The 20th & 21st; I have to be patient.

February 23, 2017 — 1 Comment

The 20th of February. 

I so want to be able to breathe normally again. Or at least, normally for me. To walk from the living room to the kitchen without needing to recover, to not need to spend the first hour of every day coughing up endless amounts of crap. I suspect Andrew won’t be able to get me in next week because he’ll be only just back from half term, so I have to be patient. I am just so tired. 

I spoke to the orthotics team this morning and I’m going in tomorrow at 9.30, presumably to be measured for a sleeve that goes over the hand. 

The rest of the day, I have been waiting around for Mommy to be available so we could bake brownies with the triple double chocolate Oreos in. At one point, we almost got started, then there was decorating chat, then Alison came over, so an hour after going to the kitchen, we began. I made sure we cooked them for the full amount of time, so hopefully they won’t be underbaked like usual. 

Good news! NHS England have announced they “are confident” that funding for second transplants will become available, but this is not yet confirmed. It also begs the question of what the hell has the anguish of the past six months been for? The pressure is not off. 

The 21st of February. 

I think the steroid eye drops are working – I had to wake up at quarter to seven, and it took much less time for my eyes to adjust to the light. Hooray!

Up early to see the orthotics team – Chris is on annual leave this week so I saw Pete, the clinical lead. I explained what had happened and showed him the pictures. He took some more measurements (and was pleased I had worn a jumper with easy arm access), and with any luck, I’ll be able to pick up the new sleeve tomorrow after haematology clinic. 

Before going home, we went into town so I could return the jumper I bought the other day, and I got a birthday card for Mommy. Her present is on its way, so if it arrives in time, I’ll wrap it on Thursday while the dining room is being painted and the fumes will force me to retreat to upstairs  

This afternoon, Daddy and I went to see Hidden Figures. It is really superb. I adored all of the costume, especially Janelle Monáe’s dress at the beginning. Loooove. I read an article about the three women (Katherine G. Johnson, Dorothy Vaughan and Mary Jackson) in New Scientist a few weeks ago, and have been really looking forward to seeing it since then. I can’t believe I did not hear about these women until now. And I am worried that we are going back to the time they came from.

 

One response to The 20th & 21st; I have to be patient.

  1. 

    Brilliant news about second transplants. Well done on raising the issue.
    Please wish your ma happy birthday. ๐ŸŽ‚๐ŸŽ๐Ÿ‘xx

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