My husband of over 30 years was diagnosed out of the blue with AML at the end of August, since when he has been hospitalised with brief breaks after each round of chemo. Initially he went downhill for the first week then spent a week in icu 'circling the drain'.
He has now pulled back and is on his 3rd round of chemo. Initially I went in every day but after 3.5 months I am exhausted, the hospital is over an hour away, so we have agreed that I visit every Monday Wednesday and Friday.
I am very thin skinned about any criticism that makes me feel I should spend more time there, but I feel this gives me mental balance, whereas when I was going in every day, I was turning into a zombie.
This is going to be a marathon not a sprint. I am bracing myself for criticism but I need some space to be myself and breathe.
Am I a bad person?
Hi Gloria and welcome to this corner of the Community although I am sorry to hear about your husband and the challenges you are having.
I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I will always say that those sitting beside the bed and are responsible for keeping life outwith the hospital going have just as hard…… if not harder at times than the person in the bed…… a patient is a passenger and basically does not have to make decisions.
over the years I have had significant time in hospital, mainly down to me having 2 Allograft (donor) Stem Cell Transplants…… this was made more challenging as I was being treated in Glasgow and we stay in Inverness.
So I made sure that friends and family took time to visit…… not just to see me but to take my long suffering wife away from the small room and more so the little room she was staying in on the ward.
Don’t be hard on yourself……. You are amazing.
You may want to check out Leukaemia Care UK…… the main UK Leukaemia Charity who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
This community also has a general……
….. support group where you can connect with others dealing with the practical and emotional challenges of supporting your husband…… and indeed yourself.
((hugs))
