On 19th June 2018 I was diagnosed with a very rare and aggressive cancer. It had already spread to my lungs. I was 24.
To my surprise, two years later I am immensely thankful to be alive and able to write these words. I hadn’t expected to see Christmas 2018.
The year following my diagnosis, I had chemotherapy, radiotherapy and surgery. I lost my hair, eyebrows and eyelashes. My back erupted in a wave of pustules following radiotherapy. I had a muscle in my left shoulder removed.
Racing in Egypt’s first half Ironman-distance triathlon, six weeks after finishing chemotherapy. Photo credit: Trifactory
I have been very lucky to live to see my hair grow back, and once again my face is framed by eyebrows, my skin is smooth and I can swim. Though I still prefer my running shoes and bike to the pool.
However, I am not a cancer survivor. Or at the very least, I do not consider myself to be one. I choose the word “CanLiver” – someone living with cancer.
Let me explain.
When I was told I had cancer, every expectation and hope I had for my life disintegrated. My life, which had up to that point more or less gone to plan, crumbled, revealing the facade which had always been just that – a facade of stability and logical progression.
I began reading online about my form of cancer, trying to find straws of hope at which I could clutch.
It was at this time I came across the term cancer survivor. The term seemed to bestow some certainty of having “beaten” or successfully “fought” in the “battle” against cancer.
It seemed as though it applied to those who had been diagnosed with cancer and… were still alive. As far as I could tell, as soon as you were diagnosed with cancer, you became a cancer survivor, regardless of what happened next.
The more research I did, the more I found examples of people identifying as cancer survivors, but only temporarily, before they passed away.
The tragedy of this term and another nefarious one, being “cancer free”, became apparent to me when I watched Imagine Dragon’s Demons video on YouTube. The video ends with a shot from the mosh pit of one of their concerts, and every person is shouting “Tyler, Tyler, Tyler”. I identified with the young man in the centre of the frame, a young man without hair, headbanging and shouting the lyrics.
I found his website and his story. He had been diagnosed with stage IV rhabdomyosarcoma at 16, and had it treated, and had been pronounced “cancer free”. He was one of the successful ones, in my mind he was a true cancer survivor, or so it seemed.
His story continued below. “Tyler’s cancer unexpectedly returned just after writing his story and he passed only a few months later”.
I was devastated. Devastated for Tyler, and also for myself, because at this point I could think little beyond my own survival.
The hope that Tyler’s story had appeared to offer – a dream of being “cancer free” and being able to move beyond cancer, that is, of being a cancer survivor, dissolved as I reached out for it.
That was the moment I decided the term cancer survivor (along with the term “cancer free”) was one I could never identify with. I would never be in a position where I had “beaten” cancer and could move on with my life, carefree. Some people might term my cancer “incurable”. I don’t. I think of it as life-threatening and I am going to do my best to die of something else instead. Afterall, we all die of something that turns out to be incurable. Life is a terminal condition.
Further, I – and many others with cancer – find a lot of the words used around cancer very unhelpful: the “struggle”, “battle”, “fight”, “winning” and “losing”. No one says “she lost to her heart attack” or “he lost the fight against his diabetes”. It implies that the “winners” somehow “fought” harder than the weaker “losers”. This is nonsense. Some people are lucky, and others are not. How hard you “fight” has little relevance. I’m by no means the first to say this, and indeed, The Guardian has highlighted this before here, here and here.
Though at this point, I should say – if these words help you or a loved one deal with the challenge of cancer, then do what works for you. However, I have found it does not work for me. Instead, this is how I, as a 26 year old in remission for an unknowable period of time, think about myself:
I am a CanLiver.
A CanLiver is someone living with cancer: facing the uncertainties and challenges of cancer on a daily basis, yet acknowledging we can live with cancer – richly and fully.
As someone with cancer, there is no end point, when I am “out the other side”, or “in the clear”. Instead, I have to deal with the uncertainty of not knowing if I’ll see my next birthday and having to reconcile myself that I probably won’t see my 30th birthday. I don’t know if I start a job, if I will have to quit a few months or years later for more treatment. I don’t know if my next scan result will come back with bad news and turn my life upside down once more.
There are challenges. The challenges of dealing with the sickness and fatigue of chemotherapy. The challenge of being out in public with a shiny head and no eyebrows, avoiding eye contact and backing out of conversations that venture into personal details. There are challenges to your relationships, friendships, your very identity. And these don’t go away, magically, if you haven’t died after a year, or if you call yourself a “cancer survivor”. But being a CanLiver acknowledges the existence of these challenges.
On the other hand, it is so important to recognise we can live, even with a cancer diagnosis. When I was told I had cancer, it felt like my life was already over. It took me a little while to realise, that for as long as I was alive, I could choose whether I tried to make the most of my time. Rather than giving up on life, which had been my initial reaction, I came to recognise that the life I had ahead of me, even if it was only a few months, was even more precious than I had previously thought.
I could do little to control whether I was around in three months – if the chemotherapy didn’t work, I would be a goner – but what I could control was how I lived those three months.
Although they were filled with challenges, I tried to use the time in the most fulfilling and enjoyable way I could – spending time with friends, travelling with my girlfriend, going to concerts and shows, and exercising as much as I could, which I knew would keep me happy.
As a CanLiver, I aimed to proactively create my own opportunities so I could live as rich and fulfilling a life as possible.
Halfway through my treatment I did the Bristol Half Marathon. Six weeks after finishing my chemotherapy, and three days before surgery on my shoulder, after which I was told I wouldn’t be able to swim, I competed in Egypt’s first half Ironman-distance triathlon. I came second. And despite having initially discarded the idea as impossible, I started, and completed, a Master’s degree at the University of Oxford.
I say these as examples of things I did, not because I had “beaten” cancer, and could resume normal life, but because these are things I did whilst living with cancer, having to deal with scans, cannula replacements and struggling with my own identity – both outwardly and inwardly. Despite this, I still did what I could – in my own way – to live my life as fully as possible.
On 1st January 2020, I set off from Bristol, UK, to Beijing, on a tandem with other CanLivers, together rewriting what’s possible with a cancer diagnosis. Bristol2Beijing has been an uplifting and immensely positive experience. However, the now seemingly-inevitable happened, and another “c-word” interfered: covid-19.
Cycling through the Netherlands with CanLiver Kate Price.
Photo credit: Kaine Horsey [of nifty50 films]
I had to pause the expedition and return to the UK. I knew I wouldn’t get the time back, so I have aimed to make the most of it, setting up a podcast, Facing Up , which explores how different people have faced up to challenges in their lives.
Covid-19 has touched all of our lives and enabled all of us to glimpse a little of the uncertainty that CanLivers – and others with conditions that command less attention – experience on a daily basis.
Covid-19 has brought home to us all that even in countries with world-class healthcare, not everyone can be cured and certainty of the future was, and will always be, an illusion.
Covid-19 has shown the difficulties of living with uncertainty, but also the importance of living to the full despite the limitations – as we will not get the time back – just like CanLivers have to.
June is cancer survivor month in the USA. For those for whom this is a helpful term, keep doing what works for you. But, if like me you feel that cancer survivor does not adequately sum up your own situation, then perhaps you may find CanLiver a better alternative. Because we can live life with cancer, even with the continuing daily uncertainties it brings. Despite the challenges we are all facing, we can live a rich and fulfilling life.