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The 21st & 22nd; Birthday!

January 23, 2017 — 4 Comments

The 21st of January. 

Birthday! Had to get up super early which I didn’t love but it was for a good reason. I had a pain au chocolat for breakfast, then opened some of my presents. I got a box of macarons from Macarons & More from Grandma, a book token and a big journal from the Hudsons, a cheque from Taid, and some Moomin paraphernalia from Mommy and Daddy – a t-shirt, a notepad and pencil, and a wooden Little My that I need to assemble.

Our train to London was at 10:10, so we set off shortly after breakfast, and we were taken to the train by a woman with a very laissez-faire attitude which I did not care for. I also didn’t like being in coach A because it means I can’t really talk to the people I’m travelling with, but there was at least a fun baby who smiled at me when I made faces at her. 

We didn’t have time to wait for the Euston team to turn up, so got the chair off the train and went to get a cab to the South Bank, where we met up with Christine. We then went on a twenty minute trek in the cold to Where the Pancakes Are, but their misleading website said they would have some free tables for walk-ins, but there was nothing, so I told the woman she had ruined my birthday and left feeling very disappointed. 

Very nearby was a Caravan restaurant where they had many tasty dishes available and nice coffee, so then I was greatly cheered. I had a flat white, then smoked salmon and scrambled eggs on toast with a mimosa. Christine gave me my presents which were two Harrods cronuts (salted caramel and Speculoos and the zebra one), then Daddy had a pudding and I had more coffee. 

We got a taxi back to the South Bank because I couldn’t bear to get that cold again, then we had an hour to kill in the Royal Festival Hall before our Moomins exhibition tour. I went to the shop and bought a little stuffed Moomin and a bowl. 

The tour was lots of fun and very informative – it’s narrated by Sandi Toksvig, along with the tour guide, which was a lovely surprise, and there were lots of original illustrations and stuff that I would never have seen otherwise. I also really liked that they didn’t just gloss over the fact that she was gay and are teaching the children going on this tour that it’s okay and not something to be ashamed of. I think we need to be reminding kids that whatever they are is okay at the moment. The only bad bit was that it was not easy in the wheelchair – we actually had to collapse it and I did a lot of crouching in each room. It would be fine in a manual one with big wheels but the spaces are too small and the floor too uneven for anything else. We coped, but other people might not. The tour guide was very helpful and apologetic, and she promised to feed it back. 

Our next stop was Konditor & Cook to pick up my birthday cake, then we headed to the BFI for hot beverages and a rest before we had to go back to Euston. I had a hot chocolate, and did a lot of coughing which worried me but I think it was just because of the temperature change between there and outside. 

We saw many people who’d been to the Women’s March, which I would have loved to have gone to, but if I had, I would have definitely got ill. It was so cold today, I couldn’t have coped, even in a mass of people. Wonderful, but not sensible for me. 

When it was time, we said goodbye to Christine, then back to Euston. I got some Pom Bears and New Scientist, and when we got home, it was time for cake!

The 22nd of January. 

So tired today. I had a really bad night, not getting to sleep until past one, which is way too late for me. I got up at half past nine, put on some very warm clothes and settled in to spend my morning writing about yesterday. 

This afternoon, I was about to start writing the post I would have done yesterday, but then Alison came over with my birthday presents (more wool and flowers) and there was some catching up to do. Becky is full of lurgy so can’t come round herself, so we got all her news by proxy. It sounds like the cold Grandma’s got and I do not want either of their germs. 

We put the flowers she brought me in a vase, and I was able to finish my writing, which didn’t take long. Tomorrow won’t be so quick as there was a lot to say about my birthday. Then I got to work on otter number 2. I’ve made everything except his ears and snout, so I’ll get him finished this evening. When I’m done, it’ll be an early night. I need a big sleep. 

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 16th of December.

It lifted, thank god. The wrapping day was not ruined. I woke up in time to say bye to Mommy and Daddy before they set off for Wales, then had my breakfast and wrote up a blog post. After fighting for a long time with the lock on the front door (I was being inept), I went round the corner to get some double sided tape and cotton wool pads (not for wrapping, I had just run out). 

After lunch, I set myself up at the dining table with my peppermint drinking fudge, The Polar Express, and all my wrapping paraphernalia. I spent the subsequent three hours indulging in festive spirit, and I have nearly finished, I just need to get some gift bags for a few things that even I am incapable of wrapping. Will pop into Paperchase after The Muppets tomorrow. 

Just after half four, I jumped in a taxi to go back to Black Sheep to have the toner cleansed our of my hair – washing did not give the desired effect. James was lovely and has fixed it, and I’m much happier now. 

I have just finished my dinner of a Domino’s personal pizza and two of four cookies, awaiting the arrival of my parents back home. They are mere moments away. 

The 17th of December. 

Today would have been 100% excellent if not for one (hopefully) minor inconvenience. But I will get to that. 

Woke up stupidly early for a Saturday, but for a good reason – Becky and I were going to watch The Muppets Christmas Carol at The Electric! She came to pick me up at quarter to nine, and off we went. We parked round the back of the cinema, then got some tea before taking our seats. I actually ordered a coffee, but it tasted awful so I went back and got a tea as well. The screening was not as busy as I expected, but some people still managed to be irritating by having brought their poorly-behaved, germ-riddled children. Not acceptable. Still, they could not ruin the magic for me. After all, it is the summer of the soul in December. 

Afterwards, we went to the Cereal Killer Café because I wanted to try one of their “cocktails”. I had a bowloccino, which is Nesquik, Coco Pops, a chocolate curl and espresso milk. So tasty! I would never go there for something like Special K, but combinations or ridiculous cereals, I am all for. 

Before coming home, we went into Paperchase so I could get some gift bags and more ribbon and tissue paper. Now I can finish my wrapping. 

Now to the inconvenience: I happened to push up my sleeves and thought “Ooh, my right arm looks a bit fat. Let’s give it a squish. Ooh, that’s a bit boggy for my liking. Actually, my right foot has felt puffier than usual for the past couple of days. And my breathing has been terrible of late.”

So I don’t know what’s going on, because I don’t have a line anymore, so that can’t be causing it, and it’s only one side, so I’m confused and unhappy. I have started diuretics to try to get rid of some of the fluid, but on Monday morning I might be ringing Gill Lowe to freak out. I don’t want to spend Christmas looking like the Stay Puft marshmallow man. 

This afternoon, Sadie came round! Mainly to see the kittens. She did not steal any (I checked). She was greatly amused by their interest in her feet. They love feet. We stayed with them until they fell asleep, then we watched the end of Mr. Magorium and ate the two remaining Domino’s cookies. 

She had to go about four to make sure her dad had done the pile of sorting she’d left him. Sometimes I wonder who the parent is in that relationship. 

Hoping to god my body deflates with peeing. Don’t make me have another venoplasty. 

The 21st of January. 

Happy Birthday to me!

It’s also a year since I stopped steroids today and the difference in my face is insane.

I had some Nutella on toast for breakfast before I started opening my presents and cards. Carol had sent me the book about A Streetcat Named Bob, Auntie Hilary had sent a Lars Kepler book, and an Amazon voucher to buy the 5th book in the series when it comes out in May. Mommy and Daddy had bought me a necklace and the “perishables” was some macarons from Macarons & More, super tasty!

We went out late morning to do some shopping, and I got some cashmere socks, merino wool and silk socks, and a pair of leather trousers all half price! Daddy and Christine both phoned to wish me a Happy Birthday, and we came home for about half an hour before going out to pick up Grandma to go to Harvey Nichols for afternoon tea. 

We met Daddy in the car park, and were a little bit early so had a little bimble around the shop before going into the champagne bar/restaurant for our tea. I had an egg sandwich and a cream cheese and cucumber sandwich, one and a half scones (which were incredibly good, even if I did throw half of one on the floor) and a chocolate delice. I was also presented with a glass of champagne, Grandma gave me the Happy Birthday charm from Pandora, and Mommy and Daddy gave me a pair of diamond earrings and I was floored, not expecting that at all. 

Tonight, we’re having birthday cake and more champagne with Becky and James. Happy girl. I am so lucky. 

The 22nd of January. 

Happy Birthday pt. 2!

Early start for our trip to London! Arrived at New Street at 10, bought coffee and paper, then barely had time to get settled in the assistance area before the chap came to take us to the train! On the journey, I had to cope with a girl having to vomit in the toilet near me several times, and I saw two girls with four blue WKDs who I was glad not to be seated near. 

Got a cab very quickly and he took us to The Savoy. The doorman did something to the door so we could get through the rotating panels with the wheelchair, then we sat on some large pouffes while waiting for Christine. She emerged somewhat weather-worn and relieved to sit down, then regaled us with tales of her stressful morning. She’d had plans to go to all sorts of cake shops, then arrange them in a box for me. There hadn’t quite been time, so I got them in there own bags/boxes. She got me a vanilla bean and a chocolate truffle doughnut from Crosstown, an Oreo cheesecake crodough from Timberyard, a zebra crodough from Harrods, and a s’more from Cutter & Squidge! All that PLUS a Moomin make up bag and notebook. She is the best. 

Onto foods! Started with champagne (again). Mommy and Christine had the same four course Escoffier menu, which meant a came to explain each dish they were having. We all had the same starter, the glazed omelette Arnold Bennett, and I can totally understand why he ate it every day – it’s fucking delicious. Then Mommy and Christine got a ravioli while Daddy and I munched on bad. The main courses arrived soon after, and I had an excellent steak on the rare side of medium-rare, and I was very pleased that they left the peppercorn sauce on the side, otherwise I wouldn’t have been able to eat it. 

I knew I wouldn’t fit in a pudding, so after watching Mommy and Christine’s sour cherries get flambéed, I went to investigate the toilets. They were incredibly fancy – I love a place where you dry your hands on a flannel then chuck it in a bin. I also had no qualms about taking a selfie or two in the big mirror. Upon my return, our coffee was being served, so we drank that while we ate the tiny extra desserts, paid, and said goodbye. 

Our plan was to go to Picturehouse Central, because Christine is a member, so we went to see The Big Short with 3 discounted tickets and one free for me! We sat on the back row of sofas and wrapped up in blankets because the heating was on the blink. The film is so good, so important, but entertaining as well. It made me hate everyone including myself (because at one point I was rooting for the guys who wanted the economy to fail). It also made me want to squirrel all my money away in suitcases  

We still had an hour before we needed to get back to Euston, so we sat in the café downstairs where I was refreshed with an orange juice and we saw Adrian Chiles from football. We were lucky and grabbed a cab very promptly, from a cabbie whose daughter is at Birmingham Uni. At Euston, the others bought some food (I was still full from lunch), then we saw Paddy McGuinness as we were heading to assistance. Daddy had been complaining about not having seen any famous people while we were at The Savoy and now we’d seen two!

The train home was packed. I listened to St. Paul and the Broken Bones and was very chilled out. 

The 25th of December. 

Merry Christmas! Not the best of starts – I woke up at 5 to 5 and tossed and turned but couldn’t get back to sleep, so Christine came in with stockings at about half eight. I got a little snowman that you make with chemicals, hand cream, tiny Lindt Santas and bears, nail varnish, a mini Hotel Chocolat slab and a pencil. Then Christmas breakfast! Game pie, meats, cheeses, hard boiled eggs, breadbuns, just all the foods! Best breakfast of the year. 

Went back upstairs to get all dressed up in my sparkly Christmas attire, and spent a long time trying to get a good photo that didn’t show all the mess currently inhabiting my bedroom. Mommy and Daddy went to get Grandma, and by noon we were in our usual positions, champagne in hand, ready for me to dole out the presents. They weren’t very evenly distributed so I could find loads for Daddy and Christine but none for me! It turned out all of mine had been hidden round the back of the tree and I had to crawl underneath to find them. I did then get to open them all at once which was lots of fun. I got The Crochet Bible by Jane Crowfoot, lots of wool and three birch hooks, an amigurumi book, Buck’s Fizz marmalade, a star-shaped skillet and cookie mix, The Little Prince moleskine diary, Rob Ryan calendar, a huggable microwaveable pug, a red Acme cappuccino cup and saucer, Christmas London Starbucks mug, fudge, biscuits, chocolate, a felting kit, Pandora stocking charm, Chanel Troublante nail varnish, candy cane earrings, gloves made of mohair, possum fur and silk, the new Michael McIntyre DVD, thermally socks and gloves…I think that’s it? By the time we’d got through all of them, it was nearly time for turkey! We had a whole one this year because we couldn’t get hold of a crown, and apart from a slightly too peppery stuffing, it was a great success!

Afterwards, Taid fell asleep in the living room right away and snored all the way through the end of Brave, Stick Man and Doctor Who. We had to keep turning it up to hear it over him. The Easts came over at the start of Strictly, and we swapped gifts and heard how their radiator had started leaking while they were out at church this morning, but luckily not for long so there wasn’t much damage. Grandma went back home not long after they did, Taid went back to his room to watch Downton, and we had Christmas cake and watched lots of the comedy we’d recorded over the past week. 

My favourite part is still reactions. Everyone was happy – I did well this year. Best day. 

The 26th of December. 

I had a much better sleep last night – I didn’t want to get up when my alarm went off. I gave myself ten more minutes but then I forced myself out of bed. I bit my tongue yesterday so hard it bled, so it was very tender this morning. I decided porridge would be a safe breakfast, then spent the rest of my morning writing about yesterday, as I didn’t really have time then. 

I’ve been up and down the stairs all day because Daddy’s needed me for laptop japes. He bought Mommy and new-but-used one for Christmas and he was migrating stuff before erasing everything on the old one. The most important thing was the keychain, and I wanted to do it manually, but then we thought that just migrating the apps would work. It turns out it hasn’t, all of Mommy’s keychain is gone and I feel like I’ve ruined everything because I should’ve done it the way I wanted to in the first place. 

We had a ham for lunch, plus hasselback potatoes, mashed swede and red cabbage, and tonight is essentially Christmas breakfast for dinner. Mommy and I have finally watched the final episode of The Bridge and I do not like how it’s ended but there’s naught to be done about that. Taid has been watching and he likes Linn, which makes me think he is a terrible judge of character. She was a dreadful person. 

The 23rd of December. 

I have checked my potassium today and it’s down to 5 (we like it to be 5.5 or less and it had gone up to 6) so I’m going to stop taking the diuretic. I woke up to pee at quarter to six and couldn’t get back to sleep, so I am very glad to not have to deal with that anymore. To pass the time, I listened to the second episode of Serial and had a go at crocheting a snowflake. 

I hadn’t planned on having any breakfast until Lauren arrived because we were making waffles for brunch, but I was up so early, I had some toast (which I ate alone in the house, a very dangerous thing, but I didn’t choke) and did a blog post. I made some coffee using the spiced blend I bought from Harrods, but with milk, it tastes awful. Thankfully, I had more beans in the window seat so I got the caffeine I needed. 

Lauren arrived just before eleven and we exchanged gifts. She got me fancy hair stuff, eye primer, nail varnish (a very festive green) and tiddly chocolate penguins. She liked her badges and crocheted gingerbread man a lot. Then we made waffles and watched the Bill Murray Christmas show on Netflix which was disappointing. Nevermind, the waffles were tasty. 

She left at half one, and Penny was supposed to be coming over this afternoon but she never showed up. I’m sure she has a perfectly good reason but it is a mystery. I have filled my time watching all the films on tv, and I iced some cupcakes. Went slightly overboard on the glitter but that can’t be helped now. They are just very sparkly!

The 24th of December. 

The fire is roaring, Carols from King’s is on and I am full of Christmas spirit. 

I woke up at a reasonable time this morning and put on a glittery jumper and penguin earrings that I was given for the liver transplant Christmas. Not going anywhere, but it’s nice to dress for an occasion. 

I have had no jobs to do today, unlike everyone else – Daddy had to go to Wales to pick up Taid, Mommy and Christine had wrapping to do, plus other bits of pieces like moving the hamster and finding temporary homes for things that were in the way. I have just stayed in the armchair, watching the films that have been on tv all day. To begin why, I was doing nothing but sitting and this felt rather unproductive (not to mention boring), so I went upstairs and got the wool that Sheila gave me to make baby blankets with, and have been working on one of those all day. I’ve done twenty two rows of a 115 stitch blanket which will be roughly thirty square inches. 

My viewing has been Bedknobs and Broomsticks, Horton Hears A Who!, Sister Act 2, A Christmas Carol, then we fitted in a sneaky episode of The Bridge, then the end of Finding Nemo, now Carols. My brain is sufficiently mushy. 

We lit the fire at five, and moments later, Daddy returned with Taid. He’s now sat in the other armchair and he’s eating the nuts from the table. That’s fine, I don’t eat them so I will not be picking up his germs.

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).