[denisgriffinParticipant]

How many of us are out there?

I’m targeting Myeloma patients in my area with the aim of a new support group, So I got thinking as to how many Myeloma patients are living in Wiltshire right now? I googled to find out, but a straight answer was not forth coming. Perhaps someone can help me here?

I did discover there are 5000 new cases in the UK each year coupled with some 2500 deaths. The latter is not good news but fortunately they are not the same people and death comes to all of us even if you don’t have Myeloma. I’ll spare you the rest of my calculation but I ‘estimate’ there are some 14000 people in the UK living with Myeloma. So with 63 or so million who live on these Islands we are a very small group. This would be true even if my guess is out by a wide margin!

With less than half a million inhabitants in Wiltshire there will be 120 or so Myeloma patients and just two or three in the town in which I live!

You’re probably thinking we already know that Myeloma is a rare cancer and we would like it to be even rarer, so what is your point?

It shows Myeloma has the potential to be a pretty lonely place. It does make my quest more difficult but increased support can only be a plus. so please pass on my message.

It’s good that we have this site and Myeloma UK to bring us all together no matter where we live.

Denis

[tomParticipant]

Hi Denis

Well am from Scunthorpe so you will be too far from me but am sure your working out will be correct am afraid.
You could open a new thread in general like Dai did once Re Where are You, then we could let everyone know where and when.
Good Luck with it Denis

Tom Onwards and Upwards

[Anonymous]

Hi Denis
I am from Somerset, but work in Mere, Wiltshire.
It would be interesting to see how many are from around here.
Ann
X:-)

[petesilverParticipant]

Hi Dennis
There are more than you think but it is difficult to get patients and/or there other half or carer interested in a support group.
I come from Exeter and a staff nurse started a support group in 2004 which I joined and in the beginning we had quite a few members and we did many things had talks by various people, did some practical things like painting (our effort in hanging in the waiting room in Haematology) although we discussed treatment we were on ect we never dwelt on it we also use to go go twicw a year for a meal together.
However it seemed almost impossible to encourage any new member to join our group, I think when you mention support group people get the wrong impression of what we were trying to achieve.
Unfortunately due to things beyond our control membership diminished and in 2011 we had no option to suspend the group as we only has three members left. It was a great pity as I felt we all got a lot out of it including some new friends who we still try to keep in touch.
My opinion is that newly diagnosed patients are afraid for some reason of what they might find out, but it was not like that and it was enlightenment to chat to other people because you then realise that myeloma affects everybody in different ways and treatments were different.
Sorry I could go on and on about our support group as I thought is was of the greatest help in going through a difficult time.
sorry for the long diatribe
Peter 🙁

[denisgriffinParticipant]

Hi Tom,

Thanks for your reply and your kind wishes. I've noted you're informative and positive comments on many topics. I'm sure you would make a great support group member. Shame you don't live closer.

I have been putting fliers on community notice board locally. My numbers show this is a bit of a long shot.

So plan B is to be more focused and put a flier on the notice board in the Oncology clinic at RUH Bath, will do the same for the Swindon hospital. I'm midway between the two in Calne.

Denis

[denisgriffinParticipant]

Hi Peter,

No need to apologize your reply is interesting. Like you I found a support group very helpful. I was in a successful group in Calgary Canada for the last five years. Some lived an breathed it, others came occasionally, it seemed to work for most. One advantage for Calgary it's a smallish city(Pop 1 million) and we all attended the same hospital. I never though I say this of the UK, but outside of the big centres, are we a little too spread out?

Denis

[petesilverParticipant]

Hello Dennis
Well the Royal Devon & Exeter Hospital covers quite a wide area the pop. of Exeter alone is about 118,000 but people just get the wrong idea about a support group, we had great fun and friendship we had our sad moments but that's life and one has to remain positive even when going through a difficult period as we all have We know MM in incurable but with all the new drugs coming on line they are helping to keep as going.
Sorry here I go again.
Regards
Peter

[alpenatorParticipant]

Is there a support group at your hospital; or could you start one with help from Myeloma UK?

There is one at my hospital, Queens, Burton, but it doesnt meet very often.

[denisgriffinParticipant]

Hi Ann,

I have made some progress on a support group. It’s to be based in Bath, that where I receive my treatment.
We are having the first meeting in Feb, the nearest contact to Mere I’ve recieved is for Beckington, Somerset.

Denis

[denisgriffinParticipant]

Hi all,

I have found the answer to my question, its 160!
That is the number of letters that have been sent out from RUH hospital Bath to promote our first Bath Myeloma Support Group meeting.
This is the number of myeloma patients in their catchment area, which includes areas in Wiltshire and Somerset. Our first meeting is on Feb the 12th. I must thank the health care professionals at RUH Bath for their initiative in wanting a group and for supporting me to this end.
As ever Myeloma UK has been a great resource.

Denis

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