Chronic myeloid leukaemia - personal stories

Terry Hickmott

Terry Hickmott was diagnosed with chronic myeloid leukaemia (CML) in October 2004. 

"I was feeling out of breath and went for what I thought was a routine blood test to find out what was wrong. A day later I got the devastating news that I had CML. Leukaemia is a very personal thing, you hear of leukaemia, but until it hits you, you have no idea. It comes out the blue.

Once you’re diagnosed with the disease you need to learn very quickly about what you’ve got," Terry says.

Terry was put on a high dose of Glivec, a drug which controls the CML. "There are some side effects of the drug – sickness, diarrhea and it can make you very tired. There are three stages of CML – the chronic phase, the accelerated phase and the blast phase. The idea of the drug is to keep the leukaemia in the first stage as long as possible."

Terry has to visit the hospital approximately every two months for tests to monitor his leukaemia but his condition is controlled and he is able to enjoy life.

"I’m still not cured – it’s always hanging over me, but you learn to cope with it."

John Applebee

John Applebee was diagnosed with chronic myeloid leukaemia in 1988 and had a bone marrow transplant at Hammersmith Hospital in London a year later. He has been in remission ever since.

Since recovering he has raised over £10,000 in support of Leukaemia & Lymphoma Research by taking on a series of marathons and epic challenges, including running three marathons in three days and four half-marathons in a day!

John says: "Despite my excellent recovery after my bone marrow transplant, I was told by doctors that because of the rigours of my treatment, my lungs would never fully recover.

But now I feel fitter than ever before and I’ve taken on dozens of events. I hope that by seeing my progress, other people with leukaemia will realise that they can make a full recovery. I am not naïve enough to think that everyone with leukaemia will survive but I want to show that everyone who does can have a good quality of life.

Life doesn’t have to stop when you’ve been diagnosed with blood cancer. Those battling against leukaemia can recover and be fitter and healthier than they ever were. It’s all about showing people that it’s possible to get over it and do these mad things.

I am really grateful for everyone’s support over the years. Hopefully I can keep going and manage to raise another £10,000 to help fund this vital research."

Mark Rowlands

Mark Rowlands was diagnosed with chronic myeloid leukaemia in 1996.

"When I was diagnosed with chronic myeloid leukaemia 13 years ago, the doctors believed my condition was terminal and I was given just six months to three years to live, but I have received fantastic treatment.”

“You feel like you’re the only one when you’re diagnosed. At the time all I could think about initially was ‘I’m going to die’ and you start to think ‘is there any point in doing anything or being positive’. But you do it for everybody else and as time goes on and you’re still here and you’re still fighting, you start doing it for yourself as well.”

“When you first go to hospital it’s very frightening - seeing people who are obviously very ill, having had chemotherapy and with Hickman lines coming out of them. I’ve always had a bit of a phobia of needles and hospitals too! But in the end I think the fear of what was going to happen was far worse than actually having the chemotherapy itself.”

“You do get varying opinions from doctors about the best course of action and treatment options to take, so sometimes it’s best to take the opinion of one doctor you trust and follow that, then that’s the best way to do it. I did a bit of research and learnt the background to the disease I had and I found it really helped to engage with the doctors and get more detailed information from them about my prognosis.”

“The immense love, help and support you get from others can give you positivity that you need during the treatment, but in some senses you are still very much alone – only you are experiencing the treatment and wondering what on earth is happening. Like a lot of people I had thoughts of ‘why me?’ and ‘why at such an early age?’ etc, but you just have to get on with it.”  

“It’s not the end, you’ve always got a chance. Although it’s difficult to think of it when you’ve just been diagnosed, you’ve got to be positive – there’s always hope. I was in a situation where things didn’t look very hopeful at all and I’m still here 14 years later and there are new drugs being developed all the time – so there is always hope.”

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