emsie

emsie replied to the topic Guilt in the forum Carers 7 years ago

Hi Ellen

I don’t feel guilt to be honest. I do feel cheated that our entire lives are unrecognisable since diagnosis.

I feel invisible – I have been really unwell myself for many years with several chronic illnesses and since my hubby was diagnosed 27 months ago none of that seems to matter any more – I have to take full caring responsibility f…[Read more]

emsie replied to the topic Problems with husband's behaviour….. in the forum Carers 7 years ago

In a word…yes. Think it is the steroids that they take that causes it. Not always easy to be thick skinned though is it.

emsie started the topic Ultra High Risk?? in the forum General 7 years ago

Hi

My hubby is currently receiving a second Auto SCT after achieving a poor response from his first SCT 16 months ago. He is very young (45 years old) and whilst the consultants couldn’t offer any assurances that a second attempt would yield a better response they were willing to try for him so we decided we have little to lose by giving it a…[Read more]

emsie replied to the topic SCT question in the forum Treatment 8 years, 8 months ago

Hi Rebecca

Thanks for your response. Very helpful to get a feel for the experiences of others that are further along in the process.

I know it is not helpful to think of ‘what ifs’ but can’t help but see some of these things as just more barriers to being able to obtain a lengthy remission – perhaps because we are still relatively early on and I…[Read more]

emsie started the topic SCT question in the forum Treatment 8 years, 8 months ago

my husband (aged 43) was diagnosed over Christmas last year. He has been through induction with 6 cycles of Velcade/Thalidomide/Dexamethasone. When he was diagnosed he was stage three with a poor cytogenetic risk factor (1q21 translocation). We have been told that this would mean any remission achieved is likely to be shorter because of that. He…[Read more]

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