I am 39 years old, a wife to Elliot, and a mum to 2 young sons. I'm generally fit and healthy - I've never smoked, I eat well and exercise regularly. I run half marathons. On the 8th April 2014 I was diagnosed with incurable lung cancer - with secondary tumours in my liver, lymph nodes and adrenals. My story is one of hope, maybe some inspiration, but mainly just of someone who's struggling to hold it together every day to do battle with a disease for which outcomes are typically so bleak. I was diagnosed at Stage 4, where typically less than 15% of sufferers live beyond 5 years. This is my story...
In April 2013 I ran the London Marathon (in a respectable 4hrs 18mins), ticked it off my to-do list and vowed ‘never again’! It was a massive challenge, very painful, but an overwhelmingly amazing experience. After the come-down it was a struggle to find the motivation to get out running again so a friend and I decided (I’m pretty certain there was alcohol involved) that we would run a half-marathon every month for 1 year! We embarked on our challenge in September, with the Windsor half marathon, followed by Henley (October) and Marlow (November). December and January are slow months in the running calendar so we just planned our own route and headed into Windsor Great Park, in the rain, to ensure that the challenge remained. February came around and with it the Old Deer Park Richmond half marathon - we'd reached the 6 month mark, halfway through our challenge!
In December 2013 I developed a cough. Nothing untoward I thought, just the beginnings of a seasonal cold. In January, when my cough was no better, I visited my GP and was prescribed antibiotics, followed by 2 further courses, steroids, and a chest X-ray, when there was no improvement. The chest X-ray showed some suspicious shadowing across the top of my right lung and a large collection of fluid at the base, so I was referred for a CT scan and an echocardiogram. The experts still had every confidence that ‘it’s unlikely to be lung cancer’ as I was young, fit, a non-smoker, and otherwise healthy.
Following the echocardiogram, things started to go awry. It showed a large collection of fluid sitting around the lining of my heart. I was told to pack an overnight bag and head for A&E where the team were expecting me.
My first thought
'I'm too busy for all this. I've got to collect the boys from school, birthday parties to organise, half marathons to run, bids to manage. There's no time for me to be ill.'
On the way home from work I made arrangements for the boys to be collected from school - could granny come and pick them up, maybe stay over? I called Elliot to get him to come home. At A&E they admitted me and confirmed that they would do their best to let me go home the next day, dependent upon the results of another echocardiogram. The next morning the nurse must have thought I was bonkers as I lay on the bed and sobbed that I wasn't allowed to go home, and that meant I would miss the Wasps v Saracens rugby match! I hadn't lost the plot, it was my sons 8th birthday treat and we had family tickets with friends, to go to the match. The second echocardiogram revealed that the quantity of fluid around my heart had doubled overnight. The priority was now to drain the fluid before it caused my heart to collapse, and the best place to do this was Harefield hospital (a specialist heart and lung centre).
I was transferred to Harefield and admitted to the HDU. At this point, the team also discovered that my liver was enlarged, increasing the risks of puncturing my lung or liver while inserting the drain. It was agreed that this was still the best course of action and a drain was inserted into the lining of my heart. Over the first 2 days, over 1ltr of fluid was drained! The weekend passed uneventfully - Elliot took the boys to the rugby while I recovered in hospital with a rather fetching tube sticking out of my chest. A MacMillan nurse at the hospital came to see me and I told her of my worries that everyone was focussing on the fluid in my heart (understandably), but that the underlying reason - probably whatever the CT scan had showed in my lung - seemed to have been forgotten. By the time she came back to me there was a plan of action in place. The next morning I was booked in for a PET CT scan and on Wednesday I would have a biopsy, under CT, from my lung. All being well, the drain could also be removed and I might be able to go home - the best news I'd had in a while!
So, 6 months into our half-marathon challenge, and just 5 weeks after completing my last half marathon, I was diagnosed with lung cancer. Not only that, the scan revealed that the initial tumour had spread from my right lung and I had secondary tumours in my liver, my left adrenal gland, and the lymph nodes in my chest and neck. It was also the cause of the fluid in my heart - the outlook was not looking good.
So, if you have a 'bucket list' - of places to go, things to do - do them. Right now. Because when you're told that 'you're dying', everything changes. For me, none of that mattered anymore. What mattered was being able to take the boys to school and pick them up. To regain a sense of normality at home for the boys. To chat with friends in the playground, to meet friends for coffee, to get back to the gym and out running. Hell, I just really wanted to make it to my 40th birthday! In those first few days and weeks it felt like none of these things would ever be the same. I closed bank accounts, updated my will, wrote down funeral wishes and spent quite a lot of time just curled-up on the sofa in floods of tears. One of the hardest things I had to do was to write my 'last letters'. The letters that, if they are actually being read then I'm not coming home - ever. How do you write down all the things that you want to say over a lifetime with your children and husband - about how proud you are of all the things they've not yet achieved, how the World is full of amazing opportunities to go out and grab with both hands, and how much I really, really love all of them and am just so sorry that I can't be there in person to share these memories, but that I'll always be with them in their hearts. I have incurable lung cancer, diagnosed at stage 4. No amount of chemotherapy is going to change that, but with a bit of luck and a lot of science there are treatments that can help.
'Fortunately' further testing of the biopsy tissue revealed that my cancer was a specific type of lung cancer that was likely to respond to a Targeted Therapy. Within a week of diagnosis, I began taking Crizotinib - privately funded as it's yet another cancer drug that is not available on the NHS - and at my 3 month CT scan the news was amazing. The secondary tumours are no longer detectable on CT, and the primary tumour in my lung has shrunk considerably!
So, this is our new 'normal' - a tablet twice a day, blood tests every month, and a CT scan every 3 months. Life goes on. Lung cancer outcomes are overwhelmingly bleak, but it's thanks to breakthroughs in research that the treatment I'm now taking is available.
The work that the Cancer Treatment and Research Trust carry out is so important, particularly to me and my family - 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 vowed 'never again' after my marathon in 2013, but back then it was about the 'to-do' list and ticking it off. Now it's about running the London Marathon because I'm still alive and because I can, and at the same time I can try to raise some money for cause that means so much to us. I also 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 wife, and a mum and I want to see our 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 for now, I'm going to do my very best to get as far as can.
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