I am going to do the Manchester 10k run on Sunday 20th May and I hope to raise money for Myeloma UK, the only UK charity specifically dealing with Myeloma.
“Myeloma UK informs and supports people affected by myeloma and helps improve treatment and standards of care through research, education, campaigning and raising awareness.”
It has been invaluable for me and my family. They organise info days, arrange local support groups and host a discussion forum for patients and carers. They also have a specialist nurse available to talk to about any aspect of your illness or treatment.
I did the run in 2009 to raise money for Mind after a close friend of mine who had been struggling with mental illness for some time took her own life, but then I was relatively fit. I found the training for it, those runs in the wind and the rain over the winter months after she died a useful tool for dealing with my grief and shock.
3 years on and I am running again (well hardly running, jogging slowly is more accurate at this stage!). This time around how different life is for me. My friend’s suicide was the toughest thing I had dealt with so far, it was certainly the most difficult, saddest and most shocking event up till then in my relatively emotionally stable world.
Now what am I running for and why do such a physically demanding activity (for someone with myeloma), only 8 or 9 months post stem cell transplant?
I am not entirely sure but it is something to do with wanting to be free, in control of my own body and mind and I know it has so much to do with wanting to be normal, back into the life I had. Doing the 10k would prove to me and the world that I was ok, not a myeloma sufferer, not a patient or somebody with cancer. The reality is that I will always be that because a relapse is inevitable as myeloma is currently incurable, I just dont know when that will be. I got a harsh reminder of how fragile my remission is when I read about the Basil Skyers Myeloma Foundation
The Basil Skyers Myeloma Foundation is run entirely by volunteers and was established in memory of Basil Skyers who died of Multiple Myeloma on August 2, 2010. The charity aims to provide support of a non medical nature for people living with Multiple Myeloma, and to raise awareness about this condition.
Basil was diagnosed with Multiple Myeloma in 2008. After receiving intensive chemotherapy and a stem cell (bone marrow) transplant, Basil was actively supported by his family, his employer (Dixons Retail PLC) and his friends. The support provided to Basil fitted with the rhythms of his changed life by taking account of the physical aspects of his condition, and the social implications of his absence from, and his subsequent return, to work.
Whilst Multiple Myeloma is the second commonest form of blood cancer of which there are 4,000 new diagnoses each year in the UK, often the first family, friends or colleagues hear the words Multiple Myeloma is, as in Basil’s case, at the point of diagnosis.
It is a devastating illness that attacks the blood plasma cells and bones, causes intense pain and major problems with mobility and dexterity. Due to red blood cells in the bone marrow where blood is produced being crowded out by cancerous Myeloma cells, extreme fatigue, breathlessness and confusion are common features of the condition. There are a number of treatments for Multiple Myeloma but currently, there is no cure and the average life expectancy from diagnosis is between 3 to 5 years.
The average onset age for Myeloma is 60+ but that picture has begun to change dramatically in recent years, as more and more young people in their 30s and 40s, like Basil, are being diagnosed with this condition.
I have more or less quoted verbatim from the website because it describes so well the nature of the disease and the impact that it has. I felt scared and depressed reading this, this guy was younger than me when diagnosed, has had the same treatment as me and died two years later. How can life be so unfair? Rationally I know, as I am always being told, that the disease is so individual that I cannot compare myself to others. It seems that with any cancer there are degrees of unluckiness (fairly bad,bad,awful,worst etc etc) but I have already survived the bottom range of the survival statistic ie the 12 month to 5 years one that I was given upon diagnosis.
Am I lucky? I dont feel lucky and I dont feel like some people in remission seem to ( the glad to be alive, jump out of bed with joy brigade) but I do try to find something in each day to enjoy or to appreciate. Today it was seeing the David Shrigley exhibition in London, some of his drawings and cartoons made me laugh out loud, then coming back on the train, seeing the last of the snow on the fields, gazing mindlessly out of the window and tonight going to a friend’s for a roast dinner so just for today, life is good!