Just wanted to say that this chat forum is a lifeline for me, when I’m feeling at my lowest I know I can come on here and have a few words of comfort, knowing other people may be feeling the same as me. Even if no-one replies, it’s a chance to share.
My husband is in a poorly state right now, side effects of treatment have become so bad they have stopped it, so he’s in limbo-land, waiting for his bone marrow to recover hopefully faster then the myeloma can ‘wake up’ again. He’s had just about all the lines of treatment allowed, SCT didn’t last a year, we asked for Venetoclax and it has given him 3 years of remission, but the cost is empty bone marrow, very low platelet counts, anaemia and low immunity. Feel like this may be his last summer. Docs are brilliant and we just hope they can come up with a new option, and hope they will treat him with such low blood counts. Medication to boost his platelets (Revolade) hasn’t made any difference, just more side effects.
We hoped for a holiday but he’s too ill to travel, so we are home, day in, day out, except for hospital trips. I work from home (in healthcare!!) but at least I’m close by for him.
Feeling so alone as we have no close family nearby, people phone but it doesn’t really share the burden we carry.
