I was 39 years old when I was diagnosed with Stage 4 ALK+ lung cancer, with tumours in both lungs, my liver, lymph nodes and adrenal gland. I had never smoked and was generally fit and healthy – I was in the middle of a challenge to run a half marathon every month for a year!
In January 2014, having been suffering with a cough for 6 weeks or so, I visited my GP and was prescribed 2 rounds of antibiotics and a course of steroids with the thought that the cough was probably asthma related. When it was still no better, I was referred for a chest X-ray which showed some suspicious shadowing across the upper portion of my right lung and a large collection of fluid at the base, I was referred to the Chest Clinic for further tests. At the Chest Clinic the consultant referred me for a CT scan, but he also noticed brown specks on my fingernails and referred me for an echocardiogram. The experts had every confidence at this time that ‘it’s unlikely to be lung cancer’ as I was young, fit, a non-smoker, and otherwise healthy.
The echocardiogram showed a collection of fluid around my heart, so I was sent to A&E to await more tests. Following a rather dramatic
increase in the volume of fluid surrounding my heart and a blue-light trip to Harefield Hospital, I had a chest drain inserted. I also had a PET scan and biopsy carried out – which confirmed Stage 4 Metastatic ALK+ Lung Cancer.
When I met my oncologist, he prescribed Crizotinib which worked very well and shrunk all of the tumours to the extent that I suggested I might run the London Marathon in 2015. Far from responding with a comment along the lines of it being a ridiculous idea and how could it be possible with Stage 4 cancer, he suggested I run for his charity, the Cancer Treatment Research Trust. One of the real benefits of signing up to the marathon was that I was encouraged to write a blog – it’s so interesting for me to look back on all the entries and read how my cancer story has played out and the effect it had on my day to day training/life.
Marathon training progressed pretty well, but then cancer got in the way. I stopped responding to the Crizotinib and started getting blood clots in my lungs, which made me breathless every time I tried to run. This was one of the key struggles for me - I've always tried to stay fit and healthy and yet I got lung cancer, despite being a non-smoker. I tried to stay positive and upbeat, but I got blood clots in my lungs. I really hoped that I'd continue to respond to the treatment in line with the best responses - why wouldn't I – and now it looked like the cancer was changing, growing again. I felt like my body was letting me down!
My treatment switched to traditional chemotherapy – there were no other licenced TKI drugs available at the time – and I had to inject Heparin every day to reduce the likelihood of more blood clots forming. I progressed with the chemotherapy and the side effects seemed to lessen every time until they settled on a 4-day window of nausea and generally feeling dreadful, before returning to normal, on a 3-weekly cycle. The Heparin at maximum dose was not sufficient to stop the blood clots so I had an IVC filter fitted, in the hope that if new clots formed, they would not travel to my lungs. The side effects and the blood clots didn’t settle down soon enough for me to do the marathon justice in 2015 (I had to walk most of it) so I decided to do it again in 2017. I then did a double marathon (Race to the King) across the South Downs – because why not! By the end of 2017, I decided I was done with chemotherapy. I was done with the nausea and tiredness and aching all over. It was time for something new. My oncologist wasn’t very keen, as it’s one less weapon in the arsenal, but he respected my decision and prescribed Alectinib.
I know that at some point, my cancer will become resistant to the drugs I'm currently taking, and at that point I'll need to move onto the next available treatment. This will be the case for the rest of my life. I’m hopeful that ALK+ is becoming more visible as a lung cancer that particularly affects non-smokers and that there should be no stigma associated to this diagnosis. I’m hopeful that the visibility of ALK+ will increase the research surrounding it, and lead to more treatments being developed and made available to patients.
I vowed 'never again' after I ran the marathon in 2013 - but back then it was about the 'to-do' list and ticking it off! When I walked it in 2015 and ran again in 2017, it was about completing the London Marathon because I'm still alive and because I can and because I want to show that the diagnosis doesn't matter - if you stay fit and 'healthy', and positive, you can achieve amazing things. My friends all keep telling me I'm an inspiration, I'm amazing, superwoman. I'm just a mum and I want to see my sons reach their teenage years, I want to see them grow up, leave home, go to college, get married. Most of all I want to live long enough so they remember me and the fun times we had - I know some of this is not going to be possible, but I'm going to do my very best to get as far as I can.
And that is why I’ve put my name in the ballot again for 2020…