Archives For Christmas cake

The 26th of December. 

Changed our minds. Cancel the steroids – we have a new theory. We still think my mouth is GvHD, and so ring up the dental hospital first thing on Wednesday, but we’re less site about my feet – we now think it might be a condition called erythromelalgia, which can be caused by high platelets (I have bucketloads of them). We might go to the QE after the dental hospital and until then, carry on with cold water and elevation. 

I spent the whole morning in my pyjamas, then when I did finally get dressed, I put on my very soft new trousers and have had a very comfortable, cosy day. Except for all the pain. 

At lunch (Nigel Slater’s festive sausage roll), I just looked at it and thought I might cry. Just feeling so shit, and I really don’t know what the reason or solution is. If the pain team are required I am not hopeful, as I’m still waiting to hear from them about my back. I need an alternative to gabapentin, a drug for nerve pain that won’t impact upon my breathing. 

This afternoon has just meant sitting in front of the films on BBC1. Tonight is the last ever proper Bake Off and it think I will weep salty tears into my Christmas cake. 

The 27th of December. 

Changed our minds again. My feet have been so much better today and don’t know if that’s because the steroids are treating GvHD, or if it’s just the anti-inflammatory effect they have. Anyhow, I took the pred again today. I’m not sure about tomorrow, apart from definitely ringing up the dental hospital, because my tongue needs injecting. 

I spent all of my morning writing up my Christmas Day post, then after lunch, I went to the kitty room to watch an episode of The OA and see if I could work out which kitten is still doing dodgy poos. We have been taking shifts to watch them, but haven’t been able to work it out yet. 

I left when Daddy came in to watch The Grand Tour (I know, but I can’t stop him), and Mommy and I watched the Big Fat Quiz of the Year. Now we hear Richard Adams and Carrie Fisher have died. I wonder who is left for 2016 to take from us. Just finish, then everyone can stop dying and everything will be fine. 

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 22nd of December. 

WELL as if things weren’t bad enough, as soon as I woke up this morning, I knew that the GvHD on my toes was flaring up. Mommy and Christine had gone to a walk-in centre because Christine’s throat was all gross and infected. They came back with no antibiotics, I showed them my toes and Mommy started phoning people. First we tried the haematology pharmacist, who suggested we call the emergency oncology nurse number. I did and spoke to a nurse, who said she’d talk to the doctor and ring me back. 

So I have been mostly sitting around, waiting for a phone call. Eventually I had one from Sandeep who is excellent, and she immediately wrote up a prescription for steroid cream which Daddy is picking up after work. 

Christine helped me wrap my last present for Daddy (too big for me to do alone), and I have watched How To Train Your Dragon. 

I could really do without my skin going insane right now. Systemic steroids are not an option. 

The 23rd of December. 

We are all broken except Mommy. Me with my GvHD, fat arm and cough-causing lung shadow, Christine with her infected throat, and now it seems Daddy has a temperature. Going to be a great Christmas here!

Mommy and Christine have spent the day baking all of the things. Finally we have mince pies (not that I’ll be eating them, bleugh), Nigel Slater’s festive pie, various cakes, and I have iced and decorated the Christmas cake with lots of snowmen. 

I have watched Sister Act 2 and Arthur Christmas, put my presents under the tree and told off the kittens because one of them has chewed through one of the wires to a speaker. Argh. Thankfully it is fixable (or so I’m told). 

Antibiotics make me hungry all the time. Good thing it’s Christmas and there is food covering literally every surface. 

Even though we’re poorly, we must remember how lucky we are. 

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 21st of November. 

Oh, last night I was full of rage. I had been complaining on Twitter about how I miss the voice I used to have, how it kills me that I can’t sing the way I used to. I don’t talk about it a lot but performing was a massive part of who I used to be, it was what I was good at, what I was confident about and it was taken away from me. Someone who follows me advised that I try “breathing exercises” and I just about exploded. How someone that follows me can not know I have an incurable lung condition I just don’t know. The anger itself made me breathless. 

Today I went to see Mockingjay pt. 2 with Daddy. A film I didn’t think I’d live to see but here I am. The Hunger Games always makes me want to smash the government and this time was no different. President Snow holds echoes of David Cameron. Obviously, Dave is not quite as blatant about his disregard for the poor and the vulnerable but it’s there. He cares about those he deems important (i.e. his class, the wealthy) and the rest of us are inconsequential. Profit is all that matters and if he can dismantle public services so the private sector can take them over to run them poorly to no account then it doesn’t matter because he can afford decent care if it’s necessary. I wonder if he ever feels guilty about what he’s doing but I think it’s unlikely. Every day I despair about the future because I don’t want to live in the world the Conservatives are creating.

The 22nd of November. 

It has been freezing all day. I only tolerate being cold for Christmas and my birthday, otherwise winter would have no benefits at all. The only times I’ve really been warm today have been when I’ve had Nick on my lap. He isn’t doing the sad mews as much but he isn’t eating a lot and I’m not sure what to do about that. I’m just going on my knowledge that kittens tend to self-regulate and if food is there and he is hungry he’ll eat. 

I spent my morning reading yesterday’s paper, and I did very well on the crossword. I also got some inspiration for Christmas presents from the gift guide. I’m doing pretty well – got a spreadsheet going. 

This afternoon I have crocheted while Mommy and I caught up on two episodes of The Returned. That’s one foreign drama down for the week, now The Bridge has started again so we’ve got that too. We love Saga, she is excellent. 

Mommy had to go and check on the Christmas cake, so I went to see Nick and watch some Pretty Little Liars. It surprises me that it was only filmed in 2010-11 (I’m still on season 1) as the phones seem really old and they dress really badly. Well, in my opinion. They do have nice hair though. And interesting love lives. Just any love life would be nice. 

The 28th of December. 

I think I may have to stop eating all of the things – my jeans are tight enough now. There’s no point in weighing myself currently as I’m retaining fluid from lisinopril which is fucked up. Stupid ridiculous blood pressure. At least soon I will be off steroids again and that should make some difference. 

I had next to no sleep last night – my breathing was bad so I was on the oxygen all night, listening to audiobooks. 

I am still coughing and I’m not sure what’s going on but it is definitely not my favourite. I do not feel particularly great right now and I am hoping it does not get worse or I will definitely not enjoy the panto tomorrow. 

The 29th of December. 

Ugh I’m definitely sick. Rhinovirus I think. However, my arms and face are puffy and we don’t know if that’s down to lisinopril or if my line is misbehaving. I think we’ll see how long I continue to display these symptoms and go to hospital if it’s necessary. 

So last night, despite Zopiclone, I didn’t really sleep again, and I’m not sure what to do. Obviously we have not gone to the panto because my body likes to ruin plans. We will go in January. 

Becky came round to tell us of their sales purchases – they did very well! I haven’t really attempted any sales shopping. I have just not had the inclination this year. 

Oh God I just want to sleep until this is over. 

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The 24th of December. 

Merry Christmas Eve! Ooh I am so festive. I just finished watching The Muppets Christmas Carol so I floating on a tide of joy and a thankful heart. A year ago I didn’t even expect to be alive right now, so I’m just super grateful and happy to be here, having a Christmas Eve fire with my Daddy while my sister wraps presents and Mommy cooks smoked fish aka the best kind of fish. 

Today I have watched all the Christmas Eve TV – WALL-E, The Lego Movie, The Muppets…currently on Despicable Me 2. I got a Christmas card from Penny and I have done much crocheting. I also painted my nails green to match my Christmas dress. 

Oh my god I’m so excited. 

The 25th of December. 

Merry Christmas! Oh I am so happy and warm. I woke up, went to the bathroom and on the way back, I saw Mommy and Daddy were awake so I went and sat with them for a little Christmas morning chat, then Christine came in and we went to my room to open our stockings on my bed. There were chocolates, tissues, a stylefile, a little nail polish, lip balm and chewing gum. 

Downstairs in pyjamas for Christmas breakfast! All of the meats, cheeses, breads, pie, yum. I tried some of the custard cream spread on a breadbun but it is too sweet for much more than that. 

Then we got dressed, Mommy and Daddy went to get Grandma and it was time for presents! I love my role as present-giver. I try to give them out equally but always somehow leave mine ’til last. My haul this year included: a Moomin calendar, More Fool Me by Stephen Fry, Being Mortal by Atul Gawande, Offshore by Penelope Fitzgerald (Uncle Jeremy’s book of the year!), The Unofficial Guide to Radio 4, Bread, Cake, Doughnut, Pudding by Justin Gellatly, Pugs in Costumes, two Pandora charms (elves and snowman), a personalised crochet bag with wool and hooks, thermal socks, touchscreen gloves, a necklaces of a coffee tin and spoon, a pug coffee dance mug, a Nutella knife, a Lindt reindeer, a Little Prince moleskin diary, Fortnum & Mason’s Buck’s Fizz marmalade and hot chocolate discs. Mommy was very surprised by her kMix and is looking forward to baking all of the things! I think I did well with my present-buying this year. 

After presents, Mommy and Christine did things with the food and I put Frozen on until it was time to eat! We do our dinner self-service so I had many parsnips and pigs in blankets as they are my favourite bits. Everybody had Christmas pudding with brandy and crème fraîche for dessert, but I had nothing as I was too full and I do not like Christmas pudding. 

Once satiated, we decamped to the living room to watch Strictly and nap. I was very sleepy. After Strictly was finished and I’d had as much Bruce Forsyth as I can handle for the year, the East came over! Jonathan was in a baboon onesie which meant he got rather overheated by the fire. They gave me some chocolates, a cupcake display stand and a Pandora voucher. Got to choose another charm now!

We watched Doctor Who which was suitably ridiculous and terrible. I’m really quite glad I didn’t bother watching this series. 

Now it is time for Christmas cake and Wensleydale, watching Alan Carr and crawling upstairs while I still can. 

I will never tire of this feeling. I am so happy and so lucky to even be here. Sometimes things are more difficult than I would like, but things could be so much worse and right now I have more than most people could ever ask for. Merry Christmas. 

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