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.
MacMillan helpline will probably be of use too, am sure they will have been asked this before
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
Hi @Bitsy, I just read your post and was wondering how you got on? I am in a similar position. Newly diagnosed beginning of the summer and on W and W. I have MCL and also work as a classroom assistant in a school but haven’t been working since diagnosis on the advice from my haematology dr. I had an occupational health meeting online when i was in hospital, they talked about medical retirement, I am also in my 40’s. I have yet to hear from my employer from they received my medical report so don’t know what is happening. Kerry.
Hi @Kezza a great big welcome to our forum.
You are now part of our forum family.
You seem to have a lot going on and also a lot of uncertainty since since your diagnosis.
I cannot imagine what it must be like to hear the words medical retirement when you are only in your 40’s
You have not mentioned it but it might bring up anxiety around financial insecurity for your future as well.
Also awaiting a response from your employer can be anxiety making.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Here is some information from the Blood Cancer UK website
Blood cancer: money and work | Blood Cancer UK
Perhaps don’t agree to anything until you have taken advice from your union or the Citizens Advice etc. or are happy.
Be ever so kind to yourself, you have a lot going on and please do keep posting
Hi Erica thanks for your reply. I am not finding things easy at the minute, extremely anxious over things and my mood has not been good, I don’t have alot of positives and struggling to come to terms with everything, hoping for something good to be around the corner for me.