Archives For gvhd

The 5th of December.

Ugh fuck I am tired and sad and stressed.

First thing I had to do was to out with Mommy to the sorting office to pick up my Christmas shoes, but that was the only good part of the day.

When we got back, I wrote up a blog post, and that took longer than it should have, which was bothersome. Then Rosemary came for lunch, so that was distracting and meant I couldn’t get on with more jobs.

I had some of the soup and cheese scone that Mommy had made, then I got on with my planned work. There are just loads of questions that keep coming up in the organisation of this event – it is a lot more complicated than I had imagined. I sent Daddy an email with some questions which he had additions to, then he got angry with me because he misunderstood my reply. I think we are friends again now though.

After that, I got my crochet out and have essentially completed one present. Two more to go. Then two other things to make. Sigh.

The 6th of December.

Mood greatly improved, despite a dodgy sleep and an early start. I woke up at three, then again at half five, after which I didn’t go back to sleep. Really hoping tonight is better.

I had haematology clinic this morning, where I met a new reg called Dr. Hussain. One of the first things he asked me was if the paper about me had been published yet, to which I didn’t know the answer. Just because I am the subject, it doesn’t mean I am kept in the loop. He didn’t have much to do for me, except my prescription, and took up the majority of my appointment. Then the pharmacists wanted to know about how my eye GvHD was treated, so I did some educating. Always teaching.

Pharmacy were going to take ages to fill my script, so we went into town to pick up two bits from Selfridges – Daddy’s Secret Santa for work and Jonathan’s birthday present. Back to the QE, picked up my drugs, home.

This afternoon, I did some crochet, and had a conversation with a chap from the venue of the event I’m organising so I could ask him the questions I’d talked to Daddy about. Once I was satisfied, I got the booking form back to him, so I should be able to announce it tomorrow!

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 16th of September. 

I have to keep reminding myself that today is not Saturday for some reason. It just hasn’t felt Saturday-like to me. 

It should have been obvious to me from the start, because I spent the morning in front of Saturday Kitchen. For a lot of it, I was consulting with Emma on her suspected skin GvHD, then writing up a blog post. Couldn’t remember if I had to do that or not until I checked. Brain wasn’t at home today. 

Then again, it kicked in as we watched Only Connect over lunch, because we got several points outside of our normal remit (missing vowels). Then this afternoon, I did a bit of podcast listening, made a couple of visits to the kittens, and finished off the scarf I started yesterday while catching up on Celebrity Masterchef. Finally, I am free of Lesley Garrett. Quite glad to be rid of the Reverend Kate too, because she was becoming rather infuriating. 

Last night, Hugo remained sat on my lap without being constantly fed treats. This is a major win. Henrietta, however, made me bleed again. 

The 17th of September. 

Right, today is Sunday. Definitely. Woke up mid-Sunday Brunch because it started early, and had just got downstairs when Mommy and Daddy were came back from taking Grandma to church. I had my breakfast, then went back upstairs to make myself presentable for going out, as we were going to Birmingham Independent Festival at Aston Hall. 

They waited for Grandma to call once she was done with coffee, then I was to be ready to go out upon their return. I petted the kittens (got some actual audible purrs from Hugo, yes!), put my boots on and off we went. 

We’d almost arrived, when Mommy realised she’d forgotten the tickets. Thankfully, she was able to forward me the email and we could just show the attachment to get in. Phew!

It was pretty much all outside, and the weather was nice, so we looked around at all the different food stalls, trying to decide what to eat. I played it safe and went for a margherita pizza which was a good choice because it had a really soft, doughy crust, just how I like. I found a place to sit and eat while I waited for my parents to join me, but first I was checked out by a wasp. It decided to fly really close to my face and land on my glasses, then come round and land on my ear, right on the tragus and I started to get genuinely worried that it might sting my face or crawl in my ear. My tactic is usually to stay really still, because if one flails about while in a wheelchair then people think you are having some kind of episode. It eventually flew off, and I was texting Christine about it when it came back and landed on my finger. Fuck’s sake. Thankfully, Daddy came along then and it went away for good. 

We ate our lunches, got some coffee from Faculty, then I got a beaver tail from Cake Doctor, which is dough, deep-fried and rolled in cinnamon sugar. So good. There were then craft stalls inside to look at, but they ended up not being really anything we wanted. In fact, there was more food, so I bought a chocolate custard doughnut for later. I am full of sugar. 

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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.