So i just wanted to ask as i was just told im in remission but still early post stem cell transplant and not yet started maintenance etc, what has been anyones experience on trying to get out of work on the grounds of ill health with myeloma? i work in a school so high levels of infection etc and a demanding physical role so i have no desire to go back anytime soon if ever, im thinking if im only in remission for months or a few years dovicwant to spend them at work?? but am worried the pension company might see the periods of remission as times to go back to work and not let me out with a pension? i hate to have to even think about this when im still in recovery but its just a reality and how my mind works. myeloma is classed as terminal although i know people can live long with it. its so hard to know what to do! my consultant said as its normally older people who get it ( im 40’s) its not something he gets asked about much and its my decision. anyway…thoughts or experiences would be helpful x
Hi @Bitsy this is a really important issue as you need to know what you are entitled to, what to say and how to get it.
Especially as you are in your 40’s.
Are you a member of a union for advice or the Citizens Advice?
Can you get advice from anybody else?
It might be worth giving the Blood Cancer UK support line on 0808 888 2080.
Look after yourself and please do let us know how you get on.
yes, im in a work union and have contacted them, they aren’t sure as with periods of remission they may say i can go back for a while, but then as its classed as terminal they weren’t sure, im waiting on them to come back to me and im also going to see my gp as soon as they do.
MacMillan helpline will probably be of use too, am sure they will have been asked this before
Just thought id post an update here on this topic for anyone going through the same. i had no issue with the 2 independent occupational health Drs i had to see in relation to leaving work on ill health. it was a relatively painless exercise. full pension awarded . of course after spending time worrying i wouldn’t get it im now moving on to worrying about whats next 
im my own worst enemy!
Oh @Bitsy, Good news about the 2 independent occupational health doctors findings and the full pension award.
Yes, my head always needs a project to worry about too.
Please do keep posting and really look after yourself