Archives For December 2014

The 22nd of December. 

Ack nearly Christmas! Far too excited for my age but oh well I do not care I am allowed to regress. 

I have spent pretty much all day watching films – I started with The Neverending Story Part II, then Elf, then the rest of Men in Black 3 which I recorded last night. When Mommy came back from taking Grandma to Good Hope, we watched last night’s You’re Fired and discussed what we were going to put on the Christmas cake. However, upon closer inspection of the decorations, we realised we had nothing! Thankfully, The Little Cake Shop round the corner had Christmassy decorations so we went round there and bought some snowmen, trees and robins. 

When we got back, Alison came over for a quick cup of coffee before dashing off to take Jamie shopping and we decorated the cake! Now the icing just has to harden, and at least we don’t have to worry about a naughty kitty walking in it like he did last year!

The 23rd of December. 

Merry Christmas Eve Eve! Agh I am so excited. I have spent my day in front of the TV, watching things that have piled up on the box, like four episodes of TOWIE. I also watched The Nightmare Before Christmas. 

I did break away from my avid TV watching to wrap Mommy’s present from Grandma, but I think that was about it! I have been really very lazy today, but then again, that is what the season is all about. 

Two sleeps!

The 20th of December. 

I am now fully prepared for Christmas – all of my wrapping is finished! It’s all under the tree except Mommy’s Chanel stuff and big box. I need Daddy to bring that downstairs. 

I spent my morning updating the blog and reading the paper, then at lunchtime, Daddy and I went to see The Hobbit. It was suitably enjoyable – Kili is my favourite dwarf. Other favourite character is Galadriel because she is ace. The women in general in this film are all badasses. 

When we came back, I finished my wrapping while I watched Mr. Magorium’s Wonder Emporium which is one of my favourites. It is full of poignancy and I just adore everything about it. It fills me with warmth and magic and brilliance. It makes me happy to have lived. 

The 21st of December. 

Another day, another anniversary. Today is six years since I was given my liver. It’s nearly nine o’clock, and around this time we were getting ready for me to go to theatre. Paolo and Darius scrubbing in before they cut me open, took out an organ (or two – gall bladder goes too) and  put a new one in! Couple of days later, I woke up in PICU, incubated (not my favourite), went to ward 8, then a day or so later, it was Christmas. It feels like another life. 

This morning, I watched Sunday Brunch and put my new charm on my bracelet – it’s a letter to Santa. Six years ago, I got everything I could have wanted in another chance. Mommy washed my hair, then I had “posh” (read: Heinz 5 beans) beans on toast and watched Miracle on 34th Street. I feel super festive and I just can’t wait for Christmas. Eee!

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 14th of December. 

Our tree is all lit up and decorated! I had a nice sleep with the help of a Zopiclone, and spent my morning watching Sunday Brunch and Mommy washed my hair. 

This afternoon, I have been detangling lights and choosing baubles to go on the tree. It’s so pretty now! I can’t wait to do my wrapping and put all the presents underneath.

The 15th of December. 

2 milligrams of pred! So close to being off steroids, my last day should be Christmas Eve. What an excellent present that will be! Oh, I’m crossing everything I have in the hope that everything goes to plan. 

This morning I had a wonderful delivery from the fabulous Grazia team! A box wrapped in a bag and lots of sellotape contained a little note and a CD with my photos on from last week which I haven’t had time to look at yet, plus a vanilla sugar candle, two O.P.I. nail polishes (Hey Baby and Taupe-less Beach), a Nails Inc nail polish, a Topshop freckle pencil, an eyeko shadow liner, two Revlon lipsticks (Stylist and Wardrobe), some St. Tropez skin illuminator, Windle and Moodie day and night cream, Laura Mercier eyeshadow, Christian Dior eyeshadow, Pür Minerals eye toner, Rimmel Wonder’full mascara and some Maybelline eyeshadow. A real box of delights!

This afternoon I met up with Elle and Luna who is now two months old! She was very late but it was fine as I had a book in preparation for some hospital waiting I was expecting to do. But she came and I got to have a squidge and even some smiles! She is such a beautiful baby, and I can see both parents in her face. Bah I love her.

Had a short trip to hospital for the ECP girls to have a go at my line – Sharon managed to get it flushing really well,but it’s still not giving anything back. We think a kind of fleshy flap has formed on the one side so you can flush through but when you try and draw back, it just sucks itself shut and you get nothing which is super frustrating. It’ll still be fine for ECP on Wednesday and Thursday though, so that’s fine 

Grazia tomorrow! Eee I’m super excited.  

The 12th of December. 

I am beginning to get über-festive. I’m Christmassy from about mid-November, but now even more so. I was listening to The Muppets Christmas Carol soundtrack in the car. 

Katie the nurse came this morning to flush my line but the red one is still misbehaving which is a pain. We rang the ECP team and I’m fine so we’re going to see them on Monday after I see Elle, Ben and baby Luna.

This afternoon, Daddy and I went to see Paddington! It was a joy. I do believe that Paddington Bear is my kindred spirit. Marmalade sandwiches are the one. I used to have them during chemo. Not just then. My whole life. Little bit obsessed with marmalade. 

I had a phone call from Julie and basically, Grazia aren’t going to use any of the photos from Tuesday because they prefer the one from the bridal shop! They are, however, going to send all the photos on a disc so I can still see and share them. It’s fine – I’m just grateful they let us know before publication!

The 13th of December. 

Tree is up! Nothing on it yet though – it’s “relaxing”. Put stuff on it tomorrow, including, including my incredible pug decorations that arrived today. 

This morning I put all my presents and wrapping in the same bag so they could all be brought downstairs. Read the paper, watched Saturday Kitchen, was really bad at the crossword. I tidied the area around the table in the living room, and Mommy tidied her craft stuff which took much less time than expected. 

This afternoon I have just watched movies and been generally quiet because I’m feeling a bit delicate. I’ve had to use the oxygen more than usual today. I think it’s partially to do with having had disrupted sleep for several nights in a row, so I’m having a Zopiclone tonight. 

Tree decorating tomorrow! I get to be an elf. 

The 10th of December. 

I had quite a lot of sleep, but it wasn’t the best quality. Awake quite a few times. Still. Mommy came upstairs to have another go at my line as yesterday it wasn’t quite playing ball, but today it was better, thank God. I did not want to have to go to hospital today. 

So instead I have sat around in my knitted Christmas joggers and a blanket and recovered from yesterday. I was even more tired than I thought! Also my tummy was not 100% happy so I’ve avoided dairy for most of the day, only having some milk in my coffee this morning but since then I haven’t even had my advent calendar chocolate. 

I am feeling better this evening, but I think I will have another early night and quiet day tomorrow. 

The 11th of December. 

Better sleep, although when I woke up (only briefly) at about half six, the wind and rain slapping against the window was so loud, I wasn’t sure I’d ever sleep again. 

Our scales had broken so yesterday Mommy bought some new ones, but I got on them this morning and they almost flipped up -they’re so light, I just don’t trust them. They feel like a toy. So we went out to Argos and I bought some I feel more confident in. We also got my Pandora charms for the 19th and 21st but they have to stay in the boxes until those dates. There was a lady in the queue in front of us who wanted a particular charm, but she didn’t know what it looked like, what it was made of or how much it cost so she was basically the worst customer in the world. 

When we got home, I had to rummage through some hard drives for some old photos for Nathan/Grazia and found all sorts of gems, including a very cute squished-face kitty who I wish I remembered meeting!

This afternoon, I watched New Year’s Eve and  cried at least three times because I’m a sentimental fool while Mommy took Grandma to see Nutcracker. I also talked to Christine who rang to be sad about being poorly so I told her to buy lots of oranges and some Vaseline to prevent her nose from getting sore.