Testimonial for the North Manchester and Bury Myeloma Support Group March 2009

Thanks to Bryan Sayle for sharing his experience of Myeloma  

When I was first told that I had Multiple Myeloma and that it was treatable but not curable, my first reaction was, at last a diagnosis and now can we get rid of this pain. Like most people I had no idea what Multiple Myeloma was, so I started to
try and find out, what I could about the disease.

With the help of the excellent booklets provided by the hospital, and
research on Wikipedia done by friends, I was able to answer some of my queries.

When I was well enough to leave hospital I was given an introductory leaflet for the local Myeloma support group and looked forward to being fit enough to attend a meeting, meet fellow sufferers and perhaps learn more about my condition from patients who had been there and got the T-shirt.

The surprising thing about my first meeting was seeing all these cheerful, friendly people and not a “sufferer” amongst them.
I noted that like me the majority had an obvious kyphosis,
which made me wonder, why? Did we enter hospital with it or develop it later,
if so, is anything done to prevent it developing? It is my worse source of discomfort and I wish it hadn`t happened. I`ve still to ask fellow members of the group their opinion on this.

At each meeting I`ve been able to aquire more and more information. Some from the speakers some from the many booklets and leaflets available, but mostly from chatting to other “sufferers” not least the fact that I may be too old to have something really nasty done to me.

Even if that is not true, the cheerfulness and forebearing, of members who have gone
through such regimes, makes one think that the treatments can`t be all that bad. The worst thing apparently is trying to park a car at Christies Hospital.

One`s appointment with the consultant is often too hectic to get the opportunity to find out if the symptoms one has are unique in any way. (That is if one can remember to ask the questions.) It would be nice to find out if others endure similar problems and if any remedy they have tried had worked.

It is the opportunity to finding an answer to some of these questions that the Myeloma group and others like it are so useful. I look forward to the next meeting when I may learn something more.

Bryan Sayle.