Hello all! We are looking into designing an online signposting tool which would support people affected by blood cancer to find different peer to peer support services available to them, both within their local area, and online.
By ‘peer to peer support services’, we are referring to any services which help to connect members of the blood cancer community, including but not limited to: buddy schemes, patient conferences, support groups and online community forums.
We really want to know if this would be a useful tool for the blood cancer community, so we’d appreciate any feedback you might be able to offer!
I’d love to meet someone in my area who’d had a similar experience. To get it all off my chest with a real, live person who truly understands would be quite a luxury. And I’d love to help another person feel unburdened in the same way. And then there’s the ongoing support - it would be so helpful. I’m boring even my husband to death with mentions of anniversaries; Acute Myeloid Leukaemia news; how I evolve in my feelings about it all; memories; fears; how my appts are changing. He’s not a talker into reflection and analysis, and I am. There comes a point where I reckon it’s best and necessary for some of us to have a blood cancer companion, in order to preserve our other relationships.
@Fullofbeans
I try not to mention Acute Myeloid Leukaemia too often to my husband as I am doing so well he considers me “fixed” but I think about it every day and still have sleepless nights sometimes. I am going to try a local cancer support group but not sure if there will be any other people with experience of a blood cancer.
Yes, @Suey, my husband’s the same - it’s all done and dusted. I can understand the Move On mentality, and I have in many ways - but I think Acute Myeloid Leukaemia/SCTs will always be topics of interest to me, because they have been such an earthquake in my life, and there may well be intermittent aftershocks forever.
I’m sorry you’re having some sleepless nights, @Suey. I completely understand. I think my daytime processing of the Acute Myeloid Leukaemia helps keep my sleep unaffected, but strangely, now that my life has returned to near-normality, the Acute Myeloid Leukaemia is even more on my mind. I find myself boring everyone with mentions of it, and have to frequently stop myself. Perhaps that’s because the normality around me contrasts with the processing of it all still going on inside.
I think I’ll look into a local support group too. But as you say, there may well be no-one who’s experienced a blood cancer.
Oh @Fullofbeans wouldn’t that be lovely if we could meet for a coffee and talk Acute Myeloid Leukaemia to our hearts content, unfortunately I’m in South West Scotland x
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well in case you want to do another survey, here’s the link!