[denisgriffinParticipant]

I've just moved back to the UK from Canada this year and now live in Calne Wiltshire. I had my first appointment at RUH Bath in September. I'm a six year MM patient, in remission, but would still like the support given by contact with other patients.
I know there are Myeloma support group in Bristol and Reading. Am I correct that there are no support groups in Wiltshire? If the answer is no I would be interested to have your input on starting one.
The format is a blank page but my initial thoughts are for a patient run group as opposed to one run by professionals.

Denis

[dickbParticipant]

Hi Denis,
My wife and I actually live in Germany and not Wiltshire, but you've picked a nice part of the country to live. As for a support group, my wife and I are members of a group here. They keep up to date with all the advances in science and everyone who attends the monthly meeting gives a run down on their condition and treatment so far. There is always someone who has been through it before. They organise activities such as walking – we live on the edge of national park forest – not the Black Forest. This gives all exercise and a sense of support.

What it doesn't do is help with government admin, e.g, what financial support is available, who local contacts are if we need help, dealing with government bodies such as the German equivalent of DWP, NHS, DLA etc.

Hope that gives a few pointers on what could be useful.

Richard

[denisgriffinParticipant]

Hi Richard,

Seems as if you are a member of a good support group: Updates on medication, social events, a regular chance to talk on how you are, sitting down with people who have 'been through it before'.
The last point is something only Myeloma patients, and their carers, can offer. The bits you mention it doesn't do are the things you can access from professionals as a group or with your family. Speaking of which, having family members in the group is another must.
Well it's just the two of us talking but your tips have been helpful and you've made me think as to what makes a good support group.

Denis

[dickbParticipant]

Your right about family members, for example the group have organised a 10 Anniversary bash in November, there will be guess speakers from the top hospitals here but they have also said that it is for all family members. We are taking our 6 year old along and there will be other children. I also have to bake a cake so I will do a traditional English sponge of course.

Really, we would be lost in so many ways if it wasn't for the group. Go for it, you have nothing to lose.

[JacquieParticipant]

Hello Dennis

My partner Geoff has Myeloma had his SCT in May/June this year. He is currently in full remission. We live in Gloucester not too far from you! Did you know that there is a Info Day this Saturday in Bromsgrove? this is the nearest annual info day to us, we went last year and it was good to meet others with Myeloma. We are going again this year.

regards

Jacquie 🙂

[denisgriffinParticipant]

Hi Jacquie,

Thank you for letting me know about The Info days. I was unaware, but have checked out the details on this site. Not able to go this weekend but will lookout for future dates.

Glad that Geoff is doing well.

regards

Denis

[denisgriffinParticipant]

Hi again Richard,

I'm sure no matter how many people I contact in my quest for support group members, I'm unlikely to talk with many who have a six year old child.

There is however a lesson here; never make assumptions about myeloma patients.

Richard, my very best wishes to you and all your family.

Denis

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