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When were you diagnosed and what with?
I was diagnosed in March 2013 and I was diagnosed with chronic myeloid leukaemia (CML).
What symptoms did you have before your diagnosis, if you had any?
I lost a lot of weight. I felt fine, but my clothes never fitted me, they were too big. I’m type 1 diabetic as well, so I thought it was my diabetes.
I had a blood test on a Friday afternoon at the diabetic clinic, and on the Monday morning I had a phone call from my wife saying the doctor was banging on my door. I was at work, and the doctor never explained anything to Lisa, said it was private and confidential. So, she was getting worried and upset on the phone, and that’s when I phoned the doctor and asked what was wrong. He never even said anything, just told me to get to the clinic as soon as possible.
I went there, and they told me there was something wrong with my white blood cells. So, I just thought it was something to do with diabetes. They took a blood test there and then and sent me up to the hospital. I went to see Dr Maung, who’s my haematologist still, and I had to wait two weeks for the results to come through, which are the worst two weeks of your life. I went up to see him two weeks after that, and he sat me down and told me that I had chronic myeloid leukaemia (CML).
Did you not suspect cancer at all before your diagnosis?
No. I’d kind of been struggling with diabetes up and down, and you just never think you’d get cancer really. I’m still young and I know what they say, that it affects people of different ages, but you just never think it’d be you. I mean, I’m healthy, I don’t smoke, I don’t drink, I’m always active, I’m always doing marathons and things, so I just blamed it on my diabetes.
Did you know much about leukaemia before you were diagnosed?
Well, saying that, my dad died of leukaemia seven years before that, and still I never really knew much about leukaemia anyway. My dad had acute myeloid leukaemia (AML) and he went through it really bad.
My diagnosis was quite hard to take, and I remember I went to hospital and told everyone not to worry, especially my wife. I went to get the results, and I remember coming home just numb; I didn’t know what to do. I had so many questions to ask that I was too afraid to ask, and I just thought, “God, how long have I got to live?” That was the first thing I thought, was how long have I got.
So, when I went home and spoke to my wife, the first thing I did was google about anything, which is so wrong to do, and I convinced myself I had five years to live with this illness; that’s what it said.
Did you start treatment straight away?
I started it right away, I started imatinib, but it was the worst ever. I was sick every day, I had chronic pain, my bone pain was really bad, and just generally ill every day. I was on that many drugs and painkillers and sickness tablets, just everything.
Do you still have side effects from the imatinib now?
I’m not on imatinib now. I had to go back to the haematologist and say that, although it was working, I was really ill on the other side of it, and I thought something had to be done here because I couldn’t live my life like this, bed bound every day, and going from being so active to being in bed every day and sick.
They put me on another new drug, and that didn’t work because I came out in a rash. I then got put on a new drug in October 2016, disatinib, and it’s been amazing and I’m now in remission.
I still get the odd couple of side effects, like bone pain, but nothing like it was before. There are days now where I forget I’ve got this illness, it’s that good.
How have your family been with your diagnosis?
As soon as I got told, I took them into the room and I just explained to them. I think they thought like what I thought, like how long have I got to live, just the usual questions, but that was four years ago now and they’re fine.
Do you work at all?
I’ve worked my way up to being head chef now for 21 years in the same company, and when I got diagnosed obviously I couldn’t go to work, but now I’ve got to go to work. I went for about an hour and I went home because I can’t stay on my feet for that long with the chronic pain.
Unfortunately, two years ago, I had to go see occupational health because I was off work for a year, and I failed that, and I knew I was going to fail it because I’m on my feet for ten minutes and I’ve got to sit down, the bone pain is really bad. I was really gutted because I’ve been at that work for 21 years and I had to leave, but my boss said that when I got fit and better, the job role would always be there for me.
I’m now going back to work a few hours a day just to get back.
So obviously you still run marathons…
Yeah, I do it for Leukaemia Care, and I’ve done it with my nephew who’s raised a lot of money through events like football tournaments. I missed the 2017 marathon, but he’s done it and raised a lot of money for it.
Do you have any advice for someone who’s just been diagnosed?
Just be positive every day and just live your life as you can. Don’t sit there and let this win. That’s what kept me going through it, as well as my family. Just keep fighting, fight every day. I know it’s easy for me to say that, and everybody’s different, but that’s the positive mind I’ve set out to have and I’ve done that.