Hi there, my mum has been unwell for some time, incredibly tired, sleeps most of the time, general feeling very unwell without being able to say why and following a hospital visit, multiple scans, blood tests the consultant thinks it’s possibly myeloma/Monoclonal gammopathy of unknown significance (MGUS). My mum does have other issues going on which they are investigating but they have said they can’t really start treatment without being able to get to the bottom of the other issues and that the evidence for myeloma still isn’t clear. We have been stuck in limbo. My mum has just turned 70 and is currently in hospital having regular transfusions and steroids. Has anyone had a similar experience? Last week they’d given her a blood transfusion and steroids and she was up in bed and was the best I have seen her in months! She went downhill quickly again and back to being asleep most of the time. Thank you.
Hi @GRB thanks for posting and a great big welcome.
It sounds as if you you really feel in limbo and you are powerless to do anything.
You really do show what complex beings we all are and how our symptoms can be attributed to lots of different conditions.
Even today if I get a symptom, I do not know whether it is part of my blood cancer or something completely different.
The waiting and not knowing must be so difficult for you and you have all the normal thoughts, emotions, and feelings plus those of seeing your own mum.
I find this is a safe space for you to say how it really is for you and the Blood Cancer UK support line is also there for you on 0808 2080 888.
Waiting and not knowing the way forward is absolutely horrible, but please do look after yourself as well as you are your mum.
Please do keep posting as I look forward to hearing more about you.