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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 ashphelt 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 immediatley 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.
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 ashphelt 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 immediatley 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.
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.
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.
7th June 2021
A head cold combined with chemo doesn't bring out my happy face.
The pain is continous. 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.
A head cold combined with chemo doesn't bring out my happy face.
The pain is continous. 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.
3rd June 2021
The principal opens the car door to welcome the kids to school for the morning, their faces beam. Last week when he opened the door, 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. I read today that it works like morphine.
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, their faces beam. Last week when he opened the door, 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. I read today that it works like morphine.
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.
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'.
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.
29th May 2021
"Mum. It's that train."
"What train?."
"The V42. The one that you caught back from Lithgow."
It's the breast cancer train. My chest tightens. It's haunting just to look at it. It seems like a long time ago since I was on that train taking the phone call from the doctor and finding out that my lump was malignant. It's been five months. I had no idea what was ahead of me. I still don't. But I've made it this far.
"Mum. It's that train."
"What train?."
"The V42. The one that you caught back from Lithgow."
It's the breast cancer train. My chest tightens. It's haunting just to look at it. It seems like a long time ago since I was on that train taking the phone call from the doctor and finding out that my lump was malignant. It's been five months. I had no idea what was ahead of me. I still don't. But I've made it this far.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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. This is what is happening to me. 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. This is what is happening to me. I breathe out. I don't have to start from the begining. I'll sleep better tonight.
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.
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.
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.
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.
30th April 2021
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.
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.
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.
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.
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.
* 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.
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.
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.
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.
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.
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.
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.
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.
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.
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 lonley 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 lonley one like the day before. I'm comfortable. I'm happy. I'm well.
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.
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.
A sure constant is change.
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.
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.
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.
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.
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.
