It’s been a while since I’ve written because I knew what was coming and I’m not sure that I’ve got the courage for it.
It’s time to talk about her but it’s difficult. I look at photos of her and it still makes me weep. It breaks my heart to see her, to remember her. The ubiquitous cancer patient; bald, no eyebrows, puffy skin, eyes dulled by toxicity. I didn’t take many photos of her. She was ugly. Grotesque physically. And depression, despair and fear for her life had extinguished any spark of joy that made her her. She was me for a little time.
But this is a story of recovery and hope and I have to bow my head to that poor woman as she passes, for how can there be recovery and hope if there hasn’t been illness and despair? And while it felt like forever, it was a mere moment in a lifetime.
November 2018: My diagnosis led to a flurry of insanity. Told that chemo would start imminently, shock gave way to the urgency of action. I raced to use my health and adrenaline to set myself up for a year of incapacitation and illness.
Somewhere in the madness, I remembered that my passport needed to be renewed, and with my hair due to fall out shortly, I took a passport photo. It was a week after my first chemo and my top was zipped up high to hide the stitches holding my new chemo port in place.
I was disappointed with the photo. In spite of the photographer telling me how lovely it was, all I could see was my imperfect hair, slight double chin and mussed eyebrows. I now look back on this photo and think how beautiful and “healthy” I was.
December 2018: I was told that “hair loss was inevitable” and had a buzz cut shortly after the passport photo. Defying the inevitable, my hair grew back voraciously, and by the time I had my second chemo, the spikiness of newly shorn hair had softened. Dazed and foggy, I was confused when I found fur on my couch a mere three days after my second chemo. Was it my friend’s dog? I lay my head back on the cushion and when I next raised it, realised, it’s started. The hysteria that was becoming all too common resurfaced as I called hairdressers who were all closed on Mondays. BUT I NEED MY HEAD SHAVED NOW! I found a barber with availability that afternoon and spent the day getting more anxious as every time I touched my head I lost more hair. It was like a wobbly tooth that I couldn’t stop worrying.
I had my head skun with a cutthroat razor and went home to see if I recognised myself. In the last weeks I had lost weight from near constant diarrhoea, a side effect of chemo, and between that and my shorn skull, my eyes dominated my face, somehow still clear in spite of the toxicity and stress that was addling my brain. I didn’t mind this new me; bald, stark, defiant and somehow still standing despite the onslaught. Maybe I was a warrior after all…but by god I was so tired and scared all the time the image didn’t seem to fit the feeling.
February 2019: Two months crept past before I thought to take another photo. My parents had arrived but the excitement of their arrival had faded. I had finished four rounds of EC and had done five rounds of Taxol and I felt every drop of my treatment. Bombarded by infection after infection, I had ended up on antibiotics for most of the previous two months, I ached and was undone by fatigue. I had lost all hair from my head and was puffy and sore. The fatigue, potato cravings and inability to move well were taking a toll on my body already damaged by chemotherapy and infections.
March 2019: Three weeks after finishing chemotherapy I was feeling stronger each day. Relatively.
April 2019: I don’t know who she is. I don’t recognise her. But I sob every time I see her. April was one of my lowest points. I had finished chemotherapy five weeks earlier and actually started feeling stronger. There was hope. Then I had my unilateral mastectomy and was floored. My chemo weakened body and fragile mind couldn’t handle it. To feel the hope and then to be smashed down again was one of the cruelest things to happen to me.
I didn’t recognise myself and I found my body truly ugly. Bald, completely hairless; eyelashes, eyebrows that defined my face gone. Nostrils bleeding, skin aching, bloated and overweight. A 20 centimetre wound where my right breast had been.
I was suffering severe depression and couldn’t look at this stranger in the mirror without tears.
I had been told that surgery had been successful and I was NED (no evidence of disease) but I couldn’t believe it. I was so bruised and battered and broken and couldn’t see any hope or joy in life.
May 2019: And then it went ping. Two weeks after losing my last eyebrow hair it all started coming back in a rush. A thin head of hair came into full coverage and my eyebrows were pure caterpillars. Every single hair on my body started growing back at the same time and I found long hairs all over the place. My chest was still extremely sensitive from surgery, somehow numb but excruciating at the same time. I rarely wore a top at home.
As chemo continued to leave my body, some strength returned. I took to physical exertion with a touch of fanaticism, starting each day with exercises and stretching, determined to open up my scarred chest and rebuild strength, to avoid lymphedema and cording. I walked vast distances covered in sunscreen, a floppy hat and large, loose, soft shirts. I wanted to be as strong as I could before radiotherapy and I started feeling hope again.
June 2019: I started radiotherapy in June. A friend described it as relentless but in the early stages I was just happy to have some routine and be progressing with my treatment.
I had well and truly given up wearing tops unless I was doing my daily walks or heading to treatment, my chest hurt at the lightest touch and I was constantly covered in cream in an obsessive attempt to avoid radiation burns.
July 2019: All of a sudden active treatment was over. I was left more tanned and sensitive than I was five weeks earlier but I was done.
The fatigue had worn me to a nub but I was still pushing myself to do my morning exercises and daily walks.
End of active treatment found me discovering a new type of depression. After persevering through treatment, I found myself with the time to realise what had happened. Fatigue caught up with me and I spent a lot of time crying and sleeping.
August 2019: August was difficult in a different way. Active treatment had ended, my hair had grown back and I was asked more often when I was going back to work because everyone thought it was all over now, a question that left me twitching. I had just started hormone therapy and was jolted into early menopause. I had gained 12 kilograms since diagnosis and was incredibly concerned about my health because of my weight gain and the long term side effects of treatment that I was only beginning to understand. I had no idea how I was supposed to reintegrate into society, how I could be effective at work again with chemo brain and how I could rebuild my physical and emotional health.
I had put so much hope into a rehabilitation program and when that failed me it was a turning point, despair at another disappointment led to a realisation that I would have to work out how to heal myself if I couldn’t depend on the system. I created a plan that included physical training, mental stimulation and psychological support and followed it with zest.
September 2019: Every day I was getting physically stronger but I was still tapping obesity, I was eating well and moving more but unable to take it to the level that would improve my physical health, this failure impacted my body image and self-worth.
I started seeing a new therapist who was helping me come to terms with who I had become through this ordeal and assess what was important to me now and what I want my life to look like going forward.
I was lonely as hell. I wasn’t seeing old friends and I hadn’t made new ones. I was finding it hard to talk to people because small talk inevitably involved work and I felt false talking about a job I hadn’t been in for a year, but it was awkward to mention illness.
I felt like I was in a holding pattern, another holding pattern, as I was waiting for October in Turkey at a health resort, followed by a swim holiday. Again I had high hopes for recovery from this.
November 2019: A year since my cancer diagnosis slipped by with barely a murmur. I had spent a month in Turkey and a week at another health resort in Portugal and my physical improvement was radical. Eating well and exercising enthusiastically was paying off. I felt fantastic, had lost a lot of weight, was sleeping better and feeling way more positive. I was proud of myself.
When I was diagnosed, people kept talking about an awful year of treatment, but no one ever really said what life would be like after. If I would recover physically and emotionally. How long this would take. Who I would be after. There were references to a “new normal” and through treatment and my depths of despair, I couldn’t imagine any kind of normal, of recovery or of hope.
But I guess there must have been kernels of hope there, my determination and bloody mindedness dormant but not dead. I had sat by the frog pond weeping and realising that I didn’t want to survive and then not live. I remembered what I already knew, that I know what I need to recover and I was lucky enough to be able to do that.
There are still steps to go, returning to work will be a big one, and there’s more to do to get back to a healthy, sustainable weight and manage the side effects of hormone therapy and the other treatment. But that year is over and now it’s time to start the rest of my life. Each day I feel more like myself. I laugh and I am hopeful.
Distance swum since last post: 6.5km
Distance swum to date: 42.3km
Distance to go: 157.7km