The clinical trial
I've just returned from my trip to Austria and now I'm taking part in a clinical trial at the city hospital. It's run under the umbrella of Simon Rule's centre of excellence at Plymouth Hospital. He's one of the leading figures in the research into mantle cell lymphoma.
I decided that since I'm supposed to be so rare and that I'm not receiving any treatment yet, that I should do what I can to help with this research. So, I ended up at the city hospital, sitting in a lovely comfy chair, spitting into a glass and giving blood into lots of different phials! Apparently, most people take ages providing a sample of sputum. Not me! It must be because I'm always talking!!!
I asked the lymphoma nurse in charge of the trial if she had any ideas about my allergic reactions, particularly to insect bites. She suggested I get my GP to contact a consultant she knows at the hospital who might be able to help.
As I was leaving the hospital, I felt for the first time that I was finally doing something positive about my condition. These samples I had just given may help with the research and possibly a cure.
Having this disease certainly puts life into perspective. All my life I have looked after others, sorted out their problems and put them first. Well, now I'm not. I'm going to look after myself, think of me first before I agree to do anything and do what I want for a change. I'm going to travel as much as I can and make lots of memories for when I can't.
I've planned my funeral - tentatively! I know what I want and where I want it. I've sorted out the music - no hymns! I've even got the order of service ready, it only needs dates adding then printing.
I've got a plan of action for the house, I need to do all the interior decorating, so that it will all be fresh and clean. Hopefully I'll even be able to do it all again in about five years, God willing!
I understand more now about when relatives sudenly had clear outs at home before they died. They somehow knew what was going to happen and didn't want to leave that sort of stuff for family to have to do, less work for them. Well, I'm gradually doing that now too! BUT, the big difference is that I don't plan on going anytime soon - it's an excuse to get everywhere tidy!!
I decided that since I'm supposed to be so rare and that I'm not receiving any treatment yet, that I should do what I can to help with this research. So, I ended up at the city hospital, sitting in a lovely comfy chair, spitting into a glass and giving blood into lots of different phials! Apparently, most people take ages providing a sample of sputum. Not me! It must be because I'm always talking!!!
I asked the lymphoma nurse in charge of the trial if she had any ideas about my allergic reactions, particularly to insect bites. She suggested I get my GP to contact a consultant she knows at the hospital who might be able to help.
As I was leaving the hospital, I felt for the first time that I was finally doing something positive about my condition. These samples I had just given may help with the research and possibly a cure.
Having this disease certainly puts life into perspective. All my life I have looked after others, sorted out their problems and put them first. Well, now I'm not. I'm going to look after myself, think of me first before I agree to do anything and do what I want for a change. I'm going to travel as much as I can and make lots of memories for when I can't.
I've planned my funeral - tentatively! I know what I want and where I want it. I've sorted out the music - no hymns! I've even got the order of service ready, it only needs dates adding then printing.
I've got a plan of action for the house, I need to do all the interior decorating, so that it will all be fresh and clean. Hopefully I'll even be able to do it all again in about five years, God willing!
I understand more now about when relatives sudenly had clear outs at home before they died. They somehow knew what was going to happen and didn't want to leave that sort of stuff for family to have to do, less work for them. Well, I'm gradually doing that now too! BUT, the big difference is that I don't plan on going anytime soon - it's an excuse to get everywhere tidy!!
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