Fran, Oxford, Chronic Myeloid Leukaemia
What cancer wer you diagnosed with?
I was diagnosed with Chronic Myeloid Leukaemia on 19th May 2015.
How did you find out you had cancer?
I’d been feeling a bit tired for a few months and couldn’t shake off a cold, and my feet were like blocks of ice. I didn’t think anything of the first two symptoms, but one of my friends made me go to see a doctor about my feet. I thought the tiredness was anaemia, and my GP suspected the same but did a blood test to make sure. A couple of days later he called me to say my platelets were extremely high. He arranged for me to see a specialist, who made it clear that it was blood cancer, but we needed a bone marrow biopsy to determine which type. It turned out to be an unusual form of Chronic Myeloid Leukaemia which can’t be cured but can be managed with regular treatment. CML normally increases white blood cells, whereas mine only affects my platelets – so in a rare disease (1 in 100,000 people) I also have a rare form of it, so at least I feel special!
What did you think/feel when you were diagnosed?
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 meds that it distracted me from self-analysis. It was only after a couple of months, once the initial flurry of activity and pain settled down, that I started to feel really low, and that took me a long time to get over.
How did the people around you react?
It must have been particularly upsetting for my family, as they live a four hour drive away so they couldn’t see much of me or help out with the practicalities, which means sometimes I’ve just been on the receiving end of their grief and pity instead… My friends have been wonderful though – I’m sure it’s been very difficult for them too, and I realise I probably wasn’t very sensitive to that at first, but they’ve never complained to me about how my diagnosis affects them. They’ve come with me to appointments, kept me company, sent me funny presents etc to make the whole process as bearable as possible.
What treatment did you have?
I take oral (tablet) chemotherapy called Bosutinib every day. I decided to take part in a clinical trial – Bosutinib is usually only used when the more common drugs stop working, but this trial is to see how it works as first line treatment. I’ll be on it for the rest of my life (unless I develop resistance to it or they invent a cure!) but so far it seems to be working very well and my leukaemia is being kept at a fairly safe level.
How did you feel through treatment?
My main side effects are fatigue and bone/joint pain, but at a bearable level these days. The first couple of months were pretty awful, but I was reassured by other people with CML that it would get better soon – and it did!
How did you get involved with Shine?
I’m a member of an online CML support group and one of them mentioned Shine to me. I looked at the website and spotted the advert for the Great Escape so I threw together a quick application and before I knew it I was in Bournemouth meeting other people in the “cancer club”!
What difference has Shine made to you?
Going on the Great Escape is the best thing I’ve done since diagnosis – it made me realise that I’m not alone, that there are loads of people going through the same struggles. Shine has also taught me that it’s absolutely fine to not be “back to normal” already – or possibly ever. Before I met other cancer patients I put a lot of pressure on myself to get my life back to what it used to be, but now I’ve accepted that it’ll never be the same but it might eventually be even better! I’m now in the process of setting up a local Shine branch so I’ll get my Shine fix every month…
How do you feel now about your experiences?
Of course I wish it had never happened, but I have a lot of positive things to take from it too – it’s made me learn who my true friends are, and it’s given me the chance to meet new people too. The main long term change I’m facing is work – I used to be quite ambitious, but now I’m never going to have the energy to reach the top and I’ve realised that there are more important things in life than work anyway. I’ve reduced my hours and am instead dedicating my spare time to the things that really matter to me – my friends, my home and my health.
If you could give one piece of advice to yourself before your diagnosis & treatment what would it be?
Don’t be afraid or embarrassed to ask for help, in both practical and emotional terms. Looking back, my friends were always there for the big appointments etc – but it was the times in between that I needed them too and I should have admitted that, as I know they’d have been there like a shot if I’d just asked.