I am so so grateful to this site for all the advice, support and information I've been able to read since joining last year, after my first ablation when I didn't have any other access to help but knew things weren't right. It has kept me sane and occasionally made me laugh out loud as someone echoes my thoughts.
This is my first post, I've just been an onlooker til now, but want to get the message out that thanks to the help of the AFA and Arrhythmia Alliance, Cheltenham will hold the first meeting of a Support Group in Gloucestershire for anyone with any kind of AF or arrhythmia. Full details are now on the AFA website, but you might not have looked lately to see this. I know when I first started looking for any information about support groups the nearest I found were Southampton or Wolverhampton, so in the end I thought, why not try and start one locally? It's taken a while but here we are, about to have our first meeting, how cool is that?
Again, thank you to everyone who has posted on this site, especially to BobD and Beancounter for all the really useful information they've supplied which I would never have know about otherwise, and for the knowledge and experience of everyone who has had to deal with the sometimes negative aspects of the medical profession and has given their invaluable support to those of us who have had less than ideal treatment.
Hi Bob, many thanks for your good wishes, apologies for not responding sooner but they're much appreciated.
I love Barnstaple, have had several lovely holidays there and always thought it would be a nice place to retire to but seems unlikely just yet. Always keep it in mind though.
I also wanted to say thank you to all the other volunteers who regularly pass on their invaluable experience and useful information on this site, I hadn't intended to miss anyone out deliberately, just an oversight. Keep on doing what you do so well.
I've added my name to the list of attendees held by the AFA, so I look forward to meeting you on the 29th. They tell me that it is for arrhythmias in general rather than any specific type but I'm sure it will be very useful.
There used to be an ICD support group held in Cheltenham but it folded a few years back, so if by any chance Arrhythmia Alliance have got an old members list, they could possibly be contacted and we would have a ready made group.
Looks like I'm not going to make it in April as I can't manage to get the time off work. A real shame as I have been looking forward to it. If there is anything I can do to help, without actually being there on the day, please let me know and I will do my best. Hope you get plenty of attendees and that it all goes well.
I have tried to contact Audra Rumming, the Gloucester arrhythmia nurse, to see if she was interested in being involved but her answering machine always seems to be on - I have left messages but have so far had no reply.
That's a real shame that you can't get the time off from work, did you register with the Arrhythmia Association as if they have your details they can let you know when the next meeting will be and hopefully you'll be able to make it then.
I know what you mean about getting hold of Audra Rumming, I tried several times last year but no joy. I wondered if she had actually left the hospital as the AFA also had the same problem contacting her.
How did the support meeting go? - please let us know. Hopefully there was a goodly number in attendance and the speaker/s held their interest. I am gutted that I couldn't be there but will do my best to get to the next one.
Our first meeting went really well, thanks. There were more people than we expected as 14 registered but actually we had about 20 folk turn up, which was wonderful.
Dr Richard Williams, who is a consultant physiologist, was very informative about all the different types of AF, the need for anti-coagulation and how to deal with the medical profession when they are not giving you the help or information you need. He was easy to listen to, happy to answer questions at any stage, and the afternoon passed really quickly.
The general consensus was that more of these meetings would be welcome, possibly about three a year, so I do hope you'll be able to come to the next one.
Glad to hear that your expectations were exceeded. Do let me know when the date of the next meeting is decided, and I will try my best to get there. Unfortunately I work full time, so I have to get someone else to cover me in order to have time off, unless of course it turns out to be an evening do!
Well done for your efforts in getting a new group up and going.
I would be interested in joining you in April however at the moment my husband has recently been diagnosed with Advanced Prostate Cancer so I have to keep my diary bookings very fluid due to hospital appts.
Perhaps you could let me have details of where and when and I will try to join you all.
Hi Jackie, really sorry to hear about your husband, obviously he's your first priority at the moment, I quite understand.
The meeting will be at St Paul's Medical Centre, Swindon Road, Cheltenham on 29th April starting at 1pm. There is a contact number on the AFA website to book your place, just to have a rough idea of numbers really, but if you find you can't make it at least we'll have your contact details and can let you know when the next meeting will be.
Hi Jackie and so sorry to hear about your husband. It's a bummer! Bad joke! having been through that particular hoop I sympathise and if you or he wanted to talk to a survivor then message me direct.. Three years now and looking good.
I am glad you have managed to give P C a kick in the ass! I am not sure that we will be that lucky as it has got away into Mikes leg and into thelymph nodes in the groin. At the moment he has to have CT scan and another Bone scan. He is on the hormone I plants so fingers crossed that we can halt it in its tracks for some time.
Keep up your good work in the forum, you are someone we can all trust to give us excellent advice when we need it.
I had my prostate removed which was lucky as they found that it had already escaped so I had 33 sessions of radiotherapy plus still on Zoladex impants till August but PSA undetectable at present. You can beat it!
Hi Kate, hope you're well. I've just posted a request for anyone with AF living in the Stroud/Chelt/Glos area who would like to be in touch re local AF services . . . and then I saw your old post. But looking on the AFA website there isn't a group in Cheltenham shown on the map, so I guess this group has folded? Katherine
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