Archives For Christmas

The 28th of December. 

No steroids today, and nothing has got worse so I think I’m safe. Thank god; I’m not sure I could cope with going back to the moon face. We rang the dental hospital and got me an appointment for tomorrow, tried the QE but haematology is still closed for Christmas, and we’re taking the kittens to the vet tomorrow because at least four of them are doing unacceptable poos. 

Today I did a lot of crocheting with no results. I’m going to use some of the wool I got for Christmas to make a mermaid blanket and to fit me, I have to get the gauge right. Once I’d worked that out (I was erring on the large side), I then spent the rest of the afternoon doing half the fin, only to find myself 9 grams short for the other half. Instead of buying another ball, I will get a new hook that is between the two sizes I was testing with, then hopefully it will all work out fine. 

This evening, we went to the Botanical Gardens Christmas lights display. I was wrapped up as warm as possible – cashmere socks, long boots, gloves, scarf, hat, blanket. It was pretty, and I took some photos, but it didn’t take long for me to get too cold to care. My toes were so painful, like blocks of ice. My hands were less awful because one can at least rub them together to generate heat, but the feet are impossible. I have been suffering for several hours, and am currently thawing my feet in front of the fire. We’re supposed to do a similar thing at Blenheim Palace on Friday. Hmm. 

The 29th of December. 

My tongue has been numb for hours. We went to the dental hospital to see Mrs. Richards and get my tongue stabbed. She looked inside my mouth and agreed that I definitely needed injections.

First, she put local anaesthetic in the side and underneath of my tongue, in my cheek and inside my top lip, right under my nose. When everywhere was suitably numb, she put the steroid in, then I had to lie with a wad of gauze in my mouth to stop the bleeding. 

Then we had to go shopping while half of my face (even my right nostril) was numb. I wanted to get this crochet hook, some more cashmere socks (if there were any in the sale) and some Uggs (also in the sale and out of necessity to keep my feet warm). The crochet hook and socks were easy, plus I got some lambskin gloves reduced from £50 to £15! Then we went to the Ugg shop. It was very difficult for me because I really hate the look of most Uggs, the traditional kind, so after trying on a couple of pairs, I settled on some ankle boots that are not too obviously Ugg-like and were £50 off, so I think I did quite well!

This afternoon, we took the kittens to the vet (again). Met a very fun dog with a sticky-out tongue and a Christmas jumper. None of the kittens have temperatures, so we have some worming stuff and special food to hopefully settle their dodgy stomachs. 

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 20th of December. 

I am home! Ohh so happy to be back where I belong. 

Last night I wore earplugs which helped me sleep a little longer this morning, although any remaining tiredness was very quickly shaken off when the woman next to me shat the bed. The stench. 

Different consultant but same junior doctor today, and I said I was pretty much losing the will to live waiting for this scan. I also explained that regardless of the outcome, I would be discharging myself today because I could not spend a fourth Christmas in hospital (and I did a small cry). The consultant was very sympathetic and instructed the junior to hassle ultrasound about getting me scanned asap, and having all my drugs and paperwork ready to go. 

A haematologist came to see me with the thought that I might have a fungal infection, and he wanted me to have another kind of scan, but the consultant above him felt that was not necessary, thank god. 

So then all we had to do was wait for ultrasound. A woman turned up shortly after two, and proceeded to scan me right there in my bed! Once again it was commented upon that I am lovely to scan, and having covered my right side in gel, she found no evidence of a clot. Obviously we informed the doctor of this immediately and by three we were out of the door. Just a tiny visit to Pandora on the way home to get the charm for yesterday’s anniversary, and now I am at home in our living room. I have petted the kitties and tonight I am out at The Glee for Joe’s Crisis at Christmas gig. 

I’m just SO HAPPY. 

The 21st of December. 

Sleeping in one’s own bed does not get old, let me tell you. 

I had lots of fun last night – Joe’s friend Ben who I met the other day was sat in front of me, with Jess Phillips (MP), and they were both amazed by my mug of sausages. I pointed out that they too could order one, they are always available. 

I went into the dressing room at the interval and at the end, and got to spread the Anthony Nolan word some more. We also had some chats about which was the best gay Christmas pun, and wondered whether Sara would make it. They were all lovely and really funny; will definitely make an effort to see them again. (On the bill we had Joe and Sara, Guz Khan, Fin Taylor, Andrew McBurney and Mo Amer.)

Today I finally finished my wrapping, watched Elf and decorated our tree. Daddy came home with Christine while I was mid-tree, so she helped me finish. My right arm is still huge and I’m coughing but I’m trying not to care. I’m okay and I’m home which is all that matters. 

Today is eight years since my liver transplant. Back then, nobody thought I’d even see Christmas, yet now I’ve had eight more. At what should be the best time of the year, my donor’s family went through the hardest thing I think there is: the loss of a child. But they were selfless enough to know that they could stop another family feeling that pain, and they gave us that. A Christmas miracle. 

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The 18th of December. 

Guess who’s back in hospital? Lucky me. Having added up all the symptoms, I decided that actually, going to A&E this morning was going to be necessary. If I do have a pulmonary embolism, or need inflating, we needed to get the ball rolling asap. 

So after breakfast and coffee, Daddy brought Mommy and I down to the QE and here I will stay tonight. We arrived at 10.56, got triaged and had my obs done. My high heart rate concerned people despite me explaining it was normal for me. I spent most of my five hours sitting facing a corner in a sub-wait so I was exposed to as few germs from coughing people as possible. I had a minuscule amount of blood taken, enough for a D-dimer (a test to indicate a thrombosis) and saw a doctor who decided to admit me for the tests that I need. They’ll want to do a CT scan which I can’t have because I’m allergic to the dye, so if a PE seems likely, I’ll have the one I had before with the radioactive gas. 

I finished my book (Cats Cradle by Kurt Vonnegut), and eventually got a bed on CDU at half four. I filled in a form, was brought some dinner of chicken in a creamy sauce with green beans and mash which was actually edible, then we sat and waited for Daddy to come with my overnight bag. 

Once he arrived, a doctor followed shortly after. He’s from the liver team so has heard of me, and we went through all my symptoms and history again. He was mad that I hadn’t had a chest x-ray yet as he could hear prominent crackles, but it’s done now. I’m high risk because I’ve had a PE before, and my veins have been inflated before, and this doctor is sensible so I’m confident things will happen tomorrow. Hopefully it’s simple. PE and clexane please. 

The 19th of December. 

Happy 9th Marrowversary to me! Nine years ago today I was sitting in a hospital bed, having Christine’s stem cells transfused into my bloodstream; now I am sitting in a hospital bed waiting for another scan.

The doctor (Matt) came back last night to say that there was a shadow on my lung, so he wanted an ultrasound today to see if there was any fluid there. A porter came for me at half nine, but then we had to wait for a transfer nurse. After half an hour of him angrily pacing, a woman came up from ultrasound to help. For some reason, I had to go down on my bed, so two people were required. Anyway, a man scanned my right hand side and found no fluid so that’s good. I returned to CDU, where I was seen by the doctors who have now decided that because my arm is still swollen, they want a scan of that, so I’ve been waiting for that all day. 

Mommy came in with some lunch for me, and we sat around some more. Dr. Thompson decided to drop in to say hello and take the piss a bit because he is awful (but we love him). He feels that if there’s no clot in my arm, there’s no need to go hunting for one elsewhere, so tomorrow hopefully I’ll just have my arm scanned and then go home on clexane and co-amoxiclav. Please!

Gareth had been in to visit the liver team so popped down to say hello and ended up staying for nearly two hours! Still, we had nice chats about Keith and the liver team and Christmas. I think it served as a nice distraction for us both. 

I also had a visit from April who works here and follows me on instagram so I got to put a face to a name!

Loads of new people tonight. Go away.

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.