Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it.
Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no leukaemia cells but, again, when the doctor tells you something you tend to take their word for it). Back in February I was preparing for a stem cell transplant.
Luckily I transferred to another hospital and thank god I did. After a long year of tests - spleen scans, repeat BMBs etc - they’re now confident I have a slightly progressed form of ET that is remaining nice and stable. I’ve been downgraded to a low risk patient - appointments every three months, half of them on the telephone. Can’t begin to explain the relief! Sometimes have to read my first diagnosis letter to check I haven’t been making it all up!
In a strange way I feel happier now than I did before any of this happened, despite having a blood cancer that I know can progress in future. Getting this second chance has changed my entire outlook for the better.
I’ve had great support from friends and family but sometimes you really need to talk to people who are going through similar things and this forum has been a wonderful source of support to me. Thank you all and I wish you all the best with your MPN journeys.