I registered with the site yesterday and your comments almost mirrored mine word for word with regards the awful symptoms. My husband was diagnosed 5 weeks ago and the pain that he is in has been truly awful. I just wanted to say that I hope your husband has improved since you put your original post and you are navigating your way round the system. It really helps me to know that other people are going through similar experiences and reading other comments gives me some hope that things might get better.
We have been on our journey for 2 years now. My husband Dave was diagnosed then with stage 3 active myeloma just 6 months after we married.
It has been a roller coast ever since.
In March during lockdown he had his STC which did not work. Levels climbed straight away, on to DVD after 3 cycles levels still climbing!
We have now stated IRD, just half way through 2nd cycle.
He is not well, looks grey, breathless, no energy but won’t tell our family or friends. Only I see the true situation and it is more than I can bear. I’m trying to teach from home after having taken unpaid leave and it is really hard. I feel I can’t talk to anyone. I don’t want to burden any of our friends especially as he wants to be positive all the time! Lockdow n isn’t helping.
We have 6 adult kids 4 are his they know very little of the true scenario. They are aware he is in the treatment but don’t know how far along our journey we could be. My 2 kids know a little more but again I don’t want to burden them with the truth to support me when they can’t be open with Dave about it! Any suggestions??? Any hope??
Hi there. I was so sorry to read your post, I do know exactly how you are feeling. My husband was diagnosed October 2019 after suffering for quite some time before they made the diagnosis. He also has Amyloidosis, an associated condition that some can get.
My husband was in hospital, terribly ill, from January to March 2020. The consultant, not any of his family, believed he was going to come home. However, he did and, apart from some mobility issues which is because of the Amyloids affecting the nerve endings in his legs, he is feeling quite well. He does get tired and is on various medications but generally he is quite OK. At present he is not on chemotherapy and his readings are, in the consultant’s words ‘relatively stable’. Obviously, at the moment, we are not doing very much at all but that is more due to lockdown than his condition.
My husband is a very positive person (much more so than me) and when he was first diagnosed, he was very positive and upbeat whereas I completely fell apart! He, like your husband, wouldn’t tell his family (he has 3 grown up sons) the whole truth and I felt I had to burden it myself. I struggled!! I eventually spoke to my GP who referred me (actually I could self refer), to a counselling service called We Hear You. I’m not sure if this particular service is just for people in our area but I am sure there must be other services like it. I was very dubious about speaking to a stranger about everything but I have to say, I don’t think I would have got through the first few months without ‘Kate’ my counsellor – she was an absolute diamond. I still have wobbly days but try to stay as positive as my husband.
My best friend also has Myeloma would you believe and, she too was very poorly at the start. She is now not having any treatment and is in remission.
So there is always hope. They are constantly bringing new treatments out and I was told at the beginning, out of all the cancers, Myeloma has the most research and new treatments coming out.
Please, please get someone to talk to. It doesn’t have to be someone you know. As your GP to be referred to a Counsellor. You will be surprised I think how much it helps.
Finally, this Forum is always here so anytime you want to ‘vent’, this is a good place to come also.