chat
“I was diagnosed with acute myeloid leukaemia (AML) in August 2014. I had four rounds of chemotherapy as an inpatient at the QE in Birmingham, followed by a bone marrow transplant in January 2015. I had chronic Graft-versus-Host Disease (GvHD) and needed apheresis for two years. I’ve got permanent problems with immunodeficiency and adrenal suppression and am still receiving ongoing care and support from the QE which I am very grateful for.
My initial recovery was very slow and frustrating; no one can prepare you for the debility and weakness following a transplant, but I received invaluable tips from fellow patients who had undergone transplants.
Unfortunately, I was unable to return to my much-loved career as a nurse of 43 years, so took early retirement. I concentrated on getting well and took on new hobbies and volunteering for The National Trust and fundraising for Cure Leukaemia. However, I missed nursing, and felt I could still use my experience and skills in a worthwhile way. Remembering how fellow patients had helped me, I applied to be a buddy for the Leukaemia Care buddy scheme and started in November 2019.
To date, I have buddied three people, two of whom I am still in regular contact with. The other person was in remission and felt more confident, so moved abroad and no longer needed the service, but welcomed my support for 12 months and knows she can recontact Leukaemia Care at any time.
Despite different cultures, faiths, ages and social and home life, the pairings have gone very well. Initially my buddies have understandably been a bit apprehensive, but over the weeks, months and now years friendships have developed. There have ben ups and downs and their needs have varied accordingly. One buddy has waited a long time for a transplant partly due to lockdown but is now doing well eight weeks post-transplant. My other buddy was in remission but now has minimal residual disease (MRD) and is awaiting a transplant. I listen to them, making notes of key issues, which I refer back to appropriately. At times they ask for my advice, but when I give it, I stress that it is based on my experience and that theirs could be different. The best bit of advice I gave to one was to take her own mug and pillow into hospital; we all need some home comforts. I use material from Leukaemia Care to support our buddying sessions and feel well supported from the Buddy Coordinator. I also signpost to other support groups when necessary.
They feel positivity and encouragement from me, especially as I am now six and a half years post-transplant and have had a lot of complications and setbacks, but despite these, I am doing OK. I feel I can fully appreciate any concerns they may have, physically or mentally.
I have benefited from my involvement with the buddying scheme as it has brought some purpose and usefulness back into my life. I know from the positive feedback they give to myself and Leukaemia Care that they are very appreciative of me and the buddying scheme.
Please use your experience to help others – you could make a big difference.”