In one of the stars I shall be living.

View Original

The 8th & 9th; What I've got to say might still not be enough.

The 8th of February.  I could write about what I've done today but it really is no different from any other normal Sunday. The piece about me in the Sunday People has gone up today and I've had a lot of new followers and nice tweets from people. 

They're all very kind and sympathetic, but it's not exactly what I was hoping for. Sure, it's nice, but it's not necessarily names on the lists. Every day I hear another story about someone losing hope because there isn't a match for them and there could be, but that person hasn't signed up. I feel like I am desperate to get on This Morning just to reach the widest audience. My followers tend to be of a certain demographic and there are people I will never reach no matter how much I tweet. I just need to know I've done something, that I've made a difference. Since I no longer have a future of my own to plan for, my sole purpose is to try to save other people and their families having to go through what we are. Even if I get there, if I'm on that sofa speaking through the screen and nothing happens, I don't know what I'll do. Will it just be another little boost like the rest or might I make a difference?
Since I started writing this, Philip Schofield has started following me on Twitter. Part of me is really happy, and another part doesn't know what to say. If anything, I'm even more worried because I'm no longer completely under the radar, but what I've got to say might still not be enough. 
 
The 9th of February. 
A good, long sleep thank God. Got up at quarter past ten but I've just felt kind of listless all day. I've been talking to Julie and other journalists on and off, people seemingly organising things for me in what is shaping up to be a busy week - liver clinic on Wednesday, lung function tests, respiratory clinic and photopheresis on Thursday, then photopheresis again on Friday and Josie Long on Sunday! Busy busy. 
This lunchtime, I went to the chiropractor for the first time in three months so as Trine said, I was "completely solid". I have been incapable of standing up straight in the mornings because I am so stiff. 
This afternoon I have been finishing Simon the Sheep's woolly coat, and he's now finished! Sheep are going to be quite time-consuming but he does look pretty good. He is going to live with Robyn, Stu and Herbie. Grandma wants a pink bear so I've started him now.