Can anyone fill me in on anything discussed at C... - MPN Voice

MPN Voice

10,886 members15,204 posts

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

rubyrubyruby profile image
6 Replies

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.

Written by
rubyrubyruby profile image
rubyrubyruby
To view profiles and participate in discussions please or .
6 Replies
Twinkly profile image
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 profile image
Tinkerbell13 in reply toTwinkly

Twinkly, you have described it all brilliantly! Tinkerbell

mol56 profile image
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 profile image
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 profile image
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 profile image
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.

Not what you're looking for?

You may also like...

Anyone going to the forum in Newcastle on Friday?

I'm going to the forum on Friday in Newcastle, which will be my first one. Has anyone else been to...
lizl profile image

Can anyone tell. Me what calr is

I was diagnosed in 2014 with JAK2 ET. Earlier this yawn I saw an MPN specialist who took another...
Garden987 profile image

How many on the forum in the west midlands?

Hi,all mpn'ers,just came across an old post about how a support group was set up,i was wondering if...
Tico profile image

Can anyone given me any advice re; Interferon

I am due to start interferon meds very soon due to unstable counts on hydrea, the Hem has warned me...
Marie95 profile image

Can anyone help me with levels results please until I can see the Consultant.

Only diagnosed with ET 2nd April so right in the middle of the Covid situation. So I’m a little...