big wave. My nose is tingling and stinging like it's filled with water. I tell the nurse what's happening and she says that she'll slow the drip down. "Oh, no. Don't slow it down. I like the feeling. I was just letting you know". "Kirrilee, we'll slow it down just a bit".
The anticipation of being here was horrific. The night was continually interrupted with nervous stomach pain. In the morning it was clear that the best choice would be to forgo my planned pre chemo swim to spend the time in the bath with Erin before school (we have bath cozzies). It was the perfect choice. We washed each other's hair.
At the school gate, I had to take Erin's hand out of mine and put it into the Assistant Principle's hand and walk away. I got to walk away knowing that in about two minutes she would be completely fine and that there is not a better place in the whole world for her to be today. The Assistant Principal was my bridesmaid. The teachers and teacher's aids are my friends. I trust the office staff with anything and everything, and my mum has a casual day today. Small town.
Liam is unwell so rested up on his Aunty's lounge for the day. Our kids are just as comfortable at their cousin's place as they are at ours. And Callum is already off on the early high school bus.
Parking got a little stressful and the build up to the red chemo being injected into my vein compounded. Now that bit is done and the next bag of medication is filtering in. I'm sitting here in front of the Australian Open. Lunch was delivered, I'm connected to the free Wi-Fi, and I have the familiar feeling of water up my nose.
Dad sputters. Then coughs. He starts trying to clear the licorice allsort from his airway as the nurses rush over and offer to take his blood pressure. He's okay.
My drip starts beeping and it's finished. I've been here for three hours. The unknown is what has caused the stress, the irritability and the fear. There is still some unknown ahead. I've got to go back to handling one thing at a time.
* * *
I went to swimming club and watched instead of marshalled, and with complete knowledge and understanding, I sat and ate some deep fried wedges. There is no guarantee that I'm not going to see those wedges again. I'm hoping that I was heavier on the sour cream than on the sweet chilli sauce.
It feels like I've been dumped in a big wave. My nose is tingling and stinging like it's filled with water. I tell the nurse what's happening and she says that she'll slow the drip down. "Oh, no. Don't slow it down. I like the feeling. I was just letting you know". "Kirrilee, we'll slow it down just a bit".
The anticipation of being here was horrific. The night was continually interrupted with nervous stomach pain. In the morning it was clear that the best choice would be to forgo my planned pre chemo swim to spend the time in the bath with Erin before school (we have bath cozzies). It was the perfect choice. We washed each other's hair.
At the school gate, I had to take Erin's hand out of mine and put it into the Assistant Principle's hand and walk away. I got to walk away knowing that in about two minutes she would be completely fine and that there is not a better place in the whole world for her to be today. The Assistant Principal was my bridesmaid. The teachers and teacher's aids are my friends. I trust the office staff with anything and everything, and my mum has a casual day today. Small town.
Liam is unwell so rested up on his Aunty's lounge for the day. Our kids are just as comfortable at their cousin's place as they are at ours. And Callum is already off on the early high school bus.
Parking got a little stressful and the build up to the red chemo being injected into my vein compounded. Now that bit is done and the next bag of medication is filtering in. I'm sitting here in front of the Australian Open. Lunch was delivered, I'm connected to the free Wi-Fi, and I have the familiar feeling of water up my nose.
Dad sputters. Then coughs. He starts trying to clear the licorice allsort from his airway as the nurses rush over and offer to take his blood pressure. He's okay.
My drip starts beeping and it's finished. I've been here for three hours. The unknown is what has caused the stress, the irritability and the fear. There is still some unknown ahead. I've got to go back to handling one thing at a time.
* * *
I went to swimming club and watched instead of marshalled, and with complete knowledge and understanding, I sat and ate some deep fried wedges. There is no guarantee that I'm not going to see those wedges again. I'm hoping that I was heavier on the sour cream than on the sweet chilli sauce.
13th February 2021
I lie down in an attempt to sleep but can't, so instead I imagine the red medication searching through my body for all of the nasty cancer cells and crossing them out with a fine tipped black texta. It accidentally gets texta on the good cells too, but it's trying hard. It's a tricky job.
It's now twenty four hours after my chemotherapy so it's time to do a self injection to get my bone marrow working overtime. If I start to ache and get bone pain it means it's working. Good times. I squeeze a bit of my belly, pop the needle in and it's done.
I never saw those wedges again, nor the sour cream or sweet chilli sauce. I had some wise advice that this is not the time to tough it out, so I took the extra anti nausea medication.
Today was manageable. The fog wisps past our bay window as the sky darkens. All I need to cope with, is whatever is happening right now. And right now I'm okay.
I lie down in an attempt to sleep but can't, so instead I imagine the red medication searching through my body for all of the nasty cancer cells and crossing them out with a fine tipped black texta. It accidentally gets texta on the good cells too, but it's trying hard. It's a tricky job.
It's now twenty four hours after my chemotherapy so it's time to do a self injection to get my bone marrow working overtime. If I start to ache and get bone pain it means it's working. Good times. I squeeze a bit of my belly, pop the needle in and it's done.
I never saw those wedges again, nor the sour cream or sweet chilli sauce. I had some wise advice that this is not the time to tough it out, so I took the extra anti nausea medication.
Today was manageable. The fog wisps past our bay window as the sky darkens. All I need to cope with, is whatever is happening right now. And right now I'm okay.
14th February 2021
I wake up and I wait for the nausea to overcome me, but I get at least half an hour in before it does. I can feel my pelvis and my spine and my shoulders, but I wouldn't call it sore. I'm just aware of my skeleton.
Under my arm pit towards my elbow has gone numb from the lymph node removal. It feels odd but I realise that when I'm back teaching learn to swim it will be perfect. That's where any nervous littlies grab on or pinch me. In the end this will save me a world of pain.
I've been stocked up with drinks to keep flushing the chemo, dinner will arrive tonight, my hair has been braided. There is a spa on the way. It's going to sit on a specially made platform. No, you may not jump from the trampoline into the spa, but yes, maybe you can squeeze a spa in before school some days.
I wake up and I wait for the nausea to overcome me, but I get at least half an hour in before it does. I can feel my pelvis and my spine and my shoulders, but I wouldn't call it sore. I'm just aware of my skeleton.
Under my arm pit towards my elbow has gone numb from the lymph node removal. It feels odd but I realise that when I'm back teaching learn to swim it will be perfect. That's where any nervous littlies grab on or pinch me. In the end this will save me a world of pain.
I've been stocked up with drinks to keep flushing the chemo, dinner will arrive tonight, my hair has been braided. There is a spa on the way. It's going to sit on a specially made platform. No, you may not jump from the trampoline into the spa, but yes, maybe you can squeeze a spa in before school some days.
15th February 2021
The bone pain is real. My femurs, my pelvis, my back, my ribs. The nausea is constant. The site of my surgery hurts.
I'm grateful that it is now seven weeks since I sat down on the lounge on the Sunday before Christmas and felt a lump in my breast. I'm glad I don't have to do those seven weeks again.
I'm grateful that our kids played happily in a mound of Lego while I lay on the lounge all yesterday.
I'm grateful that my Aunty cleaned our house, a friend dropped groceries off and the sun came out so I could sit outside for a bit.
I'm grateful that I have two jobs. Even though I can't be in the water teaching, I can try and fit my office hours in at our church whenever I can manage it. I know this will help me emotionally and mentally as well as financially. I like being able to work.
I'm grateful that I still have hair, I have no mouth ulcers yet and eating is currently making me feel better.
I'm grateful that making the kids lunches now feels like an achievement rather than a mundane task. *I was tagged teamed after one wrap. I'm grateful Jon is home.
I'm ready for today. Or at least for the next few hours of it.
The bone pain is real. My femurs, my pelvis, my back, my ribs. The nausea is constant. The site of my surgery hurts.
I'm grateful that it is now seven weeks since I sat down on the lounge on the Sunday before Christmas and felt a lump in my breast. I'm glad I don't have to do those seven weeks again.
I'm grateful that our kids played happily in a mound of Lego while I lay on the lounge all yesterday.
I'm grateful that my Aunty cleaned our house, a friend dropped groceries off and the sun came out so I could sit outside for a bit.
I'm grateful that I have two jobs. Even though I can't be in the water teaching, I can try and fit my office hours in at our church whenever I can manage it. I know this will help me emotionally and mentally as well as financially. I like being able to work.
I'm grateful that I still have hair, I have no mouth ulcers yet and eating is currently making me feel better.
I'm grateful that making the kids lunches now feels like an achievement rather than a mundane task. *I was tagged teamed after one wrap. I'm grateful Jon is home.
I'm ready for today. Or at least for the next few hours of it.
16th February 2021
I feel like I owe an explanation as I pull on my wetsuit in February. The water is warm but I've been told that I'll be extra sensitive to the sun during chemo. There is no explanation required from my friends, they just zip me up.
I wade in, the nausea eases as I start freestyle, but I feel slow and heavy. Fortunately the tide is pulling me along because I don't feel like my arms and legs are making much progress at all. Two stripey fish dart across in front of me before I flip over and float on my back for a while and contemplate getting out at the steps. I don't want to get out early. I want to make it to the patch of sand at end of the spit. It's only about 500m away now and I know I can make it. It's a slog, but I get there. My mouth is oversensitive to the salt water and the walk back down the beach is a chore but I feel like the effort has given me permission to rest all afternoon. I do.
I wake in front of the tennis at 2pm. I wonder what Grandma would think of the blue courts and modern technology at the Australian Open if she saw it now. The tennis was always on at her house during the summer. She died of breast cancer. It's twenty six years later and I have the benefit of all those years of research and technology between her experience and mine. It's not going to be easy, but I made it to the end of that swim today and I'm going to make it to the end of this too.
I feel like I owe an explanation as I pull on my wetsuit in February. The water is warm but I've been told that I'll be extra sensitive to the sun during chemo. There is no explanation required from my friends, they just zip me up.
I wade in, the nausea eases as I start freestyle, but I feel slow and heavy. Fortunately the tide is pulling me along because I don't feel like my arms and legs are making much progress at all. Two stripey fish dart across in front of me before I flip over and float on my back for a while and contemplate getting out at the steps. I don't want to get out early. I want to make it to the patch of sand at end of the spit. It's only about 500m away now and I know I can make it. It's a slog, but I get there. My mouth is oversensitive to the salt water and the walk back down the beach is a chore but I feel like the effort has given me permission to rest all afternoon. I do.
I wake in front of the tennis at 2pm. I wonder what Grandma would think of the blue courts and modern technology at the Australian Open if she saw it now. The tennis was always on at her house during the summer. She died of breast cancer. It's twenty six years later and I have the benefit of all those years of research and technology between her experience and mine. It's not going to be easy, but I made it to the end of that swim today and I'm going to make it to the end of this too.
17th February 2021
If you're going to choose to read this one, please know that it was a rough 24 hours but I'm coming good now.
It's dark. Morning isn't for hours. It's unbearable and unachievable. I'm uncomfortable. The pain is in my ribs and neck, the stomach cramps are severe, the nausea unrelenting. There's no relief. I doubt that I can do this. I can't do one more round of chemo let alone go through it seven more times. How does anyone do this?
I'm walked around into the triage area in the cancer care suite. There are sick people here today. My bloods are taken to check my white blood cell count as well as to see if my kidneys are doing their job. I'm given fluids and nausea medication intravenously. The nausea meds make me feel like I'm being bitten by a thousand ants at once. I wait for the relief. It doesn't come. I'm expecting it to all just go away. Instead it changes to tolerable, but only just.
One of the sick people leave the ward, he says goodbye to people by name as he leaves. He looks straight at me and genuinely wishes me a good day. He means it. He understands. The sick people are the people who know what this feels like more than anyone else. Maybe they're not strange sick people. Maybe I'm the strange newbie and they can remember exactly what that was like.
I ask mum to stop for a popcorn chicken go bucket at KFC on the way home. It seems ridiculous to suggest it, but it's what I feel like eating. I enjoy every bite with no regret. I don't care that it's unhealthy, deep fried and dipped in sweet and sour sauce. I have no concern for the consequences of eating it. It's delicious and I feel better.
*Please note that my nutritional choices have been quite good, but who wants to hear about natural yoghurt, fresh fruit and veg and sugar free options. Those selections are obvious and are happening, I can asure you. Which is why the KFC was extra welcome.
If you're going to choose to read this one, please know that it was a rough 24 hours but I'm coming good now.
It's dark. Morning isn't for hours. It's unbearable and unachievable. I'm uncomfortable. The pain is in my ribs and neck, the stomach cramps are severe, the nausea unrelenting. There's no relief. I doubt that I can do this. I can't do one more round of chemo let alone go through it seven more times. How does anyone do this?
I'm walked around into the triage area in the cancer care suite. There are sick people here today. My bloods are taken to check my white blood cell count as well as to see if my kidneys are doing their job. I'm given fluids and nausea medication intravenously. The nausea meds make me feel like I'm being bitten by a thousand ants at once. I wait for the relief. It doesn't come. I'm expecting it to all just go away. Instead it changes to tolerable, but only just.
One of the sick people leave the ward, he says goodbye to people by name as he leaves. He looks straight at me and genuinely wishes me a good day. He means it. He understands. The sick people are the people who know what this feels like more than anyone else. Maybe they're not strange sick people. Maybe I'm the strange newbie and they can remember exactly what that was like.
I ask mum to stop for a popcorn chicken go bucket at KFC on the way home. It seems ridiculous to suggest it, but it's what I feel like eating. I enjoy every bite with no regret. I don't care that it's unhealthy, deep fried and dipped in sweet and sour sauce. I have no concern for the consequences of eating it. It's delicious and I feel better.
*Please note that my nutritional choices have been quite good, but who wants to hear about natural yoghurt, fresh fruit and veg and sugar free options. Those selections are obvious and are happening, I can asure you. Which is why the KFC was extra welcome.
19th February 2021
I slide down into our warm bath. I've tried everything else. The water eases me. Eases my pain. Eases my mind. My hair is still firmly attached and I'm glad. I've got to try and forget about the anticipation of loosing it and just appreciate that it's still there.
My mouth is dry and I keep waking up in night sweats. It's so hard to stay hydrated, so to wake and feel all of that fluid soaked through my t-shirt is frustrating. Over the past two days it has taken too much energy and created too much nausea to look at my phone to write or to reply to kind messages. I'm irritable and bad company.
The mountain between me and my treatment has somehow grown. The actual mountain. Macquarie Pass. It's getting bigger. More curvey. More of an obstacle after each descent and summit. Radiotherapy after chemo will be five days a week for four weeks in Wollongong and that's not something that I'm willing or able to acknowledge right now. Fortunately I have time for that to be processed and accepted.
Everything is a balance. I've got to try and learn how to manage the medications and the fatigue, the fluid intake and the moods. It's difficult. My family and friends are very patient, very kind and very generous. I am supported from every direction and cared for in every way possible. My mind-set is stumbling, it's time for it try a bit harder, time for it to change gear. A 2002 Honda CRV doesn't have cruise control and neither do I right now.
I slide down into our warm bath. I've tried everything else. The water eases me. Eases my pain. Eases my mind. My hair is still firmly attached and I'm glad. I've got to try and forget about the anticipation of loosing it and just appreciate that it's still there.
My mouth is dry and I keep waking up in night sweats. It's so hard to stay hydrated, so to wake and feel all of that fluid soaked through my t-shirt is frustrating. Over the past two days it has taken too much energy and created too much nausea to look at my phone to write or to reply to kind messages. I'm irritable and bad company.
The mountain between me and my treatment has somehow grown. The actual mountain. Macquarie Pass. It's getting bigger. More curvey. More of an obstacle after each descent and summit. Radiotherapy after chemo will be five days a week for four weeks in Wollongong and that's not something that I'm willing or able to acknowledge right now. Fortunately I have time for that to be processed and accepted.
Everything is a balance. I've got to try and learn how to manage the medications and the fatigue, the fluid intake and the moods. It's difficult. My family and friends are very patient, very kind and very generous. I am supported from every direction and cared for in every way possible. My mind-set is stumbling, it's time for it try a bit harder, time for it to change gear. A 2002 Honda CRV doesn't have cruise control and neither do I right now.
Still the 19th of Feb 2021
I can feel a comforting breeze on my face and I feel completely indulgent. I'm lying in our caravan bed at an undisclosed location (unless you're one of the few who knows exactly where is it). My hot water bottle is warming my feet. I can smell the clean air, and feel it's freshness going in and out of my lungs. It's a welcome change from the stale air in our house and the over powering chemical stench of the hospital.
This feels healing. This feels more effective than any drug that has been pumped into my veins. I set the guilt aside that I should be at work or doing something productive this afternoon and just enjoy every minute that I lie here. I read until I drift off to sleep.
Our van is a 1988 Jayco that looks only slightly more appealing than a dented tin can. It's got a comfortable mattress and is mostly water proof. I love it. But today it's location is what calms everything in my being. I can hear birds and insects. I can look out across the paddock that dips down until it gets to the towering gum trees boardering the property. The grey and white clouds seem to be making a protective fluffy dome between me and the sky so that I can rest. After they part the temperature rises and wakes me. I can see clean clear drops of water on the blades of grass. It's everything that I want right now. Peaceful. Restful. Private. I haven't felt as well as this in a week.
I can feel a comforting breeze on my face and I feel completely indulgent. I'm lying in our caravan bed at an undisclosed location (unless you're one of the few who knows exactly where is it). My hot water bottle is warming my feet. I can smell the clean air, and feel it's freshness going in and out of my lungs. It's a welcome change from the stale air in our house and the over powering chemical stench of the hospital.
This feels healing. This feels more effective than any drug that has been pumped into my veins. I set the guilt aside that I should be at work or doing something productive this afternoon and just enjoy every minute that I lie here. I read until I drift off to sleep.
Our van is a 1988 Jayco that looks only slightly more appealing than a dented tin can. It's got a comfortable mattress and is mostly water proof. I love it. But today it's location is what calms everything in my being. I can hear birds and insects. I can look out across the paddock that dips down until it gets to the towering gum trees boardering the property. The grey and white clouds seem to be making a protective fluffy dome between me and the sky so that I can rest. After they part the temperature rises and wakes me. I can see clean clear drops of water on the blades of grass. It's everything that I want right now. Peaceful. Restful. Private. I haven't felt as well as this in a week.
20th February 2021
I don't partake in selfies. However, I've had a rough week and there are people worrying. Especially ones who don't see me all the time. I reckon I look alright.
I run my tongue over my lips. Overnight they've cracked and I've also woken up with mouth ulcers. I thought it would be more of a gradual thing. I sound a bit funny when I talk, but still no one who walks passed me would ever know that I've had a dose of chemotherapy.
I pull the car into a shady spot at the station. I used to bring Callum here from about the age of two for train rides between Dapto and Kiama. Just for fun. This spot was always exciting because one of the platforms has what Thomas the Tank Engine called a "buffer". It's still interesting today, but now it's because he knows that the siding is unusually long. The main platform also has about 100m spare even with a ten carriage train on it.
Somehow I used to be the one pointing out things to look at. The one with the greater knowledge. The tallest. We've swapped. I get to relax and just enjoy the time. I don't need to bring a bag containing anything that he might need while we're out. I'm no longer even responsible for his Opal card. I hope I'm still invited when he can drive and doesn't need my visa card for drive thru. I have a good feeling that I will be welcome.
I'm cautious of how long I'll last today. I'm nervous that I'll somehow need rescuing. It's nothing I needed to worry about. I feel fine and Cal has me home before twelve.
I can sense Autumn this afternoon. The smell of the grass that I've just cut (on Jon's ride on - please don't tell him - he doesn't love me using it) combined with the cooling damp air would usually bring the anticipation of Robbo Show and warm ocean temperatures. The show will be online because of Covid, I won't miss a thing. And I know that the ocean, even if I'm immersed in it less than usual this season, will be there reliably, regardless.
I don't partake in selfies. However, I've had a rough week and there are people worrying. Especially ones who don't see me all the time. I reckon I look alright.
I run my tongue over my lips. Overnight they've cracked and I've also woken up with mouth ulcers. I thought it would be more of a gradual thing. I sound a bit funny when I talk, but still no one who walks passed me would ever know that I've had a dose of chemotherapy.
I pull the car into a shady spot at the station. I used to bring Callum here from about the age of two for train rides between Dapto and Kiama. Just for fun. This spot was always exciting because one of the platforms has what Thomas the Tank Engine called a "buffer". It's still interesting today, but now it's because he knows that the siding is unusually long. The main platform also has about 100m spare even with a ten carriage train on it.
Somehow I used to be the one pointing out things to look at. The one with the greater knowledge. The tallest. We've swapped. I get to relax and just enjoy the time. I don't need to bring a bag containing anything that he might need while we're out. I'm no longer even responsible for his Opal card. I hope I'm still invited when he can drive and doesn't need my visa card for drive thru. I have a good feeling that I will be welcome.
I'm cautious of how long I'll last today. I'm nervous that I'll somehow need rescuing. It's nothing I needed to worry about. I feel fine and Cal has me home before twelve.
I can sense Autumn this afternoon. The smell of the grass that I've just cut (on Jon's ride on - please don't tell him - he doesn't love me using it) combined with the cooling damp air would usually bring the anticipation of Robbo Show and warm ocean temperatures. The show will be online because of Covid, I won't miss a thing. And I know that the ocean, even if I'm immersed in it less than usual this season, will be there reliably, regardless.
21st February 2021
Night times are increasingly sleepless but not painful or restless. I have chosen not to become frustrated that I'm awake, but instead appreciate the stillness and the soothing quiet.
In the dark, my mind hopes in my ability to be enough for what Liam needs. His gentle and forgiving nature never pushes him to the front of the queue. He doesn't require love in the form of activities or gifts. He'd prefer to stay at home rather than participate in any adventure that I could possibly offer him. This situation that I'm in, is placing me next to him on the lounge more often than usual. He's gentle. He demands nothing. There is no need to fill space in his company. He's content to sit and be.
I have no idea just how much this will effect our children. I will never have the entire insight to how this impacts their thoughts or alters their course. I can see them banding together. I can't help but smile when they team up in defence of each other, even when it's in opposition to me or to Jon. They're brave. They're thoughtful. I can only trust that they will be able to bear the added wisdom that this experience will give them.
Night times are increasingly sleepless but not painful or restless. I have chosen not to become frustrated that I'm awake, but instead appreciate the stillness and the soothing quiet.
In the dark, my mind hopes in my ability to be enough for what Liam needs. His gentle and forgiving nature never pushes him to the front of the queue. He doesn't require love in the form of activities or gifts. He'd prefer to stay at home rather than participate in any adventure that I could possibly offer him. This situation that I'm in, is placing me next to him on the lounge more often than usual. He's gentle. He demands nothing. There is no need to fill space in his company. He's content to sit and be.
I have no idea just how much this will effect our children. I will never have the entire insight to how this impacts their thoughts or alters their course. I can see them banding together. I can't help but smile when they team up in defence of each other, even when it's in opposition to me or to Jon. They're brave. They're thoughtful. I can only trust that they will be able to bear the added wisdom that this experience will give them.
22nd February 2021
I plonk myself down on the lounge. It could be any normal day. It is a normal day. I've just done a days work, gave the kids afternoon tea and I'm about to cook dinner (*reheat dinner). My body has repaired, it's done what is supposed to do. It's ready for another dose of chemotherapy in a few days time. Physically I'm prepared. My experience has given me knowledge and skills of how to handle, and even pre-empt side effects. My body is ready. My mind is not.
I don't want to do it. I don't want to sit there and have poisonous medication pumped into my blood stream. I don't want to feel sick. I don't want the debilitating fatigue. I can't do it again. Not seven more times. Not one more time. I can't fathom starting again from the beginning. I'm not capable of any of it.
I have until Friday to accept that it's going to happen. I have a couple of swims in between now and then. I have time for my mind to catch up. I have time to build up some more emotional strength before then. I have until Friday.
I plonk myself down on the lounge. It could be any normal day. It is a normal day. I've just done a days work, gave the kids afternoon tea and I'm about to cook dinner (*reheat dinner). My body has repaired, it's done what is supposed to do. It's ready for another dose of chemotherapy in a few days time. Physically I'm prepared. My experience has given me knowledge and skills of how to handle, and even pre-empt side effects. My body is ready. My mind is not.
I don't want to do it. I don't want to sit there and have poisonous medication pumped into my blood stream. I don't want to feel sick. I don't want the debilitating fatigue. I can't do it again. Not seven more times. Not one more time. I can't fathom starting again from the beginning. I'm not capable of any of it.
I have until Friday to accept that it's going to happen. I have a couple of swims in between now and then. I have time for my mind to catch up. I have time to build up some more emotional strength before then. I have until Friday.
23rd February 2021
It's overcast. The water is warm. There's enough hard sand to walk to the far end of the beach easily. The tide is on it's way out and will pull me back down the river towards the ocean. It's perfect.
I dive down with a dolphin kick and try to stay under for as long as possible. The water is a cloudy green pastel colour, it's soft and comfortable. There is no place more relaxing for me. All my concerns subside as my body and my mind become occupied with my surroundings. I breathe evenly in time with my stroke. I'm weightless. I'm content.
I sense Al come alongside me and I enter a battle with myself. It's tempting to start kicking hard and stay with him. Brian has warned me not to push too hard today even though I'm feeling well. It takes grown up strength to let Al pass by and return to my gentle rhythm. The water carries me tenderly, securley, all I have to do is let it.
It's overcast. The water is warm. There's enough hard sand to walk to the far end of the beach easily. The tide is on it's way out and will pull me back down the river towards the ocean. It's perfect.
I dive down with a dolphin kick and try to stay under for as long as possible. The water is a cloudy green pastel colour, it's soft and comfortable. There is no place more relaxing for me. All my concerns subside as my body and my mind become occupied with my surroundings. I breathe evenly in time with my stroke. I'm weightless. I'm content.
I sense Al come alongside me and I enter a battle with myself. It's tempting to start kicking hard and stay with him. Brian has warned me not to push too hard today even though I'm feeling well. It takes grown up strength to let Al pass by and return to my gentle rhythm. The water carries me tenderly, securley, all I have to do is let it.
24th February 2021
My eyes adjust as I start waking up. I've been asleep for nine hours and I can already feel it's benefit. I don't ache. I have no nausea. My mouth has healed. My digestive system has sorted itself out. The indigestion has stopped.
"Mum, are you having chemo on Friday?" "Yeah. I don't want to but yeah, I am". "That's the cranky medicine isn't it?" "Yeah, it is. I'll try really hard though". "Ok". "Do you really think butterflies in my tummy will make me go faster at District today?" "Yeah, they totally will. You get to choose what you do with those feelings. You can either think of them as bad ones that make you nervous or good ones that make you excited. All of the Australian swimmers use those feelings to help them go as fast as they possibly can".
"Hey Dad. Mum says my butterflies will make me go faster". "Oh, great!".
If I can train my own butterflies to soar........
My eyes adjust as I start waking up. I've been asleep for nine hours and I can already feel it's benefit. I don't ache. I have no nausea. My mouth has healed. My digestive system has sorted itself out. The indigestion has stopped.
"Mum, are you having chemo on Friday?" "Yeah. I don't want to but yeah, I am". "That's the cranky medicine isn't it?" "Yeah, it is. I'll try really hard though". "Ok". "Do you really think butterflies in my tummy will make me go faster at District today?" "Yeah, they totally will. You get to choose what you do with those feelings. You can either think of them as bad ones that make you nervous or good ones that make you excited. All of the Australian swimmers use those feelings to help them go as fast as they possibly can".
"Hey Dad. Mum says my butterflies will make me go faster". "Oh, great!".
If I can train my own butterflies to soar........
Still 24th Feb
I untwist my hair elastic and pull it out. Hair comes with it. The anticipation of this happening has been constant, but when it actually happens it's still shocking. I thought I didn't care. I do care.
It just keeps happening, all day. I'd decided early on that when it starts to happen I'm going to cut my plaits off so that I can gaff tape them inside a beanie. Whether this is a good idea or not is very unclear, but time will tell. At the least, it will be entertaining, and there's nothing to lose.
I call my friend to come over. She brings scissors and chocolate.
The sound of the scissors gnawing their way through my left plait makes the situation undeniably real. The right one comes off easier. And then, even though her training is in physical education, she has a go at styling it.
I like it. It's light. It's comfortable. I've never had short hair, so I like that I can have the experience even if it only lasts a few days. I'm glad there has been a step in between plaits and shaving my head. The boys say "you look good mum". Erin is more bluntly honest and Jon says he agrees with her.
I love it.
I untwist my hair elastic and pull it out. Hair comes with it. The anticipation of this happening has been constant, but when it actually happens it's still shocking. I thought I didn't care. I do care.
It just keeps happening, all day. I'd decided early on that when it starts to happen I'm going to cut my plaits off so that I can gaff tape them inside a beanie. Whether this is a good idea or not is very unclear, but time will tell. At the least, it will be entertaining, and there's nothing to lose.
I call my friend to come over. She brings scissors and chocolate.
The sound of the scissors gnawing their way through my left plait makes the situation undeniably real. The right one comes off easier. And then, even though her training is in physical education, she has a go at styling it.
I like it. It's light. It's comfortable. I've never had short hair, so I like that I can have the experience even if it only lasts a few days. I'm glad there has been a step in between plaits and shaving my head. The boys say "you look good mum". Erin is more bluntly honest and Jon says he agrees with her.
I love it.
25th February 2021
I drop off the kids at the school gate. It's decorated with pink balloons and everyone is dressed in pink. They're having a fund raiser for a school family where the mum is having chemo for breast cancer. I've sent our two along with their coins for their pink donuts and pink hair spray. I have trouble connecting myself with being the cause of the day's festivities. It's surreal. I'm humbled by everyone's thoughtfulness, generosity and effort. We live in such a supportive and caring community and the very grateful Bracht family are continuing to be on the receiving end.
"You look like Susie O'Neil" says Richard. I don't think I could possibly ever receive a more appreciated compliment. He's nailed it. There was no reason for me to hesitate getting out of the car with my short hair after all. I explain with "It started falling out yesterday, so a friend cut it last night". Peter walks over, and possibly to Debbie's horror when she reads this, gives my hair a pull. He checks between his fingers but none has come out. "Nah, it's ok" he says confidently. I walk over and help myself to a swipe of baby shampoo from the inside of Wally's goggles for the inside of my own goggles, and then we're off.
The water is deeper and clearer today, and just as warm. The seaweed is picking up speed with the quickening tide and I know that I can swim strongly along with it this morning. The stingrays hover above the sand while I swim over the top of them, neither of us are unsettled by each other's presence. The smallest one that I see is not much bigger than my hand, the biggest one is about the size of my whole torso. Their smooth and graceful movements maneuver themselves around in the salty water.
I want to keep swimming, but I turn right with everyone else, which prevents me from being whisked out through the river mouth with the need to walk back. I float around near the boat ramp and soak up everything that the ocean gives me. When I peel off my cap and see that there are loose strands of hair left inside it, it doesn't bother me. I no longer find it shocking, just interesting.
I'm ready for tomorrow. I've cleaned out the fridge as if we'll be away for a week, I've bought extra groceries. I'm physically ready. I'm emotionally ready. I'm mentally ready. In some strange way I actually want to do this to see if I can do it better this time. And maybe take out some kind of self awarded most improved honour.
I drop off the kids at the school gate. It's decorated with pink balloons and everyone is dressed in pink. They're having a fund raiser for a school family where the mum is having chemo for breast cancer. I've sent our two along with their coins for their pink donuts and pink hair spray. I have trouble connecting myself with being the cause of the day's festivities. It's surreal. I'm humbled by everyone's thoughtfulness, generosity and effort. We live in such a supportive and caring community and the very grateful Bracht family are continuing to be on the receiving end.
"You look like Susie O'Neil" says Richard. I don't think I could possibly ever receive a more appreciated compliment. He's nailed it. There was no reason for me to hesitate getting out of the car with my short hair after all. I explain with "It started falling out yesterday, so a friend cut it last night". Peter walks over, and possibly to Debbie's horror when she reads this, gives my hair a pull. He checks between his fingers but none has come out. "Nah, it's ok" he says confidently. I walk over and help myself to a swipe of baby shampoo from the inside of Wally's goggles for the inside of my own goggles, and then we're off.
The water is deeper and clearer today, and just as warm. The seaweed is picking up speed with the quickening tide and I know that I can swim strongly along with it this morning. The stingrays hover above the sand while I swim over the top of them, neither of us are unsettled by each other's presence. The smallest one that I see is not much bigger than my hand, the biggest one is about the size of my whole torso. Their smooth and graceful movements maneuver themselves around in the salty water.
I want to keep swimming, but I turn right with everyone else, which prevents me from being whisked out through the river mouth with the need to walk back. I float around near the boat ramp and soak up everything that the ocean gives me. When I peel off my cap and see that there are loose strands of hair left inside it, it doesn't bother me. I no longer find it shocking, just interesting.
I'm ready for tomorrow. I've cleaned out the fridge as if we'll be away for a week, I've bought extra groceries. I'm physically ready. I'm emotionally ready. I'm mentally ready. In some strange way I actually want to do this to see if I can do it better this time. And maybe take out some kind of self awarded most improved honour.
26th February 2021
It's always been my favourite colour.
Not anymore.
The nurse pulls out a set of purple gloves from the box and puts on a purple gown. She pulls over the purple bin for all of the packaging that holds the syringes of chemotherapy. My notes are in a purple folder. Everything to do with this is purple.
I took my purple phone case off last night, I can no longer look at it. I bought a new swimming cap that wasn't purple and my cousin made and sent me a new beautiful bag with not one fleck of purple in sight. They said chemo would change me, who new purple would be the first thing to go.
"Name?" "Date of birth"? This happens each time, for each canula, each syringe and each tablet. Two nurses check each drug. I repeat my name and date of birth again and again. The red chemo goes in with the syringes and then I sit back with a podcast for the other one which takes over an hour to drip through to me from the bag. The fuzzy, stinging, water up my nose feeling comes back, it makes me sneeze. I don't mind it. The ceiling panels make up a picture of a beach so it fits in.
Two doses done and I'm armed with more anti nausea options and more knowledge. I zipp back up the pass in time for a couple of hours of work and the juggle of drum lessons, swimming club and scouts. No need to think about tomorrow yet. Today is going well.
It's always been my favourite colour.
Not anymore.
The nurse pulls out a set of purple gloves from the box and puts on a purple gown. She pulls over the purple bin for all of the packaging that holds the syringes of chemotherapy. My notes are in a purple folder. Everything to do with this is purple.
I took my purple phone case off last night, I can no longer look at it. I bought a new swimming cap that wasn't purple and my cousin made and sent me a new beautiful bag with not one fleck of purple in sight. They said chemo would change me, who new purple would be the first thing to go.
"Name?" "Date of birth"? This happens each time, for each canula, each syringe and each tablet. Two nurses check each drug. I repeat my name and date of birth again and again. The red chemo goes in with the syringes and then I sit back with a podcast for the other one which takes over an hour to drip through to me from the bag. The fuzzy, stinging, water up my nose feeling comes back, it makes me sneeze. I don't mind it. The ceiling panels make up a picture of a beach so it fits in.
Two doses done and I'm armed with more anti nausea options and more knowledge. I zipp back up the pass in time for a couple of hours of work and the juggle of drum lessons, swimming club and scouts. No need to think about tomorrow yet. Today is going well.
27th February 2021
I wake up to my pillow covered in hair and the bottom of the shower is the same when I step out of it. It's not emotional, just inconvenient to clean it up.
Liam and I spend the day rearranging his room. No more bunk bed and a set of drums. Without hesitation he disguards his collection of blue bears. I'm the one who can't let them go and put them into a storage box. Our youngest boy is almost twelve. Since my diagnosis, he constantly comes over to me and puts his cheek gently next to mine and just stays there.
My new medications seem to be working really well preventing nausea and helping me sleep. My alarm goes off. It's time to inject myself with the needle that will stimulate my white blood cells. I fill with dread. Not because of the needle, that bit is kind of fun. Because of the aches and pains and fatigue that I know will follow while my body does all of that hard work.
I'll do it after I clean the kitchen, I'll do it after I sew Callum's scout badge back on. I'll just hang up the sheets. Delaying it isn't the answer. I take some panadol, pop the needle in and hope I can manage better this time round.
I see a Charlie Mackesy quote on Instagram; 'one day you will see just how brave you have been'.
I'm feeling brave already.
I wake up to my pillow covered in hair and the bottom of the shower is the same when I step out of it. It's not emotional, just inconvenient to clean it up.
Liam and I spend the day rearranging his room. No more bunk bed and a set of drums. Without hesitation he disguards his collection of blue bears. I'm the one who can't let them go and put them into a storage box. Our youngest boy is almost twelve. Since my diagnosis, he constantly comes over to me and puts his cheek gently next to mine and just stays there.
My new medications seem to be working really well preventing nausea and helping me sleep. My alarm goes off. It's time to inject myself with the needle that will stimulate my white blood cells. I fill with dread. Not because of the needle, that bit is kind of fun. Because of the aches and pains and fatigue that I know will follow while my body does all of that hard work.
I'll do it after I clean the kitchen, I'll do it after I sew Callum's scout badge back on. I'll just hang up the sheets. Delaying it isn't the answer. I take some panadol, pop the needle in and hope I can manage better this time round.
I see a Charlie Mackesy quote on Instagram; 'one day you will see just how brave you have been'.
I'm feeling brave already.
1st March 2021
The fresh breeze blows in from our bedroom window. I'm grateful for it's coolness. It's 4am and my bone marrow is working over time. The nurse said if it's hurting it's working. It's working.
I'm so incapable. I'm used to being able to do everything. I look like an overweight cancer victim. I wonder what it's like to have a wife who is so hard to look at and so incompetent. Or a mum who has to wear a head scarf and isn't able to hide the fact that she feels so unwell. But none of my family make me feel any different, or of any less value, or that I'm being inconvenient in any way.
I know I just have to get through these next few days and then my blood counts will be back to normal and I'll be feeling fine again. I can do this.
The fresh breeze blows in from our bedroom window. I'm grateful for it's coolness. It's 4am and my bone marrow is working over time. The nurse said if it's hurting it's working. It's working.
I'm so incapable. I'm used to being able to do everything. I look like an overweight cancer victim. I wonder what it's like to have a wife who is so hard to look at and so incompetent. Or a mum who has to wear a head scarf and isn't able to hide the fact that she feels so unwell. But none of my family make me feel any different, or of any less value, or that I'm being inconvenient in any way.
I know I just have to get through these next few days and then my blood counts will be back to normal and I'll be feeling fine again. I can do this.
Still 1st March
What's left of my hair is more annoying than anything else. It falls out everywhere. I wait for the kids to go to school and use the clippers Demi Moore - Gi Jane style. Alone in front of the mirror. Jon comes home and says "well that escalated quickly" and finishes it off for me. It's with no emotion, just relief that it's done.
I can't manage much today. I Just switch from the bath to the lounge. When the kids come home, one comes and gives me a hug. I whisper "My hair is gone", they say "I know". The next one gives me a wide berth and then finally exclaims "you look like you have cancer". The third arrives, comes straight over and takes off my bandana to have a good look. "Hmmmm".
I guess we'll all get used to it. My head is a bit sensitive. I don't feel embarrassed, although I haven't left the house yet. The nausea has eased after another sleep and I'm nearly to the end of the day. Our dinner will arrive yet again and the outdoor spa has been unloaded and placed onto the specially built platform by a heap of friends. I'm not in this alone.
What's left of my hair is more annoying than anything else. It falls out everywhere. I wait for the kids to go to school and use the clippers Demi Moore - Gi Jane style. Alone in front of the mirror. Jon comes home and says "well that escalated quickly" and finishes it off for me. It's with no emotion, just relief that it's done.
I can't manage much today. I Just switch from the bath to the lounge. When the kids come home, one comes and gives me a hug. I whisper "My hair is gone", they say "I know". The next one gives me a wide berth and then finally exclaims "you look like you have cancer". The third arrives, comes straight over and takes off my bandana to have a good look. "Hmmmm".
I guess we'll all get used to it. My head is a bit sensitive. I don't feel embarrassed, although I haven't left the house yet. The nausea has eased after another sleep and I'm nearly to the end of the day. Our dinner will arrive yet again and the outdoor spa has been unloaded and placed onto the specially built platform by a heap of friends. I'm not in this alone.
3rd March 2021
I stand in front of the mirror and peel my bamboo hat off my head and look at my reflection. It's not good. I don't like it. I start gingerly walking around, my muscles struggling because I've been in bed for three days. This is really, really hard. Again, I can't fathom doing this again in two weeks time. It's not bearable.
I want to feel like me. I want to look like me. I want to run around. I want to have busy days and be capable of doing everything that I was able to do three months ago. I want this to end.
The pink and grey sky darkens as I look out of our bedroom window. It's two hours later and I've had dinner and I feel like tomorrow will be better than today. My head is starting to clear, the nausea is easing. I can manage the pain until the next two paracetamol tablets are due. I can't think about the next dose of chemotherapy. That situation seems unachievable. I have to choose to think of the days ahead where my body and mind are well for a week. Be grateful for them. Enjoy them.
I stand in front of the mirror and peel my bamboo hat off my head and look at my reflection. It's not good. I don't like it. I start gingerly walking around, my muscles struggling because I've been in bed for three days. This is really, really hard. Again, I can't fathom doing this again in two weeks time. It's not bearable.
I want to feel like me. I want to look like me. I want to run around. I want to have busy days and be capable of doing everything that I was able to do three months ago. I want this to end.
The pink and grey sky darkens as I look out of our bedroom window. It's two hours later and I've had dinner and I feel like tomorrow will be better than today. My head is starting to clear, the nausea is easing. I can manage the pain until the next two paracetamol tablets are due. I can't think about the next dose of chemotherapy. That situation seems unachievable. I have to choose to think of the days ahead where my body and mind are well for a week. Be grateful for them. Enjoy them.
* Writing all this is still really helping me. I know I'd be a jumbled mess without it. Right now I think that today might have been a new all time low, so feel free to skip the read this time, although it does end up with KFC.
4th March 2021
My eyes are stuck together again. I think it's because my eyelashes are falling out. As I wake, I quickly realise that this isn't going to be the day that I was hoping for, and I know that I won't even be able to drop the kids at school. I try to get myself together but understand that it would be dangerous for me to drive. What follows is a teary, emotional, and ends up a physical battle between parent, child and grandparents to separate us and get us on our way for the day.
At the hospital, I sit in the waiting area and look down at my sneakers. These sneakers have run in a ten kilometre race. This body has swam ten kilometres not stop. What can these bits of muscles and bones do now. Nothing. The nausea is mounting as I wait to be seen, and the dizziness makes me feel like I'm going to pass out. The tears slide down my cheeks and drop onto my shirt. I don't want to put the people I love though this.
While the Doctors and nurses ask me questions, mum sees that I'm falling into a deeper hole, I can't answer them. Mum tries to be encouraging but I say abruptly to her "stop talking to me". They can't find a vein. I'm going to pass out. I don't. I get the steroids. The fluids start filtering in. I'm freezing. They cover me with warm blankets but I still feel cold. It's a long time before I can open my eyes again. Longer before I can stand up. My belief in myself has gone.
I have lost the sense of taste. My mouth feels like I'm swallowing poison. I feel like eating something salty on the way home again.
There is a local family who I have known since I was in Kindergarten. They're the ones responsible for the immaculate and faultless rows of sown potatoes between Robertson, Burrawang, Wildes Meadow and the Valley. Their work not only abounds in produce, but it is a form of art when it's viewed from our country roads. When it comes to spuds, there are Hills, and there are hills of them in the vast paddocks where we live and where I grew up. They're a family who welcomes and cares. The range of potatoes they grow is extensive, and up in a diverse amount of locations. I'm just not sure if any of them end up at KFC. Regardless of where these chips have come from, this family has shouted me my KFC today. Again, I am bewildered at how I could possibly contemplate fried food right now, but I can and I do. Mum and Dad get one chance, one offer for me to share with them. They decline and I consume the popcorn chicken and chips, with the sweet and sour sauce with no problems at all.
*And for the record. I'd take a 10km swim over a 10km run any time, any day.
4th March 2021
My eyes are stuck together again. I think it's because my eyelashes are falling out. As I wake, I quickly realise that this isn't going to be the day that I was hoping for, and I know that I won't even be able to drop the kids at school. I try to get myself together but understand that it would be dangerous for me to drive. What follows is a teary, emotional, and ends up a physical battle between parent, child and grandparents to separate us and get us on our way for the day.
At the hospital, I sit in the waiting area and look down at my sneakers. These sneakers have run in a ten kilometre race. This body has swam ten kilometres not stop. What can these bits of muscles and bones do now. Nothing. The nausea is mounting as I wait to be seen, and the dizziness makes me feel like I'm going to pass out. The tears slide down my cheeks and drop onto my shirt. I don't want to put the people I love though this.
While the Doctors and nurses ask me questions, mum sees that I'm falling into a deeper hole, I can't answer them. Mum tries to be encouraging but I say abruptly to her "stop talking to me". They can't find a vein. I'm going to pass out. I don't. I get the steroids. The fluids start filtering in. I'm freezing. They cover me with warm blankets but I still feel cold. It's a long time before I can open my eyes again. Longer before I can stand up. My belief in myself has gone.
I have lost the sense of taste. My mouth feels like I'm swallowing poison. I feel like eating something salty on the way home again.
There is a local family who I have known since I was in Kindergarten. They're the ones responsible for the immaculate and faultless rows of sown potatoes between Robertson, Burrawang, Wildes Meadow and the Valley. Their work not only abounds in produce, but it is a form of art when it's viewed from our country roads. When it comes to spuds, there are Hills, and there are hills of them in the vast paddocks where we live and where I grew up. They're a family who welcomes and cares. The range of potatoes they grow is extensive, and up in a diverse amount of locations. I'm just not sure if any of them end up at KFC. Regardless of where these chips have come from, this family has shouted me my KFC today. Again, I am bewildered at how I could possibly contemplate fried food right now, but I can and I do. Mum and Dad get one chance, one offer for me to share with them. They decline and I consume the popcorn chicken and chips, with the sweet and sour sauce with no problems at all.
*And for the record. I'd take a 10km swim over a 10km run any time, any day.
5th March 2021
The kids want me to come to their first school assembly since Covid, but one of them is worried that the sight of me will frighten the Kindy children. It's time to try out my plaits which are sewed into a head covering. The gaff tape wasn't going to be comfortable on my bald head so I used super glue and sewed some soft felt over the top. It's my first time in public and I think I look amazing. The plaits are perfectly placed. You'd never know.
I don't usually wear a hat. A friend walks past me. My sister inlaw walks past me, she realises and comes back and says I look like a little Swedish girl. I'll take that. Our children smile at me from the front. Beam at me. They're glad I've made it. I'm glad I'm there. I did it. I drove them to school this morning, and I made it to their assembly. The evening of drum lessons, swimming club and scouts became clearly unachievable by 4pm. As did the day on the train with Callum tomorrow. Fortunately everyone's plans will continue on in my absence. There will be fun and happiness this weekend. Relationships will strengthen with other family members while I rest.
The kids want me to come to their first school assembly since Covid, but one of them is worried that the sight of me will frighten the Kindy children. It's time to try out my plaits which are sewed into a head covering. The gaff tape wasn't going to be comfortable on my bald head so I used super glue and sewed some soft felt over the top. It's my first time in public and I think I look amazing. The plaits are perfectly placed. You'd never know.
I don't usually wear a hat. A friend walks past me. My sister inlaw walks past me, she realises and comes back and says I look like a little Swedish girl. I'll take that. Our children smile at me from the front. Beam at me. They're glad I've made it. I'm glad I'm there. I did it. I drove them to school this morning, and I made it to their assembly. The evening of drum lessons, swimming club and scouts became clearly unachievable by 4pm. As did the day on the train with Callum tomorrow. Fortunately everyone's plans will continue on in my absence. There will be fun and happiness this weekend. Relationships will strengthen with other family members while I rest.
6th March 2021
I let myself slide smoothly down into the water. My emotions aren't sure of what to do. I'd lost any expectations of the discomfort ever leaving. But as I go in deeper, and the water comes warmly up to my chin, the reprieve arrives. My cheeks tighten with my grin at the same time as tears leak out of my eyes. It works. The spa soothes my body and my thoughts start to calm.
I lean back and close my eyes, and I relax. Every now and then I open them, each time seeing something different. The clouds parting to reveal bright blue. Two magpies flying over. A butterfly. Bees at work. I close my eyes again and escape in the wonder and awe of how effective this is for me.
The spa is on our property, but at no cost to our family. It's owned by many people who have generously given in the hope that it will help me. It has helped me. It will continue to help me.
I can only hope that everyone understands just how much difference it makes. I truly hope that everyone knows just how thankful I am for their generosity and thoughtfulness. That they understand that this gift is beyond what I could have imagined.
Thank you Cassy for arriving at our house with the idea. Thanks Rosanne for teaming up with Cassy and for both of you making it happen. Thank you to everyone, individuals, families, Robbo Hockey Club, Moss Vale Swimming Club and Robbo Primary School, for your kindness and generosity. Thank you to Just Spas in Wollongong, Maritiana Constructions and Nehemiah Electrical.
My gratefulness will remain beyond chemotherapy. It will still be there long after I need a hair cut.
I let myself slide smoothly down into the water. My emotions aren't sure of what to do. I'd lost any expectations of the discomfort ever leaving. But as I go in deeper, and the water comes warmly up to my chin, the reprieve arrives. My cheeks tighten with my grin at the same time as tears leak out of my eyes. It works. The spa soothes my body and my thoughts start to calm.
I lean back and close my eyes, and I relax. Every now and then I open them, each time seeing something different. The clouds parting to reveal bright blue. Two magpies flying over. A butterfly. Bees at work. I close my eyes again and escape in the wonder and awe of how effective this is for me.
The spa is on our property, but at no cost to our family. It's owned by many people who have generously given in the hope that it will help me. It has helped me. It will continue to help me.
I can only hope that everyone understands just how much difference it makes. I truly hope that everyone knows just how thankful I am for their generosity and thoughtfulness. That they understand that this gift is beyond what I could have imagined.
Thank you Cassy for arriving at our house with the idea. Thanks Rosanne for teaming up with Cassy and for both of you making it happen. Thank you to everyone, individuals, families, Robbo Hockey Club, Moss Vale Swimming Club and Robbo Primary School, for your kindness and generosity. Thank you to Just Spas in Wollongong, Maritiana Constructions and Nehemiah Electrical.
My gratefulness will remain beyond chemotherapy. It will still be there long after I need a hair cut.
8th March 2021
Pre cancer, my body couldn't cope with a 250ml bottle of West Coast Cooler, it can neither continue on the current dose of chemotherapy. The oncologist is giving my body an extra week to recover, and then will reduce the next dose by 10%. I'll also switch to a different type of anti nausea medications.
The cannibis trial team, as well as my oncologist, are not willing to put me at risk of receiving the placebo, so I won't get a go of the medicinal marijuana.
The relief of not having to have chemo on Friday is great. It's tainted with a sense of failure at not being able to manage it. I wanted to be strong enough physically and mentally. The doctors said that the bodies of young women, who don't drink or smoke or have ever used drugs, are shocked by cancer treatment, and that if I was a 70 year old man with a history of substance abuse, I'd be finding this a whole heap easier. For now, they'll ease off to prevent any organ damage. They reassure me that I haven't failed, and point out that another immediate dense dose of doxorubicin isn't worth permanent kidney damage.
Physically, I couldn't cope. Mentally, I was doubting myself too. I gave it a good go. I'm beyond grateful for the respite.
* I absolutely would've had drugs during childbirth given the option. I pleaded for some during Erin's 25 minutes of labour and took two panadol without hesitating afterwards.
Pre cancer, my body couldn't cope with a 250ml bottle of West Coast Cooler, it can neither continue on the current dose of chemotherapy. The oncologist is giving my body an extra week to recover, and then will reduce the next dose by 10%. I'll also switch to a different type of anti nausea medications.
The cannibis trial team, as well as my oncologist, are not willing to put me at risk of receiving the placebo, so I won't get a go of the medicinal marijuana.
The relief of not having to have chemo on Friday is great. It's tainted with a sense of failure at not being able to manage it. I wanted to be strong enough physically and mentally. The doctors said that the bodies of young women, who don't drink or smoke or have ever used drugs, are shocked by cancer treatment, and that if I was a 70 year old man with a history of substance abuse, I'd be finding this a whole heap easier. For now, they'll ease off to prevent any organ damage. They reassure me that I haven't failed, and point out that another immediate dense dose of doxorubicin isn't worth permanent kidney damage.
Physically, I couldn't cope. Mentally, I was doubting myself too. I gave it a good go. I'm beyond grateful for the respite.
* I absolutely would've had drugs during childbirth given the option. I pleaded for some during Erin's 25 minutes of labour and took two panadol without hesitating afterwards.
9th March 2021
I gently peel my hat off my sensitive head and pull on my new mesh swimming cap. Then I put my silicone cap over the top. It feels like normal. I look like I normally would every Tuesday morning.
I dive under and pop up doing freestyle. I can't help smiling. I love the feeling of my capable body doing what it needs to do to get me across the river to the beach.
I'd planned to take the track to the steps with Mark, Vince and Ken today, but the river water is gushing out into the ocean. I'm sure that the tide will take me back the whole way even if I can't do much at all. The others agree. So I continue with them to the usual spot.
We wade knee deep into the river. We hadn't anticipated a southerly to pick up. I sense for just a second, a slight pause while all of us wonder if I really can get back to the boat ramp from here through this bumpy water. Our doubt is unspoken and doesn't last. We all know I can.
Without a conversation or a plan, I feel like a protective arc is formed around me. The shore is on my left, Richard on my right, Peter in front and Brian at the back. I forget about everything else and settle into a slow and relaxing six strokes between each breath. I see an unusually long garfish. I'm sure it's skinny body is about a metre long, but the others doubt my story as we drift easily into the boat ramp at the end of our swim.
It has been four years of swimming with these fellas. Four years of getting changed in the car park under our towels. I don't ever find it awkward. Today I stand and hesitate. Not to roll down my wet cozzies and get my gear on. It's because I need to take my swimming cap off and put my hat on. I don't want them to see. I finally tell them what I have to do and say to them that they're not allowed to look. They do look. And they don't care that I'm bald, as much as I don't care that Richard or Vince is. I fit right in. I always have. Right from the very first day. Nothing changes now.
I gently peel my hat off my sensitive head and pull on my new mesh swimming cap. Then I put my silicone cap over the top. It feels like normal. I look like I normally would every Tuesday morning.
I dive under and pop up doing freestyle. I can't help smiling. I love the feeling of my capable body doing what it needs to do to get me across the river to the beach.
I'd planned to take the track to the steps with Mark, Vince and Ken today, but the river water is gushing out into the ocean. I'm sure that the tide will take me back the whole way even if I can't do much at all. The others agree. So I continue with them to the usual spot.
We wade knee deep into the river. We hadn't anticipated a southerly to pick up. I sense for just a second, a slight pause while all of us wonder if I really can get back to the boat ramp from here through this bumpy water. Our doubt is unspoken and doesn't last. We all know I can.
Without a conversation or a plan, I feel like a protective arc is formed around me. The shore is on my left, Richard on my right, Peter in front and Brian at the back. I forget about everything else and settle into a slow and relaxing six strokes between each breath. I see an unusually long garfish. I'm sure it's skinny body is about a metre long, but the others doubt my story as we drift easily into the boat ramp at the end of our swim.
It has been four years of swimming with these fellas. Four years of getting changed in the car park under our towels. I don't ever find it awkward. Today I stand and hesitate. Not to roll down my wet cozzies and get my gear on. It's because I need to take my swimming cap off and put my hat on. I don't want them to see. I finally tell them what I have to do and say to them that they're not allowed to look. They do look. And they don't care that I'm bald, as much as I don't care that Richard or Vince is. I fit right in. I always have. Right from the very first day. Nothing changes now.
10th March 2021
It's been ten days since I shaved my head. For ten days I have continually worn a hat. I've worn day time hats and night time hats. I have avoided looking at myself in the mirror.
My scalp is patchy. There are bits that are smooth and tender where the hair follicle has fallen out, and there are bits that are spikey from the shave. My head is white from never seeing sun before.
Last night I decided to face it. I looked at my reflection until it was no longer odd. I warned Liam that I was about to walk from my bedroom to the bathroom with no hat. He covered his face with his hands but peeked through his fingers. Right now he's into the Avenger movies. We recently watched Black Panther. The powerful women warriors from Wakanda have shaved heads. As I walked past, he dropped his hands from his face, punched towards the sky with his closed fist and yelled out "Wakanda Forever Mum!" He made me feel as though I was fearless like 'Okoye'.
Everyone is in bed and Jon isn't home. I'm full of confidence from Liam, and relaxed and carefree after a spa. All of a sudden I feel brave enough to take a photo of myself so that I can see what other people see when they look at someone with no hair. I put my phone on our chest of drawers and set the timer. I put my hand on my head to cover some of the bareness and look straight into the camera. It counts down from five and clicks. I expect to pick it up, be overwhelmed by remorse and delete it.
I hesitantly look at the person on the screen. I'm not sure who I'm looking at. The woman that I see seems to think she is some kind of lingerie model posing at the camera with bare shoulders in classic black swimwear. She has no hair. Her skin looks healthy. Her eyes are slightly weary, but her face is determined. She looks beautiful.
I don't select delete. I can't do that to her. I don't need to. She's just right just how she is.
It's been ten days since I shaved my head. For ten days I have continually worn a hat. I've worn day time hats and night time hats. I have avoided looking at myself in the mirror.
My scalp is patchy. There are bits that are smooth and tender where the hair follicle has fallen out, and there are bits that are spikey from the shave. My head is white from never seeing sun before.
Last night I decided to face it. I looked at my reflection until it was no longer odd. I warned Liam that I was about to walk from my bedroom to the bathroom with no hat. He covered his face with his hands but peeked through his fingers. Right now he's into the Avenger movies. We recently watched Black Panther. The powerful women warriors from Wakanda have shaved heads. As I walked past, he dropped his hands from his face, punched towards the sky with his closed fist and yelled out "Wakanda Forever Mum!" He made me feel as though I was fearless like 'Okoye'.
Everyone is in bed and Jon isn't home. I'm full of confidence from Liam, and relaxed and carefree after a spa. All of a sudden I feel brave enough to take a photo of myself so that I can see what other people see when they look at someone with no hair. I put my phone on our chest of drawers and set the timer. I put my hand on my head to cover some of the bareness and look straight into the camera. It counts down from five and clicks. I expect to pick it up, be overwhelmed by remorse and delete it.
I hesitantly look at the person on the screen. I'm not sure who I'm looking at. The woman that I see seems to think she is some kind of lingerie model posing at the camera with bare shoulders in classic black swimwear. She has no hair. Her skin looks healthy. Her eyes are slightly weary, but her face is determined. She looks beautiful.
I don't select delete. I can't do that to her. I don't need to. She's just right just how she is.
11th March 2020
I can feel the grains of sand squeeze through my toes. I really want to run. This time last week I was finding it hard to walk. I start to jog. Just an easy paced comfortable jog. Just one length of the beach. Peter runs beside me and keeps backing off his pace to stay with mine. I make it to the rocks. The full length.
The river is glassy. I swim steadily enough to feel it in my biceps. Four black fish pick at a piece of seaweed as they rotate around it and drift with the tide. The water is smooth. It's clean and clear. The conditions are perfect.
Before I get out I want to see what it feels like underwater with my bare head. I take my cap off. I duck under and swim along the bottom. It's amazing.
I can feel the grains of sand squeeze through my toes. I really want to run. This time last week I was finding it hard to walk. I start to jog. Just an easy paced comfortable jog. Just one length of the beach. Peter runs beside me and keeps backing off his pace to stay with mine. I make it to the rocks. The full length.
The river is glassy. I swim steadily enough to feel it in my biceps. Four black fish pick at a piece of seaweed as they rotate around it and drift with the tide. The water is smooth. It's clean and clear. The conditions are perfect.
Before I get out I want to see what it feels like underwater with my bare head. I take my cap off. I duck under and swim along the bottom. It's amazing.
12th March 2021
I watch her draw two squares and a circle underneath the circle that represents me. The two squares and the circle represent our babies. I swallow the emotion and keep it together. I had been enjoying giving her the information about my family tree until it got to that point. Each time I gave her the details about an aunty, an uncle, a cousin, or my parents and my brother, I thought of each one fondly. I love and deeply respect all of them. They all love and support me.
If I have a defective BRCA 1 or BRCA 2 gene, each child has a 50% chance that they will have it too. Having this genetic error increases your chances of developing cancer dramatically. I don't want this for them.
If I have a defective gene, then I will need to decide if I have a double mastectomy and my ovaries removed. If I choose this option it means I won't need radiation. If the gene is as it should be, I will continue on the same treatment plan which after chemo, finishes in four weeks of daily radiation therapy.
We have two months before the test results will be returned. I have to try and leave all of that aside for now. My mind can't manage the next dose of chemotherapy. If I let it, it gets completely overpowered and starts to sink into believing that getting to the end of treatment is unattainable.
I think back to my very first text to let everyone know my diagnosis where I wrote, "I'm just going to tackle one day at a time". I need to take my own advice.
Today was a good day. It was Jon's birthday and because my chemo was delayed we went out for lunch. I felt happy and healthy today. A day in Jon's company is comfortable and reassuring. It's effortless. I hope that at least on some days, I provide the same.
I watch her draw two squares and a circle underneath the circle that represents me. The two squares and the circle represent our babies. I swallow the emotion and keep it together. I had been enjoying giving her the information about my family tree until it got to that point. Each time I gave her the details about an aunty, an uncle, a cousin, or my parents and my brother, I thought of each one fondly. I love and deeply respect all of them. They all love and support me.
If I have a defective BRCA 1 or BRCA 2 gene, each child has a 50% chance that they will have it too. Having this genetic error increases your chances of developing cancer dramatically. I don't want this for them.
If I have a defective gene, then I will need to decide if I have a double mastectomy and my ovaries removed. If I choose this option it means I won't need radiation. If the gene is as it should be, I will continue on the same treatment plan which after chemo, finishes in four weeks of daily radiation therapy.
We have two months before the test results will be returned. I have to try and leave all of that aside for now. My mind can't manage the next dose of chemotherapy. If I let it, it gets completely overpowered and starts to sink into believing that getting to the end of treatment is unattainable.
I think back to my very first text to let everyone know my diagnosis where I wrote, "I'm just going to tackle one day at a time". I need to take my own advice.
Today was a good day. It was Jon's birthday and because my chemo was delayed we went out for lunch. I felt happy and healthy today. A day in Jon's company is comfortable and reassuring. It's effortless. I hope that at least on some days, I provide the same.
13th March 2021
The steam swirls around as I lift up the lid of the spa and climb in. It's early morning. The sun is still rising and not yet above the escarpment. I take off my hat, lean back, and float in the water. It's completely still. The jets are off. When I breathe in, I rise up so that the water is line with my ears. When I breathe out, I lower, and the water is in line with the edge of my eyes. I can hear my breathing. I can hear my heart beating. It's possibly the most peaceful thing I've ever experienced.
The steam swirls around as I lift up the lid of the spa and climb in. It's early morning. The sun is still rising and not yet above the escarpment. I take off my hat, lean back, and float in the water. It's completely still. The jets are off. When I breathe in, I rise up so that the water is line with my ears. When I breathe out, I lower, and the water is in line with the edge of my eyes. I can hear my breathing. I can hear my heart beating. It's possibly the most peaceful thing I've ever experienced.
14th March 2021
I watch a big set pass and then move towards the edge of the rock behind the big rockpool and wait. The water drops away before another wave comes through. I take my chance and I dive. I swim hard to get away from the rocks. The swell pushes me around and it's raining. There's no need for sun protection. I'm in my ordinary one piece swimmers, my cap and goggles. I look like I would always look.
I start to swim and I swim strongly. The colour of the water is a very dark green. I can't see a thing in or out of it. The ocean throws me around. It isn't fighting me, it's playing with me. Tossing me up and then sliding me down, bouncing me in all directions. When I turn for the shore, I pause and carefully time my take off for an incoming wave. I sprint in front of it until it collects me. My head is down, my arms and body streamlined. I'm speeding in from way out the back. I'm on for so long that I need to lift my head to take a breath. The water continues to take me all the way until I'm surrounded in a frothy, sandy mixture and my feet touch the ground. It has delivered me safely to the beach.
At the end of the day I catch my reflection in the oven door. I'm confused at why I would see myself wearing a bandana. I'm not the mum with breast cancer today. I'm just ordinary me.
I watch a big set pass and then move towards the edge of the rock behind the big rockpool and wait. The water drops away before another wave comes through. I take my chance and I dive. I swim hard to get away from the rocks. The swell pushes me around and it's raining. There's no need for sun protection. I'm in my ordinary one piece swimmers, my cap and goggles. I look like I would always look.
I start to swim and I swim strongly. The colour of the water is a very dark green. I can't see a thing in or out of it. The ocean throws me around. It isn't fighting me, it's playing with me. Tossing me up and then sliding me down, bouncing me in all directions. When I turn for the shore, I pause and carefully time my take off for an incoming wave. I sprint in front of it until it collects me. My head is down, my arms and body streamlined. I'm speeding in from way out the back. I'm on for so long that I need to lift my head to take a breath. The water continues to take me all the way until I'm surrounded in a frothy, sandy mixture and my feet touch the ground. It has delivered me safely to the beach.
At the end of the day I catch my reflection in the oven door. I'm confused at why I would see myself wearing a bandana. I'm not the mum with breast cancer today. I'm just ordinary me.
16th March 2021
The air is cool. The water temperature is not. It's sitting at a balmy 24°C. I'm tired. It doesn't matter. My stroke is efficient. It was probably a combination of my swimming coaches who are responsible for it. Right now I'm glad that I listened to them because it takes no effort to coast along on top of the water. I watch huge pieces of seaweed roll along the bottom in the same direction as me. When I breathe I can see the birds gliding in the sky as effortlessly as me. Our swim finishes far more quickly than I'd like, and the walk along the beach is much more strenuous in the softer sand. We can feel the warmth coming off the ocean as we walk beside it. It's like standing beside a heater. It's flat today, and tropical blue. I consider swimming back up the beach instead of walking but I like the company that I'm in.
We lower back down into the water where the ocean meets the river mouth and float in through the entrance towards the boat ramp. There are so many fish today, round stingrays as well as the ones with the pointy wings. Bright bursts of purple seaweed attached to the ocean floor catch my eye and I think the colour might be forgiven. The world under the surface is too good not to swim back across the sand bar and drift in so that I can watch it all over again.
As I drive up the escarpment the temperature drops and I light our fire. I can't keep my eyes open any longer. I curl up on our lounge and close them. I fight the guilt of having a day time rest and I drift off into a peaceful sleep.
The air is cool. The water temperature is not. It's sitting at a balmy 24°C. I'm tired. It doesn't matter. My stroke is efficient. It was probably a combination of my swimming coaches who are responsible for it. Right now I'm glad that I listened to them because it takes no effort to coast along on top of the water. I watch huge pieces of seaweed roll along the bottom in the same direction as me. When I breathe I can see the birds gliding in the sky as effortlessly as me. Our swim finishes far more quickly than I'd like, and the walk along the beach is much more strenuous in the softer sand. We can feel the warmth coming off the ocean as we walk beside it. It's like standing beside a heater. It's flat today, and tropical blue. I consider swimming back up the beach instead of walking but I like the company that I'm in.
We lower back down into the water where the ocean meets the river mouth and float in through the entrance towards the boat ramp. There are so many fish today, round stingrays as well as the ones with the pointy wings. Bright bursts of purple seaweed attached to the ocean floor catch my eye and I think the colour might be forgiven. The world under the surface is too good not to swim back across the sand bar and drift in so that I can watch it all over again.
As I drive up the escarpment the temperature drops and I light our fire. I can't keep my eyes open any longer. I curl up on our lounge and close them. I fight the guilt of having a day time rest and I drift off into a peaceful sleep.
17th March 2021
I can sit cosily with my shoulders under the water and my six dollar bunnings hat protecting my face from the icy cold rain. With the spa lights on, the heavy drops plonk into the water and then bounce back up making a light show like I'm in Disneyland. I wish I was. The time between now and my next dose on Friday morning is slipping away too quickly. Somehow between now and then I have to accept that it's happening. Somehow I have to be ready for it. I have to be willing for the red doxorubicin to be injected into my blood stream and let it search for cancerous cells, knocking out the good cells on the way. I'll loose my eyebrows. I'll continue to gain weight. I stop myself. It's not until Friday. For now I'm staying in Disneyland.
I can sit cosily with my shoulders under the water and my six dollar bunnings hat protecting my face from the icy cold rain. With the spa lights on, the heavy drops plonk into the water and then bounce back up making a light show like I'm in Disneyland. I wish I was. The time between now and my next dose on Friday morning is slipping away too quickly. Somehow between now and then I have to accept that it's happening. Somehow I have to be ready for it. I have to be willing for the red doxorubicin to be injected into my blood stream and let it search for cancerous cells, knocking out the good cells on the way. I'll loose my eyebrows. I'll continue to gain weight. I stop myself. It's not until Friday. For now I'm staying in Disneyland.
18th March 2021
I feel like I have to make the most of my swim. The tide is coming in fast but it's not too strong. Today I can swim against it. I swim with the tide up to Ken who is ahead of me and then against the tide to the back of the pack. Back and forth up and down the river until we all get to the track head that crosses over to the beach.
We swam through the rain and in and out of the cooler pockets of water coming from further up the river. The cold parts passing by us as quickly as they had arrived. On the beach we find a petrified seahorse lying on the sand as we carefully avoid treading on the blue bottles. Before the swim, I still wasn't ready to face the fact that another dose of chemo will be surging through my system tomorrow. After the swim I'm willing to accept it.
Our kind hearted and thoughtful Liam turned twelve today. His birthday has again coincided with heavy rain. Fortunately he's had "the best birthday ever". It seems possibly a generous statement considering he's been at school, and all I sent was a few packets of lamingtons. And what does he really want for his birthday? For me to be happy.
I feel like I have to make the most of my swim. The tide is coming in fast but it's not too strong. Today I can swim against it. I swim with the tide up to Ken who is ahead of me and then against the tide to the back of the pack. Back and forth up and down the river until we all get to the track head that crosses over to the beach.
We swam through the rain and in and out of the cooler pockets of water coming from further up the river. The cold parts passing by us as quickly as they had arrived. On the beach we find a petrified seahorse lying on the sand as we carefully avoid treading on the blue bottles. Before the swim, I still wasn't ready to face the fact that another dose of chemo will be surging through my system tomorrow. After the swim I'm willing to accept it.
Our kind hearted and thoughtful Liam turned twelve today. His birthday has again coincided with heavy rain. Fortunately he's had "the best birthday ever". It seems possibly a generous statement considering he's been at school, and all I sent was a few packets of lamingtons. And what does he really want for his birthday? For me to be happy.
19th March 2021
It's dark. Really dark. I step on a wet slimy slug as I walk bare foot down the steps. I push the spa cover back just enough so that I can slide in. With my bunnings hat on and the cover pulled up like a blanket, I close my eyes in the warm comfortable water. The kookaburras are the first to wake up, the traffic noise starts and then a train. The sky lightens and it's time for me to make a dash through the cold air back into the house to sort out school lunches.
It's still raining and there are now seven pairs of wet swimmers on the clothes line. I'm not even close to running out of dry pairs. I wonder if my dose of doxorubicin has already been prepared. Is it already in the syringes in the fridge with my name and date of birth on it? Has it already been double bagged to protect anyone who has to move it until it gets to me.
The nurse runs though all of the questions and then asks if I have any other pain. I tell her my throat was a bit sore yesterday. Everything stops. I'm given a mask. I'm sent for a covid test. My chemotherapy is rescheduled for Monday.
It's dark. Really dark. I step on a wet slimy slug as I walk bare foot down the steps. I push the spa cover back just enough so that I can slide in. With my bunnings hat on and the cover pulled up like a blanket, I close my eyes in the warm comfortable water. The kookaburras are the first to wake up, the traffic noise starts and then a train. The sky lightens and it's time for me to make a dash through the cold air back into the house to sort out school lunches.
It's still raining and there are now seven pairs of wet swimmers on the clothes line. I'm not even close to running out of dry pairs. I wonder if my dose of doxorubicin has already been prepared. Is it already in the syringes in the fridge with my name and date of birth on it? Has it already been double bagged to protect anyone who has to move it until it gets to me.
The nurse runs though all of the questions and then asks if I have any other pain. I tell her my throat was a bit sore yesterday. Everything stops. I'm given a mask. I'm sent for a covid test. My chemotherapy is rescheduled for Monday.
21st March 2021
It's beanie weather in the spa. When I come inside and take it off, I can see the reflection of my bald head in the the glass of our wedding photo. How easily "in sickness and in health" rolls off your tongue on your wedding day. Jon clearly meant it. He has spent the last 24 hours making sure that the spa recovered from a certain 12 year olds birthday party. Apparently the filter wasn't pretty, nor the slimy film around the edge. But with a lot of hard work in the pouring rain, and bit more chlorine than expected, it's ready for me to use.
The little twenty-five year old girl in the wedding photo has no idea of what is ahead. The other photos around the house with me in them have started to bother me. I'm not sure of who I am looking at, she seems like a different person, from a different life. The same thing happens when I scroll through my Instagram. There is all of this positive advice from a healthy young woman who used to be me. I wish I was as strong as her. I wish I was as confident. I think she can do anything. I'm just not sure that I can.
It's beanie weather in the spa. When I come inside and take it off, I can see the reflection of my bald head in the the glass of our wedding photo. How easily "in sickness and in health" rolls off your tongue on your wedding day. Jon clearly meant it. He has spent the last 24 hours making sure that the spa recovered from a certain 12 year olds birthday party. Apparently the filter wasn't pretty, nor the slimy film around the edge. But with a lot of hard work in the pouring rain, and bit more chlorine than expected, it's ready for me to use.
The little twenty-five year old girl in the wedding photo has no idea of what is ahead. The other photos around the house with me in them have started to bother me. I'm not sure of who I am looking at, she seems like a different person, from a different life. The same thing happens when I scroll through my Instagram. There is all of this positive advice from a healthy young woman who used to be me. I wish I was as strong as her. I wish I was as confident. I think she can do anything. I'm just not sure that I can.
I don't have covid.
22nd March
The nurse is so proud of the canula she put in my arm, she calls over her supervisor to have a look because "last week I couldn't manage even one" she tells me. I'm pleased for her. I wish I was more chatty but I don't have nerves of steel today, they're more like bits of sea grass flapping around in the current.
Once the syringes of red chemo are done, I feel like I can tick another one off. There is nothing I can do now but wait for the side effects.
It's still pouring with rain. The East Coast of New South Wales is flooding. I wonder what condition the river is in. The pass is closed so I have to drive by it anyway. It's a brown filthy mess of run off that is leaking out into the ocean and is making the waves brown. I know I can't get in it. The beach further down however, might be ok.
I drive under the railway bridge at Bombo and park a few spaces up from some surfers watching the waves in their vans. No one is in the water. No one is on the beach. I ask the surfers if they'd look out for me for ten minutes. They say "What do we do if you get into trouble?". It wasn't the response I was looking for. I tell them it's ok. I can swim. I run down the path and onto the sand. I'm only a few metres into the water and I can feel the ocean pulling me out. I stay where I can reach the bottom and dive under the waves. I'm not wearing a cap. Or a hat. I'd asked the surfers if I should go in bare headed. They were very encouraging and I know I'll never see them again.
They give me a wave, and I think a respectful nod as I give them a thumbs up when I get back to the car. I'm puffing from the run up the hill. I drive away knowing that having a dip was the best decision I could have made today for both me and my family. I feel good.
The nurse is so proud of the canula she put in my arm, she calls over her supervisor to have a look because "last week I couldn't manage even one" she tells me. I'm pleased for her. I wish I was more chatty but I don't have nerves of steel today, they're more like bits of sea grass flapping around in the current.
Once the syringes of red chemo are done, I feel like I can tick another one off. There is nothing I can do now but wait for the side effects.
It's still pouring with rain. The East Coast of New South Wales is flooding. I wonder what condition the river is in. The pass is closed so I have to drive by it anyway. It's a brown filthy mess of run off that is leaking out into the ocean and is making the waves brown. I know I can't get in it. The beach further down however, might be ok.
I drive under the railway bridge at Bombo and park a few spaces up from some surfers watching the waves in their vans. No one is in the water. No one is on the beach. I ask the surfers if they'd look out for me for ten minutes. They say "What do we do if you get into trouble?". It wasn't the response I was looking for. I tell them it's ok. I can swim. I run down the path and onto the sand. I'm only a few metres into the water and I can feel the ocean pulling me out. I stay where I can reach the bottom and dive under the waves. I'm not wearing a cap. Or a hat. I'd asked the surfers if I should go in bare headed. They were very encouraging and I know I'll never see them again.
They give me a wave, and I think a respectful nod as I give them a thumbs up when I get back to the car. I'm puffing from the run up the hill. I drive away knowing that having a dip was the best decision I could have made today for both me and my family. I feel good.
24th March 2020
The new anti nausea medication is strong. I can't fight the sleepiness. I've slept all day and am due for another tablet in a few hours time. However sleepiness is better than nausea. Far far better.
The new anti nausea medication is strong. I can't fight the sleepiness. I've slept all day and am due for another tablet in a few hours time. However sleepiness is better than nausea. Far far better.
27th March 2021
The moon creeps it's way from out behind the tree and slowly makes its way west across the sky. It's not quite full. It's more like the shape of an opal. A big wave of cloud moves towards it and creates shapes as it passes over the bright reflection.
Erin apologises. "Sorry I'm being wriggly mum". She's trying to beat her time of four seconds by going under the water in the spa diagonally and back again in the dark. She senses the bumps into my legs are getting too much for me and comes and sits on my lap and says "I love you mum, you're the best mum in the world".
At the moment I'm anything but. I'm not the mum I want to be, or the wife, or the daughter, or the sister, or the friend. I'm not my independent self. I'm not someone you can call if you need help with anything. It takes all my physical and mental strength just to get myself through the days and then the nights. I'm not good company. I give only one word answers.
I wake and am hesitant to look at the time. I don't want to do another 2am to 6am stretch. I look at my phone. It's 4:58am. I'm relieved. I've had a solid sleep. I feel like I'm on the other side of this dose of chemotherapy. The ten percent reduction in dose has made a difference. The different nausea medication wiped me out with drowsiness for a few days, but beat the nausea.
I have no idea how many people read along with me. I deliberately have nowhere to subscribe or any button to like my posts. But every now and then I get a text or a comment in a conversation and know that you are reading along with me. We've made it through this one. You've listened to me when I needed it. I may never get to thank you for your time. Please know that I'm truly grateful for it.
The moon creeps it's way from out behind the tree and slowly makes its way west across the sky. It's not quite full. It's more like the shape of an opal. A big wave of cloud moves towards it and creates shapes as it passes over the bright reflection.
Erin apologises. "Sorry I'm being wriggly mum". She's trying to beat her time of four seconds by going under the water in the spa diagonally and back again in the dark. She senses the bumps into my legs are getting too much for me and comes and sits on my lap and says "I love you mum, you're the best mum in the world".
At the moment I'm anything but. I'm not the mum I want to be, or the wife, or the daughter, or the sister, or the friend. I'm not my independent self. I'm not someone you can call if you need help with anything. It takes all my physical and mental strength just to get myself through the days and then the nights. I'm not good company. I give only one word answers.
I wake and am hesitant to look at the time. I don't want to do another 2am to 6am stretch. I look at my phone. It's 4:58am. I'm relieved. I've had a solid sleep. I feel like I'm on the other side of this dose of chemotherapy. The ten percent reduction in dose has made a difference. The different nausea medication wiped me out with drowsiness for a few days, but beat the nausea.
I have no idea how many people read along with me. I deliberately have nowhere to subscribe or any button to like my posts. But every now and then I get a text or a comment in a conversation and know that you are reading along with me. We've made it through this one. You've listened to me when I needed it. I may never get to thank you for your time. Please know that I'm truly grateful for it.
Still 27th of March
I don't want a DNF (Did Not Finish) next to my name. I already have one. It was from a team triathlon where our very capable runner though it was only one lap, not two, of a circular course. I don't want another one.
I have to be able to get through this treatment, but there's no finish line. There's no due date. There is no firm end that I can aim for. Everything is so variable. Decisions depend on my body's reactions, on test results, on Doctor's assessments based on their knowledge and experience.
I can't tell Erin I'll be better by her birthday. She says "I just don't know how a birthday would work if you are sick". I know I won't be okay by then. Her birthday is in May. I don't know if I can aim for Spring or Christmas or a year after diagnosis. They say it takes another six months for energy levels to return after everything is all done.
Then what if it returns. What if I have to do this again in five years time.
Again I have to go back to one thing at a time. The alternative is too unpredictable. I have things to look forward to. At some stage this might seem like a small piece of time in a very big life.
I don't want a DNF (Did Not Finish) next to my name. I already have one. It was from a team triathlon where our very capable runner though it was only one lap, not two, of a circular course. I don't want another one.
I have to be able to get through this treatment, but there's no finish line. There's no due date. There is no firm end that I can aim for. Everything is so variable. Decisions depend on my body's reactions, on test results, on Doctor's assessments based on their knowledge and experience.
I can't tell Erin I'll be better by her birthday. She says "I just don't know how a birthday would work if you are sick". I know I won't be okay by then. Her birthday is in May. I don't know if I can aim for Spring or Christmas or a year after diagnosis. They say it takes another six months for energy levels to return after everything is all done.
Then what if it returns. What if I have to do this again in five years time.
Again I have to go back to one thing at a time. The alternative is too unpredictable. I have things to look forward to. At some stage this might seem like a small piece of time in a very big life.
28th March 2021
It takes all my concentration to stay standing. I'm dizzy and I'm tired. It was explained to me in the very beginning that my energy levels would be low. I've never been someone to want a rest during the day but I can't continue without one. I need to make the decision to lie down before that decision is taken away from me and my body does it by itself.
My pillow is comfortable against my bloating face. Our bed looks out through a bay window onto our front yard. The Christmas bush is poking up higher than usual. I've asked Jon to leave it for now, so that at times I can be hidden behind it as I lie here this season.
I struggle with the balance. How hard am I meant to fight the fatigue and keep moving? When am I meant to let my body rest? Am I being lazy or am I being wise? Everything has become a juggle. Hydration. Digestion. Skin protection. Basic things are taking their toll on my time and energy.
My family and friends are patient. They'll wait for me. They know that this will pass even when I can't see the end of it. No one has made me feel like a burden. I'm continually reassured that it's okay for life to be different right now and that I'm not letting anyone down.
I close my eyes just for a bit and enjoy the sounds of life outside our window instead of the sights. It's a beautiful autumn day and I can still appreciate it.
It takes all my concentration to stay standing. I'm dizzy and I'm tired. It was explained to me in the very beginning that my energy levels would be low. I've never been someone to want a rest during the day but I can't continue without one. I need to make the decision to lie down before that decision is taken away from me and my body does it by itself.
My pillow is comfortable against my bloating face. Our bed looks out through a bay window onto our front yard. The Christmas bush is poking up higher than usual. I've asked Jon to leave it for now, so that at times I can be hidden behind it as I lie here this season.
I struggle with the balance. How hard am I meant to fight the fatigue and keep moving? When am I meant to let my body rest? Am I being lazy or am I being wise? Everything has become a juggle. Hydration. Digestion. Skin protection. Basic things are taking their toll on my time and energy.
My family and friends are patient. They'll wait for me. They know that this will pass even when I can't see the end of it. No one has made me feel like a burden. I'm continually reassured that it's okay for life to be different right now and that I'm not letting anyone down.
I close my eyes just for a bit and enjoy the sounds of life outside our window instead of the sights. It's a beautiful autumn day and I can still appreciate it.
29th March 2021
The beach is patrolled. Mum said that if I went for a swim today it had to be between the flags. You have to do what your mother says even if you're forty one.
I look silly. I feel ridiculous. An incoming wave hides me underneath it but only for a moment. My cap slips, so I take it off. The insecurities of how I look change quickly into me not caring at all. I'm already out past the breakers. I line up the horizon and swim towards it. I wonder what would happen if I didn't stop. Would the life guards come and get me? I'm the only one in the water, it might give them something to do. I dive down deeply and scream in worn down frustration and dread as loudly as I can. When I pop up I'm faced with a big set of waves. I lean back in the water and let them roll me about.
I entered the water depleted. Fatigued. At a loss of how to even get from the beach to parking the car at the hospital, let alone sitting through an oncology appointment. I leave the water stronger. My calve muscles tighten as I pound up and over a dune. I get dressed under my hooded towel, get in the car and get on with it.
My appointment is two hours late. The doctor lays it flat out. She says "If you were seventy five, I wouldn't charter another dose. You're forty one. You have too much to lose". The 9th of April is confirmed for my next treatment. I stand up to leave and she says "You're stoic aren't you". "I'm going to be the winner" I say over my shoulder like it's a childish game that I've decided to play.
I like that she thinks I'm stoic. If she's confident that I can do it, I must be able to.
The beach is patrolled. Mum said that if I went for a swim today it had to be between the flags. You have to do what your mother says even if you're forty one.
I look silly. I feel ridiculous. An incoming wave hides me underneath it but only for a moment. My cap slips, so I take it off. The insecurities of how I look change quickly into me not caring at all. I'm already out past the breakers. I line up the horizon and swim towards it. I wonder what would happen if I didn't stop. Would the life guards come and get me? I'm the only one in the water, it might give them something to do. I dive down deeply and scream in worn down frustration and dread as loudly as I can. When I pop up I'm faced with a big set of waves. I lean back in the water and let them roll me about.
I entered the water depleted. Fatigued. At a loss of how to even get from the beach to parking the car at the hospital, let alone sitting through an oncology appointment. I leave the water stronger. My calve muscles tighten as I pound up and over a dune. I get dressed under my hooded towel, get in the car and get on with it.
My appointment is two hours late. The doctor lays it flat out. She says "If you were seventy five, I wouldn't charter another dose. You're forty one. You have too much to lose". The 9th of April is confirmed for my next treatment. I stand up to leave and she says "You're stoic aren't you". "I'm going to be the winner" I say over my shoulder like it's a childish game that I've decided to play.
I like that she thinks I'm stoic. If she's confident that I can do it, I must be able to.
30th March 2021
The water is thick and my arms are heavy. I can't see through my foggy goggles or through the yellow water. The river is still recovering from the heavy rains. I'm still recovering from treatment. We both just need a few more days. It won't be long before were both sparkling again.
The rains and the tides have changed the shape of the beach. The sand is covered in debris. There are pieces of burnt wood and ash still washing up after last season's bush fires. How long will it be before the reminders of that summer's trauma stop, or for some, will they ever stop.
I'll get reminders too. Long after this is over. Memories that will hinder as well as thoughts that will cause me to reflect on my endurance. More than both of those, I'll welcome every moment that reminds me of the enduring care and support.
The water is thick and my arms are heavy. I can't see through my foggy goggles or through the yellow water. The river is still recovering from the heavy rains. I'm still recovering from treatment. We both just need a few more days. It won't be long before were both sparkling again.
The rains and the tides have changed the shape of the beach. The sand is covered in debris. There are pieces of burnt wood and ash still washing up after last season's bush fires. How long will it be before the reminders of that summer's trauma stop, or for some, will they ever stop.
I'll get reminders too. Long after this is over. Memories that will hinder as well as thoughts that will cause me to reflect on my endurance. More than both of those, I'll welcome every moment that reminds me of the enduring care and support.
2nd April 2021
Irritable is probably not a strong enough word. I've slept on and off all afternoon. Twice I tried to get up but with no success. I'm now using all of my concentration to follow a recipe card from a grocery box. It's chorizo pasta. It's not difficult. Erin is asking me questions about how to draw a rabbit and the boys are poking each other. By the time Jon comes inside and asks me to help him with something he cops it.
My fuse is short. I've said "bloody hell" twice this week. The kids have been shocked and disgusted at my language. It's only a matter of time before they hear worse from me. Jon suggests that I get back in the spa. It's for everyone's sake.
There's no moon. It's dark and the stars are out. It's a public holiday so there is no smell from the wood fire pizza shop wafting up and over from the main street. It's quiet. I can breathe. The air is crisp and I can feel it's coolness when it's sucked down into my lungs. I rest my head against the spa cover and fall back to sleep.
Irritable is probably not a strong enough word. I've slept on and off all afternoon. Twice I tried to get up but with no success. I'm now using all of my concentration to follow a recipe card from a grocery box. It's chorizo pasta. It's not difficult. Erin is asking me questions about how to draw a rabbit and the boys are poking each other. By the time Jon comes inside and asks me to help him with something he cops it.
My fuse is short. I've said "bloody hell" twice this week. The kids have been shocked and disgusted at my language. It's only a matter of time before they hear worse from me. Jon suggests that I get back in the spa. It's for everyone's sake.
There's no moon. It's dark and the stars are out. It's a public holiday so there is no smell from the wood fire pizza shop wafting up and over from the main street. It's quiet. I can breathe. The air is crisp and I can feel it's coolness when it's sucked down into my lungs. I rest my head against the spa cover and fall back to sleep.
3rd April 2021
I turn around quickly and squeeze my eyes shut. No no no no no no. A young man is about to offer me his seat on the busy light rail. Had he caught my eye I wouldn't have turned down his kindness, but I don't want to be the person who looks like a cancer victim that needs the courtesy seat.
Before we left, Erin helped me choose what to wear and pick out jewelry. I needed her help to make sure my head wear didn't clash with my clothes. We went for classic black and stuck with the bandana not the scarf that I had spent the time learning how to tie.
I'm now in the long line for the women's bathroom at the Lyric theatre. I lower my head and blink until the tears stop threatening to spill out. Everyone is at the mirrors adjusting their pretty hair and checking on their dresses. I try to avoid my reflection, but I see a plump sick looking person with dark circles under her eyes. I feel completely alone. I certainly don't belong here. I stop and think of where I do belong. It's on a boat ramp in my swimmers with a bunch of blokes.
I can feel my phone buzzing in my bag. I pull it out while I wait. There is message after message of "beautiful" on the photo collage that I posted of myself with no hair. The timing is perfect. The reassurance appreciated. I'm not alone.
I turn around quickly and squeeze my eyes shut. No no no no no no. A young man is about to offer me his seat on the busy light rail. Had he caught my eye I wouldn't have turned down his kindness, but I don't want to be the person who looks like a cancer victim that needs the courtesy seat.
Before we left, Erin helped me choose what to wear and pick out jewelry. I needed her help to make sure my head wear didn't clash with my clothes. We went for classic black and stuck with the bandana not the scarf that I had spent the time learning how to tie.
I'm now in the long line for the women's bathroom at the Lyric theatre. I lower my head and blink until the tears stop threatening to spill out. Everyone is at the mirrors adjusting their pretty hair and checking on their dresses. I try to avoid my reflection, but I see a plump sick looking person with dark circles under her eyes. I feel completely alone. I certainly don't belong here. I stop and think of where I do belong. It's on a boat ramp in my swimmers with a bunch of blokes.
I can feel my phone buzzing in my bag. I pull it out while I wait. There is message after message of "beautiful" on the photo collage that I posted of myself with no hair. The timing is perfect. The reassurance appreciated. I'm not alone.
4th April 2021
I tap my card but the automatic door to the pool doesn't open. I check the time. It's 5:59am. I'm a minute too early. The guy comes in and unlocks the door and I wander through to the pool deck that looks out over Darling Harbour. I'm not meant to swim in public pools due to the risk of infection. It's a beautiful infinity pool. There has been no one in it for at least eight hours over night. It's been fourteen days since my last dose of chemotherapy. I'm getting in.
The weightlessness erases all of yesterday's insecurities. My confidence increases as I stroke up the pool on my back. The buildings tower around me. The half moon is still up high in the sky. I'm in the middle of the city but alone. It's the good alone. The quiet peaceful alone. Not the isolated lonely one like the day before. I'm comfortable. I'm happy. I'm well.
I tap my card but the automatic door to the pool doesn't open. I check the time. It's 5:59am. I'm a minute too early. The guy comes in and unlocks the door and I wander through to the pool deck that looks out over Darling Harbour. I'm not meant to swim in public pools due to the risk of infection. It's a beautiful infinity pool. There has been no one in it for at least eight hours over night. It's been fourteen days since my last dose of chemotherapy. I'm getting in.
The weightlessness erases all of yesterday's insecurities. My confidence increases as I stroke up the pool on my back. The buildings tower around me. The half moon is still up high in the sky. I'm in the middle of the city but alone. It's the good alone. The quiet peaceful alone. Not the isolated lonely one like the day before. I'm comfortable. I'm happy. I'm well.
6th April 2021
It's low tide. The sand is flat and hard and reflecting the sky. It's too good not to jog. So we do. The river is brown and I can't see the bottom. My swim doesn't come effortlessly today. I increase my kick to try and take some of the work load off my arms. My body is tired. My mind has begun to build up apprehension about the week ahead. I set the dread aside and spend the time immersed in the comfort and familiarity of the water and this place instead. I can't change what is ahead. I'm powerless to be able to alter it at all. I'm frustrated each time I remember how incapable I'll be next week. I'm relying on others more than ever before. It's a lesson that I don't want to learn.
It's low tide. The sand is flat and hard and reflecting the sky. It's too good not to jog. So we do. The river is brown and I can't see the bottom. My swim doesn't come effortlessly today. I increase my kick to try and take some of the work load off my arms. My body is tired. My mind has begun to build up apprehension about the week ahead. I set the dread aside and spend the time immersed in the comfort and familiarity of the water and this place instead. I can't change what is ahead. I'm powerless to be able to alter it at all. I'm frustrated each time I remember how incapable I'll be next week. I'm relying on others more than ever before. It's a lesson that I don't want to learn.
7th April 2021
I look back at the reflection of the person brushing her teeth in the mirror. I stop brushing and lean forward to look more closely. I stare at one eyebrow and then the other, and then back again. I can't help but smile. It turns into a giggle. It's not ideal that my eyebrows have started to fall out, and one is far thinner than the other. I ask a few people if they can tell. They kindly deny that there is any difference. My brother on the other hand gives it to me straight. He says I look like 'The Rock' (Dwayne Johnson) when his eyebrow is raised. Google 'the rock eyebrow'. You'll see what he means.
I question Jon as to why my eyebrows are falling out now. It's been three weeks since my last dose of chemo. He says he reckons it works like round up. I tell him that I don't want to do the forth dose of the awful red chemo. He quickly replies that it would be like swimming a medley without the butterfly at the end. He's tried really hard with his analogy. If only he knew the order of strokes in an individual medley. Freestyle is last. And it's just as well. Butterfly at the end would be torture. I've only got freestyle to go. It burns at the end of a medley. But it's not butterfly.
I look back at the reflection of the person brushing her teeth in the mirror. I stop brushing and lean forward to look more closely. I stare at one eyebrow and then the other, and then back again. I can't help but smile. It turns into a giggle. It's not ideal that my eyebrows have started to fall out, and one is far thinner than the other. I ask a few people if they can tell. They kindly deny that there is any difference. My brother on the other hand gives it to me straight. He says I look like 'The Rock' (Dwayne Johnson) when his eyebrow is raised. Google 'the rock eyebrow'. You'll see what he means.
I question Jon as to why my eyebrows are falling out now. It's been three weeks since my last dose of chemo. He says he reckons it works like round up. I tell him that I don't want to do the forth dose of the awful red chemo. He quickly replies that it would be like swimming a medley without the butterfly at the end. He's tried really hard with his analogy. If only he knew the order of strokes in an individual medley. Freestyle is last. And it's just as well. Butterfly at the end would be torture. I've only got freestyle to go. It burns at the end of a medley. But it's not butterfly.
8th April 2021
Liam and Erin are laughing as we get pulled around the sandbank by the outgoing tide. The water is moving quickly out to sea but passes over the shallows first where we can stand up and run back around to do it again and again.
I've had to bribe them with ice cream just to get here. Now they're having fun as well as learning what to do in moving water. I got my swim. Callum filmed a train. We ate fish and chips and the promised ice cream cones. I hope these memories are stronger than the ones where I'm too tired to join in. I don't know what they'll take from the good days or from the bad ones. Today was a good one.
Liam and Erin are laughing as we get pulled around the sandbank by the outgoing tide. The water is moving quickly out to sea but passes over the shallows first where we can stand up and run back around to do it again and again.
I've had to bribe them with ice cream just to get here. Now they're having fun as well as learning what to do in moving water. I got my swim. Callum filmed a train. We ate fish and chips and the promised ice cream cones. I hope these memories are stronger than the ones where I'm too tired to join in. I don't know what they'll take from the good days or from the bad ones. Today was a good one.
9th April 2021
The last bit of the red fluid is squeezed from the syringe into my canula. I feel relieved that the fourth dose is finished, even though the consequenses are still to come.
The nurses ask me which date has been set to start the twelve weeks of taxol. "On my birthday" I reply. "Oh no. We can do better than that. We'll change it for you" they say. I tell them that I'd rather have it on my birthday on the Friday than miss a Thursday morning swim. The paper work is changed to Thursday the 29th at 12pm. Suits me.
We choose 'Shrek's green swap' as the spa colour for the evening. There's time to enjoy the moment rather than anticipate what is ahead.
Sleep is begging me to close my eyes. Erin tries to hold them open for me. They're too heavy for both of us.
The last bit of the red fluid is squeezed from the syringe into my canula. I feel relieved that the fourth dose is finished, even though the consequenses are still to come.
The nurses ask me which date has been set to start the twelve weeks of taxol. "On my birthday" I reply. "Oh no. We can do better than that. We'll change it for you" they say. I tell them that I'd rather have it on my birthday on the Friday than miss a Thursday morning swim. The paper work is changed to Thursday the 29th at 12pm. Suits me.
We choose 'Shrek's green swap' as the spa colour for the evening. There's time to enjoy the moment rather than anticipate what is ahead.
Sleep is begging me to close my eyes. Erin tries to hold them open for me. They're too heavy for both of us.
12th April 2021
The house is quiet. I can't remember many times when I thought the kids would be better off without me for a few days. They're off on adventures. Big adventures. Healthy adventures. Without me.
It allows me to go from my bed to the lounge to the spa and back again. It prevents the guilt from not being able to cart them around for school holiday fun. It stops my irritability at their squabbles and their mess. It only took me about two hours to genuinely miss them and for one of those hours I was asleep.
Again the drowsiness takes everything. I can't fight it. I'm not trying to. I let it make me rest.
The Olanzapine, Lorazepam, Dexamethasone, Metoclopramide and Pantoprazole are managing the nausea. The panadol and lactulose are managing the medications. I'm nearly through this round. I've nearly made it through the first type of chemo.
The house is quiet. I can't remember many times when I thought the kids would be better off without me for a few days. They're off on adventures. Big adventures. Healthy adventures. Without me.
It allows me to go from my bed to the lounge to the spa and back again. It prevents the guilt from not being able to cart them around for school holiday fun. It stops my irritability at their squabbles and their mess. It only took me about two hours to genuinely miss them and for one of those hours I was asleep.
Again the drowsiness takes everything. I can't fight it. I'm not trying to. I let it make me rest.
The Olanzapine, Lorazepam, Dexamethasone, Metoclopramide and Pantoprazole are managing the nausea. The panadol and lactulose are managing the medications. I'm nearly through this round. I've nearly made it through the first type of chemo.
13th April 2021
The conditions are perfect. The water is a milky turquiose colour. It's an incoming tide with the perfect timing for a two way swim. The only problem is my failing body and my lowering fitness level. I struggle along realising that I won't be able to swim back. Instead of feeling defeated, I relax and enjoy the bubbles from my breath move past my face and watch the water droplets fall from my arms as they stroke over my head.
They wait for me. Pull my hand to get me up and over the tree root steps and the sun warms us as we walk back along the beach together. I'm exhausted. I make it home and spend the rest of the day in bed. The swim has tired every part of me including my mind. But it has given me purpose and risen my self esteem. Every stroke, every kick, was worth it. Some days are easier than others to keep on swimming.
The conditions are perfect. The water is a milky turquiose colour. It's an incoming tide with the perfect timing for a two way swim. The only problem is my failing body and my lowering fitness level. I struggle along realising that I won't be able to swim back. Instead of feeling defeated, I relax and enjoy the bubbles from my breath move past my face and watch the water droplets fall from my arms as they stroke over my head.
They wait for me. Pull my hand to get me up and over the tree root steps and the sun warms us as we walk back along the beach together. I'm exhausted. I make it home and spend the rest of the day in bed. The swim has tired every part of me including my mind. But it has given me purpose and risen my self esteem. Every stroke, every kick, was worth it. Some days are easier than others to keep on swimming.
15th April 2021
I dive under an incoming wave into a fizz of sand and bubbles and pop up to see the joy in Liam's face as he looks back at me after jumping over the next wave. I sense from him that this isn't a day where he'll remember his mum covered from wrist to ankle and wearing a swimming cap whilst in the waves at the beach. What I'm wearing is something that only I am self conscious about. No one else cares. It definitely doesn't concern Liam. I don't even know why I care. I think of my Muslim friend. I don't think she looks odd. I think she looks modest. Respectful. Kind and thoughtful. I hope I portray the same.
Today Liam and I have floated with the tide at the river. We've fished until we've run out of bait. We've dived under and over the waves at the beach in perfect autumn weather. I hope he remembers today as a day that I had time for him. Just him. All day.
Realistically, the benefit was mine.
I dive under an incoming wave into a fizz of sand and bubbles and pop up to see the joy in Liam's face as he looks back at me after jumping over the next wave. I sense from him that this isn't a day where he'll remember his mum covered from wrist to ankle and wearing a swimming cap whilst in the waves at the beach. What I'm wearing is something that only I am self conscious about. No one else cares. It definitely doesn't concern Liam. I don't even know why I care. I think of my Muslim friend. I don't think she looks odd. I think she looks modest. Respectful. Kind and thoughtful. I hope I portray the same.
Today Liam and I have floated with the tide at the river. We've fished until we've run out of bait. We've dived under and over the waves at the beach in perfect autumn weather. I hope he remembers today as a day that I had time for him. Just him. All day.
Realistically, the benefit was mine.
17th April 2021
Temporary. My doctor's certificate says that my condition is temporary. I sometimes loose sight of that.
The sky is not quite light yet. The water temp is the same as my body temperature. I watch the low clouds dissipate and count the different bird calls until the same birds repeat themselves and I forget which ones I've recognised. I stay there. Sitting in the water. I'm aching and uncomfortable. My hips and joints are throbbing in continuous pain.
I'm absorbed by the fatigue. The weight gain. The struggle to get to the end of the day and then until the end of the night. I'm consumed by the way this illness has taken away my life as I knew it.
I remind myself that it is temporary. My condition is temporary. The way I feel is temporary. By the end of the day I'll have many moments that will have been worthwhile.
I don't feel brave today. Or stoic. Or capable. But all those feelings will pass. I just need to hold on until they do.
Temporary. My doctor's certificate says that my condition is temporary. I sometimes loose sight of that.
The sky is not quite light yet. The water temp is the same as my body temperature. I watch the low clouds dissipate and count the different bird calls until the same birds repeat themselves and I forget which ones I've recognised. I stay there. Sitting in the water. I'm aching and uncomfortable. My hips and joints are throbbing in continuous pain.
I'm absorbed by the fatigue. The weight gain. The struggle to get to the end of the day and then until the end of the night. I'm consumed by the way this illness has taken away my life as I knew it.
I remind myself that it is temporary. My condition is temporary. The way I feel is temporary. By the end of the day I'll have many moments that will have been worthwhile.
I don't feel brave today. Or stoic. Or capable. But all those feelings will pass. I just need to hold on until they do.
* I haven't been feeling well. Not physically. Not emotionally. If you want, skip the first paragraph and get on with the swimming.
20th April 2021
The roof of my mouth and the back of my throat have sores. My femurs are burning. My stomach is painfully bloated. My head stings. My mind has convinced itself that anything would be better than this. Anything. The discomfort has taken away any fear of death. My only escape is sleep and it's interrupted. Waking is a disappointing realisation that I have to face it all over again. My body is being tortured. My mind tormented. All due to medicine that will prolong my life.
The side effects of the last round were delayed. They hit me unexpectedly. I wasn't standing steadily ready for their impact. I turned my back and they knocked me over. At some stage I have to brush myself off and get back up.
The water laps at my shins. I breathe in deeply and then the air rushes back out of my lungs. The water has run out of the river and into the ocean, so that's where we go. The sea water is pristine and glassy and it reflects the sun. I swim just behind the breaking waves so that I will get the occasional drop off the back of one of them, and dabble in the risk of getting tumbled by another. The current hinders our progress and crossing over the rips slows us further. But none of us are there to conquer a destination. We stop before we get in the way of the board riders and spend time body surfing in the waves. I linger out the back and then in my chest I feel my heart flutter in delight at the privilege of being exactly where I am. I lay back and let my feet go first over the next few unbroken waves. When I look back towards my friends I realise that the undertow isn't letting me head straight back to shore. I get to stay a little longer in the deep blue expanse until I'm released into the sandy white wash and my feet touch the ground.
I don't want to do the next lot of chemotherapy. I've got until the 29th to brush myself off and stand back up.
20th April 2021
The roof of my mouth and the back of my throat have sores. My femurs are burning. My stomach is painfully bloated. My head stings. My mind has convinced itself that anything would be better than this. Anything. The discomfort has taken away any fear of death. My only escape is sleep and it's interrupted. Waking is a disappointing realisation that I have to face it all over again. My body is being tortured. My mind tormented. All due to medicine that will prolong my life.
The side effects of the last round were delayed. They hit me unexpectedly. I wasn't standing steadily ready for their impact. I turned my back and they knocked me over. At some stage I have to brush myself off and get back up.
The water laps at my shins. I breathe in deeply and then the air rushes back out of my lungs. The water has run out of the river and into the ocean, so that's where we go. The sea water is pristine and glassy and it reflects the sun. I swim just behind the breaking waves so that I will get the occasional drop off the back of one of them, and dabble in the risk of getting tumbled by another. The current hinders our progress and crossing over the rips slows us further. But none of us are there to conquer a destination. We stop before we get in the way of the board riders and spend time body surfing in the waves. I linger out the back and then in my chest I feel my heart flutter in delight at the privilege of being exactly where I am. I lay back and let my feet go first over the next few unbroken waves. When I look back towards my friends I realise that the undertow isn't letting me head straight back to shore. I get to stay a little longer in the deep blue expanse until I'm released into the sandy white wash and my feet touch the ground.
I don't want to do the next lot of chemotherapy. I've got until the 29th to brush myself off and stand back up.
22nd April 2021
I can smell the zinc that I've put all over my face as we wander up the sand to the north end of the beach. The sky is a perfect blue dome with no clouds to cause concerning shadows. We've decided that it would be Brian who would get chomped by a shark anyway. It's unanimous. With that settled we turn towards the water without a care (except for Brian who holds onto the fact that the tightness of his wetsuit would slow the blood loss). The seagulls part and make way for us, one of them hopping on one leg. The beach looks more like a bay, flat and smooth. The water is warm and silky. As I swim I'm mesmerized by the patterns the sand has made on the ocean floor and lulled by the gentle movement of the water.
My body has returned to being comfortable and freestyle is soothing. A school of bream flick up flashes of silver as they weave back and forth in front of me. Ahead is the island. It gets bigger as I swim towards it confirming my progress. I feel capable again.
I take a bigger breath and dive down, but can't touch the bottom before my ears protest. The deep water only adds to my feelings of proficiency as I swim the length of the beach.
Today is a good day. Today is a great day. I enjoy every moment of it.
I can smell the zinc that I've put all over my face as we wander up the sand to the north end of the beach. The sky is a perfect blue dome with no clouds to cause concerning shadows. We've decided that it would be Brian who would get chomped by a shark anyway. It's unanimous. With that settled we turn towards the water without a care (except for Brian who holds onto the fact that the tightness of his wetsuit would slow the blood loss). The seagulls part and make way for us, one of them hopping on one leg. The beach looks more like a bay, flat and smooth. The water is warm and silky. As I swim I'm mesmerized by the patterns the sand has made on the ocean floor and lulled by the gentle movement of the water.
My body has returned to being comfortable and freestyle is soothing. A school of bream flick up flashes of silver as they weave back and forth in front of me. Ahead is the island. It gets bigger as I swim towards it confirming my progress. I feel capable again.
I take a bigger breath and dive down, but can't touch the bottom before my ears protest. The deep water only adds to my feelings of proficiency as I swim the length of the beach.
Today is a good day. Today is a great day. I enjoy every moment of it.
24th April 2021
He can hear it before I do. The anticipation builds until we catch a glimpse of it as it turns the corner. It gets bigger and bigger and louder and louder until it honks it's horn and we get a wave from the driver. The wind rushes past us, the wheels squeal on the tracks and the weight of the train makes a beat on the expansion joints. It's a huge machine that demands our attention. And then it has past us. It travels off into the distance and the quiet returns.
We've seen a tiny part of it's journey, just like breast cancer is going to be a tiny part of mine.
He can hear it before I do. The anticipation builds until we catch a glimpse of it as it turns the corner. It gets bigger and bigger and louder and louder until it honks it's horn and we get a wave from the driver. The wind rushes past us, the wheels squeal on the tracks and the weight of the train makes a beat on the expansion joints. It's a huge machine that demands our attention. And then it has past us. It travels off into the distance and the quiet returns.
We've seen a tiny part of it's journey, just like breast cancer is going to be a tiny part of mine.
27th April 2021
The warm clear sea water has poured into the river. It's deep and it's blue. The sunlight shines through the surface and makes beams all the way to the river floor. Today I choose to breathe every three strokes. Side to side. Back and forth. When I breathe to my right I see the row of houses that line the river, to my left are the trees on the spit. Underneath, the fish calmly drift with the seaweed as it starts to move towards the ocean with the tide. I manage to avoid the group of school kids in red canoes while they somehow steer towards and colide with Wayne. For a moment I'm glad that I am not their padding instructor trying to get them to avoid the public without success.
The water is almost deep enough to swim over the sandbank but not quite. I sand up and appreciate my surroundings. Before all of this I didn't know if I would be able to swim during treatment. I didn't know if I would be able to manage the one and a half kilometre stretch of freestyle in the river. Today it tires me physically but sustains me mentally. Instead of being discouraged by things that I can't do, I'm thankful for what I can.
The warm clear sea water has poured into the river. It's deep and it's blue. The sunlight shines through the surface and makes beams all the way to the river floor. Today I choose to breathe every three strokes. Side to side. Back and forth. When I breathe to my right I see the row of houses that line the river, to my left are the trees on the spit. Underneath, the fish calmly drift with the seaweed as it starts to move towards the ocean with the tide. I manage to avoid the group of school kids in red canoes while they somehow steer towards and colide with Wayne. For a moment I'm glad that I am not their padding instructor trying to get them to avoid the public without success.
The water is almost deep enough to swim over the sandbank but not quite. I sand up and appreciate my surroundings. Before all of this I didn't know if I would be able to swim during treatment. I didn't know if I would be able to manage the one and a half kilometre stretch of freestyle in the river. Today it tires me physically but sustains me mentally. Instead of being discouraged by things that I can't do, I'm thankful for what I can.
28th April 2021
I wake up after falling asleep on the lounge again. My face is round and puffy. I have dark circles under my eyes. My bandana is off to the side and exposes my smooth head where my hair should be. My reflection looks like a cancer victim. I make my way to bed. I'm not apprehensive about my next round of treatment anymore. I just want to get it done. I want it to be over.
I wake up after falling asleep on the lounge again. My face is round and puffy. I have dark circles under my eyes. My bandana is off to the side and exposes my smooth head where my hair should be. My reflection looks like a cancer victim. I make my way to bed. I'm not apprehensive about my next round of treatment anymore. I just want to get it done. I want it to be over.
29th April 2021
I sit down in the chair. I hate this place. I hate the smell of it, I hate the look of it. I lower my head and look down at my legs. Why my head is so bald but my legs are so hairy seems so unreasonable.
I try to think back to this morning's swim to pass the time while my pre meds flush through the IV drip. It was beautiful again. The stingrays had settled themselves down in the sand with only their eyes and their tails showing. A big fat flat head had done the same and camouflaged itself on the bottom of the river. I remember swimming through a school of tiny silver fish and watching a plump toad fish wobble about.
The nurse comes over and starts the taxol. People keep asking her to come and do other things but she keeps replying "sorry, no, I have a 'week one taxol'. I have to stay here". A few minutes later I turn to her and tell her that I'm getting hot. She doesn't hear. I turn to dad "Dad is my face really red? I'm getting hot". He gets the nurses attention, she calls out and then the whole ward springs into action. My drip is stopped and I now have five nurses lined up with full syringes and a doctor making the calls on what goes into my canula and what doesn't. "No, I'm not having trouble breathing". "Yes, my chest feels like it's tightening". "Yes, my face feels like it's burning. I'm really hot". They put the antihistamine in quickly. The pain of it shoots up my arm. They discuss protocol and what stage of reaction that I am having and decide what to put in next. The doctor decides that more is better than less. It goes in. I start cooling down. I'm okay. They watch me for a while, talk about what just happened amongst themselves and then slowly they disperse and return to their patients. I feel like it might've been the highlight of their day.
The antihistamine takes effect. I become drowsy and close my eyes. I'm barely aware of what happens for the next two hours as they slowly administer the rest of my dose of chemotherapy. They tripple check that I won't be driving. Dad waits patiently and takes me home. He's happily been with me since this morning when he sat on the side of the river while I swam. He enjoyed my post swim happiness possibly more than I did. No wonder I don't hesitate to chase trains with Callum.
Delicious home made pizza is delivered by a friend for dinner. I emerge from my bed to eat it and then return back to my room and rest.
One dose over. Eleven to go.
I sit down in the chair. I hate this place. I hate the smell of it, I hate the look of it. I lower my head and look down at my legs. Why my head is so bald but my legs are so hairy seems so unreasonable.
I try to think back to this morning's swim to pass the time while my pre meds flush through the IV drip. It was beautiful again. The stingrays had settled themselves down in the sand with only their eyes and their tails showing. A big fat flat head had done the same and camouflaged itself on the bottom of the river. I remember swimming through a school of tiny silver fish and watching a plump toad fish wobble about.
The nurse comes over and starts the taxol. People keep asking her to come and do other things but she keeps replying "sorry, no, I have a 'week one taxol'. I have to stay here". A few minutes later I turn to her and tell her that I'm getting hot. She doesn't hear. I turn to dad "Dad is my face really red? I'm getting hot". He gets the nurses attention, she calls out and then the whole ward springs into action. My drip is stopped and I now have five nurses lined up with full syringes and a doctor making the calls on what goes into my canula and what doesn't. "No, I'm not having trouble breathing". "Yes, my chest feels like it's tightening". "Yes, my face feels like it's burning. I'm really hot". They put the antihistamine in quickly. The pain of it shoots up my arm. They discuss protocol and what stage of reaction that I am having and decide what to put in next. The doctor decides that more is better than less. It goes in. I start cooling down. I'm okay. They watch me for a while, talk about what just happened amongst themselves and then slowly they disperse and return to their patients. I feel like it might've been the highlight of their day.
The antihistamine takes effect. I become drowsy and close my eyes. I'm barely aware of what happens for the next two hours as they slowly administer the rest of my dose of chemotherapy. They tripple check that I won't be driving. Dad waits patiently and takes me home. He's happily been with me since this morning when he sat on the side of the river while I swam. He enjoyed my post swim happiness possibly more than I did. No wonder I don't hesitate to chase trains with Callum.
Delicious home made pizza is delivered by a friend for dinner. I emerge from my bed to eat it and then return back to my room and rest.
One dose over. Eleven to go.
30th April 2021
4th May 2021
I keep wondering if I have had more paracetamol in 2021 than I have had during the rest of my life. I think it's possible. In another three months it will be probable.
It's overcast and looks like rain is on it's way. I'm sure that swimming in the rain is one of life's most special things.
My new birthday goggles make everything clearer. The bubbles tumble around me as I duck under a breaking wave and I watch the grains of sand get swept around on the ocean floor. Peter and I swim far out into the ocean. I like to think that he's on the shark side because I'm closest to the shore.
I can feel pain in my arm left over from the reaction to the chemo. Compared to the past few months, it's a minor discomfort. I soon forget about it and enjoy the water and my ability to pull myself through it. I'm comfortable again. I've just run the length of the beach. It was difficult. My cozzies began to chaff under my arms and I had to will myself to keep running until I touched the rocks. But now, in the water I'm relaxed and content as one arm goes in after the other. I see a little stingray dart along the bottom. I'm in awe of the water depth and the expanse of the ocean, and then it starts to rain. Today a swim is far more effective than paracetamol.
I keep wondering if I have had more paracetamol in 2021 than I have had during the rest of my life. I think it's possible. In another three months it will be probable.
It's overcast and looks like rain is on it's way. I'm sure that swimming in the rain is one of life's most special things.
My new birthday goggles make everything clearer. The bubbles tumble around me as I duck under a breaking wave and I watch the grains of sand get swept around on the ocean floor. Peter and I swim far out into the ocean. I like to think that he's on the shark side because I'm closest to the shore.
I can feel pain in my arm left over from the reaction to the chemo. Compared to the past few months, it's a minor discomfort. I soon forget about it and enjoy the water and my ability to pull myself through it. I'm comfortable again. I've just run the length of the beach. It was difficult. My cozzies began to chaff under my arms and I had to will myself to keep running until I touched the rocks. But now, in the water I'm relaxed and content as one arm goes in after the other. I see a little stingray dart along the bottom. I'm in awe of the water depth and the expanse of the ocean, and then it starts to rain. Today a swim is far more effective than paracetamol.
5th May 2021
Erin peels my beanie off my head. "I miss plaiting your hair mum" she says. "I miss you plaiting my hair too" I reply. She pats me on the head, kisses me on the cheek and goes off to bed.
There isn't much that I miss about my hair. I once got ponytail envy when I was on a train. I find shampoo comercials annoying, but mostly no hair is very convenient. It has advantages. And then there are times when I look at my reflection and I don't like what is in front of me. My face is puffy and there are dark circles under my eyes and I am bald.
Yesterday I was asked what I used to see when someone with cancer walked past me. I saw them with compassion. I saw their strength and their bravery. I saw something that I never wanted to go through. Not once did I see something ugly.
No one is concerned by what I look like. Only me.
I sit and write while Liam gets his hair cut. The hair dresser turns and says she likes my head scarf. I'm instantly buoyed by her compliment. She's genuine. I smile. She's raised my spirit that I keep tearing down.
Erin peels my beanie off my head. "I miss plaiting your hair mum" she says. "I miss you plaiting my hair too" I reply. She pats me on the head, kisses me on the cheek and goes off to bed.
There isn't much that I miss about my hair. I once got ponytail envy when I was on a train. I find shampoo comercials annoying, but mostly no hair is very convenient. It has advantages. And then there are times when I look at my reflection and I don't like what is in front of me. My face is puffy and there are dark circles under my eyes and I am bald.
Yesterday I was asked what I used to see when someone with cancer walked past me. I saw them with compassion. I saw their strength and their bravery. I saw something that I never wanted to go through. Not once did I see something ugly.
No one is concerned by what I look like. Only me.
I sit and write while Liam gets his hair cut. The hair dresser turns and says she likes my head scarf. I'm instantly buoyed by her compliment. She's genuine. I smile. She's raised my spirit that I keep tearing down.
6th May 2021
I'm over the navel gazing insecure thoughts about my appearance. I'm ready for a swim. The cloud cover makes it almost dark and it's pouring with rain. There are only three of us. It's windy and the surf is pounding with waves that are coming in in all directions. The sand is rain beaten and I can feel the texture of it under my feet as we run to the other end of the beach with water running down our faces.
The surface of the river is rougher than I've ever seen it. We start swimming into two foot waves and a head wind. I love it. I can't help but laugh as I'm thrown around. The water is so churned up that I can't see a thing, and it tastes barely salty at all. My arms are rotating but I wonder if I'm actually progressing forwards, I feel like I'm just going up and down. There is no one else on the river today. No paddle boarders, no kayakers, no groups of school kids canoeing, just us.
The rain gets heavier, I can feel it on my arms. I pop my head up and check that Peter and Brian are still bobbing along in the water. A wave slaps me straight in the face. I laugh again as I try to get into some kind of rhythm without taking in water. It's not possible today. I just have to grab a breath when I can. We make it back to the sand bank and I declare it the best swim of the year so far.
I'm a little bit famous in the ward for my reaction to the chemo last week. Everyone knows about it. Everyone has a look at my arm. There's a lot of discussion about using my right arm this time which apparently is not ideal because it's the cancer side where a node has been removed and also my dominate hand. But the left is still too sore and swollen. Right arm it is. The treatment is uneventful. I feel fine.
Ten more to go.
I'm over the navel gazing insecure thoughts about my appearance. I'm ready for a swim. The cloud cover makes it almost dark and it's pouring with rain. There are only three of us. It's windy and the surf is pounding with waves that are coming in in all directions. The sand is rain beaten and I can feel the texture of it under my feet as we run to the other end of the beach with water running down our faces.
The surface of the river is rougher than I've ever seen it. We start swimming into two foot waves and a head wind. I love it. I can't help but laugh as I'm thrown around. The water is so churned up that I can't see a thing, and it tastes barely salty at all. My arms are rotating but I wonder if I'm actually progressing forwards, I feel like I'm just going up and down. There is no one else on the river today. No paddle boarders, no kayakers, no groups of school kids canoeing, just us.
The rain gets heavier, I can feel it on my arms. I pop my head up and check that Peter and Brian are still bobbing along in the water. A wave slaps me straight in the face. I laugh again as I try to get into some kind of rhythm without taking in water. It's not possible today. I just have to grab a breath when I can. We make it back to the sand bank and I declare it the best swim of the year so far.
I'm a little bit famous in the ward for my reaction to the chemo last week. Everyone knows about it. Everyone has a look at my arm. There's a lot of discussion about using my right arm this time which apparently is not ideal because it's the cancer side where a node has been removed and also my dominate hand. But the left is still too sore and swollen. Right arm it is. The treatment is uneventful. I feel fine.
Ten more to go.
10th May 2021
I feel heavy and the water feels thick. There is no tidal assist and no salt to keep me bouyant. No fish to look at, just the blue line at the bottom of the pool. I've put myself in the slow lane but where the ocean offers me relaxation, the pool brings out my competitiveness. I draw up beside the man in the next lane over. He holds my pace for awhile but a tumble turn and good streamline leaves him in on the wall. He didn't know we were competing and will think nothing of it, but I am pleased.
My breastcare nurse has said that it's okay for me to swim in a public pool so here I am. The first two hundred hurts more than I expected but I am determined to keep my first kilometre under 20 minutes. I don't want to let the time on my watch be the winner. I don't let it beat me.
I thought breast cancer and the treatment would be like this. Uncomfortable, but nothing that I couldn't handle. I thought it would be something that I could just compete with. Something that I could overcome with a bit of effort.
Winning this thing is harder than I ever thought. I'm ahead at the moment but the race isn't finished. I don't even know how many laps it goes for.
I feel heavy and the water feels thick. There is no tidal assist and no salt to keep me bouyant. No fish to look at, just the blue line at the bottom of the pool. I've put myself in the slow lane but where the ocean offers me relaxation, the pool brings out my competitiveness. I draw up beside the man in the next lane over. He holds my pace for awhile but a tumble turn and good streamline leaves him in on the wall. He didn't know we were competing and will think nothing of it, but I am pleased.
My breastcare nurse has said that it's okay for me to swim in a public pool so here I am. The first two hundred hurts more than I expected but I am determined to keep my first kilometre under 20 minutes. I don't want to let the time on my watch be the winner. I don't let it beat me.
I thought breast cancer and the treatment would be like this. Uncomfortable, but nothing that I couldn't handle. I thought it would be something that I could just compete with. Something that I could overcome with a bit of effort.
Winning this thing is harder than I ever thought. I'm ahead at the moment but the race isn't finished. I don't even know how many laps it goes for.
13th May 2021
My hands start to shake a little. I've called the breastcare nurse and told her that my breast is sore and that I have found another lump. I said "surely you don't get more malignant lumps during treatment", she says "yes, actually it does happen". I leave my phone in the car and hide my keys but forget to lock the car door anyway. I dive under the water and startle a fish. I swim hard, I'm angry. I take it out in the water.
The lady calls me in from the waiting room for a mammogram. She's kind and suggests that what I can feel might be scar tissue. The sonographer can't see a lump during the ultrasound. The doctor comes in and explains how nerve endings after surgery can cause pain, and how scar tissue can feel uneven. I breathe out. I don't have to start from the begining. I'll sleep better tonight.
My hands start to shake a little. I've called the breastcare nurse and told her that my breast is sore and that I have found another lump. I said "surely you don't get more malignant lumps during treatment", she says "yes, actually it does happen". I leave my phone in the car and hide my keys but forget to lock the car door anyway. I dive under the water and startle a fish. I swim hard, I'm angry. I take it out in the water.
The lady calls me in from the waiting room for a mammogram. She's kind and suggests that what I can feel might be scar tissue. The sonographer can't see a lump during the ultrasound. The doctor comes in and explains how nerve endings after surgery can cause pain, and how scar tissue can feel uneven. I breathe out. I don't have to start from the begining. I'll sleep better tonight.
14th May 2021
I walk into the ward and step on the scales. Another kilogram clicks over. I feel like it's a freight train that I have no control over.\\n
The nurse blows a vein and keeps apologising about it. I know full well that I've made it very difficult for her by not being hydrated. She tries further up my arm and gets the needle in. The saline is flushed through and then the taxol is hung and connected. The poisonous medicine flows down the tube and into my blood stream. My nails have lines across them but I have no numbness in my fingers or toes. The treatment is going well.\\n
I hear another patient say goodbye to the nurses after his last treatment and wonder how I will feel when I'm walking out for the last time. My eyes return to the clock on the wall. I watch the second hand go around and the mintues tick by.\\n
On the way to the bathroom I meet the "other Kirrilee", but she's Kirrily. We talk about our treatment and she says she had to miss one last week because it was damaging her liver. "I know", I say, "I've been worried about your liver all week after they accidentally called me and said I'd have to miss a treatment because of the impact on my liver". She has the same name, she has no hair like me, her face is round like mine. She looks brave and strong and ready for what is still ahead.\\n
My treatment is finished for the day. I tell Jon that if I've eaten sensibly all week and still added a kilo, I might as well have calamari for lunch.
I walk into the ward and step on the scales. Another kilogram clicks over. I feel like it's a freight train that I have no control over.\\n
The nurse blows a vein and keeps apologising about it. I know full well that I've made it very difficult for her by not being hydrated. She tries further up my arm and gets the needle in. The saline is flushed through and then the taxol is hung and connected. The poisonous medicine flows down the tube and into my blood stream. My nails have lines across them but I have no numbness in my fingers or toes. The treatment is going well.\\n
I hear another patient say goodbye to the nurses after his last treatment and wonder how I will feel when I'm walking out for the last time. My eyes return to the clock on the wall. I watch the second hand go around and the mintues tick by.\\n
On the way to the bathroom I meet the "other Kirrilee", but she's Kirrily. We talk about our treatment and she says she had to miss one last week because it was damaging her liver. "I know", I say, "I've been worried about your liver all week after they accidentally called me and said I'd have to miss a treatment because of the impact on my liver". She has the same name, she has no hair like me, her face is round like mine. She looks brave and strong and ready for what is still ahead.\\n
My treatment is finished for the day. I tell Jon that if I've eaten sensibly all week and still added a kilo, I might as well have calamari for lunch.
15th May 2021
"Snot mum!". My nose has been running with, lets call it "saline" since starting chemo. I'll be carrying on with daily life without realising that there is a droplet of it at the end of my nose. The kids were horrified at first, now they just yell out "snot mum", mid conversation, in the hope that I'll deal with it immediately.
This morning the conditions are not helping my situation. It's six degrees on the side of the hockey field and possibly sleeting. An hour later at soccer, it's no warmer. But I look and feel the same as everyone else. We're all cold. We're all wearing beanies and layers and layers of clothes. And I'm not the only one reaching for a tissue.
For a few hours everything else is forgotten. I'm just another mum on the side of the sporting field with freezing toes.
"Snot mum!". My nose has been running with, lets call it "saline" since starting chemo. I'll be carrying on with daily life without realising that there is a droplet of it at the end of my nose. The kids were horrified at first, now they just yell out "snot mum", mid conversation, in the hope that I'll deal with it immediately.
This morning the conditions are not helping my situation. It's six degrees on the side of the hockey field and possibly sleeting. An hour later at soccer, it's no warmer. But I look and feel the same as everyone else. We're all cold. We're all wearing beanies and layers and layers of clothes. And I'm not the only one reaching for a tissue.
For a few hours everything else is forgotten. I'm just another mum on the side of the sporting field with freezing toes.
18th May 2021
I'm woken again by another headache. It's one of the side effects that I'm questioned about before each treatment. They're always in the middle of the night and are happening a few times a week. I toddle into the kitchen for panadol and hop back into bed hoping that sleep will come quickly and stop the squeezing pain in my skull. I've never suffered from frequent headaches before. These ones are intense.
The next thing that wakes me is Erin's footsteps. She's been counting down the days for months, and now she has to count down the minutes before she's allowed to wake up Liam, get Callum off Youtube, and open her presents. After all of the wrapping paper and gifts are spread across our bed she whispers in my ear "Mum, the thing I wanted most for my birthday is for you not to be sick. And I also wanted the bike and earings and the art supplies". "I'm not sick today Erin" I reply as I kiss her on the cheek.
As I drive down the mountain, the pain still runs from my head and down the back of my neck. We all edge slowly into the water with various remarks. It might not be winter on the calendar but the water temp is making it our first winter swim. I'm the last one to put my head under and start stroking up the river. I hit a warm pocket of water that has been heated by the sun on the sandbank and then slid off to lay on top of the cooler water. Just as quickly, I swim through an icy patch that has flowed down from a Robertson creek. This continues to happen. It gets so cold to the point that I think I can't manage and then a warm bit makes it all okay. It's just like my cancer treatment. It gets close to being too much to handle and then a good day makes it all bearable again.
I'm woken again by another headache. It's one of the side effects that I'm questioned about before each treatment. They're always in the middle of the night and are happening a few times a week. I toddle into the kitchen for panadol and hop back into bed hoping that sleep will come quickly and stop the squeezing pain in my skull. I've never suffered from frequent headaches before. These ones are intense.
The next thing that wakes me is Erin's footsteps. She's been counting down the days for months, and now she has to count down the minutes before she's allowed to wake up Liam, get Callum off Youtube, and open her presents. After all of the wrapping paper and gifts are spread across our bed she whispers in my ear "Mum, the thing I wanted most for my birthday is for you not to be sick. And I also wanted the bike and earings and the art supplies". "I'm not sick today Erin" I reply as I kiss her on the cheek.
As I drive down the mountain, the pain still runs from my head and down the back of my neck. We all edge slowly into the water with various remarks. It might not be winter on the calendar but the water temp is making it our first winter swim. I'm the last one to put my head under and start stroking up the river. I hit a warm pocket of water that has been heated by the sun on the sandbank and then slid off to lay on top of the cooler water. Just as quickly, I swim through an icy patch that has flowed down from a Robertson creek. This continues to happen. It gets so cold to the point that I think I can't manage and then a warm bit makes it all okay. It's just like my cancer treatment. It gets close to being too much to handle and then a good day makes it all bearable again.
20th May 2021
Today is the day. It's time to face it. I've never had any desire to swim through winter without a wetsuit, I'm just not sure that I can deal with it if I can't get myself into it.
I step in and pull it up over my legs with no problems. Getting it up to my waist takes wriggling and a bit of force. I pull it up over my arms and then Wayne and Peter manage to work together to get the zip up.
I'm in. And I can breathe. Just.
The river is cold. Really cold. I'm relieved that I've managed to squeeze into my wetsuit and that it hasn't been disguarded and left in the car. The ocean temp is warmer. It's the first outing for our brand new merchandise, bright yellow Silver Fins swimming caps. The six of us spread out as we swim back towards the island. We head into the rip which churns up the sand in the water as we swim across it until we're released on the other side back into the clear blue ocean. A school of big fish suddenly come towards me which makes me wonder what else is out here. I turn and swim a little closer to the shore. The sun is out. The birds glide overhead. It's a beautiful day in my favourite place, the thought that I have to be in my least favourite place in an hours time seems inconceivable. I push the thought aside and enjoy the time that I have left in the water.
The nurse who hasn't been able to canulate me so far, is today, teaching another nurse how to do it. They each blow a vein before they call for a senior nurse who gets the needle into my vein in my other arm. The sandwich trolley is wheeled around, I read my book, and then my drip beeps to signal the nurse that I'm finished for another week. I'm able to leave in time to do the hockey training and swimming lesson run. My life is a strange kind of normal.
Today is the day. It's time to face it. I've never had any desire to swim through winter without a wetsuit, I'm just not sure that I can deal with it if I can't get myself into it.
I step in and pull it up over my legs with no problems. Getting it up to my waist takes wriggling and a bit of force. I pull it up over my arms and then Wayne and Peter manage to work together to get the zip up.
I'm in. And I can breathe. Just.
The river is cold. Really cold. I'm relieved that I've managed to squeeze into my wetsuit and that it hasn't been disguarded and left in the car. The ocean temp is warmer. It's the first outing for our brand new merchandise, bright yellow Silver Fins swimming caps. The six of us spread out as we swim back towards the island. We head into the rip which churns up the sand in the water as we swim across it until we're released on the other side back into the clear blue ocean. A school of big fish suddenly come towards me which makes me wonder what else is out here. I turn and swim a little closer to the shore. The sun is out. The birds glide overhead. It's a beautiful day in my favourite place, the thought that I have to be in my least favourite place in an hours time seems inconceivable. I push the thought aside and enjoy the time that I have left in the water.
The nurse who hasn't been able to canulate me so far, is today, teaching another nurse how to do it. They each blow a vein before they call for a senior nurse who gets the needle into my vein in my other arm. The sandwich trolley is wheeled around, I read my book, and then my drip beeps to signal the nurse that I'm finished for another week. I'm able to leave in time to do the hockey training and swimming lesson run. My life is a strange kind of normal.
23rd May 2021
It's morning. Day times are becoming easier. I sink myself to the bottom of the spa and let my body float back up again. Night times are full of aches and worries that get out of hand. Each hole that has been pierced in my skin by a needle gets irritated and itchy. My body is tired but keeps fighting to heal. My mind is exhausted.
I lie back and float. I rub my hands over the peach fuzz that is my hair growning back and I breathe. The weightlessness in the soothing water is something that I continue to be thankful for. The quiet of the early morning is slowly replaced by the noise of the day. I take one last deep breath and I'm ready for it.
But maybe not as ready for some innocent honesty. "Mum. You need to go to the shops and buy bigger swimmers. You're being inappropriate". I pause and wonder if I can use this moment in future discussions regarding her own teenage clothing and the amount of material needed to look appropriate. I naively hope that I never will.
It's morning. Day times are becoming easier. I sink myself to the bottom of the spa and let my body float back up again. Night times are full of aches and worries that get out of hand. Each hole that has been pierced in my skin by a needle gets irritated and itchy. My body is tired but keeps fighting to heal. My mind is exhausted.
I lie back and float. I rub my hands over the peach fuzz that is my hair growning back and I breathe. The weightlessness in the soothing water is something that I continue to be thankful for. The quiet of the early morning is slowly replaced by the noise of the day. I take one last deep breath and I'm ready for it.
But maybe not as ready for some innocent honesty. "Mum. You need to go to the shops and buy bigger swimmers. You're being inappropriate". I pause and wonder if I can use this moment in future discussions regarding her own teenage clothing and the amount of material needed to look appropriate. I naively hope that I never will.
25th May 2021
Another headache wakes me. I bend over to get out of bed and I feel a drip on my toes. My nose is bleeding. The oncologist has organised a CT scan for next week. She's very matter of fact with her information. "You shouldn't be getting headaches on taxol. We'll do a CT scan to check for cancer spots on the brain". "Ok" I reply. She looks up from her computer screen perhaps realising her directness and says "you'll have a CT scan to rule that out, one of the nurses will contact you when we get the results to let you know that everything is okay, it's more than likely that your aching bones and muscles are causing pain in your neck and giving you headaches". "Cool" I say, my tone of voice possibly not containing any enthusiam at the thought of another test. But grateful that she took the time to switch her sentence around.
Back in the river there are no tests, no scans, no headaches. Today I've put my wetsuit on before realising that the river is full of warm ocean water. It's twenty degrees in there and the sun is shining. The water is clearer than last week and the sky bluer with little whispy clouds drifting across it making mesmerizing patterns. The pull of the tide is strong which makes it a quick swim. I strip off my wetsuit in the water as usual. It's too hard to wrestle with in the car park. The difference of how I felt before getting in the water to how I feel getting out after a swim couldn't be more opposing. Again I have forgotten that there is anything wrong at all until I go to take off my cap and towel dry the little soft bits of hair that I have sticking straight up out of my scalp. Yesterday I couldn't have managed a swim. Today I couldn't have managed without one.
Another headache wakes me. I bend over to get out of bed and I feel a drip on my toes. My nose is bleeding. The oncologist has organised a CT scan for next week. She's very matter of fact with her information. "You shouldn't be getting headaches on taxol. We'll do a CT scan to check for cancer spots on the brain". "Ok" I reply. She looks up from her computer screen perhaps realising her directness and says "you'll have a CT scan to rule that out, one of the nurses will contact you when we get the results to let you know that everything is okay, it's more than likely that your aching bones and muscles are causing pain in your neck and giving you headaches". "Cool" I say, my tone of voice possibly not containing any enthusiam at the thought of another test. But grateful that she took the time to switch her sentence around.
Back in the river there are no tests, no scans, no headaches. Today I've put my wetsuit on before realising that the river is full of warm ocean water. It's twenty degrees in there and the sun is shining. The water is clearer than last week and the sky bluer with little whispy clouds drifting across it making mesmerizing patterns. The pull of the tide is strong which makes it a quick swim. I strip off my wetsuit in the water as usual. It's too hard to wrestle with in the car park. The difference of how I felt before getting in the water to how I feel getting out after a swim couldn't be more opposing. Again I have forgotten that there is anything wrong at all until I go to take off my cap and towel dry the little soft bits of hair that I have sticking straight up out of my scalp. Yesterday I couldn't have managed a swim. Today I couldn't have managed without one.
27th May 2021
Everything is hurting.
Everything.
If it wasn't a swimming day I reckon that I would stay in bed. My liver is starting to struggle with the toxins. My white blood cells aren't recovering. My breastcare nurse rang and said "I've just seen your blood results. I bet you feel like $*#%". She's right. I do. I don't know why I'm motivated to get the kids ready for school early and head to the ocean when I don't feel like I could even walk around the block. But I'm determined to get a swim in before chemo.
The tide is high and it hasn't yet turned. We think we've got time for a two way swim before the river starts gushing out into the pacific again. It takes me a kilometre to get comfortable. I keep swallowing water and I haven't adjusted to the water temperature yet. I no longer have hair in my nose. My nostrils sting in the salt water and have no protection against the cold. And then I gradually settle into my stroke and know exactly why it's so vital for me to be able to swim. The constant predictable rhythm relaxes everything. The pain goes away.
It seems very clear to me today that when I was a kid, Mum didn't get up and take me to swimming training at 5:30am for me to be an olympian. Neither of us had that in mind. We also didn't realise that at the age of 42, in the middle of cancer treatment, that all of those kilometres for her on the road and hours of time on the side of the pool deck, would give me such relief now. My body knows what to do in the water. My mind is peaceful here.
The seaweed is starting to drag in the opposite direction. Wayne signals with a circle of his finger to turn around and we head back. When I turn to breathe I can see the hundreds of seagulls sunning themselves on the emerging sandbank. The water holds me gently and we glide together back to the boat ramp. Peter says "I don't want to get out". I don't either. I don't want to sit in the cancer ward for three hours or return to the lethargy or to the headaches.
I'm not the new kid in the cancer centre anymore. The routine is familiar to me now. There are people all around me who haven't lost their hair yet. Some are bubbly oblivious to what is ahead. Some look off colour and hold their vomit bags close. I sit in the seat close to the window while the nurses try to canulate me. Three tries again before the needle is in and I'm ready for today's dose. I slip my shoes off and curl my legs up underneath me and a little bit of sand falls off my sock and onto the chair. It makes me smile.
Everything is hurting.
Everything.
If it wasn't a swimming day I reckon that I would stay in bed. My liver is starting to struggle with the toxins. My white blood cells aren't recovering. My breastcare nurse rang and said "I've just seen your blood results. I bet you feel like $*#%". She's right. I do. I don't know why I'm motivated to get the kids ready for school early and head to the ocean when I don't feel like I could even walk around the block. But I'm determined to get a swim in before chemo.
The tide is high and it hasn't yet turned. We think we've got time for a two way swim before the river starts gushing out into the pacific again. It takes me a kilometre to get comfortable. I keep swallowing water and I haven't adjusted to the water temperature yet. I no longer have hair in my nose. My nostrils sting in the salt water and have no protection against the cold. And then I gradually settle into my stroke and know exactly why it's so vital for me to be able to swim. The constant predictable rhythm relaxes everything. The pain goes away.
It seems very clear to me today that when I was a kid, Mum didn't get up and take me to swimming training at 5:30am for me to be an olympian. Neither of us had that in mind. We also didn't realise that at the age of 42, in the middle of cancer treatment, that all of those kilometres for her on the road and hours of time on the side of the pool deck, would give me such relief now. My body knows what to do in the water. My mind is peaceful here.
The seaweed is starting to drag in the opposite direction. Wayne signals with a circle of his finger to turn around and we head back. When I turn to breathe I can see the hundreds of seagulls sunning themselves on the emerging sandbank. The water holds me gently and we glide together back to the boat ramp. Peter says "I don't want to get out". I don't either. I don't want to sit in the cancer ward for three hours or return to the lethargy or to the headaches.
I'm not the new kid in the cancer centre anymore. The routine is familiar to me now. There are people all around me who haven't lost their hair yet. Some are bubbly oblivious to what is ahead. Some look off colour and hold their vomit bags close. I sit in the seat close to the window while the nurses try to canulate me. Three tries again before the needle is in and I'm ready for today's dose. I slip my shoes off and curl my legs up underneath me and a little bit of sand falls off my sock and onto the chair. It makes me smile.
31st May 2021
"Kirrilee Brachett".
Close enough.
I stand up and follow him into the treatment room. I'm not nervous about the scan or concerned about the result. I don't feel anything. It's like I've been switched off and all that's left is numbness. I'm canulated and moved into the next room for the brain scan. The contrast dye is injected and I feel the warmth of it travelling through my body.
The machine sounds like a plane taking off. I'm slid into the tunnel which starts to rotate and take the pictures. I close my eyes. I'm tired. It only takes minutes and then I'm returned to the room to get my canula removed. Another test is finished.
Jon is concerned. Not about the scan, but because I've come back up the mountain with dry swimmers. He offers to cook dinner but I'm determined to prove to myself that I can do it. My hips ache and I find it hard to walk around the kitchen. Liam is desperate to show me his speech that he has written at school. I'm immediately reminded by our twelve year old that we're stronger together and that I don't need to prove myself at all.
"Kirrilee Brachett".
Close enough.
I stand up and follow him into the treatment room. I'm not nervous about the scan or concerned about the result. I don't feel anything. It's like I've been switched off and all that's left is numbness. I'm canulated and moved into the next room for the brain scan. The contrast dye is injected and I feel the warmth of it travelling through my body.
The machine sounds like a plane taking off. I'm slid into the tunnel which starts to rotate and take the pictures. I close my eyes. I'm tired. It only takes minutes and then I'm returned to the room to get my canula removed. Another test is finished.
Jon is concerned. Not about the scan, but because I've come back up the mountain with dry swimmers. He offers to cook dinner but I'm determined to prove to myself that I can do it. My hips ache and I find it hard to walk around the kitchen. Liam is desperate to show me his speech that he has written at school. I'm immediately reminded by our twelve year old that we're stronger together and that I don't need to prove myself at all.
1st June 2021
I've been wandering around the house in the dark for the past two nights. My sleep is interrupted by aches and pains and the occasional sound of Eurovision being rewatched. I tread the path to the medicine cupboard. I'm not convinced that the paracetamol is doing anything at all but I take it anyway.
The sky starts to lighten as I drift off to sleep and then I am quickly woken by my alarm.
I push aside the doubts about my swimming ability today. I Ignore my heavy eyelids and sore bones. It's the first day of winter and the ocean draws me to it.
It's 15.6° in the water which drops down to 14.9° further up the river. The nurses have told me to try ice packs for my headaches, so I'm pretty much doing exactly as I'm asked. It's hard to keep my face in for longer than six strokes, so I flip over to backstroke for ten and then back to my front again until I get used to the temperature. Finally, I'm stroking along comfortably, glad that I'm here. It's always worth it. Every time. The water is clear. The fish and the stingrays seem less active today. There's no darting about above the patterns in the sand. Just calm and soothing swimming for all of us.
I get back to the car and have a text from the breast care nurse which briefly says 'Scan results fine'.
I've been wandering around the house in the dark for the past two nights. My sleep is interrupted by aches and pains and the occasional sound of Eurovision being rewatched. I tread the path to the medicine cupboard. I'm not convinced that the paracetamol is doing anything at all but I take it anyway.
The sky starts to lighten as I drift off to sleep and then I am quickly woken by my alarm.
I push aside the doubts about my swimming ability today. I Ignore my heavy eyelids and sore bones. It's the first day of winter and the ocean draws me to it.
It's 15.6° in the water which drops down to 14.9° further up the river. The nurses have told me to try ice packs for my headaches, so I'm pretty much doing exactly as I'm asked. It's hard to keep my face in for longer than six strokes, so I flip over to backstroke for ten and then back to my front again until I get used to the temperature. Finally, I'm stroking along comfortably, glad that I'm here. It's always worth it. Every time. The water is clear. The fish and the stingrays seem less active today. There's no darting about above the patterns in the sand. Just calm and soothing swimming for all of us.
I get back to the car and have a text from the breast care nurse which briefly says 'Scan results fine'.
3rd June 2021
The principal opens the car door to welcome the kids to school for the morning. Last week I was in my pyjamas. This week Erin is sifting through the towels, swimwear and an assortment of garbage to find her shin pads and mouth guard for hockey training this afternoon. Mr P patiently waits until we find the second shin pad and I wish them a happy day. The car doors are closed and I can feel the before school agitation drain from my body.
As much as I hurt I'm not missing a swim. My guess is that I'm a little bit addicted to the endorphins that it provides.
The clouds are getting thicker as we walk up the beach. We've decided on an ocean swim rather than brave the cooler river water. I keep my hands under my armpits to try and warm them up until I dive under an incoming wave and start to swim. My arms are heavy. They're widely skimming the water in effort. I feel the rip suck me into it and have to increase my kick until I'm across it. I stop to clear my goggles and can't help but stop and watch the stormy cold front move across the sky. It's unusually dark, but we continue our swim and then play in the waves under the phenomenal sky.
It starts to rain. It's an achievement to keep my clothes dry as I wriggle into them. I head up the highway for another dose of chemotherapy and challenge the nurse to get my canula in on the first go. I can see that she's determined to do it. And she does.
The principal opens the car door to welcome the kids to school for the morning. Last week I was in my pyjamas. This week Erin is sifting through the towels, swimwear and an assortment of garbage to find her shin pads and mouth guard for hockey training this afternoon. Mr P patiently waits until we find the second shin pad and I wish them a happy day. The car doors are closed and I can feel the before school agitation drain from my body.
As much as I hurt I'm not missing a swim. My guess is that I'm a little bit addicted to the endorphins that it provides.
The clouds are getting thicker as we walk up the beach. We've decided on an ocean swim rather than brave the cooler river water. I keep my hands under my armpits to try and warm them up until I dive under an incoming wave and start to swim. My arms are heavy. They're widely skimming the water in effort. I feel the rip suck me into it and have to increase my kick until I'm across it. I stop to clear my goggles and can't help but stop and watch the stormy cold front move across the sky. It's unusually dark, but we continue our swim and then play in the waves under the phenomenal sky.
It starts to rain. It's an achievement to keep my clothes dry as I wriggle into them. I head up the highway for another dose of chemotherapy and challenge the nurse to get my canula in on the first go. I can see that she's determined to do it. And she does.
7th June 2021
A head cold combined with chemo doesn't bring out my happy face.
The pain is continuous. My head feels like it is gripped in a vice. Every joint screams for relief. Every muscle pleads for some kind of easing. My mouth is rough and tasteless. My digestive system rejects anything that I put into it. My skin prickles. My temperature is a fine balance. I don't think that I can cope with one more thing.
My phone beeps. It's a text. I am able to call for my genetic testing results to see if I have the mutant BRCA1 or BRCA2 gene. This will tell me if I need further surgery. This will tell me if I have possibly passed this defective gene on to our children and increased their chance of developing cancer.
I click on the number. My stomach flips. She checks my details. She's lovely. She's chatty. She hesitates and then says "Well, it's good news. You have tested negative to having the gene that puts you at a higher risk of having cancer. Your cancer is just bad luck. Your children don't need to be any more concerned than anyone else."
The news somehow sooths my throat and clears my nose.
*My covid test was negative too.
8th June 2021
I'm too sick not to swim. The routine of it gets me to the water. The companionship gets me into it. And then I float on my back with the tide. The salt and my wetsuit provide the bouyancy. The cold and the environment provide the pain relief. I thought that this was what it was going to be like everyday. It hasn't been. I've been far more capable than this. This is a bad few days. I've been gifted with plenty of good days. More good ones than bad. More painless hours than painful ones.
I stretch out my arms and legs into a big star and rest my head back in the water. The sky is bright, so I close my eyes. I drift which ever way the water takes me and wonder how long that I would have to lie here before I get washed out through the river mouth and into the pacific ocean. It's a peaceful thought. On a warm day it would be fun to do. Instead I put my feet down and strip off my wetsuit before I leave the water. The soreness has eased and I get another half an hour of respite before I feel it seep back into my system. It was worth it.
10th June 2021
I peel back the shiny pink wrapper before driving down the mountain. Fruit flavoured chewing gum is helping with the rotten taste in my mouth. Watermelon flavour is my current favourite. It's subject to change.
We decide that it's the coldest air temperature that we've ever swum in. The asphalt in the carpark stings my feet with cold. I'm shivering. The breeze is icy. The sand has a definite chill to it. I'm rushing to get into the river to warm up. The water immediately thaws my toes. The air has made the sixteen degree water feel like a comfortable bath. The river is so clear that I can see all the tiny details. The grains of sand, the scales on the fish, the strands of seaweed. My headache ceases. My nose clears.
I start to feel my wetsuit rub the back of my neck. I used to think there was nothing worse than wetsuit chafe. My life experiences have now been widened but wetsuit chafing is still pretty bad. I stop and pull it off down to my waist and keep swimming, my arms free in the tingling cold.
My dose of chemotherapy has been cancelled for today. I'm too sick. I don't have to rush off to the hospital after our swim. I warm my hands around my hot chocolate. They hold their coffees. Right now, everything is okay and every part of me feels well.
16th June 2021
I throw another piece of firewood into the wheel barrow. It makes it tip and the whole thing falls over emptying the contents onto the ground. Instead of being frustrated, I'm glad that I have the energy to reload the wood back in and push it around to the back door. The pain and fatigue has worn away at my positivity. Being able to bring in firewood makes me feel strong even if it is just for five minutes.
I resume my position back on the lounge to watch the Australian swimmers attempt selection for the Olympics. My teeth are clenched. I'm not sure if it's nerves for them or a habit that I've formed to try and avoid the thought of my own discomfort. Somehow I have to get myself through this next bit. It's a short amount of time compared to what I've already done. It's a long time to be uncomfortable.
17th July 2021
I wish salt water counted towards my hydration intake. I bet I've swallowed about 500ml. The westerly wind is causing the swell to smack me right in the face and I can't help taking in mouthfuls of water. I concentrate to try and time my breath, but sometimes I turn my head only to have to keep my mouth closed and hold my breath to avoid another drink. My arm has it's feeling back after a seroma made it numb, it causes me no problems slicing through the choppy water. Today I love that I have to focus on what I'm doing while I'm swimming. Anything to take my mind of my afternoon's dose of chemo.
I whisper to the nurse that if she canulates me on her first attempt she'll be the winner. She says I'm making her nervous and gets a smaller needle. She pierces my skin, directs the needle into my vein and gets blood return in one go. "Nailed it" I say. She smiles like a champion.
Two podcasts pass the time and I'm another week closer to the end of this horrible ordeal.
21st June 2021
I lean my head back against the wall in the waiting room, my beanie cushions my head. I stare at the ceiling that is shaped like the back of a wave. It's an hour before the oncologist calls me in.
She asks me about the last few weeks. I tell her about the pain. I explain the fatigue. We talk about trying to recover from the head cold and about the seroma under my arm. I set aside any embarrassment and say "also, I have the worst tinea, my toes and feet burn at night". She says "that won't be tinea, it's neuropathy in your toes". I take off my shoes and socks and she continually presses a needle into my skin. It doesn't feel sharp until she moves up to my foot. It's the same on my fingers. I can't feel it until she gets to my hands.
She says she'll delay my chemo for two weeks. I tell her I don't want it delayed. I don't want to have it in the back of my mind for the rest of my life that my treatment would've worked better if I could've managed the doses without a break. She replies with "that's something that you'll just have to live with". She explains that the tiredness will turn into chronic fatigue that will last for years, and the neuropathy will be irriversable. I don't have a choice. The pain is too much. Physically and emotionally. She calls in a nurse to take my obs and talks about admitting me for the night. "I'm going home" I say.
I start walking back to the carpark and my tears start. My joints hurt, but worse than that, my treatment has just been stretched out further. I can't see the end. I doubt my ability to make it.
22nd June 2021
The water is still. Still and cold. It's flat like it's been freshly levelled. It's perfectly smooth. We wade in and try to adjust, causing ripples on the surface. There are smiles. There is companionship. And then we swim together towards the river mouth.
For days on land, "I can't do this", has been on repeat in my head. After moments in the water, it changes to "I'll be alright". The cold stings my face. It's all that I'm aware of. Everything else has disolved. I'll be alright.
24th June 2021
I feel myself breathe deeply as we walk up the beach in the sun. I close my eyes and enjoy the warmth. "You look tired Kirra". "Yeah, I'm a bit tired Brian" I reply. But I'm not a bit tired. I'm thoroughly depleted.
The water temp has gone up. There's no icyness to it. The duck (thermometer) says 17.9°. Strips of seaweed get stuck across my face as I glide along the surface swimming freestyle. Bubble, arm, bubble arm, breathe, arm. Just like I tell the kids. The rhythym and weightlessness is more relaxing than lying on the lounge at home. I listen to the bubbles rushing past my ears on their way to the surface. The shadows of light and dark make patterns like ribbons flapping about underneath me. The bream swim along with me, the rays stay settled in the sand.
I see the marker poles as I breathe to the right. It's over too quickly, I don't want to get out. With no chemo scheduled there is no where to rush to. I linger in the water, stand and try to balance, and then return to whatever the rest of the day holds.
26th June 2021
My finger nails are bending over my fingers. My face is numb like I've been to the dentist. The indigestion is uncomfortable. But it's all manageable. The physical pain in my bones and muscles has toned down to be bearable. Emotionally I've reached my limit. I've deleted every Instagram picture that had my face in it. I don't look like me. I don't feel like me. I just need to keep afloat. Even if it's only just my nose and mouth above the water.
27th June 2021
I push off the rocks and splash into the sea. I have time to swim away from the edge before the next wave rises and washes over the rocks. The water is deep and comfortably cool. I need this swim. My body needs the exercise. My mind needs the reassurance. I keep up with the group. I'm relieved that I can as we swim along far out past the breakers and then back again.
The others time their exit with the swell up onto the rocks. I hesitate. I don't want to cut my hands or feet. I want to give my body every chance to heal and be ready for more chemo. I turn around and swim away from the rocks and into the beach alone. I miss my own swim group. I wish they were here. The swim is still worthwhile. The ocean has boosted my mood and soothed my body.
30th June 2021
The counsellor at the cancer centre has said that I can try to acknowledge my pain. Accept it. Own it rather than fight it. It helps.
I wind down the jockey wheel of the caravan onto the shiny towball of Jon's new ute. He has hesitantly handed over the keys. We're off to explore dis-used train stations between Yass and Wagga while he continues to go to work.
I load the van with water and fresh food and then catch a glimpse of my reflection. I feel well, but I look like I'm in the middle of chemotherapy. It gives me a harsh reality check. All that's left to do is drop Max home before we leave. "You want to come Max?" I ask, "Yeah", he replies. "We'll stop by your house and pick up a change of clothes and your toothbrush". Adventures are more fun with friends anyway.
It's dark when we pull into a free campsite. Callum unclips the pop top roof. Erin holds the torch while I wind down the stabilizers. We're all inside with numerous sleeping bags and blankets in no time. I'm not sure if it's cold or not. The flushes I have make it too hard to tell. But I feel happy. Spontaneous adventures are part of who I am, and right now I'm capable of one.
* * *
The condensation slides down the inside of the caravan windows and one by one they start waking up. Their whispers turning into excited voices. We're quickly organised and in the car. I drive for about five metres before I know something is very wrong. I haven't wound up the stabilizers. The twists of metal are not pretty. A rubber mallet and a packet of cable ties later, we're on our way.
It's a big day. Thirteen dis-used stations over two hundred kilometres. I make it. I hand out everyone's hot water bottles and climb into my much loved caravan bed and stay there for eleven hours.
* * *
Instead of stretching myself over another night, we are taking the freeway back home. Each week the nurses ask me if I have numb and tingly fingers. "Numb and tingly" doesn't sound too bad. Realistically they should ask if my fingers are burning with severely painful pins and needles. It's a far more accurate description of neuropathy. Only one finger is bothering me, I straighten it out above the steering wheel. "Your playlist indicates that you are not keeping up with the times mum". "Max likes it" I say. He's been singing along. We switch to Callum's playlist, the first song is Wonderwall by Oasis (1995). I smile to myself. "I know this one" I say.
I turn into our street. There's not a mark on the ute and I have a friend with a welder who will fix the caravan. It's good to get home, after all, it's been three days since I washed my hair.
5th July 2021
I crank down the ratchet straps over the kayaks and then secure the bikes with ockey straps. Even if I achieve nothing else today, loading a trailer has made me feel good.
No one is sick as we drive over the winding roads on the mountains, and we arrive at a house with a horizon of ocean at it's back door. I stand and scan the water. I'm in awe of the enormous expanse of it. It's a brief pause. Within minutes we're in it. Splashing around and feeling the force of the shore dumpers knocking us about. An increasing amount of sand starts to collect between our skin and our swimwear. By the time we're all warm and changed there is enough of it to make a sand castle in the bottom of the shower.
It's another two days spent in the form of my previous life until I take the call from the oncologist late in the afternoon and we discuss my current side effects. It's decided that I will continue with weekly treatment starting again on Thursday and I will aim to complete the whole five remaining doses. It's the information that I was expecting, but I didn't imagine that the weight on my chest would be so heavy. The break from the medication, away from the needles and from the pain and fatigue is slipping away quickly. I don't want to return to it. But I've had a glimpse of what is on the other side. The adventures will be there waiting for me.
8th July 2021
I've forgotten my wetsuit. Bob has a spare. It's sleeveless but it helps me ease into the cool July river water. Before long, the wetsuit fills up with water and the crutch wears it's way down to my knees. It's heavy and feels like I'm towing a bucket of water. It's slow going but I'm in no hurry. I divide the schools of silver bream as I swim through them, they rejoin each other behind me.
I keep pushing the thought of being in the chemo chair away. I can't bring myself to accept that it's today until I'm sitting there. The nurse goes through the pre treatment questions. She looks up to see my tears soaking into my mask. "Do you want to continue with treatment?" She asks. I don't say anything. I don't want to say yes. Eventually I say "No, I don't want to continue with treatment, but I'm going to." She gently takes the needle from the nurse who is training and with heat packs and determined concentration, gets it in first go. I slip off my shoes, recline the chair and put my head on the pillow. I've been watching Avenger movies with Liam. I imagine that the taxol is made up of the Avenger team. They're now fighting any tiny little left over cancer cell like Ultron's robots. I close my eyes and fall asleep. I'm woken by my drip beeping. Dose number eight is complete and I'm confident that the Avengers have done their job.
A head cold combined with chemo doesn't bring out my happy face.
The pain is continuous. My head feels like it is gripped in a vice. Every joint screams for relief. Every muscle pleads for some kind of easing. My mouth is rough and tasteless. My digestive system rejects anything that I put into it. My skin prickles. My temperature is a fine balance. I don't think that I can cope with one more thing.
My phone beeps. It's a text. I am able to call for my genetic testing results to see if I have the mutant BRCA1 or BRCA2 gene. This will tell me if I need further surgery. This will tell me if I have possibly passed this defective gene on to our children and increased their chance of developing cancer.
I click on the number. My stomach flips. She checks my details. She's lovely. She's chatty. She hesitates and then says "Well, it's good news. You have tested negative to having the gene that puts you at a higher risk of having cancer. Your cancer is just bad luck. Your children don't need to be any more concerned than anyone else."
The news somehow sooths my throat and clears my nose.
*My covid test was negative too.
8th June 2021
I'm too sick not to swim. The routine of it gets me to the water. The companionship gets me into it. And then I float on my back with the tide. The salt and my wetsuit provide the bouyancy. The cold and the environment provide the pain relief. I thought that this was what it was going to be like everyday. It hasn't been. I've been far more capable than this. This is a bad few days. I've been gifted with plenty of good days. More good ones than bad. More painless hours than painful ones.
I stretch out my arms and legs into a big star and rest my head back in the water. The sky is bright, so I close my eyes. I drift which ever way the water takes me and wonder how long that I would have to lie here before I get washed out through the river mouth and into the pacific ocean. It's a peaceful thought. On a warm day it would be fun to do. Instead I put my feet down and strip off my wetsuit before I leave the water. The soreness has eased and I get another half an hour of respite before I feel it seep back into my system. It was worth it.
10th June 2021
I peel back the shiny pink wrapper before driving down the mountain. Fruit flavoured chewing gum is helping with the rotten taste in my mouth. Watermelon flavour is my current favourite. It's subject to change.
We decide that it's the coldest air temperature that we've ever swum in. The asphalt in the carpark stings my feet with cold. I'm shivering. The breeze is icy. The sand has a definite chill to it. I'm rushing to get into the river to warm up. The water immediately thaws my toes. The air has made the sixteen degree water feel like a comfortable bath. The river is so clear that I can see all the tiny details. The grains of sand, the scales on the fish, the strands of seaweed. My headache ceases. My nose clears.
I start to feel my wetsuit rub the back of my neck. I used to think there was nothing worse than wetsuit chafe. My life experiences have now been widened but wetsuit chafing is still pretty bad. I stop and pull it off down to my waist and keep swimming, my arms free in the tingling cold.
My dose of chemotherapy has been cancelled for today. I'm too sick. I don't have to rush off to the hospital after our swim. I warm my hands around my hot chocolate. They hold their coffees. Right now, everything is okay and every part of me feels well.
16th June 2021
I throw another piece of firewood into the wheel barrow. It makes it tip and the whole thing falls over emptying the contents onto the ground. Instead of being frustrated, I'm glad that I have the energy to reload the wood back in and push it around to the back door. The pain and fatigue has worn away at my positivity. Being able to bring in firewood makes me feel strong even if it is just for five minutes.
I resume my position back on the lounge to watch the Australian swimmers attempt selection for the Olympics. My teeth are clenched. I'm not sure if it's nerves for them or a habit that I've formed to try and avoid the thought of my own discomfort. Somehow I have to get myself through this next bit. It's a short amount of time compared to what I've already done. It's a long time to be uncomfortable.
17th July 2021
I wish salt water counted towards my hydration intake. I bet I've swallowed about 500ml. The westerly wind is causing the swell to smack me right in the face and I can't help taking in mouthfuls of water. I concentrate to try and time my breath, but sometimes I turn my head only to have to keep my mouth closed and hold my breath to avoid another drink. My arm has it's feeling back after a seroma made it numb, it causes me no problems slicing through the choppy water. Today I love that I have to focus on what I'm doing while I'm swimming. Anything to take my mind of my afternoon's dose of chemo.
I whisper to the nurse that if she canulates me on her first attempt she'll be the winner. She says I'm making her nervous and gets a smaller needle. She pierces my skin, directs the needle into my vein and gets blood return in one go. "Nailed it" I say. She smiles like a champion.
Two podcasts pass the time and I'm another week closer to the end of this horrible ordeal.
21st June 2021
I lean my head back against the wall in the waiting room, my beanie cushions my head. I stare at the ceiling that is shaped like the back of a wave. It's an hour before the oncologist calls me in.
She asks me about the last few weeks. I tell her about the pain. I explain the fatigue. We talk about trying to recover from the head cold and about the seroma under my arm. I set aside any embarrassment and say "also, I have the worst tinea, my toes and feet burn at night". She says "that won't be tinea, it's neuropathy in your toes". I take off my shoes and socks and she continually presses a needle into my skin. It doesn't feel sharp until she moves up to my foot. It's the same on my fingers. I can't feel it until she gets to my hands.
She says she'll delay my chemo for two weeks. I tell her I don't want it delayed. I don't want to have it in the back of my mind for the rest of my life that my treatment would've worked better if I could've managed the doses without a break. She replies with "that's something that you'll just have to live with". She explains that the tiredness will turn into chronic fatigue that will last for years, and the neuropathy will be irriversable. I don't have a choice. The pain is too much. Physically and emotionally. She calls in a nurse to take my obs and talks about admitting me for the night. "I'm going home" I say.
I start walking back to the carpark and my tears start. My joints hurt, but worse than that, my treatment has just been stretched out further. I can't see the end. I doubt my ability to make it.
22nd June 2021
The water is still. Still and cold. It's flat like it's been freshly levelled. It's perfectly smooth. We wade in and try to adjust, causing ripples on the surface. There are smiles. There is companionship. And then we swim together towards the river mouth.
For days on land, "I can't do this", has been on repeat in my head. After moments in the water, it changes to "I'll be alright". The cold stings my face. It's all that I'm aware of. Everything else has disolved. I'll be alright.
24th June 2021
I feel myself breathe deeply as we walk up the beach in the sun. I close my eyes and enjoy the warmth. "You look tired Kirra". "Yeah, I'm a bit tired Brian" I reply. But I'm not a bit tired. I'm thoroughly depleted.
The water temp has gone up. There's no icyness to it. The duck (thermometer) says 17.9°. Strips of seaweed get stuck across my face as I glide along the surface swimming freestyle. Bubble, arm, bubble arm, breathe, arm. Just like I tell the kids. The rhythym and weightlessness is more relaxing than lying on the lounge at home. I listen to the bubbles rushing past my ears on their way to the surface. The shadows of light and dark make patterns like ribbons flapping about underneath me. The bream swim along with me, the rays stay settled in the sand.
I see the marker poles as I breathe to the right. It's over too quickly, I don't want to get out. With no chemo scheduled there is no where to rush to. I linger in the water, stand and try to balance, and then return to whatever the rest of the day holds.
26th June 2021
My finger nails are bending over my fingers. My face is numb like I've been to the dentist. The indigestion is uncomfortable. But it's all manageable. The physical pain in my bones and muscles has toned down to be bearable. Emotionally I've reached my limit. I've deleted every Instagram picture that had my face in it. I don't look like me. I don't feel like me. I just need to keep afloat. Even if it's only just my nose and mouth above the water.
27th June 2021
I push off the rocks and splash into the sea. I have time to swim away from the edge before the next wave rises and washes over the rocks. The water is deep and comfortably cool. I need this swim. My body needs the exercise. My mind needs the reassurance. I keep up with the group. I'm relieved that I can as we swim along far out past the breakers and then back again.
The others time their exit with the swell up onto the rocks. I hesitate. I don't want to cut my hands or feet. I want to give my body every chance to heal and be ready for more chemo. I turn around and swim away from the rocks and into the beach alone. I miss my own swim group. I wish they were here. The swim is still worthwhile. The ocean has boosted my mood and soothed my body.
30th June 2021
The counsellor at the cancer centre has said that I can try to acknowledge my pain. Accept it. Own it rather than fight it. It helps.
I wind down the jockey wheel of the caravan onto the shiny towball of Jon's new ute. He has hesitantly handed over the keys. We're off to explore dis-used train stations between Yass and Wagga while he continues to go to work.
I load the van with water and fresh food and then catch a glimpse of my reflection. I feel well, but I look like I'm in the middle of chemotherapy. It gives me a harsh reality check. All that's left to do is drop Max home before we leave. "You want to come Max?" I ask, "Yeah", he replies. "We'll stop by your house and pick up a change of clothes and your toothbrush". Adventures are more fun with friends anyway.
It's dark when we pull into a free campsite. Callum unclips the pop top roof. Erin holds the torch while I wind down the stabilizers. We're all inside with numerous sleeping bags and blankets in no time. I'm not sure if it's cold or not. The flushes I have make it too hard to tell. But I feel happy. Spontaneous adventures are part of who I am, and right now I'm capable of one.
* * *
The condensation slides down the inside of the caravan windows and one by one they start waking up. Their whispers turning into excited voices. We're quickly organised and in the car. I drive for about five metres before I know something is very wrong. I haven't wound up the stabilizers. The twists of metal are not pretty. A rubber mallet and a packet of cable ties later, we're on our way.
It's a big day. Thirteen dis-used stations over two hundred kilometres. I make it. I hand out everyone's hot water bottles and climb into my much loved caravan bed and stay there for eleven hours.
* * *
Instead of stretching myself over another night, we are taking the freeway back home. Each week the nurses ask me if I have numb and tingly fingers. "Numb and tingly" doesn't sound too bad. Realistically they should ask if my fingers are burning with severely painful pins and needles. It's a far more accurate description of neuropathy. Only one finger is bothering me, I straighten it out above the steering wheel. "Your playlist indicates that you are not keeping up with the times mum". "Max likes it" I say. He's been singing along. We switch to Callum's playlist, the first song is Wonderwall by Oasis (1995). I smile to myself. "I know this one" I say.
I turn into our street. There's not a mark on the ute and I have a friend with a welder who will fix the caravan. It's good to get home, after all, it's been three days since I washed my hair.
5th July 2021
I crank down the ratchet straps over the kayaks and then secure the bikes with ockey straps. Even if I achieve nothing else today, loading a trailer has made me feel good.
No one is sick as we drive over the winding roads on the mountains, and we arrive at a house with a horizon of ocean at it's back door. I stand and scan the water. I'm in awe of the enormous expanse of it. It's a brief pause. Within minutes we're in it. Splashing around and feeling the force of the shore dumpers knocking us about. An increasing amount of sand starts to collect between our skin and our swimwear. By the time we're all warm and changed there is enough of it to make a sand castle in the bottom of the shower.
It's another two days spent in the form of my previous life until I take the call from the oncologist late in the afternoon and we discuss my current side effects. It's decided that I will continue with weekly treatment starting again on Thursday and I will aim to complete the whole five remaining doses. It's the information that I was expecting, but I didn't imagine that the weight on my chest would be so heavy. The break from the medication, away from the needles and from the pain and fatigue is slipping away quickly. I don't want to return to it. But I've had a glimpse of what is on the other side. The adventures will be there waiting for me.
8th July 2021
I've forgotten my wetsuit. Bob has a spare. It's sleeveless but it helps me ease into the cool July river water. Before long, the wetsuit fills up with water and the crutch wears it's way down to my knees. It's heavy and feels like I'm towing a bucket of water. It's slow going but I'm in no hurry. I divide the schools of silver bream as I swim through them, they rejoin each other behind me.
I keep pushing the thought of being in the chemo chair away. I can't bring myself to accept that it's today until I'm sitting there. The nurse goes through the pre treatment questions. She looks up to see my tears soaking into my mask. "Do you want to continue with treatment?" She asks. I don't say anything. I don't want to say yes. Eventually I say "No, I don't want to continue with treatment, but I'm going to." She gently takes the needle from the nurse who is training and with heat packs and determined concentration, gets it in first go. I slip off my shoes, recline the chair and put my head on the pillow. I've been watching Avenger movies with Liam. I imagine that the taxol is made up of the Avenger team. They're now fighting any tiny little left over cancer cell like Ultron's robots. I close my eyes and fall asleep. I'm woken by my drip beeping. Dose number eight is complete and I'm confident that the Avengers have done their job.
15th July 2021
I swim closer and closer to a flock of seagulls who are sitting on the water, they don't seem to notice me coming until the very last moment when they spread their wings and splash the surface as they fly away. I return my focus to under the water. Richard glides past me. He rarely wears a wetsuit, but when he does, there's no keeping up with him. He stops. I pass. He swims again. This continues again and again until we reach the bank together. The sun is hot. It doesn't feel like winter at all.
I have hours to fill, so I clamber over the rocks and explore the rock pools before it's time to drive to the hospital.
The turquoise coloured chair is now very familiar. I sit down in it, recline it and get comfortable. I'm hydrated, my veins are ready, my head is ready. We discuss this week's growing amount of side effects. I considered not telling them every single one because I don't want another delay, but in the end I decide to leave the medical decisions up to them rather than me, even though my first aid certificate is up to date.
Treatment is started and stopped to let me recover from a burning flush and then continues until late in the afternoon. I have a window seat and can watch the darkening clouds drift through the blue sky.
Nine doses are finished. There is no research yet to confirm that twelve doses are any better than nine. Whatever happens next I'm ready to accept.
I swim closer and closer to a flock of seagulls who are sitting on the water, they don't seem to notice me coming until the very last moment when they spread their wings and splash the surface as they fly away. I return my focus to under the water. Richard glides past me. He rarely wears a wetsuit, but when he does, there's no keeping up with him. He stops. I pass. He swims again. This continues again and again until we reach the bank together. The sun is hot. It doesn't feel like winter at all.
I have hours to fill, so I clamber over the rocks and explore the rock pools before it's time to drive to the hospital.
The turquoise coloured chair is now very familiar. I sit down in it, recline it and get comfortable. I'm hydrated, my veins are ready, my head is ready. We discuss this week's growing amount of side effects. I considered not telling them every single one because I don't want another delay, but in the end I decide to leave the medical decisions up to them rather than me, even though my first aid certificate is up to date.
Treatment is started and stopped to let me recover from a burning flush and then continues until late in the afternoon. I have a window seat and can watch the darkening clouds drift through the blue sky.
Nine doses are finished. There is no research yet to confirm that twelve doses are any better than nine. Whatever happens next I'm ready to accept.
21st/22nd July 2021
The water temp is 37.5° in the spa. The air temp is a crisp zero. I rush to submerge my body under the steaming surface. The stars are out. I can hear dogs in their back yards until I lie back and put my ears under the water and think about the day.
My symptoms eased enough for me to leave the house after a rough two days, and celebrate the life of another whose time here has finished. She would have loved to be there with us sharing memories. Laughing. Drinking tea out of Royal Doultons and eating scones and sandwiches. I've always thought that you should be able to attend your own wake. I was privileged to be there today. I'll remember her smile and her laugh. I'll always remember how she was genuinely pleased to see me.
* * *
After three days of not being able to eat, my wetsuit zips up easily. The water is cold. 14.8°. My face and head are stinging with the temperature. It's a discomfort that I can control. I can switch to backstroke or breaststroke and the pain from the cold instantly goes away. I like the power that I have over it. I can make it stop at any time, unlike the side effects of treatment.
The sun is out. I love watching my shadow swim. It looks competent. I watch it as my hands and arms pull through the water. There are thousands of whiting swimming around me ignoring the fishing line coming from the bank. I feel the water get warmer the closer that I get to the sandbank. The unpleasantness of the last few days is set aside and forgotten for awhile.
I glance up at the sign on the building that says Illawarra Cancer Centre. Six months ago just reading those three words terrified me. Now parking in the cancer patient carpark and walking to the ward is just routine. We talk about my week. Apparently I can have 14 Imodium tablets a day before there is an actual problem. Never mind that the stomach cramps are as intense as labour pains. The needle goes in, I listen to the rhythm of the pump that pushes the taxol into my blood stream. It beeps when it's done and the needle is removed. I wander back outside and feel the warmth from the setting winter sun. This routine that has become normal is nearly over. I'm almost done.
The water temp is 37.5° in the spa. The air temp is a crisp zero. I rush to submerge my body under the steaming surface. The stars are out. I can hear dogs in their back yards until I lie back and put my ears under the water and think about the day.
My symptoms eased enough for me to leave the house after a rough two days, and celebrate the life of another whose time here has finished. She would have loved to be there with us sharing memories. Laughing. Drinking tea out of Royal Doultons and eating scones and sandwiches. I've always thought that you should be able to attend your own wake. I was privileged to be there today. I'll remember her smile and her laugh. I'll always remember how she was genuinely pleased to see me.
* * *
After three days of not being able to eat, my wetsuit zips up easily. The water is cold. 14.8°. My face and head are stinging with the temperature. It's a discomfort that I can control. I can switch to backstroke or breaststroke and the pain from the cold instantly goes away. I like the power that I have over it. I can make it stop at any time, unlike the side effects of treatment.
The sun is out. I love watching my shadow swim. It looks competent. I watch it as my hands and arms pull through the water. There are thousands of whiting swimming around me ignoring the fishing line coming from the bank. I feel the water get warmer the closer that I get to the sandbank. The unpleasantness of the last few days is set aside and forgotten for awhile.
I glance up at the sign on the building that says Illawarra Cancer Centre. Six months ago just reading those three words terrified me. Now parking in the cancer patient carpark and walking to the ward is just routine. We talk about my week. Apparently I can have 14 Imodium tablets a day before there is an actual problem. Never mind that the stomach cramps are as intense as labour pains. The needle goes in, I listen to the rhythm of the pump that pushes the taxol into my blood stream. It beeps when it's done and the needle is removed. I wander back outside and feel the warmth from the setting winter sun. This routine that has become normal is nearly over. I'm almost done.
29th July 2021
Mark opts for the colder river water. Bob stays on the shore. The remaining three of us decide on an ocean swim. It's a few degrees warmer than the river. The sun is glistening off the water and there is no swell. The norwesterly wind is biting, but once we're in the water we're protected from it. We start from the southern end of the beach and the distance between each of us widens quickly. Richard is way out the front. I'm in the middle and Peter is slightly back, but way off shore. I can't see either of them or another living thing. No fish or crabs, no stingrays. There are no clouds either, just crystal clear water for as far as I can see. My arms roll over and over. And then my heart rate goes up suddenly as I glimpse a dark figure to my left. It's Richard. He's stopped to wait for us. I breathe out. There are no surfers today, no waves to ride, together we keep going. We've never swum to the furthest northern end before. I want to do it. I want to keep swimming until I touch the rocks. I bet Peter does too, then it will be a full lap. A proper finish line. We go ahead touch the rocks and tell Richard that he has to do the same. He may have rolled his eyes at us but touches the rocks anyway. It's a big swim but I love the feeling of a completed lap. I'm so close to completing chemo. I'm so keen for that finish line. Just today and then one more dose. I'm nearly there.
Peter starts to jog back towards the southern end. I don't feel at all capable of it but join in anyway. My hips are screaming at me to stop but my head thinks that I can make it to the wooden pole sticking up in the sand. I get there but it's a struggle, I look up and see the fishermen and their utes further down the beach. I say out loud that I'm going to keep running until I get to the utes. It's uncomfortable and I feel completely incapable of it. My hips and legs are saying no. My head wants to stop but I think it's my heart that makes the rest of me continue. We pass the utes. It's only another two hundred metres until the southern tip of the beach. Why stop now. I make it to the very end.
Before I get changed, Bob suggests that the conditions are perfect to jump into the blow hole at Kiama. I'm in. I'm very much in. There isn't the slightest hesitation. My phone rings and I consider ignoring it, but see that I have two missed calls and three text messages. It's the hospital. My white blood cell count is too low to have chemo today. It will have to be delayed. The finish line is moved again. The doctor tells me that it's important that I stay close to an emergency department and keep an eye on my temperature or any sign of infection. A risk assessment rushes through my head. Kiama blow hole is closer to the hospital than when I am at home. I feel well. I have no cuts or abrasions but it's likely I'll get one climbing out of the water onto the rocks, but only a small one. If I don't jump into the blowhole I know I'll be overwhelmed with frustration that the end of chemotherapy has just changed again. If I do jump in I'll enjoy the lasting adrenaline for the rest of the day. The risk assessment is complete. I'm jumping.
I look down into the dark hole. The whooshing noise is eerie. It's a long way down. Bob, Mark and I look at each other and laugh. I feel like if one of us voices hesitation we'll bail. "We're doing it". I say. And with that, Bob launches himself off the rocks and soars towards the water and surfaces with a smile. I'm next and then Mark. The cave over us makes the water look dark and then a hissing sound comes from the water spraying back towards us. Our voices echo off the walls. It's amazing. Truly amazing. The rush from the jump, the atmosphere in the cave, the bond of doing something crazy together. Chemotherapy and it's finish line can wait.
Mark opts for the colder river water. Bob stays on the shore. The remaining three of us decide on an ocean swim. It's a few degrees warmer than the river. The sun is glistening off the water and there is no swell. The norwesterly wind is biting, but once we're in the water we're protected from it. We start from the southern end of the beach and the distance between each of us widens quickly. Richard is way out the front. I'm in the middle and Peter is slightly back, but way off shore. I can't see either of them or another living thing. No fish or crabs, no stingrays. There are no clouds either, just crystal clear water for as far as I can see. My arms roll over and over. And then my heart rate goes up suddenly as I glimpse a dark figure to my left. It's Richard. He's stopped to wait for us. I breathe out. There are no surfers today, no waves to ride, together we keep going. We've never swum to the furthest northern end before. I want to do it. I want to keep swimming until I touch the rocks. I bet Peter does too, then it will be a full lap. A proper finish line. We go ahead touch the rocks and tell Richard that he has to do the same. He may have rolled his eyes at us but touches the rocks anyway. It's a big swim but I love the feeling of a completed lap. I'm so close to completing chemo. I'm so keen for that finish line. Just today and then one more dose. I'm nearly there.
Peter starts to jog back towards the southern end. I don't feel at all capable of it but join in anyway. My hips are screaming at me to stop but my head thinks that I can make it to the wooden pole sticking up in the sand. I get there but it's a struggle, I look up and see the fishermen and their utes further down the beach. I say out loud that I'm going to keep running until I get to the utes. It's uncomfortable and I feel completely incapable of it. My hips and legs are saying no. My head wants to stop but I think it's my heart that makes the rest of me continue. We pass the utes. It's only another two hundred metres until the southern tip of the beach. Why stop now. I make it to the very end.
Before I get changed, Bob suggests that the conditions are perfect to jump into the blow hole at Kiama. I'm in. I'm very much in. There isn't the slightest hesitation. My phone rings and I consider ignoring it, but see that I have two missed calls and three text messages. It's the hospital. My white blood cell count is too low to have chemo today. It will have to be delayed. The finish line is moved again. The doctor tells me that it's important that I stay close to an emergency department and keep an eye on my temperature or any sign of infection. A risk assessment rushes through my head. Kiama blow hole is closer to the hospital than when I am at home. I feel well. I have no cuts or abrasions but it's likely I'll get one climbing out of the water onto the rocks, but only a small one. If I don't jump into the blowhole I know I'll be overwhelmed with frustration that the end of chemotherapy has just changed again. If I do jump in I'll enjoy the lasting adrenaline for the rest of the day. The risk assessment is complete. I'm jumping.
I look down into the dark hole. The whooshing noise is eerie. It's a long way down. Bob, Mark and I look at each other and laugh. I feel like if one of us voices hesitation we'll bail. "We're doing it". I say. And with that, Bob launches himself off the rocks and soars towards the water and surfaces with a smile. I'm next and then Mark. The cave over us makes the water look dark and then a hissing sound comes from the water spraying back towards us. Our voices echo off the walls. It's amazing. Truly amazing. The rush from the jump, the atmosphere in the cave, the bond of doing something crazy together. Chemotherapy and it's finish line can wait.
30th July 2021
The timber floor boards are clean and shiney. The windows are from the floor to the ceiling and look out over Wollongong. Six months ago I was here and so terrified that I could barely breath. The last time I sat in this waiting room was to hear my results from the surgery. Back then I had hair. I looked normal. I had no idea what was ahead.
Today is just a routine check up. The surgeon asks why I haven't finished chemo yet. I say "It's been delayed a few times". He asks why but I'm not sure which of the reasons to give him. I say "neuropathy and fatigue, and this week because of my white blood cell count". He tells me radiation will be a breeze. I have no intention of believing him, but trust that it'll be easier than it has been so far.
The timber floor boards are clean and shiney. The windows are from the floor to the ceiling and look out over Wollongong. Six months ago I was here and so terrified that I could barely breath. The last time I sat in this waiting room was to hear my results from the surgery. Back then I had hair. I looked normal. I had no idea what was ahead.
Today is just a routine check up. The surgeon asks why I haven't finished chemo yet. I say "It's been delayed a few times". He asks why but I'm not sure which of the reasons to give him. I say "neuropathy and fatigue, and this week because of my white blood cell count". He tells me radiation will be a breeze. I have no intention of believing him, but trust that it'll be easier than it has been so far.
1st August 2021
The lights are off but the glow of the TV fills the lounge room. The floor is covered in mattresses and blankets. Where you sleep is optional because the Olympics are on. I've lathered my feet in tinea cream again. The burning is back, the cream numbs it. I've managed to eat normally for two days.
It's getting rarer that the five of us are all in the lounge room together content watching the same thing. I'm not completely convinced that they are all interested in the events, it's possibly the novelty of staying up late and eating salt and vinegar chips and chocolate in the lounge room that keeps them here with me. Either way, the preciousness of the situation is not lost on me.
Nothing stays the same. What our kids need from me has changed. I'm caught up in trying to find my identity at the same time that they're trying to find theirs. Soon I'm not going to be "the mum with breast cancer", but I can't ever be who I was before. My perspective has changed. I've learnt too much. I would never choose to go through this, but I'll be more capable after it is all over. I'm still in here somewhere. I love watching the Olympics. I still need to swim and I can still jump from heights into water. I've put my purple phone case back on my phone. Whoever I end up being after this will be okay.
The lights are off but the glow of the TV fills the lounge room. The floor is covered in mattresses and blankets. Where you sleep is optional because the Olympics are on. I've lathered my feet in tinea cream again. The burning is back, the cream numbs it. I've managed to eat normally for two days.
It's getting rarer that the five of us are all in the lounge room together content watching the same thing. I'm not completely convinced that they are all interested in the events, it's possibly the novelty of staying up late and eating salt and vinegar chips and chocolate in the lounge room that keeps them here with me. Either way, the preciousness of the situation is not lost on me.
Nothing stays the same. What our kids need from me has changed. I'm caught up in trying to find my identity at the same time that they're trying to find theirs. Soon I'm not going to be "the mum with breast cancer", but I can't ever be who I was before. My perspective has changed. I've learnt too much. I would never choose to go through this, but I'll be more capable after it is all over. I'm still in here somewhere. I love watching the Olympics. I still need to swim and I can still jump from heights into water. I've put my purple phone case back on my phone. Whoever I end up being after this will be okay.
3rd August 2021
The waves battle us. It's like they're warning us that if we're coming in today we'll have to work. They push us back again and again until we break through to the other side. We swim way off shore. So far our that I can't see the sand on the beach, only the tops of the trees when I'm pushed up by the swell. Way out there, the water is clear and the patterns in the sand are spectacular. Each grain looks perfectly placed as if it's an art work in a gallery.
I mistime my breath and get water up my nose. It instantly reminds me of my very first dose of chemotherapy. I'm irritated that my place of escape is interrupted with that memory. I push it aside quickly, not letting it take anything away from me. Again the protective arc is around me. Richard in front. Peter shark side and Ken behind. I feel completely at ease.
We won't be touching the rocks at the end of the beach today. The waves are crashing over them. It's only safe enough to swim to the edge of the froth. We linger out there in the swell as we're thrown up and down enjoying the changing depth. I turn to swim towards the beach and get tumbled by a wave. It holds me down against the sand on the bottom reminding me of its strength. I calmly hold my breath until I can pop back up. It reminds me of mine.
The waves battle us. It's like they're warning us that if we're coming in today we'll have to work. They push us back again and again until we break through to the other side. We swim way off shore. So far our that I can't see the sand on the beach, only the tops of the trees when I'm pushed up by the swell. Way out there, the water is clear and the patterns in the sand are spectacular. Each grain looks perfectly placed as if it's an art work in a gallery.
I mistime my breath and get water up my nose. It instantly reminds me of my very first dose of chemotherapy. I'm irritated that my place of escape is interrupted with that memory. I push it aside quickly, not letting it take anything away from me. Again the protective arc is around me. Richard in front. Peter shark side and Ken behind. I feel completely at ease.
We won't be touching the rocks at the end of the beach today. The waves are crashing over them. It's only safe enough to swim to the edge of the froth. We linger out there in the swell as we're thrown up and down enjoying the changing depth. I turn to swim towards the beach and get tumbled by a wave. It holds me down against the sand on the bottom reminding me of its strength. I calmly hold my breath until I can pop back up. It reminds me of mine.
5th August 2021
I wake up feeling like there are Tetris blocks falling that I can't arrange quickly enough. Life just keeps on happening around me. I don't know if I have chemo today. I don't know the answers to a lot of things.
I can breathe when I get to the edge of the river.
Mark and I edge our way into the water. It's 14.4°. I'm not sure why we think it's funny but we're both laughing. He puts his head straight in and does freestyle over to the sand bank. I do dog paddle and keep my head out avoiding an icy brain freeze. The ocean temp is 17.2°. The rest of us opt for the warmer water. Mark is braver, possibly wiser, and content in the cold. He sticks to the river.
A wave smacks me over and upside down. My zip comes undone and I get a layer of sand in between my skin and my wetsuit. When my head surfaces I look at Ken. Again we laugh, this time at the force of the water. Today we're swimming south. The current is making us feel like champions and we cover a lot of distance in a short amount of time. When we reach the end, I suggest we turn around and get a few more metres in before we call it a day. We turn. My arms are going around, my legs are kicking but I don't move at all. I'm not making any progress. I turn towards the shore and try again but I just get pushed back. I realise I have to go back out and around. I adjust the angle and swim. I just keep at it until Ken and I touch our feet on the sand back at the beach. We look around for Peter and Richard. They were 50m ahead of us. Now they are nowhere. When we look back out into the ocean we can see that they've been dragged towards New Zealand. For some reason, this is funny too. They adjust their direction and swim safely back to the shore where we meet Mark. We laugh and retell our stories of rips and waves, churned up water and warm currents. It's never dull with this lot.
I have no messages and no missed calls. I drive to the hospital and go through the routine without a hitch. Now I only have one left. One more dose of chemotherapy at 11:45am next Thursday. I try not to focus on it. I try not to build up hope that by this time next week this part of my treatment will be all over. Nobody knows what is in their week ahead. Especially not me. But I can't help myself but hope that this ever changing finish line has now been set for me to cross.
I wake up feeling like there are Tetris blocks falling that I can't arrange quickly enough. Life just keeps on happening around me. I don't know if I have chemo today. I don't know the answers to a lot of things.
I can breathe when I get to the edge of the river.
Mark and I edge our way into the water. It's 14.4°. I'm not sure why we think it's funny but we're both laughing. He puts his head straight in and does freestyle over to the sand bank. I do dog paddle and keep my head out avoiding an icy brain freeze. The ocean temp is 17.2°. The rest of us opt for the warmer water. Mark is braver, possibly wiser, and content in the cold. He sticks to the river.
A wave smacks me over and upside down. My zip comes undone and I get a layer of sand in between my skin and my wetsuit. When my head surfaces I look at Ken. Again we laugh, this time at the force of the water. Today we're swimming south. The current is making us feel like champions and we cover a lot of distance in a short amount of time. When we reach the end, I suggest we turn around and get a few more metres in before we call it a day. We turn. My arms are going around, my legs are kicking but I don't move at all. I'm not making any progress. I turn towards the shore and try again but I just get pushed back. I realise I have to go back out and around. I adjust the angle and swim. I just keep at it until Ken and I touch our feet on the sand back at the beach. We look around for Peter and Richard. They were 50m ahead of us. Now they are nowhere. When we look back out into the ocean we can see that they've been dragged towards New Zealand. For some reason, this is funny too. They adjust their direction and swim safely back to the shore where we meet Mark. We laugh and retell our stories of rips and waves, churned up water and warm currents. It's never dull with this lot.
I have no messages and no missed calls. I drive to the hospital and go through the routine without a hitch. Now I only have one left. One more dose of chemotherapy at 11:45am next Thursday. I try not to focus on it. I try not to build up hope that by this time next week this part of my treatment will be all over. Nobody knows what is in their week ahead. Especially not me. But I can't help myself but hope that this ever changing finish line has now been set for me to cross.
6th August 2021
The morning sunlight is beaming through the space between the edge of the curtain and the wall in our bedroom. I lay and watch it reflect off little pieces of dust floating around. The side effects hit me with force only hours after my dose of chemo. Panadol does nothing.
I will myself to get up and help Jon with the usual family tasks, but he's left to do them on his own. My body is at the end of having to cope with the chemicals being pumped into it. It's tired of fighting. It's resilience has been pummeled and battered until there is barely anything left to rely on. Days like these throw me into dread of having to deal with anything further. But they don't last. I just have to wait it out.
The morning sunlight is beaming through the space between the edge of the curtain and the wall in our bedroom. I lay and watch it reflect off little pieces of dust floating around. The side effects hit me with force only hours after my dose of chemo. Panadol does nothing.
I will myself to get up and help Jon with the usual family tasks, but he's left to do them on his own. My body is at the end of having to cope with the chemicals being pumped into it. It's tired of fighting. It's resilience has been pummeled and battered until there is barely anything left to rely on. Days like these throw me into dread of having to deal with anything further. But they don't last. I just have to wait it out.
10th August 2021
My track record for getting through bad days is 100%.
Today is a good one.
It's almost high tide. The river is almost eighteen degrees. I almost feel well. The wind is causing a little bump on the surface of the water that makes my head bounce gently up and down. My yellow cap probably looks like a tennis ball to the kayakers further up the river. It's a calm easy swim. It's relaxing and just what I need. The tide has nearly stopped creeping up into the river. In the next few hours it will rush back out again into the ocean.
I often wonder about the water I swim in and where it has been. I don't mean if it's been near the tip further up the river. I mean how far has it travelled and what has it seen. What has it provided life to and what else has it done before I find joy in it. I'm sure someone could tell me if the oceans eventually mix or not, but I don't really want to know the answer. Some things are better left as a mystery. I'm glad that I never knew what 2021 would be like for me. I'm glad I don't know what's ahead. It could be terrifying and hard, but there's a chance that there will also be bits that are exciting and fun.
My track record for getting through bad days is 100%.
Today is a good one.
It's almost high tide. The river is almost eighteen degrees. I almost feel well. The wind is causing a little bump on the surface of the water that makes my head bounce gently up and down. My yellow cap probably looks like a tennis ball to the kayakers further up the river. It's a calm easy swim. It's relaxing and just what I need. The tide has nearly stopped creeping up into the river. In the next few hours it will rush back out again into the ocean.
I often wonder about the water I swim in and where it has been. I don't mean if it's been near the tip further up the river. I mean how far has it travelled and what has it seen. What has it provided life to and what else has it done before I find joy in it. I'm sure someone could tell me if the oceans eventually mix or not, but I don't really want to know the answer. Some things are better left as a mystery. I'm glad that I never knew what 2021 would be like for me. I'm glad I don't know what's ahead. It could be terrifying and hard, but there's a chance that there will also be bits that are exciting and fun.
12th August 2021
I put my head on my pillow. I can hear my heart beating. My chest feels tight. I'm uncomfortable. By this time tomorrow I will no longer be having chemotherapy. It will be over. I'm nervous of it being delayed, I just want it finished and yet I'm also nervous about being sick from the side effects for another week.
* * *
The sun is reflecting so brightly off the water that I have to squint. I try so hard to stay in the moment and not think about chemo. Not worry if it's on or off. Not trying to imagine how I will feel when it's all over. Not trying assume that my blood counts are all okay enough for it to go ahead.
Again it's a leisurely swim and I'm completely comfortable. I have no aches or pains in the water. I'm stroking easily and effortlessly. Under the water is another world. It's far away from everything else.
My canula goes in easily. It's all over in the allocated two hours. The ever changing finish line has now been drawn in the sand and I've crossed it.
I put my head on my pillow. I can hear my heart beating. My chest feels tight. I'm uncomfortable. By this time tomorrow I will no longer be having chemotherapy. It will be over. I'm nervous of it being delayed, I just want it finished and yet I'm also nervous about being sick from the side effects for another week.
* * *
The sun is reflecting so brightly off the water that I have to squint. I try so hard to stay in the moment and not think about chemo. Not worry if it's on or off. Not trying to imagine how I will feel when it's all over. Not trying assume that my blood counts are all okay enough for it to go ahead.
Again it's a leisurely swim and I'm completely comfortable. I have no aches or pains in the water. I'm stroking easily and effortlessly. Under the water is another world. It's far away from everything else.
My canula goes in easily. It's all over in the allocated two hours. The ever changing finish line has now been drawn in the sand and I've crossed it.
13th August 2021
I wake up with the feeling of relief that I thought I would've had yesterday. The calendar doesn't suggest that winter is over yet, and my 'winter' of cancer treatment has still got a bit to go, but outside there is a slight smell of spring this morning. The air is still. The daffodils have bloomed. The season is moving on to the next one. The dark, cold and bleakness of winter never stays around forever.
I wake up with the feeling of relief that I thought I would've had yesterday. The calendar doesn't suggest that winter is over yet, and my 'winter' of cancer treatment has still got a bit to go, but outside there is a slight smell of spring this morning. The air is still. The daffodils have bloomed. The season is moving on to the next one. The dark, cold and bleakness of winter never stays around forever.
17th August 2021
Today is the day I have feared above everything else. It's my swimming day and the state wide lockdown has not only cut me off from the ocean but from the friends I swim with. The ones who truly understand why I swim all year round. All I can do is be thankful that I don't have chemo and no access to the invaluable company in the salt water at the same time.
I hook up some occy straps to the tree that reach to the spa. I watch the steam rise up from the water into the cool morning air. I climb in, hook the straps to a belt around my waist and I kick. The resistance from the straps is just right. I can kick on my back and on my front. I can do breaststroke arms and backstroke arms with my feet hooked over the side.
We're only doing each day at a time in our family, and today is going to be alright.
Today is the day I have feared above everything else. It's my swimming day and the state wide lockdown has not only cut me off from the ocean but from the friends I swim with. The ones who truly understand why I swim all year round. All I can do is be thankful that I don't have chemo and no access to the invaluable company in the salt water at the same time.
I hook up some occy straps to the tree that reach to the spa. I watch the steam rise up from the water into the cool morning air. I climb in, hook the straps to a belt around my waist and I kick. The resistance from the straps is just right. I can kick on my back and on my front. I can do breaststroke arms and backstroke arms with my feet hooked over the side.
We're only doing each day at a time in our family, and today is going to be alright.
19th August 2021
A tear slides down over my nose and drops onto my pillow as I look at two photos a year apart. I can barely recognise the one on the left and can barely stomach the sight of the one on the right. I stare at both women. The longer I look at them the more I accept them and the more I like them. I start listing what I can see. Their strength, their bravery and their wisdom. Neither one has an appointment today at the cancer centre for chemotherapy. Both of them need to start radiation in less than three weeks. Today they'll find somewhere to swim despite being locked down in a local government area that is bordered by land. There are creeks, and Brooke has offered a container of SAXA salt.
A tear slides down over my nose and drops onto my pillow as I look at two photos a year apart. I can barely recognise the one on the left and can barely stomach the sight of the one on the right. I stare at both women. The longer I look at them the more I accept them and the more I like them. I start listing what I can see. Their strength, their bravery and their wisdom. Neither one has an appointment today at the cancer centre for chemotherapy. Both of them need to start radiation in less than three weeks. Today they'll find somewhere to swim despite being locked down in a local government area that is bordered by land. There are creeks, and Brooke has offered a container of SAXA salt.
20th August 2021
Erin and I walk into the nature reserve of shadowy rainforest. We must be the first ones in here for the day because I can feel the soft spider webs stretch and break as I pass through them. I wipe down my face with my hand and brush them all off. Once we've finished one lap, and all of the webs are gone, Erin picks up her pace and easily runs past me. Today we've decided on six laps which is on our way to our ultimate goal of ten in two weeks time. The last little bit of the loop has the most tiny rise. I have to cheer myself on to keep running and not slow down to a walk. I sound like a professional tennis player in my head "come on", I keep repeating. My calf muscles burn and I'm hit instantly with disappointment that I'm not in the ocean with the water supporting my weight. I try my best not to be overwhelmed with the knowledge that there is an indefinite time ahead of me without my swims, and without my swimming friends and I fear facing anymore up hills in my life anytime soon.
The other side of the loop has the tiniest of down hills. I regain my strength physically and mentally and keep on running. I'm hot and consider taking off my bandana. No one would see me hidden here under the canopy of the rainforest. I put it in my pocket and keep running. I can feel my baby like hair and the coolness of the morning on my scalp, I feel free rather than self conscious.
We make it. We do our six laps. There are high fives and I say "we're strong women Erin" and she agrees.
* * *
The water is a dark jade colour unlike the bright blue that I usually swim in. This is my third attempt. The other two tries earlier in the week ended up as tea bag dipping rather than swimming. Kristen is straight in, face and all, and freestyles away up the creek. It takes me longer. I'm wearing a wetsuit and booties, but when I put my bare hands in the water, acute pain stings my skin and seems to cut straight through to my bones. I immediately take them out. It's a control over pain that I haven't had during the past eight months of treatment. I can make this pain stop at any time by simply taking my hands out of the water. I put them in and out until they adjust. Today I'm going to swim.
I sink down further. The water seeps into my wetsuit as I push off the rocks on the bottom of the water hole. We paddle back and forth submerged in the water that we usually save for summer swims. My thermometer says that the water temperature is 8.6°.
Erin and I walk into the nature reserve of shadowy rainforest. We must be the first ones in here for the day because I can feel the soft spider webs stretch and break as I pass through them. I wipe down my face with my hand and brush them all off. Once we've finished one lap, and all of the webs are gone, Erin picks up her pace and easily runs past me. Today we've decided on six laps which is on our way to our ultimate goal of ten in two weeks time. The last little bit of the loop has the most tiny rise. I have to cheer myself on to keep running and not slow down to a walk. I sound like a professional tennis player in my head "come on", I keep repeating. My calf muscles burn and I'm hit instantly with disappointment that I'm not in the ocean with the water supporting my weight. I try my best not to be overwhelmed with the knowledge that there is an indefinite time ahead of me without my swims, and without my swimming friends and I fear facing anymore up hills in my life anytime soon.
The other side of the loop has the tiniest of down hills. I regain my strength physically and mentally and keep on running. I'm hot and consider taking off my bandana. No one would see me hidden here under the canopy of the rainforest. I put it in my pocket and keep running. I can feel my baby like hair and the coolness of the morning on my scalp, I feel free rather than self conscious.
We make it. We do our six laps. There are high fives and I say "we're strong women Erin" and she agrees.
* * *
The water is a dark jade colour unlike the bright blue that I usually swim in. This is my third attempt. The other two tries earlier in the week ended up as tea bag dipping rather than swimming. Kristen is straight in, face and all, and freestyles away up the creek. It takes me longer. I'm wearing a wetsuit and booties, but when I put my bare hands in the water, acute pain stings my skin and seems to cut straight through to my bones. I immediately take them out. It's a control over pain that I haven't had during the past eight months of treatment. I can make this pain stop at any time by simply taking my hands out of the water. I put them in and out until they adjust. Today I'm going to swim.
I sink down further. The water seeps into my wetsuit as I push off the rocks on the bottom of the water hole. We paddle back and forth submerged in the water that we usually save for summer swims. My thermometer says that the water temperature is 8.6°.
24th August 2021
I can hear the rain patting on the leaves and then dripping down onto the rainforest floor. The water has started to soak through my sneakers and my toes are wet. I miss the ocean. Jon has suggested that a $1000 fine for breaking the covid restrictions is probably worth it to be able to have a happier wife who has had a long swim.
The path through the reserve has flooded. I smile as I splash through it. The water soaks my socks and sprays up past my knees and all over my back. I imagine Peter and Brian encouraging me to keep running like they do on the beach. By the time I'm home the rain has soaked through to my skin on my arms and on my shoulders. It's the closest that I'm going to get to a swim today.
I don't want to go to the hospital for my radiation scan. I don't want treatment to be a part of my life anymore. I don't want to see the cancer centre, or walk past the chemo ward, or smell the disinfectant that they wipe everything down with. I look at Jon as my eyes start to fill. He says "You need to go so that it can all be over". I know I do. I push the sliding door open and pull it closed behind me then dash through the rain to my car.
The radiotherapy patients have a different car park. That slight change of location and routine makes me feel like I've made some sort of progress. I'm called in, we talk through the process ahead, and then I am asked to change into the white gown. She helpfully adds "opening at the back". The three calm and confident women make me feel at ease. They busily shape the cushion around me, draw texta marks all over me, and gently stick stickers on my chest. This is all done to the sound of an 80's and 90's playlist chosen for me because one of them says "it looks like that's what you'll like". They leave the room and the machine slides me back into what looks like a big plastic donut. None of these machines seem intimidating anymore, they've become familiar. As my head pokes out the other end, I'm left looking at the ceiling and right into a square air vent. It's been a long time, and a lot has happened since I stared at that very first air vent eight months ago. This scan today will be used to work out my dose of radiation.
It's time for my tattoos. The marks that they will use everyday to aim the lasers into the same place each time. I've anticipated this moment from the beginning. As the most unlikely person I know to ever consider a tattoo, I've wondered what this will be like.
It's a non event.
It doesn't hurt at all and that's likely to be because the marks that are left are smaller than a dot that you could make with a pen. I'm given a start date and a finish date for my radiation therapy, and warned that it could change if my treatment is delayed because of side effects. I know not to get too attached to that final date, but I can't help but stare at the 5th of October on my calendar.
I can hear the rain patting on the leaves and then dripping down onto the rainforest floor. The water has started to soak through my sneakers and my toes are wet. I miss the ocean. Jon has suggested that a $1000 fine for breaking the covid restrictions is probably worth it to be able to have a happier wife who has had a long swim.
The path through the reserve has flooded. I smile as I splash through it. The water soaks my socks and sprays up past my knees and all over my back. I imagine Peter and Brian encouraging me to keep running like they do on the beach. By the time I'm home the rain has soaked through to my skin on my arms and on my shoulders. It's the closest that I'm going to get to a swim today.
I don't want to go to the hospital for my radiation scan. I don't want treatment to be a part of my life anymore. I don't want to see the cancer centre, or walk past the chemo ward, or smell the disinfectant that they wipe everything down with. I look at Jon as my eyes start to fill. He says "You need to go so that it can all be over". I know I do. I push the sliding door open and pull it closed behind me then dash through the rain to my car.
The radiotherapy patients have a different car park. That slight change of location and routine makes me feel like I've made some sort of progress. I'm called in, we talk through the process ahead, and then I am asked to change into the white gown. She helpfully adds "opening at the back". The three calm and confident women make me feel at ease. They busily shape the cushion around me, draw texta marks all over me, and gently stick stickers on my chest. This is all done to the sound of an 80's and 90's playlist chosen for me because one of them says "it looks like that's what you'll like". They leave the room and the machine slides me back into what looks like a big plastic donut. None of these machines seem intimidating anymore, they've become familiar. As my head pokes out the other end, I'm left looking at the ceiling and right into a square air vent. It's been a long time, and a lot has happened since I stared at that very first air vent eight months ago. This scan today will be used to work out my dose of radiation.
It's time for my tattoos. The marks that they will use everyday to aim the lasers into the same place each time. I've anticipated this moment from the beginning. As the most unlikely person I know to ever consider a tattoo, I've wondered what this will be like.
It's a non event.
It doesn't hurt at all and that's likely to be because the marks that are left are smaller than a dot that you could make with a pen. I'm given a start date and a finish date for my radiation therapy, and warned that it could change if my treatment is delayed because of side effects. I know not to get too attached to that final date, but I can't help but stare at the 5th of October on my calendar.
26th August 2021
There is a point where I can see the ocean in the distance when I drive down the mountain for a swim. Today when I see the blue horizon, it creates a uncomfortable feeling in my chest knowing that I can't go there. Lockdown has been extended, we're off to the water hole at Nellies Glen.
Yesterday it was sleeting on and off all day. The glassy green and still water that reflected the over hanging trees has now turned into a bubbling cloudy brown. The waterfall has gone from a trickle, to a forceful pounding curtain after twenty four hours of rain. We both yell out as we dip into the water and the noise we make echos off the rock walls around us. It's cold. The twelve degree water temp that we enjoyed over the weekend has dropped back down to nine. I dip back and forth until my hands can't stand it any longer and then drive back home and get dry. I manage to warm up my core with a hot water bottle but my hands and feet struggle to recover.
The restrictions allow me to exercise with only one other at a time, but I have two friends in my local government area who will submerge themselves in these conditions today.
By the afternoon the greyness completely covers the sky and the air temperature has dropped. We head south rather than east. This particular swimming spot has been littered with fallen trees and broken branches from the storm. The creek has risen and I feel it's resistance as I swim against it's flow. Even though we're more than seven hundred metres above sea level, it instantly reminds me of the tides and the currents in the ocean.
Our breath steams over the top of the water and we lose track of time as we breaststroke back and forth up and down the creek. The cold forgotten.
My skin is red and purple when I strip off my wetsuit. I change while I'm still numb, before my senses become aware that I'm cold.
At home I snuggle down into the spa water. I lean my head back and feel my thickening hair. Today I forgot that I have ever been sick, and just for awhile, I forget about the treatment ahead.
There is a point where I can see the ocean in the distance when I drive down the mountain for a swim. Today when I see the blue horizon, it creates a uncomfortable feeling in my chest knowing that I can't go there. Lockdown has been extended, we're off to the water hole at Nellies Glen.
Yesterday it was sleeting on and off all day. The glassy green and still water that reflected the over hanging trees has now turned into a bubbling cloudy brown. The waterfall has gone from a trickle, to a forceful pounding curtain after twenty four hours of rain. We both yell out as we dip into the water and the noise we make echos off the rock walls around us. It's cold. The twelve degree water temp that we enjoyed over the weekend has dropped back down to nine. I dip back and forth until my hands can't stand it any longer and then drive back home and get dry. I manage to warm up my core with a hot water bottle but my hands and feet struggle to recover.
The restrictions allow me to exercise with only one other at a time, but I have two friends in my local government area who will submerge themselves in these conditions today.
By the afternoon the greyness completely covers the sky and the air temperature has dropped. We head south rather than east. This particular swimming spot has been littered with fallen trees and broken branches from the storm. The creek has risen and I feel it's resistance as I swim against it's flow. Even though we're more than seven hundred metres above sea level, it instantly reminds me of the tides and the currents in the ocean.
Our breath steams over the top of the water and we lose track of time as we breaststroke back and forth up and down the creek. The cold forgotten.
My skin is red and purple when I strip off my wetsuit. I change while I'm still numb, before my senses become aware that I'm cold.
At home I snuggle down into the spa water. I lean my head back and feel my thickening hair. Today I forgot that I have ever been sick, and just for awhile, I forget about the treatment ahead.
31st August 2021
I wish it was the end of my metaphorical winter rather than the literal one. I'm in no hurry for the weather to get warmer. My hair is growing back in ugly patches. I'll still be wearing something on my head long after the temperature gets hot and uncomfortable.
I have one more week before I start radiation and it feels like I need to squeeze every possible activity in before treatment. Days are full of walks, bike rides and swims as well as the highs and lows of online learning during a pandemic. I see the frustration, but I also watch our children connecting with each other for company, and hope that this time in lockdown brings more benefits than anything else.
The creek water is breath taking as my shoulders slip under it. It feels almost sharp when it leaks in through the zip of my wetsuit and touches my skin. It's later in the afternoon than usual which brings different colours to the sky, the rocks and the leaves. The smell of the damp Australian bush is familiar and comforting.
When we get out, I can't get my cold fingers to work. I can't take my swimming cap off and slip my bandana on in one smooth movement. Once I can get my hands to peel off my cap, I'm left standing with my head exposed. Instead of being repulsed, my friend seems proud of me for the hair that I have grown.
Usually on the last day of winter I'd feel some sense of achievement with my swimming group. Success that we'd completed another full four seasons of swimming in the open water together. I miss them especially today.
I wish it was the end of my metaphorical winter rather than the literal one. I'm in no hurry for the weather to get warmer. My hair is growing back in ugly patches. I'll still be wearing something on my head long after the temperature gets hot and uncomfortable.
I have one more week before I start radiation and it feels like I need to squeeze every possible activity in before treatment. Days are full of walks, bike rides and swims as well as the highs and lows of online learning during a pandemic. I see the frustration, but I also watch our children connecting with each other for company, and hope that this time in lockdown brings more benefits than anything else.
The creek water is breath taking as my shoulders slip under it. It feels almost sharp when it leaks in through the zip of my wetsuit and touches my skin. It's later in the afternoon than usual which brings different colours to the sky, the rocks and the leaves. The smell of the damp Australian bush is familiar and comforting.
When we get out, I can't get my cold fingers to work. I can't take my swimming cap off and slip my bandana on in one smooth movement. Once I can get my hands to peel off my cap, I'm left standing with my head exposed. Instead of being repulsed, my friend seems proud of me for the hair that I have grown.
Usually on the last day of winter I'd feel some sense of achievement with my swimming group. Success that we'd completed another full four seasons of swimming in the open water together. I miss them especially today.
7th September 2021
When I wake up, the anticipation anxiety about a months worth of radiation has eased. I'm ready to start the twenty doses that will be given every week day. I'm allowed to leave our local government area for treatment. I'm not sure about the rules about a swim in the salt water on the way to the hospital.
If I did break the restriction rules and go to the river, it would be right on high tide this morning. I'd get to stretch out in the open water and taste the salt as I turn my head and open my mouth to breath. I'd see my friends and not be able to take the smile off my face. I'd slow right down at the end of my swim, taking in every moment, then flip onto my back and float while I breath deeply. It would provide the comfort that it always does, and I would feel like I'd never been away from it.
The radiation therapist introduces herself and takes me into the treatment room. It's almost like I'm about to play lazer tag. The room is dim and there are purple beams of light shooting all over the ceiling and the walls. I catch a glimpse of two pictures of myself high up on a screen to my left. There's one that was taken before I had had any treatment. It's my identification photo. I'm sitting and smiling at the camera. The second one was taken when I had my scan a few weeks ago. I'm lying down with bare shoulders and my arms are above my head. I'm in the position that I'll need to be lying in today. They look like two very different women. I look away as quickly as I can. I don't feel like I am in either photo.
The second radiation therapist comes in and introduces himself. They both get to work positioning my body exactly where it needs to be using my tattoos, measurements, and the picture of me. I'm exposed from the waist up as they work. They draw on me with texta and move me around gently. They check every angle. When they're happy that I'm ready, she covers up my left side "for privacy". This makes my belly wobble with laughter. I've been told and told again that I am not allowed to move, I try as hard as I can to suppress it. Privacy from whom? Both of them have just seen everything there is to see. At this stage of my treatment I realise that I have lost any self consciousness about having a bare chest in front of professionals. I'm grateful for her thoughtfulness towards me though. She kindly squeezes my leg to comfort any final nerves and they both leave the room.
The bed moves up and I wonder if I could imagine that I'm on an amusement ride. The big machines move around me. They start by taking xrays and then deliver the first dose of radiation. Nothing touches my skin, I don't feel anything, I only hear the whirling and beeping of the machines. It's all over in minutes. I will have twenty sessions in total. I can foresee that this will quickly become a familiar daily routine.
My breastcare nurse is waiting for me in the corridor. We chat for awhile and then I tell her that I don't want to feel unwell again. She gets her hand and zooms it along like it's a plane then dips it saying, "you'll only go down this far, not as far down as you were before". It makes my heart instantly sink. I don't want to dip at all.
At home Liam asks if I want to join him in the spa. It's been where I have spent hours and hours of my time during the last six months. Now I'm not allowed in it until my radiation has finished. My feet can paddle though. I join him and we enjoy the last light of the day together.
When I wake up, the anticipation anxiety about a months worth of radiation has eased. I'm ready to start the twenty doses that will be given every week day. I'm allowed to leave our local government area for treatment. I'm not sure about the rules about a swim in the salt water on the way to the hospital.
If I did break the restriction rules and go to the river, it would be right on high tide this morning. I'd get to stretch out in the open water and taste the salt as I turn my head and open my mouth to breath. I'd see my friends and not be able to take the smile off my face. I'd slow right down at the end of my swim, taking in every moment, then flip onto my back and float while I breath deeply. It would provide the comfort that it always does, and I would feel like I'd never been away from it.
The radiation therapist introduces herself and takes me into the treatment room. It's almost like I'm about to play lazer tag. The room is dim and there are purple beams of light shooting all over the ceiling and the walls. I catch a glimpse of two pictures of myself high up on a screen to my left. There's one that was taken before I had had any treatment. It's my identification photo. I'm sitting and smiling at the camera. The second one was taken when I had my scan a few weeks ago. I'm lying down with bare shoulders and my arms are above my head. I'm in the position that I'll need to be lying in today. They look like two very different women. I look away as quickly as I can. I don't feel like I am in either photo.
The second radiation therapist comes in and introduces himself. They both get to work positioning my body exactly where it needs to be using my tattoos, measurements, and the picture of me. I'm exposed from the waist up as they work. They draw on me with texta and move me around gently. They check every angle. When they're happy that I'm ready, she covers up my left side "for privacy". This makes my belly wobble with laughter. I've been told and told again that I am not allowed to move, I try as hard as I can to suppress it. Privacy from whom? Both of them have just seen everything there is to see. At this stage of my treatment I realise that I have lost any self consciousness about having a bare chest in front of professionals. I'm grateful for her thoughtfulness towards me though. She kindly squeezes my leg to comfort any final nerves and they both leave the room.
The bed moves up and I wonder if I could imagine that I'm on an amusement ride. The big machines move around me. They start by taking xrays and then deliver the first dose of radiation. Nothing touches my skin, I don't feel anything, I only hear the whirling and beeping of the machines. It's all over in minutes. I will have twenty sessions in total. I can foresee that this will quickly become a familiar daily routine.
My breastcare nurse is waiting for me in the corridor. We chat for awhile and then I tell her that I don't want to feel unwell again. She gets her hand and zooms it along like it's a plane then dips it saying, "you'll only go down this far, not as far down as you were before". It makes my heart instantly sink. I don't want to dip at all.
At home Liam asks if I want to join him in the spa. It's been where I have spent hours and hours of my time during the last six months. Now I'm not allowed in it until my radiation has finished. My feet can paddle though. I join him and we enjoy the last light of the day together.
9th September 2021
I hate walking past the chemo ward. The smell of it wafts out the door. I don't know if my physical reaction to walking past those doors will ever go away.
There's no waiting today. I'm straight in. The radiation therapist asks if the test patch of clear film has irritated my skin. I tell him that I'd forgotten it was there and that I've had no problems at all. He looks at it. "Are you sure it's not itchy or stinging?" "No, it's fine" I reply. "Ahhh, it doesn't look good. It's gone all red and blotchy. We'll try another test patch but maybe you'll need to use creams instead" he says. I ask if it could've been caused by salt water or sand. He assures me that it couldn't.
They quickly line me up with the machine and leave me to stare up at the ceiling panels. They're pictures of trees with the sun shining through them. I lie still. I hear the buzz of the radiation being delivered. They return to the room and I'm free to go. The ten minute appointment takes forty five minutes of driving each way. An hour an a half every day. I feel fortunate to have the outing.
I hate walking past the chemo ward. The smell of it wafts out the door. I don't know if my physical reaction to walking past those doors will ever go away.
There's no waiting today. I'm straight in. The radiation therapist asks if the test patch of clear film has irritated my skin. I tell him that I'd forgotten it was there and that I've had no problems at all. He looks at it. "Are you sure it's not itchy or stinging?" "No, it's fine" I reply. "Ahhh, it doesn't look good. It's gone all red and blotchy. We'll try another test patch but maybe you'll need to use creams instead" he says. I ask if it could've been caused by salt water or sand. He assures me that it couldn't.
They quickly line me up with the machine and leave me to stare up at the ceiling panels. They're pictures of trees with the sun shining through them. I lie still. I hear the buzz of the radiation being delivered. They return to the room and I'm free to go. The ten minute appointment takes forty five minutes of driving each way. An hour an a half every day. I feel fortunate to have the outing.
11th September 2021
It feels like someone has punched me hard in the boob. I walk around with my arm across my chest trying to protect it from any accidental bump. But the weekend weather is too good to waste, and I feel like I have a limited time before my discomfort gets worse over the next few weeks.
We set up the tent and light the fire. We lay back looking up, and watch the starts turn from a few, into tens, then hundreds, then thousands. Erin has her head on my shoulder and keeps saying "I love you mum". In January, on that very first day, both of us were faced with my mortality. We both assumed a different outcome. Nine months later I'm preparing for life rather than death. My survival from breast cancer will be counted after five years of it not returning, but I feel like it counts already.
Tucked into our sleeping bags after our crossword is done and the torch is off, she tells me she is scared of the noises. So we list them. The wind on the tent, the frogs, the owl, and the creek. There is nothing to be afraid of tonight.
It feels like someone has punched me hard in the boob. I walk around with my arm across my chest trying to protect it from any accidental bump. But the weekend weather is too good to waste, and I feel like I have a limited time before my discomfort gets worse over the next few weeks.
We set up the tent and light the fire. We lay back looking up, and watch the starts turn from a few, into tens, then hundreds, then thousands. Erin has her head on my shoulder and keeps saying "I love you mum". In January, on that very first day, both of us were faced with my mortality. We both assumed a different outcome. Nine months later I'm preparing for life rather than death. My survival from breast cancer will be counted after five years of it not returning, but I feel like it counts already.
Tucked into our sleeping bags after our crossword is done and the torch is off, she tells me she is scared of the noises. So we list them. The wind on the tent, the frogs, the owl, and the creek. There is nothing to be afraid of tonight.
13th September 2021
After five trips to the radiation room I realise that when the therapist covers up my non treatment side, it's actually not pointless at all. The times that they stop and pull the gown up over me, I feel respected. I feel like I have dignity. I feel like I'm not just my patient number being pushed through the system.
I watch the machine while it's moved remotely around me. It stops when it's in the right spot. There are some kind of metal rods inside that meet each other in the middle. Some stay together, others move different distances apart. I wonder if the shape they end up making is where my individualised dose of radiation comes through. I don't know how it works. I'm just guessing as I watch the rods move up and down.
When they come back into the room, I know I'm free to move my arms down from above my head and back into my gown.
And just like that I'm one quarter of the way through.
After five trips to the radiation room I realise that when the therapist covers up my non treatment side, it's actually not pointless at all. The times that they stop and pull the gown up over me, I feel respected. I feel like I have dignity. I feel like I'm not just my patient number being pushed through the system.
I watch the machine while it's moved remotely around me. It stops when it's in the right spot. There are some kind of metal rods inside that meet each other in the middle. Some stay together, others move different distances apart. I wonder if the shape they end up making is where my individualised dose of radiation comes through. I don't know how it works. I'm just guessing as I watch the rods move up and down.
When they come back into the room, I know I'm free to move my arms down from above my head and back into my gown.
And just like that I'm one quarter of the way through.
15th September 2021
I try hard not to react negatively inside. The radiation machine isn't working. They've called me to say don't come. My dose for the day will be added onto the end. It's only one more day, but I can't help but be disappointed. The person on the other end of the phone sounds flippant about it. I don't think she realises just how long this year has been, or how much I want my treatment to be finished. She has kindly rang me so that I avoid the drive for no reason.
But, if there was one day for this to have to happen, today is the perfect day. It's Callum's birthday. I don't know what it's like to turn 14 during a pandemic. I don't know what it's like for your mum to have had cancer. But I hope it ends up to be a time in his life that he draws strength from.
I love his company. I'm appreciative of his respect and consideration of others. I love his enthusiasm for the things he enjoys.
Today is a good day.
I try hard not to react negatively inside. The radiation machine isn't working. They've called me to say don't come. My dose for the day will be added onto the end. It's only one more day, but I can't help but be disappointed. The person on the other end of the phone sounds flippant about it. I don't think she realises just how long this year has been, or how much I want my treatment to be finished. She has kindly rang me so that I avoid the drive for no reason.
But, if there was one day for this to have to happen, today is the perfect day. It's Callum's birthday. I don't know what it's like to turn 14 during a pandemic. I don't know what it's like for your mum to have had cancer. But I hope it ends up to be a time in his life that he draws strength from.
I love his company. I'm appreciative of his respect and consideration of others. I love his enthusiasm for the things he enjoys.
Today is a good day.
20th September 2021
My calf muscles burn as I go up the two flights of stairs. I'm always breathless when I get to the top. There must be a lift somewhere because I see the orderly take people away from their appointments in wheelchairs. I don't need the lift though. Yesterday I helped Jon and Liam dig a hole. Digging a hole is difficult whether you're in the middle of radiation therapy or not. I've had nine out of twenty doses and I'm feeling okay.
I scan my card and get changed. I like my radiation appointments. I like the staff. I like how I'm greeted. I like how they treat me. When they move my big flubbery body to line up with the machine, they never make me feel too heavy. They make adjustments easily. They work smoothly together and create a comfortable place. The atmosphere is completely different on this floor, and it doesn't smell bad. Instead of being desperate for this to end. I think I'll miss them when this is all over.
My calf muscles burn as I go up the two flights of stairs. I'm always breathless when I get to the top. There must be a lift somewhere because I see the orderly take people away from their appointments in wheelchairs. I don't need the lift though. Yesterday I helped Jon and Liam dig a hole. Digging a hole is difficult whether you're in the middle of radiation therapy or not. I've had nine out of twenty doses and I'm feeling okay.
I scan my card and get changed. I like my radiation appointments. I like the staff. I like how I'm greeted. I like how they treat me. When they move my big flubbery body to line up with the machine, they never make me feel too heavy. They make adjustments easily. They work smoothly together and create a comfortable place. The atmosphere is completely different on this floor, and it doesn't smell bad. Instead of being desperate for this to end. I think I'll miss them when this is all over.
21st September 2021
7am
It's a sunny day. I try on four pairs of shorts but none of them go around me. When I realise it's only 3°, I switch to pants and forget about it. I sneak into the garage and put our abseiling gear into a bag, trying not to make the hardware clang together. If the kids hear me I'm sure they'll yell out "we're not going abseiling this arvo mum". I may have worn out their enthusiasm over the past few years, but I need this. I need to know that I'm still in here somewhere.
9:30am
I barely feel the needle go in. It's quick and it's painless. I'm now double vaccinated. I feel good. I feel like it's a job ticked off the list, and I feel like I've contributed to the bigger picture.
11:20am
I smile as I enter the radiation room. I wish that I was having this treatment without everyone in masks. I don't know if they realised that I smiled. I don't really even know what their faces look like. They make it as fun as it can be. The music is up louder today and they're singing along to Elton John's Tiny Dancer. I'm halfway through. I have ten doses left.
1pm
I don't want to have to wrestle the kids to the car, so I still don't tell them about my abseiling plans. When they see the gear there are groans. It's probably been a whole year. My harness only just fits, but the knots are easily tied. Two out of three confidently slide down the rope. The drop isn't high enough for the third to be bothered.
Harnesses are quickly discarded for hot chocolate and marshmallows around a fire, followed by two and a half hours playing with rocks and sticks in the creek. All afternoon screens are forgotten, and so is the last year of my life.
7am
It's a sunny day. I try on four pairs of shorts but none of them go around me. When I realise it's only 3°, I switch to pants and forget about it. I sneak into the garage and put our abseiling gear into a bag, trying not to make the hardware clang together. If the kids hear me I'm sure they'll yell out "we're not going abseiling this arvo mum". I may have worn out their enthusiasm over the past few years, but I need this. I need to know that I'm still in here somewhere.
9:30am
I barely feel the needle go in. It's quick and it's painless. I'm now double vaccinated. I feel good. I feel like it's a job ticked off the list, and I feel like I've contributed to the bigger picture.
11:20am
I smile as I enter the radiation room. I wish that I was having this treatment without everyone in masks. I don't know if they realised that I smiled. I don't really even know what their faces look like. They make it as fun as it can be. The music is up louder today and they're singing along to Elton John's Tiny Dancer. I'm halfway through. I have ten doses left.
1pm
I don't want to have to wrestle the kids to the car, so I still don't tell them about my abseiling plans. When they see the gear there are groans. It's probably been a whole year. My harness only just fits, but the knots are easily tied. Two out of three confidently slide down the rope. The drop isn't high enough for the third to be bothered.
Harnesses are quickly discarded for hot chocolate and marshmallows around a fire, followed by two and a half hours playing with rocks and sticks in the creek. All afternoon screens are forgotten, and so is the last year of my life.
23rd September 2021
I feel like the right hand side of my chest might sizzle like a hot frying pan going into cold water. But there's no hissing or bubbles when I submerge myself in the cold creek. Just numbing relief.
My skin has discoloured. I can't run, bouncing is not an option. Bumps while driving in the car hurt me. I wake in the night to apply cool cream. They say that the radiation side effects are at their worst weeks after your final dose. When does that mean it's all over? Is it when my phone recognises my face again. Is it when my hair has grown enough not to wear a bandana. Or when I fit into my clothes. Is it when I get my self-confidence back, or when I can stand to look at myself in the mirror.
I stop myself and think back to the salt water that has filled the river. There's no tidal assistance swimming north or south. Just smooth flat still water. I can swim lazily. Gently. I can do it for kilometres. I'm at home here. If I get asked in which local government area do I reside. Do they mean where I sleep or where I actually live.
I peel my swimming cap off and feel the warm water on my skin as I pour it over my head and it runs down my body and onto the grass. I've already passed big milestones. I begin to accept that there will be no big wide ribbon to run through. There will be no wall to touch. In time it will all just slowly fade away until it's not the main focus of my thoughts anymore. It's already started to happen.
I feel like the right hand side of my chest might sizzle like a hot frying pan going into cold water. But there's no hissing or bubbles when I submerge myself in the cold creek. Just numbing relief.
My skin has discoloured. I can't run, bouncing is not an option. Bumps while driving in the car hurt me. I wake in the night to apply cool cream. They say that the radiation side effects are at their worst weeks after your final dose. When does that mean it's all over? Is it when my phone recognises my face again. Is it when my hair has grown enough not to wear a bandana. Or when I fit into my clothes. Is it when I get my self-confidence back, or when I can stand to look at myself in the mirror.
I stop myself and think back to the salt water that has filled the river. There's no tidal assistance swimming north or south. Just smooth flat still water. I can swim lazily. Gently. I can do it for kilometres. I'm at home here. If I get asked in which local government area do I reside. Do they mean where I sleep or where I actually live.
I peel my swimming cap off and feel the warm water on my skin as I pour it over my head and it runs down my body and onto the grass. I've already passed big milestones. I begin to accept that there will be no big wide ribbon to run through. There will be no wall to touch. In time it will all just slowly fade away until it's not the main focus of my thoughts anymore. It's already started to happen.
24th September 2021
My skin burns as I drive home after my Friday dose of radiation. I have things to do when I get there, but I can feel that I am running out of energy. The fatigue is creeping towards me. I can't outrun it. My eyelids feel weighted. I've tried to squeeze as many things in as I could before this happens. It catches up to me as I make it into bed. I can't stay upright for one more minute. I can't fight it. I can't move. My whole body is now weighted down heavily. I sleep. I sleep all afternoon and then all night. I'm hoping it has not settled in.
My skin burns as I drive home after my Friday dose of radiation. I have things to do when I get there, but I can feel that I am running out of energy. The fatigue is creeping towards me. I can't outrun it. My eyelids feel weighted. I've tried to squeeze as many things in as I could before this happens. It catches up to me as I make it into bed. I can't stay upright for one more minute. I can't fight it. I can't move. My whole body is now weighted down heavily. I sleep. I sleep all afternoon and then all night. I'm hoping it has not settled in.
27th September 2021
I wake up comfy and warm and try to go back to sleep for as long as possible until Erin climbs in for a morning cuddle. "Mum! You've got eyelashes" she says excitedly. Her tone of voice changes and she adds, "but they look bad". When I get up I look closely into the mirror, she's right. I do have little stubbly eyelashes growing, and she's correct, they do look bad. It looks like they've been singed by fire.
I'm tired and I'm teary. As I sit and wait for my turn for radiation I feel heavy as though something is pushing down on my head and pulling my limbs to the floor. A patient walks out and thanks the staff as she goes past the administration desk for her last time. Nothing special happens. She doesn't even stop walking. And then she's gone. All of a sudden I just feel like one of many that come in and out of these doors.
I'm called in.
Instead of the ugly picture of myself on the screen, there are pictures of abseilers. It turns out that I am one of many that come in and out of these doors, but all of us who come in and out are treated individually. The care that I receive in here is thoughtful, and I'm grateful that it's always more than just my right breast that is considered. I lie down and feel the tears roll down the side of my face and hope they don't drip into my specially made pillow. There is no big reason for them, they've been building up and are just due to come out. The radiation therapist spends her time making sure that I'm okay. I think that if we hadn't all been wearing masks during my treatment, and we passed in the street in six months time, all of the therapists from this room would acknowledge me with a smile or a wave.
I return to the safe place of my friend's car. I can cry here. I can talk or be silent. Anything is okay. She drives me back up the mountain so that I don't have to concentrate, she's also cooked my dinner. When I get home, I'm not as tired. I don't feel weighed down. I feel like I can get through the next week and a bit.
I wake up comfy and warm and try to go back to sleep for as long as possible until Erin climbs in for a morning cuddle. "Mum! You've got eyelashes" she says excitedly. Her tone of voice changes and she adds, "but they look bad". When I get up I look closely into the mirror, she's right. I do have little stubbly eyelashes growing, and she's correct, they do look bad. It looks like they've been singed by fire.
I'm tired and I'm teary. As I sit and wait for my turn for radiation I feel heavy as though something is pushing down on my head and pulling my limbs to the floor. A patient walks out and thanks the staff as she goes past the administration desk for her last time. Nothing special happens. She doesn't even stop walking. And then she's gone. All of a sudden I just feel like one of many that come in and out of these doors.
I'm called in.
Instead of the ugly picture of myself on the screen, there are pictures of abseilers. It turns out that I am one of many that come in and out of these doors, but all of us who come in and out are treated individually. The care that I receive in here is thoughtful, and I'm grateful that it's always more than just my right breast that is considered. I lie down and feel the tears roll down the side of my face and hope they don't drip into my specially made pillow. There is no big reason for them, they've been building up and are just due to come out. The radiation therapist spends her time making sure that I'm okay. I think that if we hadn't all been wearing masks during my treatment, and we passed in the street in six months time, all of the therapists from this room would acknowledge me with a smile or a wave.
I return to the safe place of my friend's car. I can cry here. I can talk or be silent. Anything is okay. She drives me back up the mountain so that I don't have to concentrate, she's also cooked my dinner. When I get home, I'm not as tired. I don't feel weighed down. I feel like I can get through the next week and a bit.
29th September 2021
I sit down in front of the fish tank in the waiting room again. With a flick of their tails the fish effortlessly move around in the water. Their lives look comfortable and uncomplicated.
I can see my reflection in the glass. If I was ever brave enough to be somewhere with my patchy regrowth showing, it would be here. I'm sure it would cause no discomfort to anyone in the cancer centre.
Yesterday I was sitting here wearing my plaits. They made me feel like I looked almost normal. This morning I took them out and washed them. It's a bizarre feeling. Handling something as familiar as my own hair alongside the strangeness of it not being attached to my head. There is still a little blue streak in one side from when I let Erin dye it before we cut it off. I wish I had a way of telling others that are about to go through chemo that occasionally having the option to put my own hair back on has helped. Today I've decided to leave them as piggy tails.
Fortunately the reflection that I see in the glass isn't as clear as a mirror. As normal as I feel with my hair on, I know that I have half an eyebrow growing back. Normal, whatever that is, is still a long way away.
I sit down in front of the fish tank in the waiting room again. With a flick of their tails the fish effortlessly move around in the water. Their lives look comfortable and uncomplicated.
I can see my reflection in the glass. If I was ever brave enough to be somewhere with my patchy regrowth showing, it would be here. I'm sure it would cause no discomfort to anyone in the cancer centre.
Yesterday I was sitting here wearing my plaits. They made me feel like I looked almost normal. This morning I took them out and washed them. It's a bizarre feeling. Handling something as familiar as my own hair alongside the strangeness of it not being attached to my head. There is still a little blue streak in one side from when I let Erin dye it before we cut it off. I wish I had a way of telling others that are about to go through chemo that occasionally having the option to put my own hair back on has helped. Today I've decided to leave them as piggy tails.
Fortunately the reflection that I see in the glass isn't as clear as a mirror. As normal as I feel with my hair on, I know that I have half an eyebrow growing back. Normal, whatever that is, is still a long way away.
30th September 2021
"Good morning mummy, I love you so much. You're the best person in the whole world"
It's what I get to hear nearly every morning. If only that kind of feeling continued for her half an hour later when I'm asking her to get dressed and brush her teeth.
"Mummy, you shouldn't wear your hair. It's dishonest. You shouldn't go around pretending when it's not real." "It's my real hair Erin" I reply. "But it's not attached mum. It's weird." I ask the boys what they think. I get two shrugs and they don't look up from their screens. I put a bandana on instead.
I manage to squeeze in a tiny swim. When I leave the water I feel better. I can breath easily. My skin feels fresh. My head has space. The fatigue lifts.
I can hear the buzz of the radiation machine from the waiting area. It's delivering it's dose to the person before me. I wonder how many people do this every day. They ask me if I have champagne for next week when I finish. I say "no, but I might go crazy and buy myself a bottle of Sprite".
"Good morning mummy, I love you so much. You're the best person in the whole world"
It's what I get to hear nearly every morning. If only that kind of feeling continued for her half an hour later when I'm asking her to get dressed and brush her teeth.
"Mummy, you shouldn't wear your hair. It's dishonest. You shouldn't go around pretending when it's not real." "It's my real hair Erin" I reply. "But it's not attached mum. It's weird." I ask the boys what they think. I get two shrugs and they don't look up from their screens. I put a bandana on instead.
I manage to squeeze in a tiny swim. When I leave the water I feel better. I can breath easily. My skin feels fresh. My head has space. The fatigue lifts.
I can hear the buzz of the radiation machine from the waiting area. It's delivering it's dose to the person before me. I wonder how many people do this every day. They ask me if I have champagne for next week when I finish. I say "no, but I might go crazy and buy myself a bottle of Sprite".
1st October 2021
Happy birthday mum xo
It's another night of watching every hour pass by on the clock. Sweat beads under my eyes. I can feel it coming out of every pore. My body is still trying to cope with the effects of chemotherapy making changes to my system.
Jon reads out what I can expect after the treatment that I've had. Various side effects from chemo and radiation are likely to last for two and a half years. I raise my patchy eyebrows at him. I can understand that physically and emotionally things won't always go smoothly after this.
I flick the gown up into the air and slip my arms into it as it comes down. It's a party trick that no one will ever see. I impress myself with my skills. I enter the room, lay down, get lined up, and then during my radiation, the staff put pictures of the Minnamurra river up the screens. My smiley face can barely stay still under my mask. I want my cancer treatment to be finished, but I don't want to leave this team of people.
The oncology waiting room is almost empty. Most consultations are via phone because of covid, but I was in the building anyway. I wait for an hour and then hormone suppressant medication is explained to me. The type of cancer that I had is fed by hormones. I'll try monthly injections for five to ten years or have my ovaries removed, or maybe both. I'll also start tablets with varying side effects.
It's a lot of information. It makes me feel like this will never end. My car drives me to the river. I have no say in it. I realise that my swimming tub is at home. Fortunately I have five pairs of swimmers, four pairs of goggles, three towels and three swimming caps in the back of my car for emergencies just like this. There is also a spare wetsuit but I won't need it today.
A little girl stands on the edge with her Grandfather and says "Why is she going for a swim Pop? Can I go for one?" I turn and wave to her and hope that she finds something in life that does for her what swimming does for me.
And then I'm alone swimming up the river and I quickly accept what is ahead. I'm convinced that it will be in the background. Cancer treatment won't disappear next week, but I'm determined that my life will continue to be full. Not without sadness or pain or discomfort, just like everyone else. I'll just aim to have slightly more adventures than I ever thought I could plan.
I sit on the bank and watch the sky as it starts to grumble as a storm front rolls in. I feel a droplet splash onto my foot. I know that rain stops and storms pass.
Happy birthday mum xo
It's another night of watching every hour pass by on the clock. Sweat beads under my eyes. I can feel it coming out of every pore. My body is still trying to cope with the effects of chemotherapy making changes to my system.
Jon reads out what I can expect after the treatment that I've had. Various side effects from chemo and radiation are likely to last for two and a half years. I raise my patchy eyebrows at him. I can understand that physically and emotionally things won't always go smoothly after this.
I flick the gown up into the air and slip my arms into it as it comes down. It's a party trick that no one will ever see. I impress myself with my skills. I enter the room, lay down, get lined up, and then during my radiation, the staff put pictures of the Minnamurra river up the screens. My smiley face can barely stay still under my mask. I want my cancer treatment to be finished, but I don't want to leave this team of people.
The oncology waiting room is almost empty. Most consultations are via phone because of covid, but I was in the building anyway. I wait for an hour and then hormone suppressant medication is explained to me. The type of cancer that I had is fed by hormones. I'll try monthly injections for five to ten years or have my ovaries removed, or maybe both. I'll also start tablets with varying side effects.
It's a lot of information. It makes me feel like this will never end. My car drives me to the river. I have no say in it. I realise that my swimming tub is at home. Fortunately I have five pairs of swimmers, four pairs of goggles, three towels and three swimming caps in the back of my car for emergencies just like this. There is also a spare wetsuit but I won't need it today.
A little girl stands on the edge with her Grandfather and says "Why is she going for a swim Pop? Can I go for one?" I turn and wave to her and hope that she finds something in life that does for her what swimming does for me.
And then I'm alone swimming up the river and I quickly accept what is ahead. I'm convinced that it will be in the background. Cancer treatment won't disappear next week, but I'm determined that my life will continue to be full. Not without sadness or pain or discomfort, just like everyone else. I'll just aim to have slightly more adventures than I ever thought I could plan.
I sit on the bank and watch the sky as it starts to grumble as a storm front rolls in. I feel a droplet splash onto my foot. I know that rain stops and storms pass.
5th October 2021
I remember my seven digit car park code without looking at my card, the routine of radiation therapy has filled my life for the past four weeks. I sit in the waiting area near the fish tank. My arms are still covered in goose bumps from my extra long swim a couple of hours ago. Even Peter said "The water is not warm this morning".
The urgency to finish my treatment has changed to fearing what it will be like to not have cancer treatment. I want this to be over, but I am leaving what has become normal. I worry about little cancer cells returning and growing once I'm away from the care of the cancer centre. I'm terrified of having my appointment postponed tomorrow, but also fear walking out of those doors. I don't know how I'll feel when I drive out of the boom gate. My code won't work after my final dose. I also need to lose the expectation of waking up with a ponytail and feeling 100% the very next day.
I remember going to bed 274 nights ago in our caravan assuming that I'd be told that I had breast cancer the next day. Tonight I'm going to bed knowing and trusting that the treatment has worked, and that I don't have cancer anymore.
I remember my seven digit car park code without looking at my card, the routine of radiation therapy has filled my life for the past four weeks. I sit in the waiting area near the fish tank. My arms are still covered in goose bumps from my extra long swim a couple of hours ago. Even Peter said "The water is not warm this morning".
The urgency to finish my treatment has changed to fearing what it will be like to not have cancer treatment. I want this to be over, but I am leaving what has become normal. I worry about little cancer cells returning and growing once I'm away from the care of the cancer centre. I'm terrified of having my appointment postponed tomorrow, but also fear walking out of those doors. I don't know how I'll feel when I drive out of the boom gate. My code won't work after my final dose. I also need to lose the expectation of waking up with a ponytail and feeling 100% the very next day.
I remember going to bed 274 nights ago in our caravan assuming that I'd be told that I had breast cancer the next day. Tonight I'm going to bed knowing and trusting that the treatment has worked, and that I don't have cancer anymore.
6th October 2021
In the Nowra Cancer Centre you get to ring a bell when you finish your treatment. In Wollongong you need to make your own fun. I ask the radiation therapist to play 'This is me' during my last treatment (it came down to that or 'Roar' by Katy Perry). They congratulate me as I leave the room and ask me if I'll keep writing. I don't know the answer.
I toss my gown into the hospital linen bin in the corridor like I have nineteen other times. Today it makes my chest tighten with fear, my stomach flip with excitement and my eyes well with emotion. I walk down the two flights of stairs, into the foyer, and the automatic doors let me out into the fresh air. I don't look back. The tears continue all of the way down the freeway. They're tears of relief and they don't stop until I'm submerged under the cold salt water. I let the tide drag me out through the river mouth and into the ocean. I have to dodge the rocks to get back in to the sand. As I walk up the beach I cry again acknowledging the trauma of the past nine months and in panic of not knowing what is next in life. I'm the only one on the big stretch of sand. The tears settle down on their own before I reach the rocks. I put my foot on a rock. I smile at our swimming group's rules that you're not finished until you touch the rocks. I'm finished. I'm finished this lap of the beach and I'm finished this part of my life. I turn and walk ovee to the river, the familiar place that has kept everything bearable, and I swim.
I'm glad that I wrote. If I hadn't have written, it would have been like shoving Tupperware into a cupboard and closing the door knowing that it would all fall out at some stage, probably at the most inappropriate time.
I feel like I've stacked everything neatly. The lids are all on their containers. I'm closing the door knowing that when I open it again it'll be ready for me to sort through at a time when I choose.
I didn't put my posts on Facebook, or ask you to sign up to a mailing list. You took time aside to come here and read this. By reading along, you've supported me this entire time. You haven't had to ask me how I am, because you already knew. Thank you for being here with me. Because of you, not once did I feel like I was alone.
In the Nowra Cancer Centre you get to ring a bell when you finish your treatment. In Wollongong you need to make your own fun. I ask the radiation therapist to play 'This is me' during my last treatment (it came down to that or 'Roar' by Katy Perry). They congratulate me as I leave the room and ask me if I'll keep writing. I don't know the answer.
I toss my gown into the hospital linen bin in the corridor like I have nineteen other times. Today it makes my chest tighten with fear, my stomach flip with excitement and my eyes well with emotion. I walk down the two flights of stairs, into the foyer, and the automatic doors let me out into the fresh air. I don't look back. The tears continue all of the way down the freeway. They're tears of relief and they don't stop until I'm submerged under the cold salt water. I let the tide drag me out through the river mouth and into the ocean. I have to dodge the rocks to get back in to the sand. As I walk up the beach I cry again acknowledging the trauma of the past nine months and in panic of not knowing what is next in life. I'm the only one on the big stretch of sand. The tears settle down on their own before I reach the rocks. I put my foot on a rock. I smile at our swimming group's rules that you're not finished until you touch the rocks. I'm finished. I'm finished this lap of the beach and I'm finished this part of my life. I turn and walk ovee to the river, the familiar place that has kept everything bearable, and I swim.
I'm glad that I wrote. If I hadn't have written, it would have been like shoving Tupperware into a cupboard and closing the door knowing that it would all fall out at some stage, probably at the most inappropriate time.
I feel like I've stacked everything neatly. The lids are all on their containers. I'm closing the door knowing that when I open it again it'll be ready for me to sort through at a time when I choose.
I didn't put my posts on Facebook, or ask you to sign up to a mailing list. You took time aside to come here and read this. By reading along, you've supported me this entire time. You haven't had to ask me how I am, because you already knew. Thank you for being here with me. Because of you, not once did I feel like I was alone.
