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The 23rd of April.

It has been a very boring day.

This morning, I wrote up a blog post, sewed up the seam of the first sleeve of my jumper, and got very bored of hearing about the new royal baby. So much baby news. Now he is born and home, one hopes it will die down once we know his name.

I had an ultrasound with Andrew at one, to check if there were any strictures or thromboses in the lower arm. After checking all the veins, and looking at the visible tissue, it seems my veins are fine, there isn’t any fluid anymore, and now there are just fat deposits in my arm for no reason! So I’m going to get back in touch with Anne Dancey to explore my options. I can’t leave it like this.

Then we had two hours to kill, so we bought some crap sandwiches from WH Smith and read our books. Much book-reading today. I finally went in to the x-ray suite at quarter past four, where Dr. Blaney was waiting. I lay face down, trying to breathe comfortably. My lower back was exposed, and I then had an x-ray probably every twenty seconds while Dr. Blaney did lots of injections. I think he was doing some local anaesthetic, then putting in a bigger needle and using that for the steroid. It took maybe five to ten minutes and was slightly uncomfortable, but not enough to put me off having them again. If they work, that is – it’s hard to tell at the moment. They might work immediately, it could take a few days, or they might not work at all. If they don’t, I don’t know what I will do.

The 24th of April.

Well, I think I might very tentatively say that my back may be slightly improved?

This morning it was quite tricky to tell, because I didn’t do anything to really test it out. I got up, had breakfast and coffee, and listened to The Riverdale Register while getting dressed for the gym. Mommy and I printed out all our tickets for Mach so they are sorted in folders for when they’re required, then I did the first two rows of the second sleeve of my jumper.

After lunch, I went to the gym for a short session. Partially because I didn’t want to overdo things, and partially because Mommy had to be at Grandma’s for twenty to four, so I needed to finish earlier than I usually do. Basically, I skipped all the stuff I do downstairs, so I just did the circuit of machines upstairs. I didn’t have the pain I was experiencing last time, but that was a very bad day. The pain is definitely not gone, but I think it might be a tiny bit better.

Tonight I am out at the mac seeing Tez and the seats there are not the most comfortable, so that might give me a better assessment.


The 9th of January.

Well it’s been a curious day. I had to get up at quarter past five to ensure I had time to drink a litre of water before 6am, from which I had to be nil by mouth.

We arrived at about quarter to seven, and had to wait outside the Short Stay Wellcome Unit until someone let us and the two nurses without working passes in. Then we sat in the waiting room and watched Good Morning Britain until someone came to take me to my bedspace.

I was in the corner of the room – it used to be the ICU when it was the main hospital, so the bedspaces are massive and it means I am not crammed next to loads of people. I have been here before but we can’t remember what on earth for.

Mr. Titley came to see me, and he ran through once again what was going to happen. Examination under anaesthetic, possibly biopsy, possibly smear, possibly photographs. In the end, none of those things happened, just the exam. I signed the consent form, and off he went. Then I met with the anaesthetist, Dr. Allan, who was very nice, as all anaesthetists are. We talked about why he didn’t want to knock me out – same as Dr. Thompson, in that I’d end up stuck in ICU and if they ever did wake me up, my lungs would be in worse shape than they were going in which we can’t have. He had to talk me through all the risks of epidurals and regional blocks etc, which I was happy to take, then he went away and I finished being admitted by the nurse.

Miss Byrom wasn’t expected to arrive until about ten, so I didn’t get changed until twenty to, and I’d not been ready long when a porter came to get me so my timing was impeccable. I started off in the little anaesthetic room, where the trainee anaesthetist got stuck up against a valve in my wrist, so Dr. Allan had to stick the cannula in halfway up my forearm. I needed it so they could give me a bit of antibiotics and fluid so there was a balance against the spinal injection when he did it. When it came to that time, I had to sit with my legs over the edge of the bed, and hunch over my pillow on my lap. I got sprayed with super cold cleaning spray all over my back, then there was a small amount of local which felt the same as always, and then he did the regional block injection which I didn’t feel at all. All I noticed was a spreading feeling of warmth from my bum downwards, which was sort of nice but also disarming. I could move my legs to get them back on the bed, then I had to wait for them to get heavy before we could do anything more. I didn’t expect the sensation to be so acute – despite my brain knowing that I have the muscle strength to move my legs, I physically could not lift them, not even using my arms. It is absolutely bizarre.

At that point, we could move through to theatre, where my legs were put in the stirrups, and nine strangers got to see my vagina. That was interesting, because I could see them being flopped about into different positions, but I had no feeling at all; it was like they were broken, like they belonged to someone else. Then my vagina got sprayed with the cold spray to test if I could feel anything, which I could not, so they were able to begin. As far as I could tell, Miss Byrom tore through the adhesions again, then there was just a lot of shoving – I was aware of pressure, but no pain. It is entirely scarred, so no biopsy would tell us anything, and Mr. Titley cannot do any surgery to help. It took them about 20 minutes of shoving and looking to decide this, then some packing and a catheter were put in, and they started discussing what might be done next. It sounds like I’m going to end up with some kind of custom made silicone dilator but we will have to see. Emails must be sent.

Once covered up, I was taken to recovery, where I got a hot blanket which was so beautifully toasty, and we waited for my theatre notes so I could come back to the ward. And here I have sat since twelve, waiting for the anaesthetic to wear off and the catheter to come out. I have had coffee and a panini, and can move my legs independently again, which is nice. It still feels like I am sitting on a cushion of jelly, five hours later, but the catheter is out and I’m hoping to be able to pee in the next half an hour so I can then go home.

For all the NHS crisis talk, you wouldn’t know it here. I have been taken care of wonderfully, they are showing no signs of stress and I haven’t got angry at anyone.

The 10th of January.

I was woken up by Mommy telling me she had to go to Grandma’s because she was being taken into hospital. The cough she seemed to be incubating has definitely matured into a nasty chest infection and as the day has gone on, she has had tests and been admitted to have IV steroids and antibiotics while being on 5 litres of oxygen. That’s more than I was using even when my lung collapsed so she is really quite unwell. Apparently the doctor was not exactly optimistic.

My day has been a pretty quiet one, as one would expect the day after surgery. I was supposed to be going to a clinic at St. Giles but I cancelled that – I’m not sure how productive it would have been, and we’ve agreed I’ll reschedule once I’ve had my fancy MRI.

I had a couple of other phone calls; one with Adam from Black Sheep about my hair colour, one with the eye department at the QE to sort out an appointment, one with Lucy from Anthony Nolan to discuss press for Still Standing, and one with a lady who is going to come and view the kittens on Friday.

Speaking of them, I watched some more of Big Little Lies with them asleep in my arms. I’m almost reluctant to allow their adoption!

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 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 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.