Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
hello everyone, it’s been a while. Hope all are ok and things are going well for those suffering and those who are caring.
My husband had a stem cell transplant in December and the consultant is happy with his levels but because of his age, they are expecting it to retune sooner rather than later so is being monitored every two months. The only treatment he is receiving is zometa. He is going back to work phased return and we should all be feeling ecstatic.
However, I am really struggling. I am in debt up to my eyeballs due to him not bing paid for 6 months and he won’t talk about it or even acknowledge it. His personality seems to have really changed - he has no empathy or tolerance and is really short tempered. I am really struggling to deal with the person he has become.
i would be interested to know if any carers or myeloma sufferers have experienced anything similar.
Thanks people - love to all x
It’s good to hear from you. I’m pleased your husband’s treatment has gone well, although I’m sorry to read what you are going through at the moment.
I wonder if your husband is the sort who might go in for some counselling? I must admit that it was a few months after transplant that things started to fully sink in for me and when I found things mentally the toughest. I went through a whole swathe of emotions - fear, anger, resentment - all very unpleasant and I’m certain that as much as I didn’t mean it to, it had a deep impact on those closest to me. I spent some time in counselling and it really helped. It’s not a silver bullet, but it did allow me some safe space to talk about how I was feeling and to try to make sense of what had happened and how I was going to move forward. It might be something to mention to the medical teams at the next appointment?
Re: financial guides, have you had a look at the info that Macmilllan has on this site? There may be some things you can access that will help?
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Hi Claro I just had to reply to you and say that I'm sorry to hear what you and your husband are going through. I had a stem cell transplant in February and am now pretty much over it I feel that although I am recovering physically emotionally there is a long way to go. There is a whole mix of emotions now that the actual treatment has tailed off. I feel hollow sadness scared to get too complacent. Watch and wait they tell me. Watch and wait for this horrid disease to sneak up on me again. Then there's a feeling of guilt and that I'm being ungrateful for all the kindness and support that has been showered on me by medical teams and family and friends. As you say on a practical level there is huge financial implications too. I only worked part time before all this and had to give up my job and my husband is self employed so it has had a massive impact. I think that for you as carer and supporter it is particularly tough and I'm sure your husband appreciates everything youve done and continue to do. Somehow we are all going to have to find a way through and a new way to live this new kind of life. Wishing you the very best Suex
Thanks for your reply. I have had carer’s counselling but my husband won’t entertain it. He is very matter of fact about it all which is good but his lack of discussion about how he is feeling is not helpful. He is a man of few words - always has been but now more than ever!
we will muddle through I’m sure but this forum really helps me so thanks for your input.
Sorry to hear you have been through all this as well but glad to hear you are recovering. It is a horrible disease and we always feel that it is there waiting to return.
As you say, we will muddle through somehow. We need to get through GCSE results day on Thursday as my poor daughter had to deal with all that as well. What will be will be. This forum really helps me as a carer to get rid of my thoughts.
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