Archives For injections

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 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 9th of March. 

Oh god I am so over winter. It is supposedly going to be sixteen degrees by the end of the week; the weather people better not be wrong. I’m sick of my toes being cold. 

I have tried to spend much of my day with Monica. I picked her up onto my lap last night and she stayed and was happy, so we’re definitely friends. After I’d done a blog post, I went into the back room to hang out with her while I watched what was left of This Morning. She was not in the mood for hugs, she just wanted to play, so I didn’t try to grab her. 

I left her to have lunch, then went back to watch a Pretty Little Liars but she stayed under the bed for that. I was supposed to be meeting someone for coffee at four, so Mommy gave me a lift because she had to do things in town too. I had a feeling that the person wasn’t going to turn up so I’d taken a book, The Outsider by Albert Camus. I sat there for half an hour and drank my coffee while I read, then I left. Oh well! Not entirely surprised. No second chance. 

The 10th of March. 

I got on the scales this morning and I’ve lost weight again. I suspected I had because my jeans are looser and I’ve been finding it difficult to finish my main meal in the evenings, like my stomach has shrunk again. This doesn’t make sense, and I don’t know how to fix it. It could be related to the antibiotics I’m on but they’ve never affected me like this before. I suppose I’ll finish the course, then I need to see what happens. I really don’t need to get any thinner. 

I saw Monica briefly this morning, but had to leave her at twelve so I could eat lunch before we had to go to the chiro. Trine crunched me a bit but not a great deal, thankfully. More neck-squeezing than I would like. She’s asked me not to get any more coughs and I’ve said I will try. I also showed the receptionists pictures of Monica and they think she’s adorable because she is. 

We popped into the GP’s on the way home to give them a copy of my vaccination protocol, because I’ve never had the post-transplant jabs you’re meant to have after six months (I was always too poorly) so those are due to start in a couple of weeks. 

This afternoon I had a good, long kitty cuddle until my leg went numb. But it’s worth it; she keeps me warm.  

 

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!

The 14th of November. 

Our suspected pleurisy is not, in fact, pleurisy. It seems I have a pulmonary embolism. 

I was obviously still in pain this morning, and I barely slept. It felt easiest to stay in bed, while Mommy rang Nicola the clinical nurse specialist who spoke to Igor and he wanted to see me in clinic at one. Kate the district nurse came to flush my line, which worked fine, so the problem isn’t in there. I stayed in bed, dozing in and out until half eleven, when Mommy helped me get dressed, then I was able to have lunch before we came to the QE. 

I had some obs and bloods done, and Igor chatted to some other doctors. He said it probably wasn’t pleurisy, but could be the line again or a PE which was unlikely (so obviously that’s what I have). He was also concerned by my resting heart rate of approximately 120, so he wanted me to have a CT scan then stay in overnight for observation. 

I couldn’t have the type of CT they wanted to do because I’m allergic to the dye and the substitute wouldn’t work for some reason, so nuclear medicine were very efficient at getting me in almost immediately for a different kind of CT which involved me inhaling some radioactive gas, them taking some pictures for twenty minutes (I had a little nap), then I had an injection and some more pictures for five minutes. Then a chest x-ray to make a fully comprehensive picture of my lungs. 

And diagnosis: pulmonary embolism. Treatment: clexane injections again. Still staying in for obs, but home tomorrow afternoon. 

Got to keep these doctors on their toes. 

The 15th of November. 

Back home! I had some lorazepam last night because I just wanted sleep, so I made sure I had the oxygen on and I slept beautifully. I’m not sure what time I properly woke up, but I felt alright. I had a bread roll and a satsuma for breakfast, plus an instant latte from a sachet. 

While I watched Saturday Kitchen, I wrote in my diary, then put those entries into the blog, which was relatively time-consuming. Dr. Tim came to see me at about half twelve and said I could go home! We weren’t expecting to leave until four, so when Mommy arrived with lunch, we ate it and subsequently left! It’s a good thing she hadnt brought me any extra stuff. 

So we packed up the room and got home just after three! I have been a busy bee since then, trying to sync Apple devices, do a little bit of crochet, make sure all the blog posts were completed, and tonight I just have to decide on my appearance tomorrow and I need to tidy up in the living room because it’s a mess. 

All my chest pains and headaches are gone tonight. Drugs are magic.