I posted a few days ago, but no-one has commented or left a message.
I know my form of luekaemia is very rare. And most of the 300 of us with CMML in the UK are male and over 70. Maybe they aren't on this site? I'm 53 and female. I kept my diagnosis to myself for a long time. I didn't see any point in worrying other people when there was nothing to be done.
But I would so love to be able to talk to someone with the same disease - or even someone else. There is currently no treatment for CMML, but those around me who know about my illness keep wondering why I am not being given any treatmant. It's really hard to make them understand.
Last week, I had to see my GP (query enlarged spleen). Turns out I should have been receiving free prescriptions since diagnosis! So - the rest of you - make sure you get your medical exemption certificate! (It was a bit odd filling out the medical exemption form. The only appropriate option was "receiving treatment for cancer", which doesn't apply to me, as there is no treatment!)
I am very lucky with my friends. I have a great support network. But I really don't want to burden them with my problems. My mother has dementia and, sadly, is not able to offer the kind of support I need.
Is there anyone else out there?
