I was first diagnosed in January 2003. I had been suffering from an infection, which had caused a rash to my stomach, back in 2002. I had gone to the doctors about it and kept going back and having blood tests, which showed my white cell count was not going down as it should. A doctor, after a few months of this, decided to refer me. I saw a consultant at my local hospital, who said it could be numerous things, including chronic lymphocytic leukaemia (CLL), but that I was too young for that, being 38.
Well, I came back in the January with my wife to find it was CLL and I was the consultant’s third youngest patient. I would say my feelings at the time were one of nothing, as it did not really hit me, and the consultant was very positive about the future. I was given booklets and Watch and Wait was explained.
I would say nothing really hit me until things went downhill a number of years later, and as the consultant was positive, this helped me a lot. The only times things really hit in were when I was coming up to treatment, as probably reality was hitting then.
My wife was there from the start. My parents didn’t really understand, but telling the children was the hardest. As they were so young, five, one and unborn at the start, as years went by and I was attending hospital and then in 2007 having my first lot of chemo, we told them dad had funny blood. We found this was the best way to tell them, so we were not keeping them out the picture. As they got older, they were told exactly what was happening. My two oldest, the boys, eventually went for a session of counselling with our local hospice, which they say helped a lot.
I was on Watch and Wait for four years before treatment in 2007. This reduced my cell count, until 2010, when it started to rise again. In 2011, it got to over 100, so chemo was given again. This did not work and after three goes it was stopped and I started the process of transplant.
Transplant was something which at the start of my diagnosis was to be avoided, but as I have found out during the years that treatments progress and the longer you can hang on, the better the treatment there is for you. I saw a CLL specialist in Leeds and he told me to use a certain drug. This was passed to my consultant at home, and this treatment has now come as a norm for my hospital. I remember being on forums before transplant with the majority of people saying no to transplant. Yes, the risk is great, but if chemo is not working as with me on my second cycle which was stopped, what else is there for you, as I was told I had two years left if I didn’t take it. With a young family, it was a no brainer.
Waiting to see if I had a match was nerve racking, but to go and find out I had five was unbelievable. It would have been better if my chest had behaved itself, as I went into hospital and it was then cancelled because of a chest infection, but a week or so later, they decided I had to have it. I thought chemo was bad, but the tiredness and lethargy were awful. Then it was in and out of hospital after six weeks, with infection after infection, but after never thinking I was going to get better, it is now six years later and I am so unbelievably different, healthy and back to running and being able to fight off infection.
I am currently fit as a fiddle. I still remember the phone call from the consultant saying after the biopsy I was in remission. I can remember giving no reaction, as I thought that day would never come.
Apart from having to go through a different cancer diagnosis, I feel proud to say I am back at work full time, doing what a non-cancer sufferer is doing. My wife keeps saying I should do a half marathon again, but it has always been a lifelong goal to do a full marathon. Whether my body could cope, as I have started to get a few niggling strains, is another matter, but watch this space.
I am supporting the campaign as I had a brilliant doctor that did not dismiss what was going on and when everything was not going as it should, she referred me to a more specialised person. My consultant was also helpful about what would happen next and was a really good support in the years to come. I have been on information days and heard some really bad stories, so the current campaign is needed.
I hope my story will give hope to people reading it, as there is a light at the end of the tunnel and you can go on to living a normal life again, doing what you used to do, although as in my case it can be a long road with disappointments and struggles along the way, but with the help of the great people and support out there, you can do it.