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
  • Hi Sweety,

    I'm sorry you haven't received a reply up to now. You're certainly not asking for too much - and I'm sorry to hear your brother is not being as supportive anymore.

    Firstly, do of course keep in touch with your medical team regarding the trial and what to potentially expect. You can also mention how hard you're finding it day-to-day, in case there is some further support they can offer.

    There are also other options for additional help that you could explore, if you haven't already - for example the resources and helpline offered by Macmillan.

    We are also of course always here on the forum if ever you want to write things down and reach out to others. Hopefully you'll get more replies to your post here soon.

    Do keep speaking to others - people around you and also support organisations where needed - to ensure you're getting as much help as is available.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

Reply
  • Hi Sweety,

    I'm sorry you haven't received a reply up to now. You're certainly not asking for too much - and I'm sorry to hear your brother is not being as supportive anymore.

    Firstly, do of course keep in touch with your medical team regarding the trial and what to potentially expect. You can also mention how hard you're finding it day-to-day, in case there is some further support they can offer.

    There are also other options for additional help that you could explore, if you haven't already - for example the resources and helpline offered by Macmillan.

    We are also of course always here on the forum if ever you want to write things down and reach out to others. Hopefully you'll get more replies to your post here soon.

    Do keep speaking to others - people around you and also support organisations where needed - to ensure you're getting as much help as is available.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

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