Hello Dids,
You may have read some of my posts. I was diagnosed 2 yrs ago with 3 HR markers. I’m just coming to the end of my first year of treatment. I didn’t start treatment in the first year as I was initially smouldering, then my partner became seriously ill and underwent major bowel surgery, then my father died…all in the same year. Fortunately for me, the myeloma was picked up incidentally, and apart from worsening anaemia, I had no symptoms.
It’s a scary time when first diagnosed and I cannot tell you not to be scared as it’s not that simple. I can only share my experience and hope it helps. I lost my mojo (including my sense of humour) for 4 months after diagnosis. It took me that long to get my head around it. Good to hear your husband is coping well, but I understand it’s hard for you. My partner doesn’t talk about it much, but that’s normal for a man! However, I know he is worried about me and the future.
Good that you don’t Google the disease as I did a lot of that and it only served to increase my anxiety. I no longer read stuff online, except here at MUK.
I have generally coped well with the treatment, with minimal side effects, although I did find the SCT tough going (can’t sugar coat it!) Everyone is different and I do hope your husband manages well. Btw, I was 59 at diagnosis and relatively fit. I’m vegan (not good in terms of hospital food!) I recovered well from the SCT and was getting out and exercising a lot about 2 months after coming out of hospital. Then a cold hit me, which turned into a chest infection for which I had strong antibiotics, which in turn set my stomach off and I lost 6kg! Then my iron went really low and I had an infusion. After 2 months of being poorly, I’m now feeling pretty good. Just been on a 6.25 mile Nordic Walk today!
Key to my ability to cope has been finding the right consultant and the amazing support I get from the whole team at hospital. I’m participating in a trial and am on a high risk pathway which is not otherwise available on the NHS. If your husband is able to join a trial, I really recommend it. I travel weekly c. 120 miles round trip but it’s worth it.
Sorry this post has got so long! I hope this helps a bit and doesn’t add to your anxiety! It’s not a nice place to be, but us animals have an amazing ability to adapt! And remember that there is a lot of research into myeloma and its treatment and new treatments being developed all the time.
Please do message again with any questions or concerns. I think peer support is really important and wish that I had reached out in the early days too.
Kind wishes,
Shelagh
