The 2nd & 3rd; What he did should have worked.

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

The 25th & 26th; Venogram day!

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.

The 23rd & 24th; The coldest person in the world.

The 23rd of January. 

Much better sleep last night. Think it was helped by having my dressing gown available as another layer. I’m now sleeping in a jumper and pyjama bottoms tucked into thermal socks, under the winter duvet, a blanket and a thick dressing gown. I am the coldest person in the world. 

This morning I did the big birthday blog post, and fitted in two Cats Protection calls before lunch. I also printed off some stuff I want to look over before my Anthony Nolan thing on Thursday, all about the decision to withdraw the funding.

After lunch, I went upstairs and spent a very productive hour putting together the wooden Little My and sorting out my sock drawer. I have too many that I simply do not wear and had forgotten I have, so they’re all going. Yet my drawer doesn’t seem any less full. 

Becky came round with some more birthday flowers for me – she is better than was described, although she was still careful not to touch or breathe on me, which I was grateful for. 

I think another early night tonight – Women’s Hospital in the morning. 

The 24th of January. 

Bleah, early start. Not as early as tomorrow though – we will be leaving the house at 7, so today will seem like a lie-in. Still, I’ll be having some fun drugs that may induce a nap. 

I began at the Women’s Hospital at 10, seeing Dr. Robinson in the menopause clinic. Having read my book for half an hour, I was called in by Elaine, her clinical nurse specialist, and saw her instead. There was nothing I really needed to see Dr. Robinson about specifically so I just gave her an update on my general condition, we talked about my vaginal surgery, and I’ll just carry on with my current management until I see her again in a year. 

Had to make a quick visit to haematology clinic to have my clotting checked for tomorrow, and Dr. Ferguson had asked that I get a tacrolimus level done so I had them look at that too. 

I had to be at the dental hospital for half one, so there was no point going home to come back. Instead, we went into town where I got Mommy and Daddy’s anniversary card and some thank you cards, then we went to Pret for lunch. I got a cheese, ham and mustard toastie which was WAY TOO MUSTARDY so I had my coffee and cookie instead. Stupid pathetic mouth. 

Mrs. Richards wasn’t in today, but I saw two of her team and they were both happy with my mouth is, so no injections today. 

The 11th & 12th; I got to feel normal for twenty minutes.

The 11th of January. 

Both interviews went really well, and the 9pm one went out on Radio WM about half eleven – I’m on about 1hr25. I tweeted Anthony Nolan with the link and they’re really happy with it which is good, and I’ve even had some people say they’ve signed up to become donors because of me. I love that so much. 

This morning I did a blog post, then called a potential adopter who I’m pretty sure we have kittens for. That was easy enough, then I spent my afternoon crocheting and watching two more episodes of The OA. I thought they were the last two, but there’s actually two more! Still, that’s a good thing because I had concerns as to how they were going to wrap things up. 

We went out about twenty past five for me to get to an Old Hallfieldians meeting at six. Unfortunately, we didn’t have a quorum, so couldn’t have the meeting. I couldn’t get hold of either parent to come and get me, so Celia gave me a lift to Five Ways where I got a train to Wylde Green. The first time I’ve stood on a platform on my own in nearly ten years, and I still find the spot where the doors stop. Such skills. 

I got to feel normal for twenty minutes. No one on that train could tell that I’m a mess. 

The 12th of January. 

I will warn you, this is not going to be a very exciting post. I have spent literally all day crocheting. I suddenly remembered last night that I’d said I’d crochet some animals for James’ (Dr. Ferguson) sons, and I have liver clinic on Monday. I hadn’t got started, so today has been industrious. 

He had suggested Oo-Oo the monkey of Raa-Raa the noisy lion for the older one, but unfortunately, good patterns for them just don’t exist. So I found a pattern for another monkey which I hope he will like, and in going to make a bear for the younger one. A bit generic but hopefully a safe bet. 

So yes, as soon as I had dressed and breakfasted, I got to work. I’ve made the head, a patch to go on it, the ears, the body, the arms and a leg. Not bad for just the one day. I stopped to eat lunch, and to do two Cats Protection calls I had scheduled for this afternoon. One went well, the other not so great. Bah. 

Tonight I plan on finishing at least all the parts of the monkey, and get him assembled if I have time. 

Oh, and we’ve had no snow. 

The 13th & 14th; I have had just the most perfect day.

The 13th of September. 

I have had just the most perfect day. So happy. I got up and had time to write up a post before we had to leave for the station, where I got a flat white from Starbucks that did not taste like garbage, and got settled on the train. My plug sockets weren’t working which was not ideal, but a nice man at the next table down let me use his spare one to charge my phone. 

The man with the ramp was very prompt for once, so I swiftly alighted and got a taxi to Kaffeine where I was meeting Suzi. The cabbie was very chirpy, whistling a happy tune as we made our way through the traffic and I was only a tiny bit late. We sat outside because it was a) gorgeous weather and b) much easier than wrestling the wheelchair inside, and we basked in the sunshine. I had a really excellent dark chocolate brownie and flat white by the way, I would recommend. I elaborated on what the event tonight was, and told her about the situation with my back, and she caught me up on how Edinburgh had gone, and explained what she’s working on at the moment which all sounds very promising and I’m excited for her. While we were sitting, a man walked past us into the shop, and I said “That guy looks like Dexter” (as in, Michael C. Hall from Dexter) and she said “That is Dexter!” so that was my London celeb-spot for the day. No idea why he’s here but whatever. I was later reminded that he had a stem cell transplant a while ago and I should’ve got him to come tonight. I am not quick-thinking enough. She had to leave at quarter past one, but was going in the same direction as me, so we headed towards Selfridges until she had to split off to go to her meeting. It was so nice to catch up; she is such a babe. 

In Selfridges I bought some rainbow bagels and a cinnabon, which I ate in the Starbucks on level 4 while listening to an hour long podcast to kill some time. I had a browse of the book section, where I had to disappoint a girl who wanted to know where I got my hair done. Sorry, you have to travel to Birmingham for this. 

I gave myself plenty of time to get to Zizzi where I was meeting Lauren for dinner, and had a few stops on the way. I went past Workshop Coffee where I bought some Square Mile Sweet Shop beans, and then made a stop in Konditor and Cook for two brownies – I was very restrained. That was just round the corner from the restaurant, and I was only about ten minutes early, so they let me sit down and peruse the menu while I waited. When she arrived, we pretty much ordered straightaway, and our pizzas arrived very quickly. I was still quite full from all the cake, so I only managed about a third of mine, but it was fine, I took the rest away in a box. We got to talk about her joy at finishing her MA and being able to read books for fun, and how her nan is having a great holiday in Ireland with all her friends. 

We paid, then had to find our way to the BMA. First we went the wrong way, but Google Maps put us back on the right track. We met up with Amy outside her office building which is basically next door, and we had a tiny group hang before Lauren went to meet her other friend and Amy and I went into the BMA. We picked up our passes and followed the signs that said Anthony Nolan. I had to get in a teeny tiny lift to get down to the room we were using, although we then very quickly left it to go into the attached garden. Ben was out there with a large folder of papers, and he said hi before going to greet guests. Amy and I sat at a table in a slightly shaded area, and various people gravitated towards us for chats. Some Anthony Nolan people I knew like Richard and Henny, some I didn’t, Charlie Craddock, and we had a delightful time discussing podcasts with a guy called Owen who’s a donor and his friend. They’re doing the Birmingham half-marathon in October but not to raise any money, they’re saving that for the full marathon that comes next. I also briefly got to meet Alice Byron’s dad, and we talked jaundice and liver drugs, then before we could talk more we were being ushered inside for speeches. First Henny, then Charlie, then me. It was fine, much better when I had it written out, and much less crying this time. Lots of people came to speak to me afterwards, including Nadia Martini, Yaser’s sister, so it was super nice to meet her, and I spoke to other people who’d had transplants or had family members who had. Everyone told me how inspiring I was, and Ben presented me with some beautiful flowers. At nine, it finished, so I said all my goodbyes, and Amy and I headed back to Euston where I gave a homeless man my box of pizza. She sat with me until her train came, then mine was delayed by fifteen minutes, so by the time we pulled into New Street, I was more than ready to be home. Toast, then bed. 

The 14th of September. 

Didn’t get as much sleep as I would have liked because I had an appointment to get my hair cut at quarter past ten. While I was in Starbucks yesterday I just had the overwhelming urge to chop it all off again and lo, it is done. Wonderful Michaela. She’s undercut the sides and it’s longer on top so I look a bit shaggy in a good way. So glad it’s done. 

When I got home, I had lunch which included the fudgepacker brownie I bought at Konditor and Cook, then I sat for about an hour, writing about yesterday. So much to say!

One of the effects of me sitting down all day was that my feet had puffed up with fluid. My back is actually not terrible, I think because I got out of my chair as much as possible, but there has to be some sort of punishment for going out. To try and combat it, I went up to my bedroom where I lay on my back with my legs up against the wall, trying to drain the fluid out of my feet while I watched the first episode of American Horror Story. We’ll see how that goes – if it gets too scary, I’ll find something else. 

Back out this evening for an Old Hallfieldians reunion. The traffic was ghastly, so I was half an hour late, but when I arrived, Celia was the only one there. After some sleuthing, we determined that the MailChimp email didn’t go out. Thankfully, other people did start to arrive, but most excitingly, my friend Steph came! I have known her since we were five but haven’t seen her since we were sixteen as she went to Rugby for sixth form, then university in Nottingham and New York, and has been travelling since then. 

She’s an artist now, and has been artist in residence at The Met in New York and The Museum of Tomorrow in Brazil, so she’s just a bit great. She’s back in England for a month, so she and her mum came to the pub and we had dinner while chatting about life now and back then. Things like the controversy of the elocution competition, the school play of Sleeping Jack Whittington and the Seven Bears, and the time we did an assembly in which I had to wear Steph’s mum’s fox fur coat. No idea what I was meant to be, but it was huge and really soft. Such random things I remember. 

We left just after nine, and I gave her the biggest hug I could muster. Not leaving it ten years until next time!

The 7th & 8th; Soon we’ll have some answers.

The 7th of September. 

Things are not so bad today. I was concerned this morning when I was still in pain every time I took a step, but this evening it is not so terrible. I have hope that tomorrow might be tolerable. 

Not much action to report. Mommy was out with Grandma most of the morning, taking her to Good Hope to have her eye measured for her second cataract operation. I wrote up a blog post and did some crocheting – I’m making a scarf with some of the nice wool I got last Christmas. I also occasionally poked my head in on Rufus who was being very chatty. It’s been a long time since we had a cat who miaowed this much. 

This afternoon, I’ve been planning what I’m going to say on Tuesday at the Anthony Nolan event I’m speaking at. I have to condense my diagnosis, treatment, transplants, life afterwards, Anthony Nolan’s part in the transplant and how I want the future to look into five minutes. I think I’ve got it down, I just need to see how long it takes when I say it out loud. 

We’ve let Rufus out of the cage. It has not made him any less talkative and he keeps scratching the armchair instead of the post but I’ve been allowed to stroke him so we’re making progress. 

The 8th of September. 

Going to Trine about my back was certainly the right call – I’ve got an appointment with Mr. Harland next Thursday. Hooray!

It’s okay today; bad when I expect it to be, but I can get out of a chair and walk around without wincing. That probably won’t be the case when I have my appointment because I’ll have been in my wheelchair pretty much all day Tuesday and it will hurt. I was in a chair most of this morning, but it was at Black Sheep so I was comfortable. I was getting my colour touched up and was there from 10.45 until 2. It’s amazing how time flies in there. I read a decent chunk of The Bone Clocks and caught up with Apple’s announcement from last night. 

When I got home, there was a message from the place Trine had referred me to, so I called them back and sorted out my appointment. Then they rang me back because they needed my NHS number so they can get my MRI results, so I had to run up the stairs to get a letter with it on, then I had to try to tell it to the chap while also getting my breath back. Not easy. I am so happy to know that soon we’ll have some answers. Then I ate my lunch and went to see Mr. Chatty Rufus. I made him purr! I tricked him by stroking behind his ears and he liked that. Didn’t want to be picked up though and I’ve got the plaster on my hand to prove it. Baby steps. 

The 18th & 19th; I have done things!

The 18th of August. 

I finished the book last night, and I’ve just started Black Eyed Susans by Julia Heaberlin. I didn’t know the main character’s last name was Cartwright. Always a tiny bit weird when that happens. I also finished the blanket this morning! I was going to shower first thing, but the boiler man was coming to clean it (the boiler, not the shower) or something so I thought I’d wait until he’d been. To pass the time, I wrote a post, then got on with the end of the blanket. By the time he left, I was so close to the end, I figured I might as well finish, and I’d get in the shower after lunch. 

This afternoon, we baked some chocolate chip and sea salt cookies and a marmalade traybake because we had no cake left in the house and that just won’t do. While they cooked, I worked on a jumper I’ve started, and have just begun my new book. 

That’s all! Tomorrow will be longer; actual things are going to happen. 

The 19th of August. 

I have done things! Too many things, some might say. More about that later. 

Had an early start because Daddy was taking me to Worcester for an Anthony Nolan thing. I had to go to the head offices of one of our corporate partners, Parkwood Leisure, to officially receive a cheque and have some photos taken, say some words. They had a big cricket match, followed by a quiz and an auction which raised £2450, and they’re nearly halfway to their target of £25,000 which is great. I was presented with the cheque, we posed for the photos in which I may have had lipstick on my teeth, then I said a thank you and talked a little bit about where the money goes, and that was it!

This afternoon was fairly quiet, then Christine came home and got to meet the kittens. They were all very sedate and allowed her to pet them; well, Nova and Nola did, Nadia wasn’t having any of it. They are not sedate now. They are mental. 

Tonight, we went out for dinner at Cau. We’d said we’d go back there with Christine so to do it now to celebrate my diagnosis anniversary seemed the perfect opportunity. Started just with bread which I covered in spicy butter to my regret, then I had tapa de cuadril, which is very thinly sliced, flash grilled steak and it was really good – I would recommend. In-between courses, I had a phone call to talk about a potential adopter for one of the cats who wanted to view them this evening. When I told her I couldn’t because I was out for dinner with my family, she said “You know Kathryn, you do live quite a life for someone who…” and then quickly changed the subject. 

Who what? Is disabled? How dare I go outside and eat food with other people? Why am I not sitting at home all the time being ill? Man, if she only knew some of the other things I do, it would blow her fucking mind. 

ANYWAY. Then I had some churros for pudding and they were excellent so I am happy. 

The 2nd & 3rd; Being constantly poked in the back with a cattle prod.

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 29th & 30th; I’m not going to shut up about this until it changes.

Eight years that I would not have had if the current rules had been in place. Patients will be denied the chance to have the same based purely on some bad luck, and that is fucked up.

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It’s my 8th Marrowversary today. Now patients who deserve to live won’t even get one. Fix it, Jeremy.

Do the right thing Jeremy. We don’t deserve to die.

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