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Documenting not dying since October 2013.

The 26th & 27th; Back to real life, back to photopheresis.

The 26th of May. Back to real life, back to photopheresis. Had a phone call from Sharon this morning to make sure that I was still coming. Daddy took me and we picked up coffee and the paper before going up to level 6.

The ECP area was deserted when we arrived, but I went and waved at Sharon, then a nurse called Laura who has essentially taken Amy's job - Amy's gone to work in the community and Laura's back from maternity leave - came to hook me up.

Finished up about two o'clock, then we went to see Godzilla! It was okay, but I was having tummy twinges so I was a bit distracted by those. Honestly, after my scare while we were away, I am absolutely terrified that the infection is going to re-emerge any day now, and I might have to make some upsetting phone calls. I really don't want to do that yet.

The 27th of May.

Photopheresis day 2. I didn't have to go in until 2, so I decided to work out while I watched This Morning, then ate lunch before making myself presentable and us going out to the QE.

Hospital was much busier today, it not being a bank holiday. I got through in just under two hours which was good! There was a photographer there, taking photos for a patient leaflet about autologous stem cell transplants. Mommy got talking to the woman on the machine about me etc and I put my earphones in because there are some times that I just don't want to chat about myself. She said that she liked my wig and I swiftly corrected her on that. I get really offended if someone thinks my hair is a wig because I can tell the difference and it is obvious when it's a wig because they look wiggy!

Becky came over for a break from report-writing so we gave her the stuff we bought for them in Lyme. I tried to explain the plot of Godzilla to her but I sounded insane.

The 28th & 29th; I want a big sleep and a puffy dog to play with and a hug.

The 24th & 25th; I hate that my lungs don't permit me to fly.