Archives For dental hospital

The 8th & 9th; So much pain.

September 11, 2017 — 9 Comments

The 8th of September. 

Ooh it has been a long day! I was up super early to be at the dental hospital for my half nine appointment, which I was called in for only half an hour late, so I got a bit of book read. It was a student clinic, so I was examined by one girl, while one typed and the other one observed. There’s not much to see in my mouth at the moment, so it was a pretty quick examination, then the longest part of the appointment was waiting for the consultant to come. To pass the time, we talked about what we’ve all been binge-watching on Netflix. He eventually appeared, had a look and agreed that my mouth is in excellent shape (take that, Amy the hygienist) so don’t need to go back for six months! Let’s hope I actually get a letter. 

We got home about eleven, and I had time to write up a blog post before it was lunchtime. I was in the middle of eating my grapes when the doorbell rang, and it was Carol! We were expecting her, she was just a little early. No matter! We then had a lovely afternoon catching up, eating cake and discussing our various crafty projects. We hadn’t even noticed when it got to six o’clock, but she really had to make her way home then, so that is all that has happened! Much, much chat. Exhausted now. 

The 9th of September. 

Oh god today has been horrific. So much pain. No reason. At some point in the night, something happened, and I became unable to turn over or lie flat on my back. Well, I could turn over, but it was agony. I couldn’t get my back flat without bending my knees. So it wasn’t a good night. 

I’ve spent most of the day unable to move, so I’ve been able to finish the doily I’ve been making. Only left my chair to go to the bathroom, to eat dinner, and when Shaki came to impart kitten wisdom. When I have got up, I made such an awful cacophony of noises. Absolutely dreadful. I am so grateful I have a chiro appointment on Monday. Trine will have things to crunch. 

Nicole and Richard came round to drop off some cat paperwork, and they met the floofs. Shaki came at about five and spent nearly two hours coaxing Hugo into being petted. It involves lots of playing, treats, and basically stroking him until he relaxes. We also have to feed him inside the cage again. And we have to try stroking Henrietta when she’s eating but I’m going to leave that to Mommy because I’m pretty sure I’ll get shredded. 

By teatime, I was ready to cry. Fuck this body. 

The 6th of September.

I am sleepy. Awake early for haematology clinic. We arrived at ten, and left at one. For once, I cannot complain about not getting enough of my book read, because that it all I did for nearly two hours. Charlie called me in, and to be honest, he hadn’t got much to do for me, just prescribe all the drugs, and he’s referred me to an immunology clinic to see how well my immune system is functioning, so that’ll be interesting. 

We got to pharmacy just after twelve, and then went to get coffee and sat around for 45 minutes, waiting for my prescription to be ready. Then a very quick trip into town; I needed another set of drawers, and Mommy decided she wanted some too, so she can put all her cross-stitching threads in them. I also needed toothpaste, and got some flat brew espresso chocolate spread. 

Finally got home just after two, and fed the hungry kittens and ourselves. Then I got to sit and crochet, while Mommy ended up taking Alison into Sutton for some errands, because with a broken wrist, she can’t drive or carry things. Then she was off to Grandma’s! She does too much. I worry. 

The 7th of September. 

It’s a good thing I got a good sleep last night as I’m unexpectedly going to be up early again tomorrow. Rang up the dental hospital to sort out my next appointment, because no letter has come through, and after half an hour on hold, I was given half past nine tomorrow! Wasn’t going to say no, after all that. God knows when the next one might be. 

I’d ordered a memory foam cushion for my wheelchair which we needed to pick up from the sorting office, so we did that, then went to Tesco for some Stork and milk (have some baking to do). 

At home, we found that the cushion doesn’t fit the chair, which was always a possibility as we didn’t know the dimensions, so that’ll have to go back. I also received a coat from ASOS, which I am not keeping – I need something with large sleeves that isn’t the fur (too much shedding) and they’re just not big enough. 

This afternoon, I’ve done a bit more make up sorting with my new drawers, wrote up a blog post, and crocheted some more doily. 

Shaki is coming to see the cats at the weekend. We’ve made zero progress with Henrietta – she still hates me and continues to attack me, even when I am giving her treats. She is probably going to end up going to some stables and catching mice. 

The 5th of May.

More trips out today. Busy busy.

When I woke up, I was struggling, because the oxygen cylinder upstairs had run out. However, things have improved since then. It is always worst in the mornings and evenings. After breakfast, I watched the new episode of Riverdale, and (no spoilers) SO. MANY. REVELATIONS. Also I am sick to death of Veronica Lodge always bringing it back to her and her dad. Do not care, shut up.

I had an appointment at the GP at quarter past one to discuss pain relief. The buprenorphine is making absolutely zero difference to my pain, and she seemed quite surprised to hear this. The next step is to try pregablin instead, so I’ll start that tonight. Fingers crossed it doesn’t affect my breathing.

We came home for about an hour, then we were back out to the dental hospital, just for a check up. They were running late, so I got a lot of The Burial Hour read while we waited. I got called by a young dentist called Joseph who looked about twelve, but was very competent. He looked at my mouth to see if there were any signs of GvHD while another dentist scribed, then we just had to wait for their senior colleague to check I was fine. He was with another patient, and while we sat, we got onto the subject of Netflix, and the girl who’d been writing watches Pretty Little Liars and Riverdale too, and they both watched 13 Reasons Why, so we were in no rush for him to arrive.

Dr. Khan finally came, and thinks my mouth looks the best he’s ever seen it, so they don’t want me back for four months.

As soon as we left, I reopened my book as I was at a critical point, and now it is finished. Oh, Jeffery. Clever, clever Jeffery.

The 6th of May.

Do not like this new pain drug, pregablin. So far it is not making my back feel any better, it has just made me really sleepy all day. Not exactly tired, but my eyes just want to close. It’s not ideal. I’m going to continue with it for a few days, see if the sleepiness wears off and the pain gets any better. I’m not optimistic but I have to give it a chance.

My day has been a really rather dull one, for the most part – I have been sitting with the laptop, typing up the blog entries that I have got behind on posting. There were six to do I got three done. They’re still not posted because I need to add photos and I do that on my iPad. It is very boring but it must be done.

I had a couple of breaks in which I went to sit with Sam and we were both sleepy. He is such a good boy that if nobody wants to adopt him, I will beg Daddy to let us keep him. He won’t live that long, won’t cost us a huge amount of money.

This evening I went out with Sadie to see Joel Dommett. She is a bit in love with him and asked if I’d go so I agreed – although I’ve already seen his show, I was interested to see how he would make the show work, going from a 90 seat room to an 1800 seat one. When we arrived, I saw JT, and we had a little catch up, then he had a look at our tickets and asked if we wanted to go in the wheelchair space instead. Considering they were better seats and I didn’t have to move, I was only too keen to say yes.

The show has definitely improved since October, and I think it actually works better in the larger space. I’d completely forgotten about Laser Dick, but by the second chorus I was singing along again. And he’s changed the ending, which I won’t spoil, but it’s definitely more suitable for the bigger venues he’s doing. He’s not coasting on the fame he’s got from I’m A Celebrity; he’s worked really hard and it’s paying off.

The 23rd of January. 

Much better sleep last night. Think it was helped by having my dressing gown available as another layer. I’m now sleeping in a jumper and pyjama bottoms tucked into thermal socks, under the winter duvet, a blanket and a thick dressing gown. I am the coldest person in the world. 

This morning I did the big birthday blog post, and fitted in two Cats Protection calls before lunch. I also printed off some stuff I want to look over before my Anthony Nolan thing on Thursday, all about the decision to withdraw the funding.

After lunch, I went upstairs and spent a very productive hour putting together the wooden Little My and sorting out my sock drawer. I have too many that I simply do not wear and had forgotten I have, so they’re all going. Yet my drawer doesn’t seem any less full. 

Becky came round with some more birthday flowers for me – she is better than was described, although she was still careful not to touch or breathe on me, which I was grateful for. 

I think another early night tonight – Women’s Hospital in the morning. 

The 24th of January. 

Bleah, early start. Not as early as tomorrow though – we will be leaving the house at 7, so today will seem like a lie-in. Still, I’ll be having some fun drugs that may induce a nap. 

I began at the Women’s Hospital at 10, seeing Dr. Robinson in the menopause clinic. Having read my book for half an hour, I was called in by Elaine, her clinical nurse specialist, and saw her instead. There was nothing I really needed to see Dr. Robinson about specifically so I just gave her an update on my general condition, we talked about my vaginal surgery, and I’ll just carry on with my current management until I see her again in a year. 

Had to make a quick visit to haematology clinic to have my clotting checked for tomorrow, and Dr. Ferguson had asked that I get a tacrolimus level done so I had them look at that too. 

I had to be at the dental hospital for half one, so there was no point going home to come back. Instead, we went into town where I got Mommy and Daddy’s anniversary card and some thank you cards, then we went to Pret for lunch. I got a cheese, ham and mustard toastie which was WAY TOO MUSTARDY so I had my coffee and cookie instead. Stupid pathetic mouth. 

Mrs. Richards wasn’t in today, but I saw two of her team and they were both happy with my mouth is, so no injections today. 

The 9th of January. 

No joy from the postman, nor is there anything on myhealth to show any upcoming appointments. Maybe on Wednesday morning we’ll ring a clinical nurse specialist, or try Andrew Willis’ secretary. 

I’ve had a very quiet day. I did a blog post, then iced three lots of cupcakes for Mommy to take to Grandma’s for her birthday. I got very chocolatey, sticky fingers. 

We had lunch, then Mommy went to Grandma’s and I went upstairs to do some extra moisturising because my skin has become really dry with this flare. Discovered that I could peel all of the skin off my left big toe, which was the worst affected area. Classic GvHD. 

For the rest of the afternoon, I watched two episodes of The OA while crocheting my jumper, but I’ve had to stop because the skin between my thumb and forefinger is so dry and painful. I need some seriously heavy-duty hand cream. 

This evening I have to prepare answers to some questions I’m going to be asked tomorrow. I’m taking part in a radio programme for BBC World Service about death. It will be more uplifting than it sounds. 

The 10th of January. 

Definitely going to ring someone in the morning about my arm – the upper arm has grown to 29.5cm in circumference (compared to 24cm on the left). This morning I did some Cats Protection admin and had a look through the questions for the interview this evening. I don’t need to prepare much, it’s all stuff I can answer off the cuff. 

I had a follow-up appointment at the dental hospital at 1.40pm, so we went out straight after lunch. I saw one of Mrs. Richards’ registrars who I’ve not met before. I explained what I was doing with the steroid paste and my concerns about it not staying where it should. She said that I’m doing it right, but it probably won’t stick because it is on the tongue. She went to confer with Mrs. Richards, who came in to have a look and decided we should put a little bit of steroid in the two sites that are being problematic. More painful this time, right in the raw tip of my tongue and on the top. Thankfully the swelling has gone down enough for me to be able to speak. 

Afterwards, we went into town so I could stock up on facewipes and toothpaste, and we went to Lush in search of hand cream. Ended up talking to the perfect sales assistant who has a similar problem so knew exactly what to recommend. Got a tub of Helping Hands. Let’s hope it does the job!

I’ve had the pre-interview for tonight’s 9pm one (another one cropped up for BBC WM randomly), and at half six the chap is coming to record me for the one about death. In between then and now, I’ll eat dinner. 

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.