We're here to talk | 24-hours a day
08088 010 444FREE from landlines & most major mobile networks
Providing support to anyone affected by blood cancer
When I was first diagnosed with leukaemia, I couldn’t even spell it. In 2011, I was diagnosed with chronic lymphocytic leukaemia, or as it is widely known, CLL.
These three little letters rocked my world. I was 54 at the time. I had just taken up running and was training for the Brighton Marathon. CLL, I understand, is more common for men over 55. It was like someone was having a laugh, saying: “There you go, mate, you are reaching that age now. You can have this.”
All kinds of thoughts floated through my mind. My son, Ben, was at The BRIT School and I wondered if I would live to see him be successful? Would I live to see my daughter, Olivia, married? All three of us have season tickets for Brighton and Hove Albion FC and the club was about to move to their lovely new stadium later that year. Would I even make that? I hoped so.
To be honest, CLL threw me because I presumed that anyone diagnosed with the big ‘C’ will be treated immediately. Not with CLL. I was told that I would need chemo, but it may not be for some time. The exact time scale is extremely hard to predict. I was originally told up to six years. It turned out to be less than two.
They call this ‘wait and watch’. Some might call it, ‘wait and worry’.
I felt like a prisoner on death row; I wanted to get on with it. It didn’t feel like a reprieve, only a stay of execution.
I felt like I was on this journey in an unchartered sea. I felt like the Ancient Mariner with the albatross and my round world was now flat. I wasn’t sure that I wouldn’t drop off it. But I didn’t waste time worrying. Yes, I knew I might have to cross a couple of stormy seas, but it was not as bad as I thought.
So, if you find yourself in a similar situation to this, what can you do as you wait? Not a lot apart from try not to worry. Listen to the experts like Leukaemia CARE or Macmillan and of course your consultants. Well-meaning friends might tell you how awful chemo is; they might well be repeating theirs or someone else’s experience from some time ago but things are much better now and they have very good anti-sickness drugs. Besides, this is CLL. There are different types of chemo and, believe me, you will wonder why you worried.
The countdown clock clicked down as my blood count went up and, after two years from the time of my diagnosis, it was time for treatment. I was treated by Dr. Tim Corbett and his team at the Haematology Unit in the Royal Sussex County Hospital in Brighton. What a team they are. Premiership professionals that take you through your chemo with care, understanding and banter. It may sound a stupid thing to say but they are such a good lot that you almost look forward to going to hospital. You feel you are amongst friends.
So what is the chemo like? Now, I'm a man and I know that some men lose their hair. But I did not want to lose mine. First bit of good news; I didn’t. When I had chemo in the day unit, I felt a bit like the Ready Brek kid as it gave me a warm glow. I wasn’t sick and never really felt sick. Yes, I missed a Neil Young concert due to a complication, but I only missed three Brighton games throughout the season. One day, after attending hospital in the morning, I later climbed the roof of the O2 arena and saw Rod Stewart perform there the same evening, with my kids. Basically, I didn’t look or feel any different and carried on my life as normal.
So if you are diagnosed with CLL, my advice is to use it to spring clean your life. You will find the little things do not matter anymore. Concentrate on what you like and who you love. After the first cycle of chemo, I started writing like a Duracell Bunny on steroids (perhaps because I was on steroids!) and I end up writing a novel. It is called Wife Overboard and has its own website (www.wifeoverboard.com). I plan to give some of the profits to Leukaemia CARE (if I sell any!).
CLL was a wake up for me. To me CLL stands for Come-on Live Life. It is not the end. It is the beginning. In many ways it has helped me have a happier or perhaps more content life. “You don't take anything for granted and you realise how lucky you are. Don’t sweat the small stuff. Hand on heart, I am enjoying my life.”
I am starting a leukaemia support group in Brighton with the kind help of Leukaemia CARE and the Royal Sussex County Hospital Brighton Haematology Unit. The future looks great. I hear that they are even working on a tablet for CLL, which is exciting. I did finish the Brighton Marathon, I did see Neil Young this summer when he toured again and I am certain I will live to see Brighton play in the Premiership, and hopefully in Europe. I also plan to still go to virtually every home and away game with Ben and Olivia. But, will I live to see England win the World Cup? I don’t think any of us will live that long.