emsie

  • emsie replied to the topic Guilt in the forum Carers 3 years, 10 months 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]

  • 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 3 years, 10 months 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 5 years, 6 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 5 years, 6 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]

  • emsie became a registered member 5 years, 10 months ago