Can anyone fill me in on anything discussed at Colchester Forum please ?

[rubyrubyruby]

Unfortunately I was unable to attend this forum, even though it is my 'local' !

I would be interested to know if anything useful was discussed.

Thanks in advance.

[Twinkly]

I was at the forum at Colchester recently .it was very informative ,we were shown slides

Our questions were answered by prof Clare Harrison from st Thomases hospital in London .we all introduced ourselves ( about 20 of us) we were encouraged to speak openly about our symptoms ,our hopes and fears of our various treatments, 2 people gave us a talk of their personal experiences.both had the problem many years,it gives us so much insite ,a nurse and a haematology doctor was on hand to explain ,treatments ,why we need to feed back our symptoms to them .that we learn from each other, I think these forums are very useful ,,try to come if one comes near you !!!

[Tinkerbell13 in reply to Twinkly]

Twinkly, you have described it all brilliantly! Tinkerbell

[mol56]

Yes, I agree. I would have liked to have had time to chat to the other people there with E.T. as well as in a large group but we ran out of time.

[Twinkly]

Mol56 lets talk now!, what did you want to ask or talk about ??

You have so many others here ..they understand all those worries you may have !,

We are the experts in our feelings! Xxx

[rubyrubyruby]

Sounds like it was useful. Such a shame when you get are lucky enough to have a forum literally on your doorstep and you have tickets to see your daughter sing at the O2 on the same night !!

mol 56 - did you have chance to get contact details of others locally with ET ?

[mol56]

rubyrubyruby

No unfortunately I did not. I think there were about 4 others with E.T. not sure that they came from the Colchester area, just me. Can't believe how lucky I was though, my haem consultant and the haem nurse who I talk to regularly were both there to listen to Claire Harrison and the general discussion.