Archives For marrowversary

The 30th of July. 

Not quite one’s average Sunday. The morning was fairly standard – Sunday Brunch, blog post. This week’s comedian pal appearing on the show was Joel, who ate some chips in order to make Nish lose a wager. 

After taking Grandma home from church, Mommy and I went into Sutton to get Pandora charms for today and August. I also got a chocolate dreamcake Krispy Kreme because it’s a day to celebrate. In the end, I went for the anchor charm at Pandora, because they describe it as the “symbol of hope” and hope was all we had at that point. My chances were 20% of 20%, which works out at 4%, and yet somehow, nine years since my second stem cell transplant, I am still here. 

When we got back, we had lunch, and I spoke to a girl who is interested in adopting Betty. She actually happened to be very near my house when we talked, so she came round straight away. Betty was her usual charming self, coming straight up and purring away like a champion. It seemed to go well; she’s gone away to think about it and fingers crossed she wants her. 

The 31st of July. 

My brain was very busy in the night, dreaming about all sorts of things. 

This morning, I worked on the panda head while communicating with Philippa to find out if James had sent my referral to the lymphoedema clinic. She said it had definitely gone, so then I rang the clinic who confirmed that they’d received it, but I won’t get an appointment until October! SIGH. I’m going to have to find someone else to see because I can’t do nothing for another two months. 

After lunch, I went up to the QE to see Dean. He was starting his chemo today so it was a good day to go before he starts feeling too ghastly. Although he wasn’t feeling wonderful today, bless him. Issues with chemo timing hadn’t helped, and pharmacy were being dreadful – his chemo was meant to be at one, but it still hadn’t appeared on the ward when I left at twenty to five. He is taking his mum to see Miss Saigon tonight and I really hope they got there because he’s been looking forward to this for ages. It was nice to meet his mum and younger brother; I have heard much about them so it was nice to have faces to put to names. 

Tonight I’m off to Denise’s for a Cats Protection meeting to try to work out what we’re going to do about homing. 

The 19th of December. 

I am quite pooped from all the Christmasifying. It feels like I have been doing jobs all day. All for a good reason though, so I don’t mind at all. 

During Sunday Brunch I tidied all the area around my armchair in the living room (I tend to spread myself around). I was then supposed to sort out my wool and the remaining snowball hat, but Mommy went out so Daddy and I ended up in a rather long conversation about her presents, and before we knew it, it was lunchtime!

Cheese on toast, then I made up the last large snowball hat. I had to invent a pattern because I didn’t like the one supplied; it looked ridiculous. I did it as fast as I could but it still took me a good hour and a half. Daddy out the lights on the tree (after great discussion about which ones we had last year), and I put Elf on and set about decorating. The tree is my domain. Memories of the years I’ve felt lucky to have – a Disneyland bauble, Harrods and Liberty ones, my little yeti man with his special arm that I bought in November. Now I’ve just got to add my presents underneath.

And today is the eighth anniversary of my first stem cell transplant. I think I’ve run out of words to describe how incredible I find it that I’m still here. It feels like another lifetime. I spent that Christmas in an HDU cubicle. I woke up alone. All my presents had to be alco-wiped, and I remember Mommy and Christine sneaking in a Dairy Milk Buttons ice cream that I wasn’t supposed to have because of the “clean diet”.

Happy Marrowversary to me!

The 20th of December.

Oh I feel so festive. A day of total joy. Becky and I started the day at The Electric Cinema, ready to watch The Muppets Christmas Carol in our Christmas jumpers and sing along. Before it got started, there was a game of the pass the parcel and we won one! An R2-D2 book of cardboard cut-outs that you put together, and the Spongebob DVD. I also got some colouring pencils which might come in handy, you never know. There was a short film before the main event, of various comedians and actors singing to It Feels Like Christmas, and it was lovely. 

There is not much to say about the actual singing apart from that everyone took part with great gusto and we left full of cheer, ready to spread the word about peace and to keep love alive. 

Becky popped in to say bye to Nick, and I gave her the small snowballs for Jonathan and the Christmas card for her and James. After lunch, I watched Rise of the Guardians which is delightful; I love the Sandman. I’d brought my presents downstairs so I’ve arranged them under the tree, then I went to see Nick for a bit. We were having a perfectly nice time, catching up on Jekyll and Hyde, until he decided to do the most appalling, sulfurous fart, I was forced to leave. 

Tonight, The Sound of Music! I can’t imagine I’ll fit much tea in – I had some chocolate buttons this morning which have been abnormally filling? Even after I didn’t finish my breakfast bagel having choked on it (again). 

 

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. 

The 31st of July. Happy Marrowversary to me! Six years ago today, I had my second stem cell/bone marrow transplant from an anonymous German chap, only a year older than me. I don’t know how I feel about it now – yes, he gave me all the GvH that destroyed my liver, but without him, I may not have even got there. I do wonder sometimes if he remembers, if he thinks about me at all. This morning I worked out which felt great except at the end when the postman arrived and I had to answer the door all sweaty with my hair scraped back, such an attractive state. I did say “You could not have come at a worse time’! Mommy washed my hair, then we went out for lunch to celebrate my marrowversary! We went into Pandora to get the charm that is customary on these occasions. I got the passport, as we went to Paris right before my second transplant. We went out to The Balcony Brasserie in Selfridges, where we shared the charcuterie and seafood boards with some peas and broad beans, then Mommy had lemon meringue pie and I had Oreo cheesecake and a virgin apple mojito. Then I bought myself some nail varnish, masara, aloe vera gel (not such an exciting treat) and we came home! We watched some tv and ate a hot cross bun each, then went to pick up Daddy from work before going to see Wicked! It was fun, although it brought back loads of memories of when Lauren and I were supposed to be Elphaba and Glinda, just before I relapsed, and I may or may not have wept at For Good. I had such visions of us both singing that together and we never got the chance. Despite the family behind us have zero theatre etiquette skills whatsoever, I’ve had a wonderful day. The 1st of August. Well I am so tired, I tried to eat a chocolate mousse with a fork tonight. It would have worked, but taken an awfully long time. Also, one night of bad sleep and the trembles are back with a vengeance. Spent the morning waiting for Katie the nurse to come and flush my line and change my dressing, although she did it so dreadfully that we had to redo it after lunch. When she was gone, I worked out but not particularly efficiently. Not sure what was off with me today. I caught up with Utopia, Mommy and I finished the series of The Biggest Loser Australia, and I wrote up a blog post. Oh, I’m so tired. I don’t like today and would like to go to bed please. Which is such a contrast to yesterday. My skin is so sore. photo 1 photo 5 photo 3 photo 2 photo 6 photo 7 photo 8 photo 11 photo 12 photo 13