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Coping strategies?

My husband had a SCT for VSAA in July 2015. It failed to graft. He had a further SCT in Dec 2015 which after a very bumpy ride, did graft. He was then diagnosed with MDS in January 2018. He has been receiving azacitidine and responded well but is now no longer responding so will not be continuing with the treatment. He’s having a biopsy today but, as I wasn’t at the consultation, my interpretation is that they’re doing it to 100% rule out a transplant because I don’t suppose there’s going to be any other chemo they can try so when we have the results I imagine it’s going to be palliative care

My question is: what coping strategies do you all employ to deal with the constant ups and downs? I don’t want to burden my friends with all this again – it’s not fair but I’m really struggling to remain positive and am a bit haunted by the memories of him being very ill in 2015 and I know that’s what is on the way again
I have tried to get on one of the Maggie’s courses but they don’t have any availability until Jan 2019. I could try an OH referral through work but I know there’s a three month waiting list.

Any ideas gratefully received

Answers

  • Good Morning AlfieB

    I'm extremely sorry to hear that your husband is having a bumpy ride. I am a community champion, i was diagnosed with AML in 2015, in august 2015 i underwent a SCT and like your husband it failed to graft, in Feb 2016 i had a second 2016 which did and since then I've generally been extremely well however i have had GvHD.

    For me personally, i don't know that i did cope that well, i kept soldiering on more than anything. I gave myself things to look forward to which helped enormously and i do have a large network of friends. Have you been to the GP? The GP may be able to help provide access to talking therapy sooner than via Maggies and / or you OH at work.

    Have you looked into yoga, ecotherapy or alternative therapies such as acupuncture etc. They may sound a bit of beat but desperate times call for desperate measures and i learnt during my treatment not to poo poo anything and seize every opportunity.

    Mind website has lots of helpful information regards managing stress. Leukemia Care, Macmillan provide emotional support service advice. Also have you asked your husbands consultant, you aren't alone and they may be able to advise on groups which can offer support to you.

    Wishing you the best

    Rachel
  • Hi Rachel, thanks for your reply. Some useful advice there. I hope your recovery continues X
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