carers support query

  • 2 replies
  • 4 subscribers

Hello everyone, my sister (age 51) last year was diagnosed with ALL.  She is being treated at King's College Hospital in London.  She has been in remission and has relapsed more than once during that period.  She is hoping to have a BM transplant in the New Year all being well.

However she has felt very isolated as she has not found any support groups near her for leukemia and when she is treated at King's each patient has their own room - which makes sense but hasn't given her the opportunity to befriend any other patients in a similar situation.  As it's such a rare leukaemia she has struggled to find anyone in a similar situation.  I feel so much for her as I worry about her and want her to have support. Any advice / suggestions gratefully received!  Thank you.

  • FormerMember

    dear I am sorry to hear of your sisters struggles, but heartened to read she has such a caring sister such as yourself. I also have a very rare form of leukemia so understand the difficulty of finding a support group as there isn’t enough of us to form one. What I would say though is that all blood cancer patients share some common problems which bind us together. Things like extensive chemotherapy, stem cell transplants and the psychological stress associated with having a blood cancer, so your sister could get support from a more general support group for leukemia. Do you have a maggies centre in your area, they help all cancer patients and also provide support for the wider family. It has to be said that in the world of hemotology the provision of emotional support is still in its infancy and patients often feel somewhat isolated, combine that with the lack of knowledge of the general public on blood cancer and you can see this might be a problem. I would encourage your sister to join us here on the forum, it’s anonymous and she could speak freely about any concerns she has and connect with other blood cancer patients. 

  • Hi 

    Sorry you are in this position. I am as well. My  25 year old son was diagnosed with ALL on the 25th August 4 weeks after graduating from uni. He spent 5 weeks inpatient at Kings they really are exceptional. He was on the Elf & Libra ward until transfer back to Wales.  He is awaiting his transplant start of February. It was due on the 12th December but his MRD levels weren't quite low enough. 

    I know what you mean it is a very one it seems. Apparently its1 in 800 adults a year get it. We are unlucky!

    Hope things go well for you all

    Hayley x