Hi all,
My mum was diagnosed with myelofibrosis several years ago now, after it progressed from polycythemia rubra vera. Her condition has gradually worsened, and in late summer last year (2024) the medication she was on (ruxolitinib) stopped working. She was put on another jak-inhibitor (omjjara) but that didn’t do anything, so since October 2024 she’s not been on any cancer medication at all. She’s been continuing with her blood transfusions but that’s all (she’s now having 2-3 bags of blood weekly).
I am really struggling to cope with this all. Today she had a catch up with her consultant, who told us her prognosis is now “very poor” and that she has progressed to the final stage of high risk myelofibrosis (high risk of it developing into AML). He’s suggested she tries thalidomide as apparently that can help some people (1 in 3) with reducing cancer, but he said even if it does work, we might see benefits for 6-12 months at absolute best.
My mum has just turned 70 and is so young at heart. I’m dreading seeing her decline further. She’s so scared to be on her own and has even started to feel scared of the dark at night because her anxiety about dying is getting worse. I wish I could take the pains and fear away from her. She’s on oramorph now for the pain (though a lot of this is due to her hips being severely arthritic, but nothing can be done for her for this as ideally she would need surgery but she’s far too high risk for that to be an option).
I just feel so sad for her all the time. I am so scared to lose my mum, I don’t know what I will do without her. I haven’t yet had children and I’m not married, but both of those things (kids and marriage!) are hopefully going to be on the cards for me in the not too distant future (me and my long-term partner have spoken about both). But now I don’t think she will be alive long enough to see either of those, even if I got pregnant tomorrow and he proposed tomorrow. I feel like it’s all too late and we have run out of time.
How does anyone cope with this?
