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.
Take care of yourself.
The Spider
