Hi, sorry for my delay in responding. I would still like to attend if it’s not too late. Thanks
2 Likes
That’s fantastic! I don’t think Corrine has been able to book a table per se, so as long as we know numbers, we’ll obtain a table the right size when we get there.
Amazing! Really looking forward to meeting you there! I’ll make sure I’m a little earlier to get a table as the restaurant is first come first serve but I’ve emailed them and they are confident I won’t have trouble getting one of the big tables
This is my reply to Richard. Sounds like fun. I wish i could be over there, not stuck here. Unfortunately i have no means. Nor the time. I’ve been praying on something but the Lord’s will was not mine. Now i have to endure four sessions of iron put in me thru an IV, starting in a week or so. Oh well never a dull moment. If i didn’t have doctors to go to I’d have no life at all. I wonder why this kind of lifestyle was given to me? I better stop here, i hear yawns.
3 Likes
@Kel1 @jessicalr you still coming today?
Hi, yes, I am still coming
Is it still, 5:30, Pizza Union, Kings Cross?
Hello, yes 5:30pm Pizza Union Kings cross. I’ve PMed you with my mobile number. Looking forward to meeting you!
Great, see you then. Looking forward to meeting you all.
1 Like
I’m in town for the afternoon as well. If anyone fancies a coffee somewhere, happy to catch up then, too.
I’ve got a table. Find the fellow with a dark purple shirt!
1 Like
Well, I just want to say how glorious it was to meet everyone on Saturday! I don’t think we took a snapshot this time, so none of us can prove it but it was good to get together and see some real people behind the words that we swap on here.
Thank you to @corrine for trying to think of all of the possible needs for those of us who were meeting and I hope everyone got home safely!
Richard
1 Like
So glad to hear you all had so much fun. I intend to have fun too but I don’t know when, where, or what time. Anyway I’ve had my first iron IV done today. Not much pain but there was some discomfort when the iron was entering my arm. I was doing some thinking, as usual, about Avms and I was wondering if they could cause other illnesses or issues. Just a thought, because i have other issues. Could it all started with my Avm? Or just a bad immune system? I ponder on these things.
I wish I’d seen this (my fault, due to rehousing stuff…still on-going!)
I definitely would like it to make it to the next one. I’ll readily admit that since I am in my 50’s and ‘living with AVMs’, I dip in and out; I want to stay connected but sometimes I want to avoid it. But I am keen to meet other human beings who have AVMs! To connect more. It’s been 2.5 years now…
Thanks,
Jo
Jo, whenever you fancy starting an outing, just start one in this category. Barring a disaster, I’m always up for these things!
Richard
Hi, I’ve only just joined but was looking for support and would love to meet anyone who would be keen to get together and discuss things. I was diagnosed with an AVM in my brain a year ago and I feel like my life’s changed forever but there’s no one I can really talk to. Would so appreciate hearing other people’s experiences and stories. Is there a Whatsapp or Facebook group for people based in the south east to organise in-person meet ups? I live in London but I’m happy to travel. Thanks 
Hi @Hannah25
Welcome to AVM survivors! I’m in Leicester but I’m always up for meeting somewhere. Maybe the others on this thread are also up for another meet.
There is definitely a UK Facebook group (though I don’t use Facebook, so it doesn’t help me). @corrine is a member. If she doesn’t see this and reply, I’ll nudge her.
For me, staying relatively anonymous, such as we are on this platform, is better than talking about my medical history linked directly to who all my friends and family are.
Feel free to talk about whatever you want. Start a new topic (or reply below and I can move it to a new topic) and tell us how you are, what worries you, etc and it’ll be good to help you along. Like I say, as soon as we can curry enough interest for a lunch out, we can have a lunch out.
Very best wishes,
Richard
Hello @Hannah25
Welcome!
I have made a meet up group on facebook, I will send you a DM with the link. It hasn’t been used in years but would be great to organise another get together 
I’m glad you’ve reached out. It can feel very isolating when you haven’t met anyone who has even heard of an AVM before. This is a great community for support and shared experiences.
Corrine
2 Likes
Hello @corrine ,
Would you be able to let me know the details of meeting up too, with a link? It would be lovely to meet people. I’m sorry that I don’t really do facebook.
Best wishes from Talloak
1 Like
I don’t do Facebook either, so we’ll coordinate the rest of us on here. @claudbm might be interested in being part of the meet as well.