Leiomyosarcoma - Running, Swimming
Heard of a robust evidence-based reason for not doing some form of exercise, within your own capabilities, despite chronic illness? And yet hospital management won’t allow claims that physical exercise can help improve outcomes for cancer patients. I’m Emily. 42, wife, mum, runner, swimmer, scientific communications specialist, joke-lover and unwilling cultivar of a hardcore 4-year relationship with stage 4 cancer (leiomyosarcoma).
Pre-diagnosis, I was never a lycra bunny – just didn’t have the commitment, but always liked to stay reasonably fit – 2 small children, a busy job and a border collie mean you can’t stand still for long. At diagnosis in 2014 when I was given 3 months to live, I had a desperate need to foster some level of control over what was happening. After extensive abdominal surgery, and spending a few months learning to shut drawers/chop carrots/walk again I got back into the routine of regular exercise. Following a miraculous ‘all-clear’ I was back at work a year later and training for a half marathon. The disease metastasized to my liver in 2016, and during the interminable 3 months on 24-hour standby for surgery, and thanks to amazing super-fit friends, I was physically in the best shape of my life.
Post-surgery I was back running before the scan in early 2017 that showed the cancer had spread to my bones – including my lower spine, prognosis less than a year. Clinical trials/chemo/targeted therapy/radiotherapy/ablation surgery have formed the pattern of the last 2 years as I have slowly worked my way through the oncology guidelines, but I’m still here – and despite weekly anti-cancer therapy and a recent microwave ablation on the liver tumours that are growing like mushrooms – I don’t look ill. Partly this has to be luck, what some would term a positive attitude (and I would call denial), partly the newer treatments, partly my amazing friends and family but I believe it’s also about exercise – running/swimming/walking are the way that I deal psychologically with a terminal diagnosis – one which I flatly refuse to believe.
For 19-months now, my weekly hospital visit has involved a 5-hour round-trip commute for treatment, 3 hours of treatment/appointments and 6 hours of waiting. Chemo patients should be employed by The Ivy, they become such professional wait-ers – and we rationalise it and resign ourselves. A couple of months into my first round of chemo, I started to become an impatient patient. I discovered Santander bikes so I could cycle from train to treatment and found a gym local to the hospital, where I could swim. The effect was that treatment days ended with me knowing I had swum a mile, as opposed to ‘I’ve drunk 8 hot drinks, spent a fortune on sandwiches, been bored and frustrated, ritually poisoned for 2 hours and then stumbled off stoned to fight with London commuters all the way home’. It felt great. Then the chemo leaked into my right arm, I had to have a PICC fitted – no more swimming. The sports centre wouldn’t let me use the gym as I wasn’t a local, so I wrote to the management and the hospital. It’s taken a fair while, but we now have a scheme for Royal Marsden patients (and their plus one if they have one), to receive an off-peak leisure card for the Chelsea Sports Centre, giving subsidised gym and swimming pool access. It isn’t for everyone, but it’s a start to my personal project of ‘getting the waiting room moving’ - a questionnaire showed a lot of interest, but I need to translate that into action. My initial aims were to communicate the benefits of exercise – even just a 10-minute walk on a treadmill, and to convince the waiting room patients to get up and do something. Patients are often unaware that actually chemo fatigue won’t be affected, your surgical recovery can be radically improved, and your general and psychological well-being – and, in my opinion, your prognosis can be drastically affected by exercising regularly – in whatever form suits you. My primary objective has now shifted as this hugely beneficial and important message is rarely addressed by oncology/radiology/pain management/surgical teams. No-one, not even a physiotherapist has proactively discussed physical exercise with me in 4 years of constant treatment. This is unacceptable, and we can change it.
I would like to see more patients discussing the benefits of exercise with their healthcare team – and challenging as to why this isn’t addressed proactively with every patient - even those undergoing chemotherapy. I am not superwoman, and of course I have days where the pain is unbelievable and the devastation telescopes me down, but keeping cancerfit.me and getting out and doing some form of exercise every day has helped me run/swim/bike past 3 terminal diagnoses and keep living the best life I can.