1 May 2018 at 2:49 pm #57317
Having just received the email advising us that this forum is closing as of Friday 4th May, may I take this opportunity of wishing everyone who either still posts or just looks all the very best for your future. I’m sad the forum has now come to an end but it has changed dramatically over the years with the advent of Facebook. I’ve had some wonderful advice and support over the years since Dave was diagnosed in 2009 – this was the only place to come at that time. Thank you to you all.
I shall miss it.
Regards to all
Jenny1 May 2018 at 3:43 pm #57323
Thanks for your message and good wishes. I have mainly been a looker rather than a poster, but like you was sad to see the forum has come to an end and will miss it. I`m not really into Facebook, so not sure what I will do now. Best wishes to you and Dave and to everyone who has found the forum helpful and supportive, as I have since being diagnosed in 2011.
Chris1 May 2018 at 5:12 pm #57325
This is very sad news, I haven’t been notified Jenny? so many who just look on here, and although I haven’t posted very much just lately, I always check first thing in morning and last thing at night, just to be sure that there is not a posting from someone who needs an immediate response, a few words of comfort or just to know someone is, well, just there. I, like Jenny, received so much support and friendship when first diagnosed back in 2012, one of them being Jenny, well, at least we still have our e mail contact Jenny, as I do with many others, so many memories, dear Pat and Sheila, well, we would not have known them but for this forum, so a blessing. Facebook, although I have to use, I do not like it, and like so many these last few weeks, thought about closing it down, so much nastiness on there, but, well, good bye my dear friends, Trevor and Ian, how I will miss our banter, you both made me laugh, Carole.1 May 2018 at 7:00 pm #57326
I too will be sad to see it go .i haven’t posted in a long time but always look .I have been helped so much by this forum . The people and their kind words . Good health yo all andrea x1 May 2018 at 11:20 pm #57327
I am not quite sure why the decision was made to close the Forum and create 2 Facebook groups. I have found this group to be invaluable. Thank you to all of you who answered my questions when first diagnosed.2 May 2018 at 2:09 am #57328
Hi one and all
Like a lot of people over the last couple of years I have not posted so much but have always visited the site regularly. I was really sad to hear about the closing of the forum community. It has been 8 years since I was diagnosed and have to say this was my real lifeline when I first came into contact with this sometime so cruel disease. The breadth of knowledge and care that was given by the community was amazing and has been really supportive and I am very sad that it will no longer be available. I have always resisted joining face book and felt a bit vindicated with all the recent problems that it has had will probably have to bite the bullet and join but am not really happy about it. Thank you to you all for your support over the years.
Bonny2 May 2018 at 8:32 pm #57341
I can’t believe that the foundation has decided to close down the forum without consultation with the patients and carers who have been using the site for many years.
I don’t use Facebook or other social media by personal choice, so the foundation is now discriminating against me and I now feel ostracised.
Over the years I have been overwhelmed by the support that patients and carers have given each other and many friendships have been formed. Along the way we have also lost some good friends as well.
As this will be my last post on the forum, please take care and be healthy.
I wish you all the very best for the future.
Net Fossil2 May 2018 at 9:20 pm #57342
All the very best to you too Roy. It’s been a pleasure knowing you and all the people on here over the years and of course we will always remembers those friends we have lost over that time too.
Look after yourself.
Jenny xxx7 May 2018 at 12:23 pm #57353
Just wanted to add my voice here. This forum has been so helpful at various points, and I don’t think facebook is a substitute, especially given all the privacy concerns related to it. A pity as well that forum users were not consulted about the shift!
On the positive side, I’ve learnt a lot from you all over the past few years, and really appreciate the comfort and shared experience the group has provided.
Wishing you the very best,
Frieda9 May 2018 at 12:49 pm #57364
I also echo everyones sentiment, progress is not always positive
All the best to everyone
Brian17 May 2018 at 10:44 pm #57440
Just testing to see if this is still working since I’ve just signed in again. Perhaps you will reply if you’re still following.
Jenny20 May 2018 at 3:37 pm #57445
Hi Jenny, and everyone, yes, still working, I check too, just can’t help myself. I will not be transferring to facebook though, in fact I have closed facebook down, for the moment, but just may be permanent, too much nastiness on there, and I just do not need to read it anymore, thank goodness for our net natter groups and our nurses though, looking forward to our next meeting at Stoke, Carole.
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