Not a lot to write about. Things much the same, still wanting to get that chemo started. Have received the spring and summer issues of the Myeloma Matters magazine from MyelomaUK and we've both read them thoroughly. Lots of useful information about what may lie ahead further down the road...
Have signed up for the RUDY study into rare diseases - Myeloma, affecting fewer than 1 in 2,000 people, apparently qualifies. I understand it's only about 2% of all blood cancers, which includes leukaemia, lymphoma (Hodgkin's and otherwise), and several others.
I'm apprehensive about the likely chemo side-effects - nausea / vomiting, diarrhoea, peripheral neuropathy, and more. But I'm equally determined to get through whatever I have to get through. And of course there are two of us in this and we don't yet know how demanding Sue's role as carer is going to be through the chemo and then the transplant. The one thing I'm sure of is that it's vital that she continues to live her own life with her music and her friends as well. Looking after me must come second to looking after herself.
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Several friends have been through the chemo route, I've been loath to mention that all of them found it very difficult for the reasons you've mentioned. I wonder if you've considered getting extra nursing help for short periods: it would be beneficial to both of you.
ReplyDeleteWe're getting wildly different advice about the likely severity of side-effects. Today, at the Oncology Centre for pre-chemo bloods, Sue asked about vomiting precautions (Velcade / Bortezomib seems the likeliest cause) and the nurse said "Don't worry, that hardly ever happens". Onl one way to find out. But yes, if we need to get help in, we will.
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