I was diagnosed with CMML quite a while ago. My lovely haematologist, who I've been seeing since 2005, had warned it looked like things were pointing towards CMML but I can't honestly say I was that worried.
A bone marrow test was excrutiating. (It's worth knowing you can ask to be sedated.) According to various hospitals I have a high pain threshold. I thought I'd screamed the place down, but my boyfriend said I didn't utter a sound. (His palms were bleeding though!) Apparently I have a defective JAK 2 gene, whatever that means.
I only started to tell people recently. I suppose I didn't want to make a fuss. Now I've told some people, word will spread. Will people be hurt if they haven't heard it from me?
A few weeks after I first knew I gritted my teeth and did a Google search. Average life expectancy 10 months? I shut it down and didn't look again until about three weeks ago. But there is so little information. And none of it tells me what to expect.
I find it hard to talk to friends and family about my problems, so I'd love to be able to communicate with other people who have CMML, or know someone who has. I've had enought time to get my head around this. I need to know more, get realistic and then put it to the back of my mind while I get on with the rest of my life.
