Face to face support groups? What would you like from them?

Hello, we have a local support group for husbands and wives. We all sit in rows and listen to a talk by a visiting speaker and an update from the leader of the group. We have got to know two couples who started going about the same time as we did. It was really helpful for me to talk to other wives in the same boat when my husband was first diagnosed. We have all said that it would be nice to, occasionally, have a his and hers meeting sitting in a circle and not in rows and being able to just chat. We don't go every month because we are trying to move away from a complete focus on cancer and to get on with our lives as much as possible.   From a wife's perspective I really took 'umbrage' when one of the speakers said that 'women don't matter'!!! (I was livid actually!!!) Some speakers are really good but others have been less interesting.

The couple who organise the meetings are very friendly and welcoming. They email each month to remind us of the next meeting and to tell us what is planned. They work very hard for the local charity.

HTH 

Hi Suadade

Same as others have replied - we have a local Support Group that organises meetings. These are often “cabaret style” - where we sit around small tables and chat. Usually the men sit on tables together. I know it’s useful to people newly diagnosed as they get the benefit of others’ experience. It can, as you say, become a bit cancer-focussed and as WW says, at some point most of us want to move on a bit, even if we are still undergoing treatment.

The group has also had some good guests in - we recently had a talk from a consultant who does most of the Robot Assisted Surgery in the area - which was really good.

My wife has recently also started a Partners’ Group specifically for partners / carers etc. of men. That’s going really well. This disease has a huge impact on our partners too and they often have to bear a different but just as heavy burden 

I think you’re right about the local support groups being a bit stuck though - although ours is well established and has done some tremendous work … I’d say they aren’t too interested in doing anything new. So good luck with that!

All the best.

We have a 'support group' once every 2 moths at Ipswich hospital.  To be perfectly honest, the meeting was very informative, with regards to what the hospital was doing and the new resources they were getting (it was a bit like a party political broadcast - 'look at what we've done!'  Whilst being technically informative, it fell way short of what i would expect from a support group in my humble opinion.
I would have preferred a F-2-F group that meets weekly or fortnightly with a speaker who is either on the cusp of going through treatment from a recent diagnosis or someone who is going through their treatment - so, really people that the attendees could identify with. Follow that with people from the floor being able to relate their experiences. Then have a networking/tea break followed by a short talk on latest developments by a medical person and Q&A's.  A local WhatsApp group or/and FB page so, people can catch-up or share their experiences if they're not able to get to the F-2-F group.  I note in the replies that there are some 'men only' groups - i recon that the forum should allow partners to be there too. However, if people are embarrassed about stuff like ED or incontinence - a separate WhatsApp group may be the answer.
OK, that's simply my view.

Thank you for your reply. I am keeping the disucssion open until the meeting in a couple of weeks time (early April 24) and will feedback after the meeting

Hi - I am from the kidney and incurables groups and happened to notice this discussion in the recent updates feed.  
I went to a local group initiated by Macmillan and advertised on here as a "local meet-up in Glasgow".  It was great.  The problems are: 
(a) finding out about it / publicity
(b) convenience,  suitability, geographical reach

(c) times and days - no single day/time suits all.

The positives are: 

(d) the ability to meet and chat with like-minded people in a similar situation as you and bash around cancer-type-agnostic issues

(e) support, friendliness

(f) zero pressure, open discussion

I went to two chats and none were a misery fest, or depressing, or annoying.  But I can see why they are so difficult to get going and sustain.

I went to another local online (zoom) kidney cancer UK meetup for East of Scotland people.   Again, it was fab.  Lots of relevant, friendly and supportive chat in a non-confrontational and non-emotional setting.  I never received notifications for subsequent chats.