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In early 2015, I started feeling very tired and dizzy, couldn’t shake off a cold, and my feet were like blocks of ice. I didn’t really think it was anything serious, but after a few weeks one of my friends forced me to see my GP ‘just to be on the safe side’ – and I’m so glad he did!
My GP and I both thought it was likely that I was slightly anaemic, so he arranged a blood test to make sure. A couple of days later he called me to say that my platelets were a bit high and that he’d made an appointment for me to see a haematologist. I remember being terrified when the letter came through, as it said I had to attend a myeloid clinic – I’d never heard the word ‘myeloid’ before so I looked it up and found out that it related to bone marrow (and usually cancer). But I reassured myself that nearly all haematologists are specialists in one blood cancer or another, so it didn’t mean I had anything life-threatening.
When I met the haematologist, he made it clear how serious the problem was – my GP’s description of my platelets being ‘a bit high’ was quite an understatement, as it turned out they were at nearly 3,200 (normal range is 150-400), one of the highest my consultant had ever seen! He explained that he couldn’t give a definite diagnosis until I’d had a bone marrow biopsy, but he was "80% confident" that it would be essential thrombocythaemia (ET), a form of cancer which leads to overproduction of platelets.
The next three weeks were pretty awful. Not only did I have two bone marrow biopsies, but I also had to deal with incredibly unpleasant side effects of the medication to reduce my platelets, as well as the emotional impact of knowing that I was seriously ill, and the prospect of telling my parents that their only child had managed to get cancer at the age of 29.
Having got through this, and having read up as much as possible on (and learned how to spell!) ET, my biopsy results revealed that I actually had an unusual form of chronic myeloid leukaemia (CML). While I hadn’t heard of CML specifically, I had of course heard of leukaemia, so my immediate thought was: ‘who’s going to take care of my cat if I die?’ But my consultant’s very next words were that it’s a treatable disease, and while it can’t be cured I can still expect a near-normal length life with the help of daily chemotherapy tablets. I decided to go for a trial drug called bosutinib – it’s usually only used when the more common drugs stop working, but this trial is to see how it works as first line treatment.
The first few weeks after diagnosis were all a bit of a blur, which meant that I didn’t have the chance to panic (much!) at first – I always had the next appointment to focus on, and I was in so much physical discomfort from the medication that it distracted me from self- analysis. After this initial flurry of activity, I went through a long phase of feeling very low and ‘why me?’ about my diagnosis, which I think happens to a lot of people. My friends were incredibly supportive, but they (thankfully) haven’t had the same experience so couldn’t really understand.
A real turning point was when I started to meet other people with cancer through CML-UK, Leukaemia CARE and Shine Cancer Support.
They made me realise that I’m not alone, that there are loads of people going through the same struggles. They also taught me that it’s absolutely fine not to be back to ‘normal’ already,
or possibly ever, but that life might eventually be even better! I’m now setting up an Oxford support group through Shine Cancer Support as I’d like to help provide the same support to as many people as possible in my local area. I am also involved in Leukaemia CARE’s Cancer Lottery campaign in June, campaigning for fair and equal treatment for blood cancer patients.
Of course I wish I didn’t have cancer, but the experience has had a positive impact in some ways – it’s made me learn who my true friends are, and it’s given me the chance to meet new people too. It’s also changed my attitude to work – I used to be quite ambitious, but now I’m never going to have the energy to reach the top so instead I’ve reduced my hours and am dedicating my spare time to the things that really matter to me – my friends, my home and my health.
The future is looking good now – my treatment is working well, the side effects are manageable, and although life hasn’t gone exactly to plan there’s still a lot to look forward to!