The 25th & 26th; I have clinic with Ram on Monday and it is not going to go well.

June 27, 2014 — Leave a comment

The 25th of June.

Four o’clock this morning. I think when people ask how I am, I will start responding with the time I woke up. I listened to two Josh Widdicombe podcasts and did some sudoku to kill the time until seven when I got up. I wrote up a blog post and had some breakfast and coffee. Then I worked out during Jeremy Kyle and This Morning while Mommy took Grandma to Sutton.

I kept getting interrupted! First, a delivery, then a guy offering tree surgery, then the postman, then the phone! I was just like CAN WE NOT PLEASE?! I do not love answering the door all sweaty and disgusting.

When I was done, I had a really long, lovely, pampering shower. All clean and scrubbed and shaved, then moisturised and prettified. I felt super-cute about myself this afternoon.

Mommy and I watched the last two episodes of season 9 of Criminal Minds and it was so dramatic and stressful! We get far too involved.

Tonight the winning category of the Longitude Prize was announced and it’s antibiotics! I was so happy that I cheered and punched the air. In the future, people in my position with antibiotic-resistant bugs won’t have no hope.

The 26th of June.

A day of ups and downs. Starting with downs. I was awake at three, again at half four and by five I was wide awake. Listened to podcasts, got up just before seven.

My plan this morning was to ring the QE to find out what was going on with my new line, and basically the photopheresis team know nothing and will do nothing. Apparently they were going to offer me the 4th of July, but that is the date we go away and they knew this. As soon as I hung up, I burst into tears because I am so tired and stressed. Mommy rang Ram’s secretary, who spoke to him, and eventually I had another phone call from the photopheresis nurses saying sorry, there’s nothing they can do, the line people just can’t fit me in and the fact that I won’t have had photopheresis for two months by the time I do get it at the earliest, despite a very recent GvH flare, isn’t important and nobody cares. I have clinic with Ram on Monday and it is not going to go well. Peter Taylor would move heaven and earth to get me a line if it were necessary.

So after all that, I was really happy to go and see Fiona, Nick and baby Phoebe! She just slept in my arms and I couldn’t stop staring at her; she’s gorgeous. I can’t wait to see her again when she’s more awake!

This afternoon I read The Farm in its entirety and iced some cupcakes for Alison to take to school tomorrow.

I am just a wreck.

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