Archives For mouth gvhd

The 14th of July. 

I have not really felt up to participating in life today. Not quite under the heavy cloud, but definitely not feeling myself. 

I didn’t have a great start to the day; up early again for the dentist this time. I saw the dentist first, and that was fine, but then I saw the hygienist and it wasn’t my normal one. I did not like her. She was very against me using a manual toothbrush or floss picks, and she was adamant that the kids’ Sensodyne Pronamel toothpaste isn’t minty (it definitely fucking is) and wouldn’t listen to me when I protested. She said I had loads of plaque, then cleaned my teeth really aggressively and painfully – there was blood all over my face and bib which has never happened before. She really didn’t seem to care about my history, or the fact that in all the time I’ve been at this practice and seeing Mrs. Richards, nobody has felt that I had any problems. I was very glad to get out of there. When I had to rebook, I made a point of making sure it was with my normal hygienist. Not seeing that woman again. 

Got home where I could finally have my coffee (no time before I went out), and I rang the lymphoedema clinic that has been recommended to me. They said I needed a referral, so on Monday I’ll get a consultant to write a letter. 

The rest of my day has been spent looking for something to wear on Tuesday. Fuck my arm. If I weren’t right-handed, I’d have chopped it off. 

The 15th of July. 

I am so tired. Another bloody early start for another morning appointment. This time it was to see the eye man at the QE. They were not running so on time today, so my 9.50 appointment ended up being more like half ten. Still, it was good news – said they were the best he’d seen them, which would certainly tally with how I feel. I can cut out one eye drop, so it won’t take so long to go to bed, and he’s prescribed something that might be better than Hyabak. 

Got home about twenty to twelve, and the stuff I’d ordered from ASOS yesterday had arrived. I’d sent for a couple of shirts and a dress. I’m definitely keeping at least one shirt, not sure about the other, and the dress is going back. It’s too dark for me. Shame. 

This afternoon, I listened to the tennis while writing up the venoplasty blog post, and I’ve been to pet the kitties a few times. There is interest in Bree but I really need Betty to go first, or she’ll freak out of she’s alone for the first time in a new place. Bah. 

Finally finished that doily I have been working on. I think next I will do some things for the new babies that are coming soon – Peter and Sophie’s, Michaela’s, and Robyn and Stu’s. All the babies!

The 17th of January. 

I have a venogram appointment! I checked on myhealth this morning, and I am booked in for the 25th at 9am. No letter yet, that will probably be tomorrow, and will include more detail. Looking back at previous venograms, there have been occasions when the venoplasty’s been done immediately, and when I’ve had to go back and have it another day. Fingers crossed it’s the former but I have no clue. 

This morning, I wrote up a post and painted my nails while watching Theresa May’s Brexit speech. It was not particularly illuminating, apart from making it obvious that if we don’t get what she wants, we are quite screwed. People keep saying “We haven’t had the Brexit crash that was predicted” like it’s fine but they don’t seem to have realised that we haven’t left yet.

Mommy has been out most of the day, taking Grandma to a funeral, coming home, reading a letter, and having to go back to Grandma’s to tell her that this letter said that her cousin has died. Not a great day for her. 

I watched the final three episodes of A Series of Unfortunate Events and crocheted. I had started some pyjamas for the doll I made ages ago, so now she has the trousers and I’m working on the shirt. 

Phoned up several potential adopters to have the standard conversation, had to explain that we actually have practically no cats/kittens at the moment, but they are willing to wait. 

The 18th of January.

Today has seemed to go by ever so quickly. I looked at the clock and suddenly it was half past three. Where did the time go?

This morning, I was able to have orange juice with my breakfast for the first time since before Christmas. Think my mouth might be okay to eat fun things on my birthday, maybe even have some champagne! Such excitement. I have ordered a mini Curly Wurly cake for us to pick up on Saturday and I’ve been trying to decide what I’m going to wear. Thankfully we’re not going anywhere fancy so I don’t have to worry about a dress code, but I’d like to look reasonable and that’s tricky when one of your arms is massive. I’m not sure whether my leather jacket will fit so we’ll take the furry lining out of my park and then I think it will be big enough to accommodate the enormo-arm. 

After lunch (during which I had an apple, another thing I haven’t had for ages because it was too pointy), I had a Cats Protection call, then I made the pyjama top to go with the bottoms. I now remember why I’d stopped doing stuff from that book – it has mistakes as it’s a translation. Bah. I also started a new series on Netflix called Glitch. It’s like The Returned, but Australian, and they all crawled out of their graves at the same time not knowing they were dead. I’ll see how it goes. 

Hair change tomorrow. What colour to go?

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 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!

The 19th of April.

I started my day feeling pretty great, but this evening I am grumbly. Zopiclone finally did its job, so I had a full night of excellent sleep, waking up just an hour before I planned to get up so the Tramadol had time to kick in.

Sunday Brunch and blog post, then we had Grandma round for lunch, which was duck in port and orange sauce, then special chocolate mousse with Cointreau which is the best pudding ever.

When we were finished, I started working on the first part of my special crochet project (I can’t say what it is as it’s a secret surprise). James came round with the pressure washer and he and Mommy had rather a long chat about his new job and the university, but I wasn’t paying a great deal of attention because the pattern I was following was fairly complicated.

I completed that part, then I started on the pig that’s next on my list, and now here I am. The reasons I am grumbly are twofold – a) I think we need to ring the dental hospital in the morning as the ulcers on my tongue aren’t improving, so steroid injections are going to be the next step, and b) my right foot is still swollen, despite the furosemide. I think I had to take it for at least six days last time, so I’ll carry on and keep my fingers crossed, but if it continues or happens again, I’m going to have to start harassing doctors again, and I really don’t want to do that. I just want my body to behave completely, no extra problems, just for a little while. Is that so much to ask for?

The 20th of April.

My mouth is becoming a real problem, which seems to ring bells from a year ago. I have three ulcers on the right side of my tongue, and one on the top/left. Up until today, they’ve not really been sore, but today it is much worse. We rang the dental hospital and I have an appointment for Wednesday, and we did hope they might ring with a cancellation, but unfortunately no such luck, so I’ll have top keep quiet, spraying difflam and flixonase and drinking lots.

I had a chiro appointment at 12:15 which I was slightly concerned about, but my back’s been okay today. So much so, that I actually haven’t had any Tramadol yet. Trine felt around, and it seems that my lower left back/bumcheek just went into spasm on Sunday night for no particular reason. She did a lot of massaging which I had to grit my teeth and deal with, but afterwards, I did feel better. I popped into Black Sheep as there seems to be a weird hiccup about my next appointment.

This afternoon, I have been crocheting the pig snout and ears, and some of the special project too. Little tricky bits! I’m just trying not to move my tongue too much. Grandma has an operation tomorrow, so if the dental hospital ring, I have to just hope it doesn’t clash with her in any way.

The 18th of December. 

Well, today has been much less great than yesterday. At about half past midnight, my breathing suddenly became much more laboured and I needed to use the oxygen to be comfortable. Combined with the pain I’m still suffering in my feet and ankles, I didn’t fall asleep until half past four, and I was awake again just after six. 

I’m also concerned about my mouth – it’s just starting to break down in my cheeks, plus a teeny ulcer on my tongue and sore lips. We rang the dental hospital to see if Mrs. Richards could see me as an emergency appointment in case she thought I needed a steroid injection. They were really brilliant and got me in to see Jon Higham who I’ve seen before while there was no one else around. He could see what I meant but didn’t feel injections were necessary and might even be detrimental. We’re going to hit it really hard with topical steroids, plus I’ve gone back up to 5mg of pred. It’s fine; I’d rather have it all under control over Christmas. 

We went to the QE for ECP afterwards which was all fine, and Igor sent an SHO to come and see my elephant feet. Everyone agreed that my oedema and breathing can’t continue, so they’ve given me a new drug regime and I just hope it works!

I would like two things for Christmas – to have normal sized feet and to be able to eat the foods!

The 19th of December. 

Happy marrowversary to me! Today is seven years since my first stem cell transplant from Christine. I got a penguin charm from Pandora, and Christine is the big penguin and I am the small penguin!

I had my fringe trimmed at Bad Apple at lunchtime so I took them a Christmas card and a copy of Grazia. Michaela really liked my fringe in the photo so cut it like that and took a photo. Then Amy was free and I got her to paint a couple of Christmas Minions on two of my nails which are awesome. Then Mommy came to get me and we had lunch at home before Naomi came!

She and Mommy used to work together at the Hippodrome and have stayed friends and she’s just lovely. We haven’t seen her for ages so she came over with lemon drizzle cake, flowers and presents and we had a long-awaited catch up. 

Just after she left, I saw on Facebook that a little boy we know is getting a new liver and bowel tonight! He is in theatre as I write and it is just wonderful. An incredibly kind family have made the brilliant decision to allow their loved one to save someone else. Life is blindsiding and magical.