Archives For gvhd

The 10th of February. 

The news is so depressing, I have put Phineas and Ferb on instead. It is a nice distraction, and there are amusing bits for grown-ups. 

I had planned on being productive today, but somehow it did not really happen. I wrote up a blog post this morning, although in writing that, I’ve just remembered that I didn’t publish it yet. Will do that when I’m finished here. 

Mommy went food shopping, so I was twiddling my thumbs while waiting for her to come back so we could have lunch, but it took somewhat longer than I anticipated, so that was time wasted. Then after we had eaten, we decided to watch some more Case, and I can’t crochet while that’s on because I need to pay attention to the subtitles. 

So, two hours were gone on that, and now I have half a doily. One positive of the day is that I found another jumper that can accommodate my ginormous arm. The parka is not going to cope anymore, nor will it keep me warm, so when I go to the QE in the morning, I am going to have to wear Joan’s enormous fur that she gave me. Knew it would come in handy one day.

The 11th of February. 

One can never call a day when one is up at quarter to seven (particularly when that day is a Saturday) unproductive. I had another hospital appointment, this time with the eye department because of the ridiculous sensitivity that I’ve had for the past eight months. First, the chap could see that I had several lower lashes in my left eye growing inwards so he numbed it, then whipped them out with some tiny tweezers. There is also some mild GvHD acting up, not cool, so I’ve got some dexamethasone eye drops and hopefully they will do the trick. 

Went into town afterwards to get some toy stuffing, and got some more of my favourite chocolate from Selfridges as it was half price (slightly worrying – I hope it doesn’t mean they’re going to stop stocking it), alongside some triple double chocolate Oreos which we are going to put into brownies. 

Popped into Tesco on the way home, where I felt very overdressed, driving around in the fur. It’s not for supermarkets. Then I was starving by the time we got home, so we had lunch, and since then I’ve been crocheting Carol’s birthday present. Becky came round because I’d bought her some Malteaster bunnies, and she updated us on the local news, which is that the WHSmith has had its cash point ripped out. Plus school news was swapped for health news, and now I’m watching us probably lose to Wales at rugby. 

The 3rd of January. 

Of course the day we cancel my chiro appointment because I feel like crap, my neck starts acting up. It was fine before today, almost as if it knows. So unhelpful. Still, we spoke to the QE this morning and I can go to clinic tomorrow so finally I might get some things done about my feet, hands and arm, which are the most pressing issues. 

The only other thing I did this morning was a blog post, and I had a nice sit with the kittens – trying to squidge them as much as possible before they go to the adoption centre. 

This afternoon, I had the joyous task of phoning lots of potential adopters. A couple of people have changed their minds or got kittens from elsewhere, so I could tick them off the list, and most of the other forms I had, I forwarded to the one fosterer who has most of the kittens in branch. 

Since then, back to crocheting. I think I’ll have another early night tonight; I’m still super tired, and seeing as I need to be up early for clinic tomorrow, I need all the extra minutes of sleep I can get. 

The 4th of January. 

Neck not so painful today, I knew it was just throwing a strop. Thankfully, clinic this morning was helpful. I saw a specialist reg called Praveen who I’ve not met before, but he was very good. He took what I said seriously, and has some solutions, or at least the beginnings of them. My hands and feet are probably GvHD, so just carry on with the steroid cream, and about the arm and the eyes, he went to talk to Ram. He came in to have a look and said to email their man in opthalmology (pretty sure they knew what it is but I need to see a specialist to be sure – probably an eye GvHD thing) and call Andrew Willis, which he did there and then. He wants a venogram and the request has been put in so hopefully that comes through quickly. 

Popped into town on the way home to get Grandma a birthday card and a present as it’s her birthday on Monday. Meant to get some thank you cards but I forgot because I’m a nitwit. 

This afternoon, I have been watching Nashville and Conviction while crocheting. Got two episodes of each watched, and I’m on the last stripe of the blanket. I haven’t actually tried to get in it yet – I will be mightily pissed off if it’s too small. It shouldn’t be. Fingers crossed. 

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 26th of December. 

Changed our minds. Cancel the steroids – we have a new theory. We still think my mouth is GvHD, and so ring up the dental hospital first thing on Wednesday, but we’re less site about my feet – we now think it might be a condition called erythromelalgia, which can be caused by high platelets (I have bucketloads of them). We might go to the QE after the dental hospital and until then, carry on with cold water and elevation. 

I spent the whole morning in my pyjamas, then when I did finally get dressed, I put on my very soft new trousers and have had a very comfortable, cosy day. Except for all the pain. 

At lunch (Nigel Slater’s festive sausage roll), I just looked at it and thought I might cry. Just feeling so shit, and I really don’t know what the reason or solution is. If the pain team are required I am not hopeful, as I’m still waiting to hear from them about my back. I need an alternative to gabapentin, a drug for nerve pain that won’t impact upon my breathing. 

This afternoon has just meant sitting in front of the films on BBC1. Tonight is the last ever proper Bake Off and it think I will weep salty tears into my Christmas cake. 

The 27th of December. 

Changed our minds again. My feet have been so much better today and don’t know if that’s because the steroids are treating GvHD, or if it’s just the anti-inflammatory effect they have. Anyhow, I took the pred again today. I’m not sure about tomorrow, apart from definitely ringing up the dental hospital, because my tongue needs injecting. 

I spent all of my morning writing up my Christmas Day post, then after lunch, I went to the kitty room to watch an episode of The OA and see if I could work out which kitten is still doing dodgy poos. We have been taking shifts to watch them, but haven’t been able to work it out yet. 

I left when Daddy came in to watch The Grand Tour (I know, but I can’t stop him), and Mommy and I watched the Big Fat Quiz of the Year. Now we hear Richard Adams and Carrie Fisher have died. I wonder who is left for 2016 to take from us. Just finish, then everyone can stop dying and everything will be fine. 

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 22nd of December. 

WELL as if things weren’t bad enough, as soon as I woke up this morning, I knew that the GvHD on my toes was flaring up. Mommy and Christine had gone to a walk-in centre because Christine’s throat was all gross and infected. They came back with no antibiotics, I showed them my toes and Mommy started phoning people. First we tried the haematology pharmacist, who suggested we call the emergency oncology nurse number. I did and spoke to a nurse, who said she’d talk to the doctor and ring me back. 

So I have been mostly sitting around, waiting for a phone call. Eventually I had one from Sandeep who is excellent, and she immediately wrote up a prescription for steroid cream which Daddy is picking up after work. 

Christine helped me wrap my last present for Daddy (too big for me to do alone), and I have watched How To Train Your Dragon. 

I could really do without my skin going insane right now. Systemic steroids are not an option. 

The 23rd of December. 

We are all broken except Mommy. Me with my GvHD, fat arm and cough-causing lung shadow, Christine with her infected throat, and now it seems Daddy has a temperature. Going to be a great Christmas here!

Mommy and Christine have spent the day baking all of the things. Finally we have mince pies (not that I’ll be eating them, bleugh), Nigel Slater’s festive pie, various cakes, and I have iced and decorated the Christmas cake with lots of snowmen. 

I have watched Sister Act 2 and Arthur Christmas, put my presents under the tree and told off the kittens because one of them has chewed through one of the wires to a speaker. Argh. Thankfully it is fixable (or so I’m told). 

Antibiotics make me hungry all the time. Good thing it’s Christmas and there is food covering literally every surface. 

Even though we’re poorly, we must remember how lucky we are. 

The 21st of September. 

Yeah everything hurts. Literally every muscle. I just got stuck in the middle of the living room because it hurt so much to move my legs. Mommy has found it all vastly amusing and has been laughing at me all day. 

This morning I did very little seeing as moving was so agonising, but this afternoon I had to extricate myself from the armchair because we had to go to the GP for our flu jabs. When we arrived, they weren’t actually open yet and people were queueing outside. Thankfully we didn’t have to wait too long before they opened the doors to let us in. We were told to have our left arms ready and Helen called our names. We both got jabbed and off we went!

When we got home, I looked into the whole blog-hosting thing, and it seems that SquareSpace don’t do domain transfers yet. Seeing as I just got a bunch of business cards made with my website address on, I kind of need to keep it. I still think I’m going to do an overhaul of the site but that can wait. 

When I came back downstairs, we watched the final episode of One of Us (I worked out the twist about two minutes before it was revealed) and I complained about being freezing. Thermal vest, jumper and cardigan. 

The 22nd of September. 

Today has been marginally better. My movement is about 2% better. Seriously, I am broken. I have actually tried not to move because I can feel how stiff I am and I know when I do have to get out of my chair, it’s going to be excruciating. 

Our only trip out today was to the Women’s Hospital for my follow-up appointment with the specialist nurse to see how I’m getting on with the dilators. She is very punctual – 1.45 on the dot she called me in, I didn’t even have time to open my book! She asked how it was going and I said not well; I am still on the first one and feel like I’ve made no progress at all. She asked a couple of questions to make sure I’d been doing it right and I have, so we had to go to an examination room. Jeans and pants off (with difficulty), legs akimbo, and she had a feel (it was more professional than this sounds). She said it feels quite badly stenosed, which is something you can get from radiotherapy or chronic GvHD, but to determine as to whether it’s that or muscle spasm, I’m going to have to have a general anaesthetic to be examined. So that’s fun. I do like the magic liquid sleep. 

Since getting home, I have stayed in the armchair and crocheted. I really want to stretch out on the floor but I’m not sure I could get up again.