Published on March 4, 2019
When I tell people my reason for running a marathon they often respond, "so you are in remission?” They just cannot believe that anyone can run with chronic lymphocytic leukemia (CLL)! This is partly due to a lack of understanding, and one of the reasons I am running to raise awareness of those living with blood cancers.
Let’s go back to the beginning for a moment: like most people, my CLL was only discovered by accident during a routine blood test with a perceptive general practitioner following a case of the flu. Unlike the average patient population, I was only 39 years old. After the initial fear from diagnosis, I was able to carry on as normal. However, after five years I needed treatment. This did not work, so the possibility of a bone marrow transplant was explored. This did not work either, but I did get a very long complete remission for about 10 years. I’ve been lucky to not require further treatment for over 13 years.
The news that I had secured a place to run in the 2019 London Marathon to contribute to leukemia and lymphoma research through Bloodwise last November invoked both trepidation and excitement. A bit like when you first learn you have CLL, if you replace the word “excitement” with “fear”!
A number of thoughts ran through my head:
It will probably hurt.
It will be the greatest achievement of my life.
I need to start a training plan.
I need all the advice I can get.
I need to be prepared to run through the winter.
I need to hope my CLL does not get aggressive again (but the running, for me, contributes massively to this).
I will not kid you, this will be the challenge of my life—I am no Mo Farah. I run partly because it helps my health enormously, not because I am particularly good at it.
I took up running after surviving the heavy artillery chemo in 2002, and every year since then I have run the Newcastle Half Marathon, aka the "Great North Run"—the largest participation half marathon in the world. Consequently, the Great North Run became the first thing in my calendar every year. Whilst I did not see myself as a particularly strong runner, I always felt I had one advantage: motivation and determination.
Yet in November 2017 I did get a reminder that I have CLL when I was hospitalized with severe pneumonia. I believe running came to my rescue—while my lung had taken a severe battering, my running undoubtedly helped me to recover faster than many others with the same condition. I spent around 10 days in the hospital. The doctors looked worried, but my specialist wasn’t at all concerned, because he knew I was a runner, and it was he that allowed me to go home! Although seriously weakened, I started training for the next Great North Run—fortunately not scheduled until September the following year—by walking up and down the wards. I think the nurses thought I was a bit eccentric!
I was told to rest at home for two weeks before returning to work but did my first training run the day after I got home: I "ran" 1 kilometer in around 15 minutes!
After a few years of running at the Newcastle Great North Run, and a few more years in complete remission, it finally dawned on me that maybe I could fend off chemo for a lot longer than seemed likely at the time.
I did not like the idea of “watch and wait”, I had had enough of that the first time round when all I did was wait for the inevitable treatment. Running made me feel in control, and I had a lot of anecdotal evidence of the health benefit. It seemed like every time I stopped running, even for just a week or two, I would come down with a bad cold and feel generally miserable with little energy. Once I started running again, I would get a real energy boost and I am sure it boosts my immune system.
Last year was my 18th Great North Run in a row and 17 years since my last chemo, but I did come out of remission around four years ago. My white count is now over 250 but fortunately it has stabilised at this level and I still do not need treatment. I harbor hopes that if I keep running, I will never need chemo again, though my specialist says it is likely I will.
It was after completing my 18thrun last year that I finally decided to take on the new challenge of running a full marathon.
I knew I had to totally re-invent my normal training, so I joined a running group and they helped enormously by offering tremendous encouragement and providing a structured training programme to follow. As I write this, next Sunday will be 14 miles, one of the longest runs I have ever done.
My training started off really well, right up until December 2018, then something happened to remind me of the challenge ahead. A pain, a terrible pain, just under my left rib, stopped a couple of my training runs. I went straight to my consultant for an early check as I thought the discomfort was due to my enlarged spleen, but they could not tell me what it was. Fortunately, that vanished, but then another ache appeared right down the other side and developed into a chest infection. I will not bore you with the details, but it all served as a reminder that we are not the same as runners who do not have CLL because our immune system is compromised. Although up to a year ago I was mainly trouble-free, so I have some regrets that I did not get entry to the marathon a few years back, but still I remain positive. Incidentally, I recently had a CT scan to check on the pain and am still waiting for the results—but I am feeling a lot better and the pain has largely diminished, so I am confident it will be fine.
To be honest, running and CLL have always been part of the same story. I cannot describe one without mentioning the other. The decision to take up running came when I was at my lowest ebb, and partly it was to ensure I was ready for the next bout of chemo, which I was led to believe would be only a few years away. I also wanted to give back by raising money for a relevant charity, and it did not take long for me to choose “Leukemia and Lymphoma Research,” now rebranded as Bloodwise. This gave me an extra incentive: to run for people who were still struggling with their condition, as well as those who sadly lost their battle.
It is an incredible feeling of satisfaction to have this new amazing challenge and also know that I am raising funds to help beat blood cancers.
At times, I cannot decide whether I am the luckiest or unluckiest person on earth. Probably somewhere in the middle. Lucky to have survived but very unlucky to have CLL. I always looked after my health, and I was much younger than the average age to get this, but of course CLL strikes people at any age.
I met some inspirational people, both when having my treatment and through the joy of the Internet. This has left a lasting impression on me, and also provides a further motivation for raising funds for my charity, Bloodwise.
I will provide updates as my training progresses and hopefully relate my experiences from the big day on Sunday, April 28. Please check back for further updates on my adventure.
For further information about my London marathon challenge, click here to see my fundraising page. If this inspires you to make a small donation, even better! If this blog encourages even one or two people with CLL (or any cancer) to take up running, then I will have succeeded.
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