Archives For steroid

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. 

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 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 1st of March. 

Bleah I feel rubbish. Barely slept because I was coughing and sneezing. The house had no heating because the boiler man was coming so it all had to be switched off. I’ve been in the knitted joggers and my extra warm thermal polo neck and they did the job of the radiators until the boiler was fixed. 

That’s all there is to say about today. I have been taking Day & Night Nurse, Carbocisteine, Strepsils, plus spraying my tongue with the strong steroid because an ulcer is trying to happen there. Going to clinic tomorrow to get some antibiotics because I’m bringing up yellow junk. Hopefully I can get some of it into a sample pot in the morning so they can test it. 

God, I hope this doesn’t last long. 

The 2nd of March. 

I don’t feel totally terrible. I could do with more sleep and I wish I weren’t coughing up junk but at least I’m not feeling completely wretched. I barely slept again, then got up at eight so we could go to clinic to get me some antibiotics. I put myself in the side room, because if I’d been anyone else in clinic, I’d want the person filled with germs isolated. When I had my bloods done, I got a sample pot which I managed to hawk from yellow stuff into and now that’s off being analysed and cultured. Ram listened to my chest and heard the ever-present crackles in my lower right lung, and he gave me some Co-amoxiclav and sent me for a chest x-ray. I forgot how big those tablets are. 

We got home just before half past one, avoiding all the swirling snow we’d seen earlier. I had scrambled eggs for lunch because my tongue is bothering me. Right now it just feels raw and sore, especially if I eat something acidic. Talking is also a little bit tricky. If it lasts longer than a few days, I’m going to have to get injected again. 

Obviously that is a boiled egg and soldiers which I had for lunch on Tuesday, I have not lost the plot completely. 

The 21st of April.

Another day of coping with my ulcers. Thankfully, I haven’t had to talk or eat much. I have my appointment at the dental hospital tomorrow, and they rang this morning to discuss clexane and I need to halve my dose tonight. Last night’s injection really stung for some reason.

I was on my own all morning, as Grandma’s polyp removal operation was today, so Mommy had to take her in for half seven, although she didn’t get taken down until lunchtime. She’s being discharged about seven, if everything’s gone to plan.

I have been crocheting the pig all day, so now all the pieces are finished, I just need to see him up tomorrow.

The 22nd of April.

A 7:15 start plus an adrenaline rush so early in the day means I’m quite weary now. I had my dental hospital appointment at 10:10, but we ended up getting there really early because there was very little traffic. This ended up being a good thing, because when we opened the boot, we realised the wheelchair wasn’t in it! We hadn’t got it out of the garage. Numpties. So we used the extra time we had for me to slowly walk the 200m from the car to the front door. I had to stop twice.

One of Mrs. Richards’ minions looked at my tongue, and he agreed that injections were probably the best plan, but he went to talk to Dr. Albuquerque who came to look too. Once more, he brought up the idea of tongue biopsies but I managed to dissuade him. A nurse came to hold my tongue, and I had local anaesthetic injected into each side, then the steroid injections. Then we left! Mommy brought the car to the front so I didn’t have to walk back.

We stopped at Boots and Tesco on the way home, for some cream for dry feet (actually for my hands – they are so dry it’s not even funny) and mascara, then I’ve cream for my lunch as there’s not much I can eat with a swollen tongue.

This afternoon, I sewed up the pig, I just need to get some ribbon to go round his neck. My tongue has slowly gone down over the course of the day, so I should be able to eat the chicken we’re having for dinner. I just hope it was worth it!