I was diagnosed in the Summer of 2004. Apart from a couple of colds and a bit of low immunity which I had put down to late nights and the stress of exams, I had had no symptoms previously and wasn’t feeling unwell at all. I went to my GP to be prescribed the contraceptive pill and as a regular procedure, the doctor took my blood pressure. He looked very confused, insisting on taking it again. My blood pressure was so high, he thought his machine must be faulty! After the second reading was equally high, he referred me for a blood test at the hospital that afternoon, although he was sure ‘it would be nothing to worry about’.
I went for the blood test thinking nothing of it and that evening while I was out with friends, I received a phone call from the hospital. It was around 10pm. They asked me if I was feeling ok and told me my blood test wasn’t quite right. They insisted that I went to A&E immediately. I called my mum in a panic and we went straight there.
That turned out to be the scariest night of my life. I spent the whole night in A&E having various kinds of tests as no one was sure exactly what was wrong. Initially the doctors seemed to think I could be diabetic. By the morning, a consultant came to see me and explained that my blood test was showing a very high white cell count and he believed I had leukaemia.
I was completely shocked. My mum and I both cried. How could it be possible? I was a perfectly healthy 18-year-old one minute and being told I had cancer the next, it seemed unbelievable.
A couple of days later I had a bone marrow biopsy which confirmed chronic myeloid leukaemia. I was advised that ‘chronic’ wasn’t as bad as it sounded because it meant it was slow moving as opposed to acute which is fast moving. I was also told that it was very unusual for someone as young as 18 to be diagnosed with CML, and for this reason the consultants seemed unsure how to treat me. I was prescribed a fairly new drug called Imatinib which has since been hailed a ‘wonder drug’. But at that point, it had not been around that long and they were unsure of the long-term side effects on someone so young. For this reason, my brother was tested as a potential match for a bone marrow transplant (he wasn’t) and the initial focus was very much on finding another match.
In the meantime, my mum had to contact the school to explain what was happening as I was right in the middle of taking my A’Level exams. The school was really great and moved my exams around as I was really struggling with the tiredness at the beginning. Despite all odds, I got the grades I needed to go to my chosen university. However, I made the decision to postpone for a year and subsequently didn’t go at all (a decision I don’t regret).
As the years have gone by, there is more knowledge of Imatinib and other medications have come on the market giving people like me the opportunity to stay on long term medication rather than the risk of a bone marrow transplant. I feel extremely lucky that considering I was not feeling unwell in any way my local GP and the doctors that followed took the unusual tests seriously and didn’t brush it off. The outcome could have most definitely been very different if they had not persevered with their concerns.
Next year, it will be 20 years since I was diagnosed with CML. I have been taking a different TKI, Nilotinib, for a number of years and have responded really well (the disease is undetectable). I am lucky to have few side effects (you learn to manage the fatigue) and can lead as normal a life as possible.
I still have regular blood tests and speak to my consultant or nurse every six months. However, I have not let my CML stop me from living life! I work full-time, go to the gym four times a week, go on holiday and regularly have nights out with my friends! I even spent a year living and working in the USA when I was 23.
I accept I’ll be having blood tests and taking medication for the rest of my life but while this disease is part of my life and always will be, I won’t let it define me.
By telling my story I hope I can bring some comfort to others, especially young people newly diagnosed with CML. There was little support around for young people with CML when I was first diagnosed, but I want people to know that although this disease is scary and brings many challenges, you can still have a future and do all the things you want to do.
Whilst I didn’t have symptoms and was lucky the doctors acted so quickly, it could have been a very different story for me. Before I was diagnosed, I had no knowledge of leukaemia and if I had begun to have the usual symptoms, I wouldn’t have even known what they are. Spot Leukaemia is important to raise more awareness of the symptoms and spread more knowledge about leukaemia because early diagnosis is key.
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