The downs being my photopheresis treatment. I have this, for two days every two weeks, as part of my treatment for Graft v Host Disease which is affecting my muscles, and my ability to move properly. It involves being plugged into a machine for up to four hours. My blood is then treated under UV light and given back to me.
These days are very tiring, as they involve travelling into London, having the treatment, then travelling home. The same again the following day. Unfortunately like a lot of cancer patients I have poor veins and they can't seem to find any productive ones in my right arm so my left is used continously and sometimes closes up so I have to go back for a third day!
Still this treatment, along with a combination of other drugs is helping me live a reasonable quality of life.
My ups have been fantastic, as I have been filmed for a Channel 4 programme which is starting on March 5th, called ' You Deserve This House'. It is presented by the amazing Amanda Lamb.
I am involved with various organisations as a volunteer and I was nominated for a spa break and a house make over. This was all a surprise and had been coordinated by my wife. I have been busy since then, as word has spread.
Coming up this week I am @ Macmillan h/o, helping volunteers and have a meeting @St Georges, working with the hospital management to improve facilities for cancer patients.
With constant unreliable health, it is difficult to make regular plans, but wherever I go people understand my situation and we try and work round it.
Please feel free to share your story. This is a place where we can all work together and help each other. There is no need to feel isolated and afraid. Come and join Chris's Cancer Community, where we understand, and tell it as it is. Things can be difficult and I don't want to hide that. But there can also be some positives if you look.
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