I was diagnosed in October 2016 with myeloma and an uncle of my wife also has it. Her uncle was back at work quite soon after his treatment. Initially part-time, I don't know at present.
I finished chemo in Feb 17 and radiotherapy in March and achieved complete remission. I still have to take morphine every day, having to double the dose from time to time. Can no longer drive and can walk only with a wheelie-walker thingy. My back has recently 'gone' and am awaiting results of x-ray. Have peripheral neuropathy affecting pelvic area, legs and feet. So I'm nowhere near fit enough to work. Emotionally I'm very stable and laid back about things. And I ent ded yet.
As with all things myeloma related, the disease, treatment, side-effects and recovery/relapse are very individual. There are no fixed answers. Life is what you make it.
My best to you and yours, please feel free to ask any questions you may have, though I don't know how much help I can be. But I will try.
For some strange reasons, I tried to reply to you three times and all of them I wrote a big message, who never got published for various reasons: either the internet or smth else.
I have wrote a lot about my situation in my introduction and it is pretty much what I feel.
I just want to ask some more questions, or more so to share what is going on with my husband at the moment and how worried and depressed I am about the whole thing.
He had only 4 cycles of chemo and by the end of the fourth one he fell so ill that the consultants made a decision and stopped them. He developed neuropathy in his legs and he has no sensations in his feet. He can hardly walk sometimes. It is now mid July and we are still waiting to see a Professor at Birmingham Hospital to see if he is fit to undergo the transplant.
My husband is reluctant to do it, because he believes that it will make him worse than he already is.
What could you say about the transplant procedure and the recovery? How long does it take and what are the complications?
I am very worried that my husband will not be able to walk or do simple things in the future. Is that possible? What do I do then?
I am scared.
He had hardly any medications a month now and the neuropathy is still there. He is in agony every night and we both don't sleep. If we do, then it is the best thing to happen to us...
Please tell me more about this and thank you once again for doing it.
When I came to this forum and waited, I though that there were not any people with this problems.
I told my specialist early on that I didn't think I'd cope with a transplant and it was never mentioned again. Sorry, but I'm unable to help with that question, other than to say that a decision not to have one seems reasonable to me.
I note you've posted elsewhere about money problems; has your husband applied for ESA and PIP? He may be entitled and it can be a fair amount. If you need to become his carer full-time, you may also qualify, after a short period, for Carers Allowance. Also, a blue badge is probably available.
It might be worth looking at myeloma.org.uk which will have discussions about transplants.
I've just had to spend 3 weeks in hospital as I got radiation colitis. Had to have my sigmoid colon removed due to sepsis and I'm now a man with 3 bottoms.
With regards to coping, I think you carers/loved ones have it the worst. The best I can offer is to take one day at a time and enjoy as much of each day as you can. At some stage, sooner rather than later, make sure affairs are in order and talk about his and your wishes for the end times. And having done that, forget about the future until it happens - my whole family thought I was on the way out 3 weeks ago - now I'm back home. The myeloma journey is full of ups and downs and everybody's experience of it is different.
Keep on with the questions, I'll try and help where I can. And remember -
