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Paul's story

The Bloodwise logo. Bloodwise appears in black text against a white background
Posted by
25 Feb 2016

"It started in Christmas 2013. I spent most of Christmas Day in bed with a stinking cough and cold which I’d had for 3 weeks. By Boxing Day we called 112 as we thought my asthma was causing problems, then I ended up in A&E at the Royal Berkshire. I had the usual checks done and was about to leave when the consultant haematologist came to see me.

Paul Carless

He said my white blood count was quite high and he wanted to re-test my blood. I was admitted and the next morning received my diagnosis: chronic myeloid leukaemia (CML). It was a massive shock. In those first days I went through a lot of emotions: when you get the diagnosis you don't hear the 'chronic myeloid' bit, you focus on that one word, 'leukaemia', and all the fear that goes with cancer.

You think there must be a mistake in the laboratory or something, anything other than this. Then the tears started flowing, quite silently, not for me but for my two little boys. I was desperate for them not to have to grow up without their Dad.

You live your life from one appointment to the next in those early days. It was a mad couple of weeks of information overload, bone marrow biopsy (what a laugh that is) and worry. You still don't get past the 'L' word but I had lots of reassurance from the hospital that if I was to get leukaemia then this was the type to have. Then I was given my first box of imatinib, or 'magic bullets' as I call them and it's amazing how 4 months turns things around!

I was prescribed imatinib straight after my diagnosis was confirmed. It's a drug that research funded by Bloodwise has helped to bring to patients. For the first couple of weeks I felt quite sick but this passed quickly. I had bad leg pains but this was good in a way, as it meant the drug was clearing out the rubbish in my bone marrow. In the middle of this I got a new job, but I was worried that I wouldn't be able to cope with the pain. My consultant suggested taking an anti-inflammatory, and the pain I'd experienced for four weeks disappeared within an hour.

Once I started my treatment I was able to see my white blood cell count returning to normal – the first step on the positive road. I’m lucky that CML has good prospects in terms of life expectancy and so far my treatment is headed in the right direction.

It was quite lonely for the first couple of months until I attended the Bloodwise Impact Day though - that was really when everything turned around for me. Suddenly I wasn’t on my own, I was surrounded by others who were going through the same thing as me, had different leukaemias or were involved in research, fundraising and support for people like me. It was a humbling and overwhelming day and one of the best things to come out of it was my connection to the CML Facebook group, which a Bloodwise staff member mentioned to me. Now I have instant support and advice, which was invaluable when I was going through the initial wave of side effects.

So what now? Many months on and although it’s a cliché, I see the world through different eyes. I try to make the most of every day and not waste them. I’ve set myself a fundraising target and am doing a series of fundraising challenges, to raise money for research that will provide the same hope and future prospects for all leukaemia patients, not just people with CML. I certainly didn’t expect to be running a 10K around Oxford, cycling from coast to coast, jumping out of an aeroplane at 12,000 feet with the Parachute Regiment or cycling 52 miles in Bloodwise's London Bikeathon but I’ve loved every second of it. How strange that all these things were there to do all my life, but it takes this for me to see them!

I’ve lost count of the number of people who say how well I look - that’s music to my ears. I still have bad days, I still have days filled with fear and days where I feel rubbish but I refuse to be defined by this illness. I’m Paul who happens to have CML, not Paul the cancer sufferer.

The best thing I’ve ever heard was when my dear friend Claire said to me: “I keep forgetting you have cancer”. That's exactly how I want it to be.

Listen to Paul tell his story

Last year, Paul was kind enough to speak at our annual Impact Day and reduced many of the audience to tears with his powerful speech. You can listen to it here >

Read more about how we've been able to help people with chronic myeloid leukaemia, thanks to you >