[denisgriffinParticipant]

Hi Steve,

Yes the psychological side can be as tough as the physical. Good advice from Tony as you will find talking with other patients and their families a real help. They have travelled the road you are on.

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

[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 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

[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 Tom,

I'm in remission but still have aches and pains, lower back and rib cage. I've never had any broken bones. They did look closely at the rib cage, MRI and x-rays, some 5 years back but could see no problem. Since then the professionals have tended write it off as growing older or not related to MM. One doctor did suggest there could be minute scratches to the rib surface.
I confess the pain is moderate. I think it's always going to be difficult to prove the exact cause of aches.

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

[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 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

[denisgriffinParticipant]

Hi Jean,

I have Neuropathy, from four years on Thalidomide, I'm not sure it's as severe as Mike's. Neuropathy is the curse from many myeloma treatments. Here is my take on trying to deal with it:

I take lyric (Pregabilin) 2 x 75 mg per, day which helps. it's always worse overnight, so like Phil I wear socks in bed and occasionally use a hot water bottle. Day time, when possible, I find it best to keep on the move. Cushioned socks and trainers are the most comfortable foot wear outside the house. I've been off treatment for a year, so I guess its permanent, very much on the upside I am in my fifth year of remission.

I hope this helps. Would be glad to hear from anyone else on this matter.

Denis

[denisgriffinParticipant]

Good luck Tom,

As others have mentioned the harvesting cells is long and boring.

When you get them back is the interesting part: how do they make it from our blood stream into all the nooks and cranny's in our body, and then get straight back to work? My oncologist told me how but I've forgotten – for me though it's pretty cool.

let us know how the rest of the process goes. The physical side is for the most part beyond us,the Psychological side is another thing, keep thinking there's lots going on inside.

Denis

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