This is a blogpost I wrote recently for one of our partner charities, 5KYourWay, which is also posted on their website.
My name is Luke. I was very fortunate to have a secure, stable childhood in Bristol: I went to a good school, occasionally worked hard, travelled north to university and was ready to launch myself onto the career ladder.
But in 2018 everything changed. At the age of 24 I was diagnosed with a very rare and aggressive cancer (sarcoma). It took me a long time to realise something was wrong, but I was surprised and devastated when my consultant told me it was metastatic – the primary tumour beneath my left shoulder blade had spread to my lungs. Already there were 13 cancerous nodules. Over the next eight months I had chemotherapy, surgery and radiotherapy.
I wasn’t expecting to be alive at 26, and I simply don’t know if I’ll be here at 28.
The prognosis I received was pretty pessimistic. This was crushing. Devastating for 24 year old to hear that all his plans: of a career, a wife, a family, reunions with friends for decades to come – were to be shredded by life’s randomness. But I made a very conscious effort to decide, that even if my chances were slim, I was going to do everything I reasonably could to give myself the best possible opportunity of getting through this. Or at least as far as I could. That way, at least I could go knowing that I had given it my best shot.
First – a word on terminology. I dislike a lot of the discourse associated with cancer: the “fights” and “battles” and “struggles” and “winning” and “losing”. It sounds absurd to say someone “lost” to a heart attack. It’s equally ridiculous to use with cancer. My least favourite term is “cancer survivor”. To me, it suggests a sense of victory, of security, that you have “beaten” cancer, moved beyond it, that it is no longer a factor, a challenge, a worry in your life. But for so many, that is an illusion. The reality of having cancer is that the challenges and uncertainties each individual – and their family and friends – faces will never end. It only takes one bad scan result for your world to be turned upside down again. I have to face this every three months, as do so many others. Applying the term “cancer survivor” to myself feels risible.
I have coined a different term: CanLiver. A CanLiver is someone living with cancer. This accepts the realities of the situation: each CanLiver has to face challenges (treatment, side effects of treatment, loss of fitness and confidence, difficulties with friendships and relationships; this list could be a long one) and uncertainties (again, a long one: how long do I have? Should I quit my work? Will I see my children play in the local league?). And yet. We Can Live with cancer. We Can Live an amazing life despite these challenges.It is my firm belief that we can still live a rich and fulfilling life, even in the face of a challenge such as cancer. It’s about making or taking opportunities and living fully each day.
Right now I want to tell you about the thing that I did which I feel helped me most of all during my treatment. Exercise. Physical Activity.
Exercise is quite possibly the most powerful drug that we know. It supercharges us in so many ways: physically and mentally; internally and externally. If it could be turned into a tablet, it would make the effervescence of Viagra look limp.
Pre diagnosis and pre treatment in Siberia.
There is an increasing amount of research into the effect of exercise on cancer treatment. The more research done, the more compelling evidence we are compiling that exercise has a plethora of benefits for those undergoing cancer treatment, for those who are about to have treatment, those who have gone through treatment, and those yet to receive a cancer diagnosis.
Chemotherapy efficacy can be enhanced; our bodies are better able to deal with the treatment; we are in a better mental state; we have increased life satisfaction; we recover from treatment better. If you’re interested to read more check out this article for starters. From my perspective, doing exercise before, during, and after cancer, treatment has benefits on three key areas: physical; mental; and identity.
Whilst studies and research are vital, they lack an identity, a face.
What I want to share with you today is a story. Mine.
The day I received my diagnosis, 19th June 2018, I remember asking my consultant and specialist nurse: “so what can I do to help myself, put myself in the best position? Should I be exercising, watching my diet?”. The answer came “no, just do what you want, it’s not that important” – or words to that effect. I couldn’t believe it. I knew how great the impact of exercise was already, in ways small (any of my friends will tell you I’m in a better mood after a run) and big (giving me balance, satisfaction and direction in my life). I chose to ignore their answer.
Looking back, I’m immensely glad I did ignore their response, but now I recognise such a response could be very unhelpful for other patients. Medical advice is changing, but slowly. It is up to us to push back and unblinker medical guidelines.
That afternoon, still feeling my stomach was somewhere near my feet, reeling and dazed and sickened from the news I had received, I wanted nothing better than to hide from the world and distract myself in a book, Shantaram. My Dad, luckily, had other ideas. He knew I would feel better for a run and persuaded me to get up and head out.
First parkrun after first chemo cycle
We ran across Bristol’s Downs, a huge beautiful park, which overlooks the Avon gorge. I had run up here thousands of times through my teenage years. Today, it looked the same, but I felt totally different. My left arm ached, unable to swing freely next to my ribs; I had a lump the size of a tennis ball beneath my left armpit. I slowly began to feel slightly better. We ran over to the Clifton Suspension Bridge. Overlooking it, with the sun shining down, my Dad gave me some advice I will never forget: “Luke, look, the fact that you might die in a few months – that’s just horrible. But there’s little you, or I, can do about this. But what you have control over, is how you live today, and tomorrow, and each passing day.” If you only had a few weeks or months to live, wouldn’t you want to make the most of each precious day, rather than squander your final moments of life?
The attitude I aspired towards from that day was to make the most of the time I had, and to doing everything I could, that I had control over, to give myself the best possible chance of living as long as possible. For me, that meant, above all, on focussing on exercise and my diet – putting my body in the best position to cope with chemo.
I’m not saying it was at all easy. It wasn’t. There were days when I didn’t get out for exercise, days when I ate things I regretted afterwards. There were few days when I actually felt I had lived them truly “to the full”. But it was my attitude to try to live to the full that mattered most. We are all human, so unlike robots we cannot simply follow rules and repeat. But we can dream, aspire, and see a future that we can make reality, that we can live.
The following is my journey. Yours will be different. You must decide what works for you.
I cycled the three miles into the Bristol Haematology and Oncology Centre for my first round of chemo – 4 days in hospital. Four days later, I cycled back home. I took my stationary bike trainer into the ward with me, and my Dad hooked my bike up to it. Most days in hospital and always with a drip in my arm, I would pull myself onto the saddle and push my lethargic and sickly legs round for fifteen, twenty minutes. Not hard, not for long, but this was a statement to myself that I could still take control of my situation in a small way, that I could do something small, but positive to help myself.
On the turbo whilst on chemo
It also helped me define myself as not just a patient. It can be incredibly dehabilitating to be prodded, poked, measured, appraised, told what to do, how to spend so many moments of each day. But it is enormously empowering to break loose from that – and to assert, I am not just a patient, I am a human being, I am cycling. I am Luke.
Out of every 24 hours I was in hospital, I would have 4 hours when I was disconnected from my drip. Each day, I would go outside of the ward, beyond the hospital, and wander around the waterfront of Bristol’s centre. I was fortunate to be able to do this, though it still wasn’t easy. I’m not sure how much better I felt at the time. The fresh air I was certainly glad of, escaping from the tang of disinfectant which pervades every hospital and gives me flashbacks whenever I smell it. But the activity itself – I was half-shuffling, half-walking, forcing my body into motion, knowing I would feel better for it afterwards, and that I would be keeping my body stronger, healthier in doing so. Though I didn’t feel strong or healthy at the time. I was very grateful to my Mum, Dad, Amée, Zak, who joined me on these walks. I said little, but their company and tacit support helped me continue and validate this activity.
Each chemo cycle started every third week. I know it’s different for different cancers and chemo regimes, but this was mine. I tended to have a week pretty knocked from the chemo: four days in hospital and then another three recovering, mostly in bed or half-dozing on the sofa, book flopped in my lap. But each day, I would walk for an hour – slowly, not far, but I was outside and using my body. Maintaining my muscles more than I would have done otherwise; keeping my cardio health better than it would have been. I also slept better. Although it mostly felt like a slog, I knew it would help me do more later. Again, I was grateful to Mum and Dad who accompanied me and gently suggested it might be time to head out each day.
The point to take away from this is not that you should do an hour’s walk each day. Everyone’s starting fitness is different and treatment regimes vary massively. The point is to do what physical activity you are able, however little, in the knowledge it is going to help you and your body get through treatment better. And to remember it is probably more than you, your family or your consultant might think. Yes, be sensible. But the worst thing you can do is lie down all day, if you are capable of more. Just think what state your body would be in if you lay in bed for a whole week, when you are in decent shape. It’s not a good result, it doesn’t help your body, letting it atrophy. And it’s even more important, when going through chemo or radiotherapy.
On one hand, physical activity keeps your body stronger: preserving muscle mass; keeping your heart working well, keeping your body better able to withstand the poisons of chemo and fatigue-inducing radiotherapy. My consultant eventually conceded he thought my exercise was helping me deal with some nasty chemicals, and I was coping a lot better than most patients. My physical health, which I maintained through running and cycling between chemo cycle, helped a huge amount.
In the two weeks where I was feeling fairly normal – though bald, losing eyebrows and lashes and developing a round, swollen face – I would be out running and cycling every day, doing my best to keep my body strong and active in this period.
I wanted a goal for my exercise. The Bristol Half Marathon was coming up in a few months at the end of September. It wouldn’t be a case of getting fitter for it, but trying to maintain the fitness I had as best as I could.
The importance of a goal can’t be overstated – it gives you a focus beyond your treatment, something to look up to. It helps others around you focus on that goal too – it can be the focus of conversations, not the understandable, but terrible question “how are you?”. If it’s a physical goal that will help your body, but it doesn’t have to be.
Two-thirds of the way through my chemotherapy, on 21st September, I lined up on the start line of the Bristol Half Marathon. I wore a cap, to hide my baldness, which I was quite self-conscious about, and kept my gaze down, avoiding eye contact with others. It was drizzling. I was apprehensive. I didn’t really know if I could get round.
Once I started, it sort of felt like any other running race I had entered; just I was running slower. 1 hour 20 minutes later I crossed the finish line. I had come 91st out of 10,000 participants. I was a bit surprised, but to be honest, I didn’t focus on this much – it was nice to have run that well and satisfying to defy everyone’s expectations (including my own), but later that day I still had to head into hospital for bloods and the next day I started my next round of chemo. I had a job to do.
After the Bristol Half Marathon with good friend Zak
Training over that summer helped my mental state enormously. The power of endorphins to lift your mood beats any antidepressant. The most difficult thing – always, and to this day – for me is getting out the door. I try to never underestimate this challenge, or take it for granted. Despite it sometimes being really difficult, despite sometimes not managing, I have never, ever, regretted going out of exercise.
It gave me a lift just to think I was helping myself to deal with my treatment, the chemicals. I was helping myself and it was me who benefitted.
It was the first time I got into parkruns. I had done one or two before, but soon Ashton Court’s parkruns became a Saturday fixture for us. They are utterly fantastic: a welcoming, supportive community, made even more so by 5KYW. It is a 5K that can be walked, jogged, run, with friends, family, dogs, strangers, or solo. It is inclusive physical activity at its very best.
I got through my chemo, ending in October 2018. I have no doubt that I would have not been able to get through it so well, even see it through to completion, without keeping active. My body was in a much better state than it would have been otherwise. And exercise had helped me never to lose my identity as Luke, and keep me grounded throughout. If you are going through something similar to what I went through, I have one overarching message: stop reading, turn off your digital device and get active.
Six weeks after finishing chemo in Egypt’s first half Ironman-distance triathlon