[petesilverParticipant]

It is with great regret to announce that we have had to suspend the Exeter Myeloma Support Group due to lack of support its is a great pity as I enjoyed our meetings. A great deal of effort has been put in trying to encourage other patients to join but to no avail.

[MicheleParticipant]

Hello Pete

It's a shame that you've had to suspend your group but I think everyone with Myeloma copes in their own way and not everyone needs or wants to use support groups.

Keep in touch on this forum though!
🙂

[jmsmythParticipant]

I agree Michele. My husband had SMM for 6 years and has just started treatment. I never felt inclined to go to a support group and Frank would not even talk about it, but now that treatment has started I feel the need to go. I will be going to my first one in Belfast in October.

As you say cope with Mm in your own way

Love Jean

[petesilverParticipant]

I agree with what you say but I think you miss the point, I think people get the wrong idea what support groups are all about, it not a matter of sitting around bemoaning our misfortune we all tried to be positive, sometime have talks by a wide range of different people from a consultants to aromatherapist we also did outside trips together and we also some months we meet at a hostelry for lunch, in all we always tried to do something different every month. We all exchange phone no's and emails so if anyone just wants to talk we are always there.
We also enjoyed a couple of art sessions and made a lovely joint work which is displayed in our haemotology waiting area.
It is also amazing what information you can get just from talking to other patients sometimes what really stands out is that everyone is different some treatment are ok from some and not others, if only people would shake off there perception of what support groups are all about, I agree we have had a few sad events but in the end one has to be realistic it comes to all of us in the end, but as long as the doctors do their best is all one can ask.

[tomParticipant]

Hi Peter

Sorry you closed the support group down as i think its a great help.

I believe you dont need many to go to a support group all you need is a few willing folk and hope that (and we are getting them) new members spot the posters at your local hospital.

Whatever way it runs Peter at least you tried 😀

Tom "Onwards and Upwards"

[jmsmythParticipant]

Hi Pete

Thanks for your post. I appreciate everything that you have said about Support Groups and I am looking forward to going in October. I suppose, as Frank was not on treatment, I was like the ostrich – head buried in the sand – but if I'm honest I was scared to go to a group, as I did not want to hear or see what the future held. I'm not very good at expressing what is going on in my head, but I hope you understand what I'm trying to say. I discussed this years ago with Frank and he was adamant that he did not want to go, and I went along with him. I'm in a place now that I need as much information about this disease as I can get.
My best wishes to you
Jean

[petesilverParticipant]

Thanks Tom
Yes it went well for about four years, but we sent out over 80 letters to potential patients but never had any response so the original group was fine but things happen and we were down to four, the thing is it is difficult to ask someone to come along just to 4 people, still if thing improve we may be able to start again….us four will still keep in touch.
The one thing i forgot to say which is most important is partners and/or carers they play an important part as well and the ones that came to our group found it a great help, they are the ones that always take to brunt of it especially when we go under treatment, I know my wife hates to be called a carer she just says shes my wife but when undergoing a SCT it was very harrowing for her as well as me.

Still like you say onwards and upwards

[petesilverParticipant]

Hello Jean
I think that is how everyone feels at first, I have to admit I was same but once you get into it and you start arranging things to do I am sure you will enjoy it

[Author]

Posts