Bad Blood: Living with Essential Thrombocythaemia

Up until early February this year I was getting through lockdown by concentrating on eating healthily during the week and exercising. Apart from some tiredness and feeling slightly under the weather, I was feeling fairly well and positive then my doctor decided to refer me to haematology after some blood tests results showed high platelet levels. Despite having a blood clot on the brain back in 2014 I assumed it was a one off caused by the contraceptive pill as no disorders were found at the time, so the call from a haematology doctor one morning whilst I was working from home took me by surprise. The specialists suspected I had Essential Thrombocythaemia (or ET, which is much easier to spell and pronounce, especially after a few cocktails) but needed to run a series of tests to confirm it. ET is a disorder where your body makes too many platelets which puts you at high risk of blood clots. My health anxiety shot through the roof and I struggled to eat and sleep for over a week but thankfully, I’ve come to terms with things a bit more now.

Being diagnosed with (an albeit slow growing) chronic blood cancer in your 30s is pretty scary and is far from ideal but it’s only now classed as a cancer due to the cells in my bone marrow mutating to create too many platelets and hopefully with treatment and monitoring, I can live a fairly normal life. I guess we all have fairly uncertain futures anyway, especially at the moment but hopefully the treatment will continue to get my platelets down, won’t cause too many side effects and with a bit of luck the illness won’t progress into anything more life threatening.

The treatment is called Peg Interferon Alfa which I have to inject once a week. The injection itself isn’t painful but my skin seems to react a few days later with itchiness, redness and feeling hot, eventually turning into an attractive bruise. I’m building up a collection of them at the moment so my days of looking semi decent in a bikini are probably over. I’ll have regular blood tests to make sure my platelets are reducing then less often once they’re at a normal level. As someone with health anxiety and aversion to needles this isn’t the best news but it can’t be helped and being monitored health wise is a good thing as any changes should get picked up and dealt with fairly quickly.

There’s still a lot I don’t know about the illness and everyone reacts to things such as medication differently. At the moment I have times where my energy levels are quite low and I often feel like I have a cold but other than that and putting up with the annoying skin reactions, I mostly feel OK. I don’t know whether I’ll always be so lucky but only time will tell. As things change and I learn more I’ll keep you all updated but at the moment I’m just trying to cope with it the best I can. Things aren’t as certain as I’d like but I suppose it could be a lot worse.

update 10th April

I don’t feel like myself this week and I’m guessing that perhaps the side effects are kicking in. Some days are better than others but my energy levels have been low, I have more aches and pains than usual and just feel under the weather. I’m starting to feel like someone who has an illness now. I just hope my body gets used to the medication and things improve in time.