The 18th & 19th; Happy marrowversary to me!
The 18th of December. Well, today has been much less great than yesterday. At about half past midnight, my breathing suddenly became much more laboured and I needed to use the oxygen to be comfortable. Combined with the pain I'm still suffering in my feet and ankles, I didn't fall asleep until half past four, and I was awake again just after six.
I'm also concerned about my mouth - it's just starting to break down in my cheeks, plus a teeny ulcer on my tongue and sore lips. We rang the dental hospital to see if Mrs. Richards could see me as an emergency appointment in case she thought I needed a steroid injection. They were really brilliant and got me in to see Jon Higham who I've seen before while there was no one else around. He could see what I meant but didn't feel injections were necessary and might even be detrimental. We're going to hit it really hard with topical steroids, plus I've gone back up to 5mg of pred. It's fine; I'd rather have it all under control over Christmas.
We went to the QE for ECP afterwards which was all fine, and Igor sent an SHO to come and see my elephant feet. Everyone agreed that my oedema and breathing can't continue, so they've given me a new drug regime and I just hope it works!
I would like two things for Christmas - to have normal sized feet and to be able to eat the foods!
The 19th of December.
Happy marrowversary to me! Today is seven years since my first stem cell transplant from Christine. I got a penguin charm from Pandora, and Christine is the big penguin and I am the small penguin!
I had my fringe trimmed at Bad Apple at lunchtime so I took them a Christmas card and a copy of Grazia. Michaela really liked my fringe in the photo so cut it like that and took a photo. Then Amy was free and I got her to paint a couple of Christmas Minions on two of my nails which are awesome. Then Mommy came to get me and we had lunch at home before Naomi came!
She and Mommy used to work together at the Hippodrome and have stayed friends and she's just lovely. We haven't seen her for ages so she came over with lemon drizzle cake, flowers and presents and we had a long-awaited catch up.
Just after she left, I saw on Facebook that a little boy we know is getting a new liver and bowel tonight! He is in theatre as I write and it is just wonderful. An incredibly kind family have made the brilliant decision to allow their loved one to save someone else. Life is blindsiding and magical.