It is 7am and I am up far too early for my liking, with T shirts on the brain, as at the moment I seem to live, sleep and eat T shirts! Things are going really well, but there still feels like such a long way to go, which is slightly concerning as we are hoping to launch first week of March (eep). It seems to be weird things that are taking up the most time; who would have thought for instance that there was so much to chosing an actual plain T shirt? There are hundreds of them, all different makes, sizes and prices, and it has been a rather complex task to chose our final Ts! Emmie, my "co-pilot" of the project, brought her dog daisy with her last week, who got terribly over excited and helped us by intermittently sitting on T shirts and then running around knocking things over with her enthusiastically wagging tail. After an hour or two she wore herself out and fell asleep for the rest of the afternoon.
However just when I am flagging, as admittedly I was last night, I get another harsh reminder of why I am doing this. My friend Chloe, who was just 19 lost her battle with Cystic Fibrosis on Tuesday night. Chloe was a lovely warm, friendly clever girl, she wrote the CF definition on mine and Gaz's site. She had been waiting for a transplant for nearly 2 years, and it just never came. It is another horribly real reminder of why I am doing this; there is a chronic shortage of organ donors in this country and I am sick of my friends dying. Not to mention that horrible cold realisation that grips my stomach when I remember that my time is also running out.
On February 17th, it will be a year since I was given about a year to live. I am actually looking forward to it, as I feel it is a positive marker, I am obviously still so much more well than they anticipated, so I think it will be a time for celebration, of achievement of cheating CF for just that bit longer. And the longer I can fight it, the better my chances of getting a transplant. And in the meantime, watch this space for the launch of the live life then give life campaign...
Update to say there is no update!
1 week ago