what a roller coaster ride this is . Up down . post bone marrow may be past GVHD who knows .
my wife had her trans plant in november we are now past 6 months . she was due to come home and was trans ferd to a cottage hospital for rehab . ie get her legs working as 3 months of steroids had destored them . well this rehab never realy started . she got Noro virus in hospital . 4 of them were locked in for 9 days . no visiting !!!
over the week end of the may bank holiday the parramedics where called and she was tranfered back to Plymoth Hospital . she / we have been there for just over 2 weeks now . a feeding tube fitted so she can get some nutrients as she continued to be sick . How many pills do they expect you to swollow ? when you can even eat or dirnk that well.
i have had rage against the Machine some part work well and have good intent . ive exprianced horrendous comunications issues . Re 6.30 am nurse take blood for testing . 11.00 am Phibotomist rocks up to do the the some thing . What ?
the journey continues . iam emotional exhausted . and feel alone . we have a moto " one day this will end "
not sure how or when . but must keep the belief . sorry i could not work out how make a name . so i have a weird one "canuse my own name " ithink it was a blur afew days ago . J J love is all .
Hi J J
What a terrible experience not a all surprised you feel rage against the Machine.
Hopefully being able to get somethings out on here might make you feel less alone - I note on the Macmillan web page on Loneliness and isolation a number of things you mention above.
We often talk on here about carers remembering to take care of themselves - but it can be hard and certainly recognize that feeling of things being a blur.
Sometimes posting on here can be really helpful, we have a little bit of time to get our thoughts in some kind of order but sometimes that can be difficult and remember the helpline is available to you if you feel it might help to talk to someone - or in my case sometimes mostly just cry.
<<hugs>>
Steve
Hi canuse my own name I don’t normally post in this group but I just noticed your post.
I have had 2 Allo (donor) Stem Cell Transplants (Bone Marrow Transplants)…. the first in June 2014 and the second in Oct 2015 and I recognise the challenges you and your wife are navigating post Transplant.
We do actually have a dedicated Stem Cell Transplant support group where patients and caregivers from all blood cancers support each other on the Transplant journey.
Do join the group and have a look through all the discussions.
