Friday, April 24, 2009

Myeloma support group

Being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
My first visit to my myeloma support group was a revelation to me. At first I thought I was the only person in my city with this rare disease. To enter a room to be with a group of others with the same disease became overwhelming.
My new myeloma friends were talking about symptoms, bone pain, conditions and health problems that I was experiencing. Heads were nodding with acknowledgement as I explained my symptoms. They all knew what I was talking about. I was accepted as one of them. I felt normal.
Leaving that first meeting I felt a calm satisfaction that I had found some good friends with the same disease and a support system. It suited my approach to my way forward and has been an important part of my survival.
My support group has given me companionship and knowledge. The guest speakers have been informative. Listening to others pass on their story has given me a better understanding that myeloma is not the same for everyone. We may have the same disease; it effects us in different ways.
That’s why I say “my illness, my body, my treatment”.
Our caregivers are not overlooked, where would we be without them. They are welcome to come along to participate and support each other.
A down side to my myeloma support group is we are all living with multiple myeloma, a disease that has no cure. It can be treated and progression slowed down. Eventually most of the group will die from its effects in some way or another. I can’t hide from that, its reality.
When the first of my multiple myeloma friends died I was devastated. How I coped and what I learnt will be in another posting.
I do acknowledge that support groups are not for everyone. We all have different personalities, a different approach to life and to survival. Freedom to make our own choice is a fundamental of a free society. My choice is yes, a support group is what I want.

My myeloma support group is run by the Leukaemia and Blood Foundation (NZ).
Free phone 0800151015. (New Zealand)
More about them in a later posting.

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