Archives For tongue

The 5th of January. 

I had a really good sleep, although some weirdly complicated dreams. One involved Victoria Beckham being a dog with glorious pink hair. As you do. 

Decided to ring the dental hospital again because the ulcer on top of my tongue is making it difficult to eat stuff. Chewing is hard. Unfortunately, the usual receptionist (the very obliging David) wasn’t there and the guy today didn’t understand that I am special and they always squeeze me in. Then it turned out Mrs. Richards wasn’t even there, but John Higham was in this afternoon and he could fit me in because he is an angel. 

I did a blog post, then continued with the crocheting of the blanket. I also went to say hi to the kittens after they all mewed at me while I was in the bathroom, and I ended up getting damp jeans because I sat on a bit of blanket that they like to knead and suck on simultaneously (I know, it’s disgusting, but they think it’s like their mum). 

After lunch, we went up to the dental hospital and saw John, who looked at my tongue, and didn’t really want to give me another injection because it is just uncontrolled steroid into the bloodstream, once it leaves the tongue, so instead he’s prescribed this steroid paste stuff that I have to put on. I’ve been warned that it is gritty and gross but I’m sure I’ll cope. It can’t be worse than the sensation of vomiting up chunks of your own dead stomach tissue into your mouth. 

The 6th of January. 

My arm is stupidly, uncomfortably big. I can only just get a jacket on now. I really hope this venogram happens PDQ because I want to be able to wear clothes other than huge jumpers. 

This morning, I went out with Shaki to meet a new fosterer. We spent about an hour and a half there with her, her husband, occasional cat-sitter (who will also be a registered fosterer) and current cats. One was not at all interested in investigating us, but the other one was in my jacket, scarf, bag and Shaki’s skirt. She was wanting much petting. 

Once we’d gone through all the relevant information, we then made trips to Lee’s, Lydon’s and Pets at Home in search of the gastro food to tide our kittens over until they go on Sunday. 

This afternoon, Daddy and I went to see Rogue One (finally). We were the only ones in there which is always fun, and it meant that I wasn’t annoyed by anyone else. The film was alright – I was almost irritated that it didn’t then go into episode IV with the destruction of the Death Star, but it was enjoyable enough. I liked the sassy robot. 

This evening I’m trying the steroid paste for my mouth. It’s not so bad.


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 2nd of August.

The one day I’m actually able to sleep past eight o’clock, I got woken up by Mommy at ten past because she’d got me an appointment with a different GP at twenty past nine. We decided to go back because of the gabapentin causing me breathing trouble, so it needed changing. Because it was for this reason, I didn’t mind being woken. I got up and dressed as quickly as I possibly could, and had time to eat my cereal but not have coffee before we had to go out. 

Dr. Carter was a very sensible and reasonable person, and she actually listened to what I had to say. After some chat, she just asked what I wanted. I said morphine or oxycontin, so we decided on oramorph. I have to taper off the gabapentin first, so I’ll start it four-hourly on Thursday. Hooray!

Came home to have coffee and give the kittens breakfast. I spent the rest of my morning writing, and anxiously checking my inbox for replies from some people I sent my piece about second transplants to. 

After lunch, I watched the third episode of Mr. Robot, so I’m caught up on what’s been shown, and had just started one of Fringe when Sheila rang to tell me about a potential adopter for Nola. We went through all the information, and had got to the end when she was recanting a conversation she’d had with the woman, said the name of the kitten she’s interested in, and it isn’t one of mine at all! Whoops. At least she realised before I phoned the woman; that would have been very confusing. 

After we hung up, I have started on the cookie jar cat, and I’ve had responses to both the emails I sent which I am 90% happy with so it has been a positive day!

The 3rd of August.

It was not a good night, and the day has not been much better. I was really cold in bed, having to pull up my blanket over the duvet to be warm enough. In August. I despair. 

I woke up ten minutes before my alarm, which was set for half past seven because I needed to be at the (new) dental hospital for 10.35, but we had to leave the house earlier than we normally would because the cricket was on today and Edgbaston Cricket Ground is right by the dental hospital, so we thought parking opportunities would be scant. This turned out not to be the case; there was plenty on-site, so we were really early!

I checked in and we went to sit in the assigned area to wait for my name to be called. We both got decent chunks of our books read, and not too long after my appointment time, I was called in. Through the doors and down the corridor to the booth on the end, where I met a new dentist called Dev. We ran through my drugs and talked about how I’ve been, then he had a look in my mouth. There is an ulcer on my tongue at the back on the right, but we didn’t think it was massively problematic. He went to get Mrs. Richards to check, and she actually thought a steroid injection was necessary, just to give the ulcer a hand in moving on. This was a surprise to us but I wasn’t opposed to the idea. Dev got another dentist, a chap I have met before, to help him. He put some local anaesthetic into my tongue, but the first lot didn’t seem to have any effect, so he had a second go, and that one I felt. My tongue then went numb and swelled up as it should have, and then the steroid was injected into the ulcer. I am to go back in six weeks. 

As we drove home, I had to ring Grandma with my huge tongue and explain to her that we had left and Mommy would be with her as soon as possible, because they were supposed to be going to a funeral and time was being squeezed. 

We decided to actually pick her up and go straight to the church, where I would go home from in my wheelchair. However, when we arrived, it emerged that Grandma had a very enlarged leg and a potential DVT, so she was not going to this funeral. We went home, Mommy sorted out her stuff and went back to Boldmere Court to take Grandma to A&E, as the GP was going to take too long. 

I had to wait a good couple of hours before my tongue had gone down enough for me to be able to eat lunch, which I managed to make but my back did not make it easy as I had to go down to one gabapentin today. Like being constantly poked in the back with a cattle prod. 

The post arrived, and there was a letter for me from Andrew Mitchell, my MP, in response to my email regarding Anthony Nolan’s campaign to not withdraw funding for second transplants. He was not interested. He feels that they’re not cost-effective, not good value for money for the taxpayer. I was a waste of money. He also wanted to let me know just how much the government has done for the donor registers, which is all well and good but pointless if we’re not able to use those donors for their matches. So then I spent the rest of my day trying to write something about it. It was hard. 

Mommy got home about teatime. Grandma’s blood test didn’t show a DVT but that’s not 100% reliable so she has to go back for an ultrasound tomorrow. 

Morphine in the morning. Hopefully I don’t throw up.

The 23rd of June.

My body’s punishment for taking lorazepam was to wake me up at quarter to four this morning! Oh, the end of July cannot come soon enough.

I got up at seven, and I decided the most productive use of my morning was to train, after breakfast and coffee. I had to ring up the secretary of the gynae lady I’m supposed to see who says they haven’t had the letter (even though I know it’s been sent). I spoke to Andy Toogood’s secretary just to check, and she has sent it, but she’s going to fax them another copy. I’ve definitely got some bleeding going on and I just really want to know what the fuck’s going on.

This afternoon I caught up on some ridiculous television (TOWIE) and painted my nails in sorbet shades.

I’m just so very tired and I hate evenings in steroid time because I just have no energy. Becky came over very briefly after school because I’d ordered some teacher biscuits for her but then she’d been poorly, but now she’s fine so I could give them to her! She’s very excited to eat them.

The 24th of June.

My tongue hurts and I am dangerously close to burning out. I was awake at five again, and if Zopiclone kept me asleep, I’d have one. It’s too soon for more lorazepam. We had to be at the dental hospital for 9.15 this morning, so I got up at half six anyway.

I was seen quickly by Dr. Albuquerque (yes that really is his name) who I met last year, and once again he was offering to biopsy my tongue. I do not know why he’s so keen to have samples of it! He also suggested I wear my mouth guard at night to try and stop me aggravating the ulcer too much (I grind my teeth in my sleep), which I’ll give a go. Mrs. Richards thought one last injection of the stronger steroid was a good idea, so we did that.

We went to town on the way home and I bought some sweatbands for my wrists as the kettlebells are bruising me, some stuff from Superdrug, some cheap wool and we also stopped at Maplin’s for a power extension cable.

When we got home, we had lunch and watched some tv, then Mommy went to see Grandma and I lay on the sofa and finished The Quarry. Now, if you want an unrealistic portrayal of dying and a tragic teen love story with infuriatingly unlikable characters, read The Fault In Our Stars. If you want to know how it feels when you’re dying, read The Quarry.

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The is a “corker” aka a brownie inside a cookie from The Brownie Bar and they are lethal.

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I ordered this sleep mask and I can’t wait to wear it in hospital and freak out the night staff.

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The 15th of June.

Well today I have learned that my body cannot cope with large amounts of fried food in a short amount of time – on Friday, I had a burger, and today I had a veal escalope which was pretty big. I can’t imagine how I might have felt had I actually finished it.

I had a Zopiclone to try and help me sleep, but it didn’t really. Well I got to sleep fine, I just wake up early and get stuck! So I got up and gave Daddy his Father’s Day present (a three month coffee subscription) and card, then watched a bit of Sunday Brunch while I had my breakfast.

We were going out for lunch at Côte for 12:45, so I went back upstairs to get dressed and ready for that, then we spent a leisurely couple of hours having yummy food before taking Christine to her train. On the way home, I thought about doing a condensed sort of workout if I had time after editing the photos from Thursday. It turned out I didn’t really – all the fried food had made me really burpy and I’ve had twelve (yes, twelve) Deflatine since getting home, plus nearly been sick. This does not bode well for my planned visit to Five Guys on Wednesday with Sadie!

The 16th of June.

Another day, another jab in the tongue. Most of my mouth is pretty clear after going back on the steroids, except the one ulcer that is always the epicentre of my oral flares. I was awake at half five so would’ve gone out first thing if I could, but the earliest Mrs Richards could see me was this afternoon.

I decided to work out this morning after my rather excessive past few days, then after lunch and half a Nutella brownie, we went out to the dental hospital. The waiting room wa really busy so we thought we might have a long wait, but I actually got called in fairly quickly. She had a look and agreed it was a good idea, but unfortunately they didn’t have any of the usual, stronger steroid, so I had to have more of the more potent one. My tongue’s still a bit swollen five hours on, but I think it will be better in the morning.

Since we got back, I’ve just snuggled with Oscar and watching things on the box. I’m super tired because I keep waking up so early but nothing can get me back to sleep while I’m on pred. If things go to plan, I ought to be sleeping through the night again by August.

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The 28th of May.

I feel a bit battered tonight. I was up at half past seven to be at the dental hospital at ten. I saw another new person who had a look, wrote some notes and went to get Mrs. Richards and Jon who saw me last time. They  asked me how I felt about having the injections again just to really kick the ulcers out. Deeper this time. So I lay there again and let him do four more injections, deep in the right side and right in the tip of the left side, then he had to hold it really tightly with some gauze. I think my body went into slight shock afterwards – trembling, and now I’m still cold. I hope sleep cures this. The local wore off ages ago, but because the needle went in so deep this time, it’s really bruised and still swollen tonight, whereas last time it was fine by mid-afternoon, really.

This afternoon, I watched the last two episodes of Hannibal and now we’re watching BGT and I’m shattered. I’m hoping I feel better tomorrow for training with Danny.

The 29th of May.

I am a bit knackered tonight – my tongue is not 100% yet and I had training with Danny today.

This morning I wrote up a couple of blog posts and gave the cat a good brush because he has been a howly monster.

Danny came at one and worked me really hard for just over an hour, doing kettlebell snatches, cleans, clean and presses and chest presses with my feet off the floor. Burned over 600 calories and now I am pooped.

This afternoon, I watched Nashville and looked at a couple of properties we’re thinking of going to on holiday. We also proof-read some reports for Becky,

I want a big sleep and a puffy dog to play with and a hug.

The 12th of May.

Yep I started my day off by being stabbed in the tongue. I was up at half seven for time to make porridge and coffee before we left for the dental hospital at half nine.

I saw a chap I’m sure I’ve never met before but knows an awful lot about me. He had a look and a feel, asked me about my drugs and photopheresis, then said he didn’t think the steroid injection was necessary, just stronger steroid mouthwash, but he’d consult with Mrs. Richards first. She came to look and feel (along with another doctor who just came to peer) and she disagreed; I needed the injection in both sides of my tongue. So then it was all drawn up – an injection of local anaesthetic in both sides, and an injection in each side too. I am not going to lie, it was pretty painful, but it is not the worst thing I’ve ever had done. Then we left with a prescription for Flixonase mouthwash and spray (it’s for your nose, but I’m to use it in my mouth. Whatever), an appointment for two weeks’ time, and my tongue feeling thrice its usual size.

I wasn’t allowed to eat or drink until the anaesthetic wore off, so to distract me, we went shopping to get Daddy a shirt for the wedding. By the time we got home, it was lunchtime, but I had to wait a little while longer before I could have my Hello Kitty pasta. I wasn’t quite ready for anything remotely seasoned yet. For the rest of the afternoon, I have watched tv and read this month’s magazine from Stack, which was Offscreen, about peoples of the internet. I love getting stuff delivered to my house that I would never otherwise find. It’s almost like having Borders back.

The 13th of May.

I think today was the “it gets worse before it gets better” day. In terms of my tongue. The main ulcer is pretty vast, but the rest seems under control. I am just crossing my fingers that it now starts to improve.

I had a not particularly exciting morning, roaming Pinterest for hair inspiration. I don’t know what colour(s) I want, what cut. I will probably go and just give them free rein like I always do. I just know I want something vibrant.

This afternoon, I worked out while chromecasting Buffy from Netflix. Becky texted me at the end to check that we were in, which distracted me so I forgot to stretch. So that’ll be fun tomorrow.

She had a little rant at us about life and we placated her with tea and chocolate brownie. Daddy had a stressful day too so he was glad to come home to food and rest and hugs.

Ohh my tongue is sore. I really hope this new, more potent mouthwash works sooner rather than later.

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