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Old Sat Nov 11, 2017, 10:49 AM
whackerswalsh whackerswalsh is offline
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Join Date: Nov 2017
Location: Dublin, Republic of Ireland
Posts: 8
Hi Neil

Many thanks for your response and the helpful tips to try and progress things along with the Team.

I originally looked into Kings College London as they had advertised clinical trials, but they were only at the interest stage. After my insistence we got to see another consultant in RI who did some years in US specifically with BMT and she was fantastic, we got more out of her in 1 hour than I have in 2 years! But she was only looking at a possibility of a transplant which is a non-runner it transpires.

With our current Team and almost 2 years on we have only met officially with them twice. On the last meet (over 6 months ago and at my behest) I put forward very similar to what you listed, but it always seems to be a one-way street that we are setting up these meetings. And we do not get any stats that most posters here seem to have.

But I will certainly ask about carer support groups, one of the biggest challenges for me is the feeling of isolation and wondering if I could be doing more.

Again thanks so much for your encouragement and advice.

Regards
WW
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