Archives For feet

The 24th of December. 

I am quite the walking disaster zone. When I do walk, anyway, that is to say my feet feel like they’re covered in blisters, so putting any pressure on them is horrific. For a while this afternoon, I put them in a basin of cold water and briefly, they were soothed. The skin on my back and chest has been so itchy, I’ve been rubbing up against things like a bear, and my tongue is developing ulcers like nobody’s business. I’m doing mouthwash and spraying them with steroid but I’m not sure it’s having the desired effect. The torso rash could be explained by the antibiotics, and i finished them this afternoon, so by tomorrow evening it should have calmed down if it’s going to. If things continue though, I’ll be going back on steroids. 5mg to start with, and I’ll have to go back to hospital so we can come up with a proper plan. Just what I wanted for Christmas, the return of the desire to commit suicide. 

So I’ve done fuck all, just trying not to think about all the different forms of pain I’m feeling and focus on having a happy Christmas. Even if we all feel like shit (except Mommy, pray it stays that way), we will have a nice day. We are having the first fire and it doesn’t seem to be making my cough worse, not sure about anyone else, but hopefully we can keep them going this year. 

The 25th of December.

Merry Christmas! Mine started with being woken up by Mommy because everyone else was awake and Christine was starving. I got up as quickly as possible and padded down the stairs, wincing at every step. My feet are agonising all of the time – I think the last time they hurt this much, I was on cyclosporine. 

We had our traditional Christmas breakfast of bread, eggs, cheeses, meats, game pie, plus all of the condiments. I had a breadbun so floury, I had to be vacuumed. Covered, I was. 

Back upstairs, Christine and I opened our stockings. Mine contained some touchscreen gloves, tissues, a little Lindt bear, a Hotel Chocolat star containing chocolate snowflakes, a maze puzzle/game, Lulu Guinness vaseline and a Christmas tree brooch that should flash but doesn’t. Never mind. I put my Self-Portrait dress on with leggings, my cashmere socks and massive cardigan (to accommodate my arm) so I was working a very glam/cosy look. 

Mommy went to pick up Grandma, and when they returned, it was present time! I did not partake in the champagne drinking because that would only make my mouth worse, so everyone else had some while I distributed the presents. I hadn’t realised quite how securely I’d wrapped my presents so it took people a little while to get into them. Then again, that just made it last longer. I was given the Mrs. Christmas Pandora charm, a voucher for Wool Warehouse, a bag of Jelly Babies, some coffee beans, more Bucks Fizz marmalade, all the books I asked for (The Girls by Emma Cline, Where Am I Now? by Mara Wilson, Playthings by Alex Phelby and Hard Boiled Wonderland and the End of the World by Haruki Murakami), a book about the art of The Little Price film, a Moomins calendar, two Essie nail varnishes, The Little Prince Moleskine diary for 2017, some thermal tops and socks, some very soft and cosy festive lounge trousers, and a mug and bowl with kitties on. Then Mommy and Christine went to finish the cooking of the dinner, and I looked at my book about The Little Prince. 

I ate my lunch rather slowly, having to chew on only one side of my mouth, but I did not finish last because I tend to have less than other people. We had a little rest, then pudding. Mommy had made me a chocolate mousse, and that was much easier to eat. 

After lunch, we decamped back into the living room, where we started the fire and I put my feet into a bowl of cold water again. I cannot describe how painful it is – like knives in my feet, all of the time. The steroid cream on its own is not working, so I’ve started back on 5mg of pred today. I’m going to get a moon face and become incredibly depressed again, but we don’t have a choice. 

We watched Christmas Bake Off, then the Easts came round for Doctor Who present swap. Becky was very pleased with her “Go away, I’m marking” mug and Toft teddy bear, and I got a ten pack of Paintbox wool, so I can make many colourful things. 

We had Doctor Who on pause for nearly an hour before getting it started, so when it was finished, they returned home to do their final lot of presents, and we settled in to watch Strictly with Christmas cake. 

It may not have been the perfect Christmas, with 3 of the 5 of us being ill (4, if you include Grandma’s general difficulties), but we are all at home and together, and that is what is most important. 

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 16th of December. 

I had to have another Zopiclone night because my brain was too excited about Lauren and Grazia today! 

So obviously the first thing I did this morning was to go round the corner and buy all the Grazia! Well, we bought three. Had to leave some behind for other people to buy! Mommy read it and had a tiny cry so I smushed her and pretended to be a penguin. 

Lauren came round at half twelve for pizza and The Grinch! We put her vegan pizzas in the oven and I ordered Domino’s and it was delicious. I gave her her scarf and it swamps her but that is what she wanted so that’s good! Her mum had bought me a Hotel Chocolat Christmas Sleekster box, and Lauren had made me gingerbread so I’m definitely going to be starting on the winter bulking! All the foods. 

When Mommy came home from Grandma’s, we went through the photos Grazia sent so I’ll post my favourites at some point. Then it was time for her to go! We had lots of hugs and it was so good to see her, my lil sis. 

The 17th of December. 

Today has been really pretty great. Christmas music in the car on the way to the QE which is always a good way to start the day. Then some twitter magic happened in that someone my my mum was friends with at school and still sends Christmas cards to had a daughter who went to school with Josie Long and in short, she’s going to come to my house to do a private gig in February! I was sat in photopheresis, grinning insanely. People are great. 

This afternoon I have been wrapping all of the things! Well, I wrapped Mommy and Daddy’s presents. It took the entirety of The Polar Express and a little bit longer. I love that film -it is one of my few good memories of ward 8. I stopped at about half past five, by which time my ankles and feet were really swollen from the amlodipine and extra fluid you get given back during photopheresis. 

Tonight I went to Miller & Carter with Becky for festive food and joy. There was only one problem – none of my shoes fit me because my feet were so enormous. I wore Mommy’s size 8 boots when I’m normally a 6/7. The skin is so stretched, it’s so painful. Anyway! The food was super tasty and we were defeated – couldn’t even finish our main courses! 

When we got back, Hamilton decided to be a gladiator! I filmed him and added the Gladiators theme tune. It’s probably one of my greatest achievements.  

 

 

 

 

The 11th of February.

4mg of steroid! In three weeks, I should be totally off them. Ahh I’m so impatient but I must be sensible. The Zopiclone gave me a decent enough sleep – I didn’t properly wake up until about eight so that was really nice.

I decided to spend my day with my feet up on a stool to try and alleviate any excess edema, plus I’ve been taking diuretics today, so we’ll see how it goes. I took a picture of my feet this morning, and I’ll take another tonight and compare.

So it hasn’t been the most exciting of days. It snowed this morning which was surprising and I’m sure great fun for anybody outside. I was glad not to have to go out.

I had an inspection of my jumper drawer because I was having trouble opening it and I thought there might be something stuck underneath it. Eventually, after taking everything out of the drawer, I removed the drawer itself, and discovered the problem. The bottom of the drawer has fallen out. So that’s Daddy’s job for this weekend.

Need to think about what I want for tea tomorrow night before nil by mouth on Thursday!

The 12th of February.

Today did not start well. I was having my coffee, watching some delightful specimens on Jeremy Kyle, when I heard “GET OUT OF HERE YOU HORRIBLE CAT WARGGHHHH” coming from the kitchen/garden area, so I went to investigate. It was Mommy, who was coaxing Oscar into the house because the little black and white bastard had attacked him. He’d gouged a hole in Oscar’s head that was bleeding quite a lot, and his feet were bleeding. He drank some cat milk and Mommy rang the vet, who said to take him round so they could check him over. He had a shot of antibiotics, steroids and painkillers so he’s okay. We just had to be extra nice to him. Mommy initially thought he was dead when she found them because he’d just given up and was lying on the ground, not fighting back at all. Poor kitty.

This afternoon I’ve had my feet up again. The diuretics definitely worked because my feet are back to normal size again. I still might bring it up at clinic. Oh, and just to be helpful, my body has decided to start doing the fake-after-extra-period thing. Grand.

feet