Hello this is my first visit here, my husband has been recently diagnosed with multiple myeloma, i thought i would join up to get some help and advice.
Hi, my husband also has MM so I completely understand how you feel. Scared, sad, daunted, surreal, lonely, all of that and more. He was given the diagnosis 15 months ago and we have had a year of treatments and transplant, he is now in partial remission and has just started (as of yesterday) a maintenance treatment. It’s scary as we don’t know how he will feel on this new drug. My husband’s bone marrow was affected by 80% so he was in a seriously bad way and we were told without treatment he would only have 2-3 months, but now the readings are 0.6 which is a massive improvement and he is able to walk 4-6 kms every day, ….. when you consider he couldn’t even get out of a chair unassisted just over a year ago …. Such a difference…..
its a really scary situation to be in. My husband has his consent appointment for SCT next Wednesday and I’m really concerned as to how the treatment will affect him. How did your husband cope with it?
Well, it’s a really tough procedure to go through and there’s no way of making it sound easy. We were told the stay in hospital (which by the way was Churchill Hospital in Oxford, who were unbelievably fantastic) would be four to six weeks, but my husband came home after just three weeks. He managed to stay away from infections etc, so recovered well enough to convalesce with me looking after him. One of the worst things, my husband said, was the sickness and he found he could only cope by asking for anti-sickness help immediately rather than suffer. It was difficult for him to eat and drink so he opted to have a feeding tube (which I believe is unusual to ask for), but I really think it helped him to recover so well. There are so many different versions of how people have coped and I guess it depends on the individual, but suffice to say my husband has said he wouldn’t go through it again. But, he believes his decision to have the transplant was the right one even though it was very uncomfortable. The only advice I can give you, if your husband decides to go through with the transplant, is to follow to the letter what the nurses say and let them help as much as they can, he mustn’t be afraid to ask them for anything and to let them know exactly how he is feeling throughout the whole time he is there.
Afterwards, when he came home, I was really diligent in keeping an eye on his temperature and blood pressure. I was really careful as to the right foods and how much, even now his appetite still isn’t as good as we would hope but it is getting there. The community nurse should come to the house to take bloods etc so there is less risk to your husband catching anything. We didn’t allow anyone to come and visit him in the early months and even now we are very careful and make sure our friends and relatives are honest with us about any colds or viruses they may have. It’s been six months since he came home and we are seeing light at the end of the tunnel. I won’t pretend it’s been easy getting to this stage, but it was the first three months that were the hardest until it started to ease. It will be a very worrying time for you both and probably more for you whilst you are trying to keep him safe and well.
I know I have written a lot and I hope being honest has helped even if it sounds scary, please do let me know how you get on.
Oh dear - I’m glad you’ve been so honest about it. I’ve said all the way along that the transplant must be his choice to make. I know it’s the right route to go down but I’m dreading what he has to go through. I’ll definitely post again with an update
My partner is sadly too old for the transplant operation. He is about to start his 3rd cycle of chemotherapy. He had to miss a week because he had a severe menieres episode and was admitted to hospital for the day. Now on hold again as I contracted Covid. Fingers crossed Covid goes and he can have chemotherapy this week.
He seems to have lost his 'get up and go' he was always on the go before this. Somehow I need to find a way to get this back as I think a positive attitude can only help with his recovery.
My husband had to stop chemo after the 4th cycle because of the neuropathy that he is suffering. That’s the reason the STC has been organised so quickly.
if your husbands treatment does the job then chances are his remission/plateau will last quite a long time. I think this is the age aspect of it that is taken into account.
it must be terrifying for them and my hubby certainly has days when he wonders where or if it will all end - his problem is the neuropathy pain and numbness in his fingers that gets him down the most.
I guess we have to be strong for them as well as ourselves.
Our diagnosis was the biggest shock of our lives - never did we expect to be in this position.
