Hi all,
I posted this yesterday in the myelofibrosis group (I think!?) but I’m still working out how this forum works, and now I’m worried I may have posted in the wrong place so it might not be seen. So that’s why I’m reposting here (sorry if that’s not the right thing to do! I only joined yesterday).
I‘m here because my mums condition is worsening and I’m really struggling to cope with it. She was diagnosed with myelofibrosis (a rare bone marrow cancer) 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. Yesterday I went with her to see 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) and has less than one year left at best. He said if / when it turns into AML, it’s “game over” (his exact words).
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 am 33 and 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 milestones, even if I got pregnant tokay and he proposed at the same time. I feel like it’s all too late and we have run out of time.
How does anyone cope with this? I feel like there’s so much we could have done together, and so many missed opportunities to make memories. She’s now totally wheelchair bound, being sick daily and has no energy, and I think she’s developed anxiety about leaving the house, so it’s not even as though we can really make the most of the time left because she won’t / cant leave the house to do anything other than see her consultant.
Hi Dldt2810 and a very warm welcome to the Macmillan Community but sorry to hear about your mum's diagnosis.
A cancer diagnosis like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot.
This New to Community area is like our reception desk where we look to direct you to the best part of the Community for you to get support.
As you see the Community is actually divided into dedicated Support Groups (Discussion Rooms)......... and yes you did indeed put up a post in the MDS/MPN/ET/PV/myelofibrosis (MF) support group.
THIS LINK will take you to your post and let's look for group members with similar experience to pick up on your post.
As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our general……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community ((hugs))
