Surviving cancer: It doesn’t end when treatment stops
In 2018 former Stuff journalist Helen King was diagnosed with breast cancer, at 37. She invited the Sunday Star-Times to follow her experience during treatment. Two years later she is cancer-free but, she writes, the hard work started when her oncologist
There’s a scene at the end of the 1989 movie Heathers where Winona Ryder’s character appears through a curtain of smoke from a bomb blast; her hair in disarray, cigarette hanging out of her mouth and soot smudges on her face. When I describe what it feels like to finish cancer treatment this is the imagery I describe, except for the cigarette.
I didn’t celebrate when 18 months of cancer treatment finished, in October 2019. People expect you to. You have ‘beaten’’ the beast of cancer, after all. For me, it didn’t feel like something to celebrate. I was too tired, too raw, too sad. And guilty I didn’t feel more grateful. Of course there is relief it’s finally done with, no more appointments with oncologists, fortnightly blood tests or scans to make sure the treatment saving your life isn’t damaging other parts of your body.
‘‘You’re cured though right?’’ people often ask.
Technically yes. Based on the statistics I have a 75 per cent chance of still being alive in 15 years. I assume the mastectomy, chemo, radiation and Herceptin wiped my body clean of cancer cells but there is no way of being 100 per cent certain. I tell people ‘‘you just have to live like it has gone and hope it doesn’t come back’’.
Cancer doesn’t stop when your treatment ends. The hard work starts when you are signed off from your oncologist and told to ‘‘go and live your life’’. For the first few months after chemo and radiation ended I couldn’t make plans. I felt altered, the world seemed very different to me. I was petrified the cancer would come back and couldn’t trust things would be OK. Every new pain, headache, cough would spark fear of the cancer returning. I walked through the first year in a daze, I desperately wanted to be normal. I wanted to go back to work, do all the things I was doing before I got cancer but all of that seemed out of reach.
A gentle hum of sadness followed me around for a long time after treatment finished. A whisper in my ear told me I should be more inspiring, I should be more positive, I should stop being so negative or the cancer might come back, I should go vegan, I should have less stress in my life.
Your hair grows back, you
stop looking so ‘‘cancery’’ and there’s an expectation that you’ve been fixed. But when I look in the mirror I hardly recognise myself. My breast is gone, my hair grew back a dull mousy grey, the removal of my breast changed my body shape. I feel like Helen has been erased. I’m bigger, have less energy, feel overwhelmed and struggle to make sense of what has happened.
Breast cancer forced me to face my mortality. For a long time I wasn’t able to shake the feeling death was nipping at my heels, stalking me in my dreams. It took months after treatment ended for me to stop waking up in a panic thinking, ‘‘F... I’ve got cancer!’’
I was lucky to work with a therapist who helped me recognise the signs of posttraumatic stress I had developed after going through treatment. These symptoms have lessened over time until I approach my yearly mammogram and scanxiety creeps in.
I reached the two-year post diagnosis milestone this year. I sat in the same office with the same radiologist who diagnosed my breast cancer in 2018, looking at images of my remaining breast. The relief of hearing ‘‘everything looks fine’’ is enormous.
In the month I had my last infusion of Herceptin, I signed up to a cancer retreat. It was not something I would usually do but it was in Auckland and I had reached a point where I was desperately lonely and trying to figure out how to get on with my life. I met a woman who, like me,
had recently been through breast cancer treatment.
She was older, had a stylish grey pixie hair cut and healthy glow. She was strangely happy. I found her utterly intriguing. How does a person go through the trauma of cancer and come out the other side optimistic? She said she had seen cancer as the chance to reinvent herself – she could be whoever she wanted to be and had changed everything. Her words stuck with me. I did not become optimistic overnight but an idea started to germinate.
Covid gave me the nudge I needed to do something that would help me start making sense of my cancer. When the country went into lockdown I joked that everyone had an insight into what it’s like being on chemo – having to avoid germs or getting sick at all costs.
While the rest of New Zealand made its way through the country’s flour supplies, I had an idea of creating something that
gave people a platform to tell their cancer stories. Not the sanitised version, the messy one – the version people don’t usually hear.
When you give yourself and others space to tell their authentic, uncensored story you stop letting cancer take any more than it already has.
I started my media career in radio and it’s where my heart has always been. I launched my podcast The C Word: Kiwis Talk About Cancer with the help of others in July. Talking with Kiwis from all walks of life about cancer has helped me normalise my own experience. It is cathartic laughing about some of the truly awful things chemo does to your body and connecting over a shared experience.
Recently I interviewed comedian David Downs about his experience of going from being told he had six months to live to being completely cured of cancer. David is a relentlessly optimistic person. He describes resilience as the ability to feel the hard emotions, acknowledge a situation is tough and come out the other side with a sense of humour.
I would add it’s also the ability to maintain hope. Cancer has helped me focus on what’s important, disregard the rest and relish the things I love. It’s taught me to do things now because if my cancer does come back I don’t want to look back and regret not taking leaps of faith.
When I look in the mirror I hardly recognise myself. My breast is gone, my hair grew back a dull mousy grey, the removal of my breast changed my body shape. I feel like Helen has been erased.