[emsieParticipant]

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 for my husband and the children, whilst continuing to work full time otherwise we would have no income. The fact that I am in constant pain and actually take more meds/pain killers than he does, doesn’t seem to matter to anyone.

Most of all though I feel helpless – I see him suffering and desperately want to make a difference to his suffering but can’t – It’s not guilt per se – more despair that I can’t make things better for him.

[emsieParticipant]

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.

 

[emsieParticipant]

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 am still a the stage of analysing every development to assess the impact on outcome for the disease and the efficacy of the Transplant. Still at a point of feeling like our whole lives have been turned upside down and are unrecognisable in comparison to how they were previously.

Sadly I am a bit of a control freak that likes to look into the future and have ‘all my ducks lined up in a row’ and so adapting to this new way of thinking is hard.

It is nice to know that there are others out there that have been able to go on and have a tandem transplant with relative success as this gives us more weapons to fight this.

Thanks again

Em

[Author]

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