AML leukaemia relapse - offered a trial but it isn't working. I want some quality of life. Feeling lonely and abandoned

Long story short I was diagnosed with aml leukaemia in Dec 23 2 rounds of chemo , straight for a stem cell transplant my brother was a 10/10 match (may24) fast forward to Jan 25 n I’ve relapsed was told I had 2weeks to live , so you can imagine it hit me hard I’m 45 no partner have 2 children in their 20’s still living at home I planned my funeral sorted out my affairs then was dangled a clinical trial in front of me , was supposed to start feb 25 but didn’t with lots of hospital stays and transfusions I’m still here n started the trial in may so far it’s not working I’m literally at hospital everyday for something, I’m finding it hard to make it threw the days my kids are in denial I feel so alone and I know I’m fighting to spend more time with them and I don’t want to die but it’s getting so so hard , the trial isn’t a cure but could prolong things a little , I m at the point where I can’t really go out other than to appointments because I’m neutraphinic  I want sum sort of quality of life am I asking for to much ? My brother was there for me at beginning now I hardly see him cuz he can’t handle that I’m dying . I feel so lonely and abandoned.

Parents
  • I haven't been in your position but I am coming to the end of breast cancer treatment.  I did have times when I felt really rough but they never lasted for ever so you may find the same thing.  When I had good times they were brilliant and I appreciated them so much more.  Again you may find the same thing.

    Like you, I knew I had to be very careful about going out because of the risk of infection but on the other hand I knew it would drive me mad if I never did anything in the outside world.  So I compromised.  I did go out but always with a mask on and I went to 2 cafes which were particularly spacious and never busy.

    Now its the summer at least you could sit outside if you wanted.  My treatment was during winter months so I didn't really have that option.

    Obviously you have to be guided by your medical team in this - although I was quite anaemic I wasn't neutropenic - above may not be appropriate for you ........

    PS I found things like jigsaws / word searches strangely therapeutic so they may be worth trying and of course they can be done indoors.

    PPS Counselling / medication can also help.

    PPPS What about going out for a walk on your own when there aren't many people around?

    All the best and let us know how you get on.

Reply
  • I haven't been in your position but I am coming to the end of breast cancer treatment.  I did have times when I felt really rough but they never lasted for ever so you may find the same thing.  When I had good times they were brilliant and I appreciated them so much more.  Again you may find the same thing.

    Like you, I knew I had to be very careful about going out because of the risk of infection but on the other hand I knew it would drive me mad if I never did anything in the outside world.  So I compromised.  I did go out but always with a mask on and I went to 2 cafes which were particularly spacious and never busy.

    Now its the summer at least you could sit outside if you wanted.  My treatment was during winter months so I didn't really have that option.

    Obviously you have to be guided by your medical team in this - although I was quite anaemic I wasn't neutropenic - above may not be appropriate for you ........

    PS I found things like jigsaws / word searches strangely therapeutic so they may be worth trying and of course they can be done indoors.

    PPS Counselling / medication can also help.

    PPPS What about going out for a walk on your own when there aren't many people around?

    All the best and let us know how you get on.

Children
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