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

A bag of cells. That’s all it is. Just a bag of cells from a stranger. But eight years ago today, a bag of cells changed my entire life. I had Acute Myeloid Leukaemia M7 monosomy 7 for the second time and the prognosis was not good. I’d had one stem cell transplant from my sister, but she was too good of a match and just settled right in without a fight. You want a bit of a struggle, to get rid of any lurking leukaemia. For all the battles we had growing up, you’d think our DNA might clash, but we’re obviously more similar than we thought. Not a hint of graft versus host disease, and so the sneaky, silent killer oozed back into my bloodstream, making itself apparent by forming tumours in my face. 

“What are my chances?”

“Not good.”

No, I need numbers, Mark.”

“Maybe twenty percent?”

I gave up. I didn’t want to try. Go through it all again, but multiplied by 100. Harsher chemo, radiotherapy, and four out of five doors leading to the abyss. I couldn’t envision myself being lucky enough to pick the right one, so I surrendered.
I went to my school to tell the only other people who needed to know – my friends. For some reason, and I still have no idea why I chose to do this, but first, I knocked on the door of the headmistress’ office. I didn’t know if she was there, if she was busy, I just had to talk to her. I sat there on the sofa in my vest, grey hoodie and grey jeans with my number 1 crew cut, and told her that I just couldn’t do it. I am welling up as I write this; I have not put myself back in that moment for so long.
We did not get along while I was a pupil. Suspended twice, forever in trouble and would always try to find a way to talk myself out of it. That’s probably why she wouldn’t accept my resignation.

“Do you feel like the fight has gone?”

I nodded. I couldn’t form the word. 

“That is not the Kathryn I know.”

I knew that she was right. I am not the sort of person who gives up easily. I have since proved it, again and again. I give that woman an amount of credit equivalent to my doctors because she made me realise that I needed to try to live. Seventeen did not have to be the end for me. One in five survive. Why shouldn’t it be me?
I am still a realist. I told everyone that despite the best efforts of modern medicine, the most likely outcome was going to be my funeral.  There were floods of tears.

“What are you girls doing, all moping about on the floor?”

“Well, I’m probably going to die and we’re kind of upset about it, if you don’t mind.”

The Kathryn I couldn’t find was back. As heavy as the spectre of death weighed upon me, I told my doctors that I wanted to start chemo. We were going on a quest to find the donor, and save the girl.
The rigmarole began. Drugs, infections, temperatures. Nosebleeds, anaphylaxis, haemorrhoids. Radiotherapy, exhaustion, death. Only my own in my head, cured by a pint of Ben & Jerry’s, but on a cancer ward you can’t be around for too long without losing some souls for whom you’ve grown to care. You’re not allowed to forget.
Fast forward to transplant day. Locating a donor proved to be troublesome; a good match was found in Germany, but was unavailable when he was needed. I hope it was something vital that he couldn’t get out of, like getting married, not just watching the very important German football match that also happened to be occurring that day. Now there was a panic, I admit, and it seemed that a haploidentical transplant using my father as my donor might be our only hope.
But what light through yonder window breaks? Another German match, just a year older than me, and ready and willing to give his time and stem cells in order to give hope to a stranger.
They arrive in a container filled with liquid nitrogen, and the nurses in their rubber gloves and goggles lay them in a water bath to thaw before attaching them to my dripstand. The tubes are connected, the flow rate is programmed in, and it begins. Slowly they tick through, gingerly entering my bloodstream, searching for the empty bone marrow where they might make their home. I am hoping there is still an unwelcome squatter there for them to have to get rid of first. Just a casual altercation, nothing too dramatic, then I can get on with my life. Grade 1 Graft versus Host Disease would be ideal.
Be careful what you wish for. A minor fracas of a slight skin rash turned into an all-out war, and the collateral damage was my stomach. The entire lining of it was destroyed, leaving me without the enzymes to digest anything and an immediate future of tubes being forced up my nose and down my throat like they do to prisoners on hunger strike in Guantanamo Bay, alongside IV nutrition that would give me temporary diabetes. However, that would heal. It would take months to be able to eat and drink even the simplest of things without vomiting, and over a year to be free of assistance and rely purely on the food I could eat myself for sustenance.
For all that, the real casualty was my liver. More specifically, my bile ducts. They couldn’t cope and simply shrivelled up, leaving the bile with nowhere to drain out. It built up and up, eventually leaking out into every vessel it could find, turning my eyes and skin green with jaundice and poisoning me from within. Nothing I said really made sense, the toxicity diseasing my brain. I needed a new liver.


The beginning of advent marked the start of our wait for a liver donor. Unlike a stem cell transplant, there isn’t a register of people to search through, to find the one you need and just ask them to take part in an easy procedure that could cure someone’s disease.

With a liver, most of the time, somebody has to die, and with every calendar door that opened, it was looking more and more like that person was going to be me. 

I was not expected to see the Christmas of 2008. With four days to go, the 21st, we got the call. Doctors rushed in with forms, and nurses took more blood than they ever had before, with even them not knowing what they were all for. We were not fussed; we knew it wouldn’t necessarily go ahead, not until the surgeons had seen the organ and deemed it okay to use. This made it all the more surprising when I was suddenly being taken to surgery and falling into a propofol-induced sleep. The liver was good.
I woke up two days later in ITU, intubated, and with a baby next to me with an open chest. It was the middle of the night, but I was desperate to brush my teeth. I was given the tools, but warned not to swallow any water. My fluids were severely restricted: 10mls an hour. I sucked pink sponges on toothpicks. The miniscule plumbing that had been done on my ducts and vessels couldn’t afford to be stressed by large amounts of work to do when they were still so new and fragile. I asked the nurses to bring me a TV and I watched Jack Frost on video until my family came.
I was transferred to the liver ward, where we spent that Christmas. My friend brought me a bag of satsumas and clementines, which I segmented and practically inhaled the juice from each slice, spitting the flesh into a sick bowl. I just needed to taste something. Once normal amounts of fluids were permitted, it seemed the only thing I didn’t find completely arduous to drink was warm Ribena. I chewed on Calippos, biting them through the side of my mouth like I was Bugs Bunny. I couldn’t explain why, it was just what I needed.
It was hard. Probably the hardest thing I have ever done. I had no muscle mass from being in bed for so long; lifting my own head was impossible, let alone rolling over or sitting up. I had no independence. Even toileting required more assistance than any seventeen year old wants to ask for. I felt like a burden. Add to that the bedsores, the oedema in my lower legs which would not go away no matter how many pillows I put them up on, and the fact that I was still vomiting up chunks of dead tissue from my diseased stomach, I really lost any will to live I had had before. I was so depressed, I could not speak. I would not communicate with the doctors or nurses. I hated them, I hated my room, an unfinished zoo mural that the other children were too afraid of to sleep in, and I just wanted to go back to the haematology ward, where I knew it would be better. As soon as it became apparent my liver was doing fine, they let me go.
Behind all this, there were things going on inside my body that no one knew about, or understood when they did. Some stem cells that had come with the liver had decided they would go on a trip around their new home. They came across my bone marrow, and liked it enough to want to stay. Both the German and the liver donor couldn’t live together in harmony though, and one had to go. The liver donor was strong. She committed her troops to the conquest and by mid-January, there was no trace of the German DNA and I’d been colonised by this new girl. This was not supposed to happen. It has never happened before or since. Nobody has had an accidental, complete stem cell transplant from an organ and survived. If there is any stem cell migration, graft versus host disease usually occurs to a fatal degree, which I have seen only too close up.
Of course, I got some more graft versus host disease with the accidental transplant. This time in my lungs. It didn’t help with learning to walk again, getting breathless by the time I’d got to the end of my bed, but I got there. I started being able to digest very basic foodstuffs. It took six months for me to be discharged, and of course that was not the end.
My liver is not perfect. Malfunctioning sphincters in my bile ducts are causing bile to build up again. Now it makes biliary stones, which cause the sort of pain that makes me scream involuntarily and is only dulled by IV morphine, or it just festers, creating stagnant pools in which bugs thrive and grow into infections that nearly kill me, like the klebsiella I had in 2013. I had sepsis and the antibiotics were having a hard time beating it. We were told that this infection would come back, they might not be able to treat it next time, and then I would die. The only way to stop that from happening was another liver transplant, but my lung doctor had a secret spanner to put in the works. The damage done to my lungs by the graft versus host disease means that even if I had the operation, my lungs would not be able to support me off the ventilator. I would never come off life support. They could not fix me. Next time it comes back might be the last time.
That is my life since my second transplant. It is difficult. I use a wheelchair outside of the house unless walking is going to be minimal. I am infertile and permanently single because nobody swipes right for this amount of work at my age. Something frightening is going on in my back that requires me to see a spinal neurosurgeon. I had an eating disorder that took me to a dangerous weight and nearly sabotaged everything I worked so hard for. I am unemployable. I have depression that I have medication for but still sometimes the heavy cloud descends and nothing I can do will shift it until the breeze moves it along. Sometimes it is days, sometimes it is months. Sometimes I wonder what I did it for, when I feel like I have no purpose.
But I do. To make the best of my life is my purpose. I was given this opportunity, miraculously, and I have to seize it. And I have. I have seen Paris in the rain, and sunset over Lyme Bay. I walked the red carpet of a Hunger Games premiere and got to see the Royal Courts of Justice dressed up like we were in the Capitol. I have friends all over the world. I make stuffed creatures that bring people joy. I have been drawn by my favourite illustrator. I have seen my friends’ children born and I’m watching them grow into tiny people. I have celebrated birthdays nobody thought I would see. I think I have made a difference to people’s lives. Maybe I’ve even saved one or two, indirectly. And now I have another purpose. I work with Anthony Nolan, being a Young Ambassador for them, and it means I get to tell everybody has what happened to me and show them that what we do is worthy. It is crucial. I am living proof that second transplants work and are not just a waste of funds (like some other things I could mention). In fact, they’re essentially cost-neutral, compared to the life-prolonging chemo and palliative care required for those sent into no man’s land. Those deemed not worth trying to save.
I am an anomaly. Unique. Whatever you want to call it. Had we not found a liver in time, had I not survived the accidental DNA change (which by all understanding I shouldn’t have) then I would be another statistic to be used to show the second transplants aren’t a good use of money. If the current rules were in place eight years ago, when (may I remind you) we were in far worse economic times, I would have been sent home to die at seventeen lest my doctors were able to argue that I was exceptional. I am, but they didn’t know that then.

Nobody knows what’s going to happen. 

The statistics that would really show the success of second transplants in the UK don’t exist because so few are done and refusing to do more is a) nonsensical and b) a huge slap in the face for all the people working tirelessly to save people like me. Who knows what we transplant patients might go on to do? Twenty percent is not terrible odds. We treat diseases with much lower chances of survival, yet this group of 20-30 people per year have been judged unworthy. Everyone deserves a chance, or at least the choice to take it. It should not be routine that anyone unlucky enough to relapse within a year is written off. It is inhumane. And my argument is that most cancer patients tend to embrace life afterwards. We give back. We make the world a better place. And retracting even the hope of survival from us and our families is simply barbaric. I accept that now I cannot be saved. There will be a point at which the bugs get me. But I am not being denied a treatment that works because a panel of people decided that I don’t matter. And I will spend the rest of my life, however long it may be, fighting tooth and nail to get this decision reversed, and when it is, working with Anthony Nolan to save as many people as possible, informing people about becoming a stem cell donor and making the most of the marvel that is being alive. Do the right thing, Jeremy. We don’t deserve to die.

Eight years later. I am alive, and I am happy.

The 28th & 29th; Hanging on by the skin of my teeth.

The 28th of August. 

No vomit sounds this morning and that’s the way I like it. I had a slow start, bimbling about in my pyjamas, and had just gone upstairs to get dressed when Becky texted to see if it was alright to come round. I asked for fifteen minutes, then put some clothes on sharpish. Ready with moments to spare!

She’d brought us a lovely cake stand to say thanks for looking after their kittens, and we caught up on life. I haven’t seen her for ages because she was poorly before they went away, so there was much to discuss. My pain and painkillers, their bathroom (it’s nearly finished and soon they will be able to shower at home!), Nadia’s reluctance to leave, and their holiday which was slightly marred by the noisy neighbours. 

This afternoon, Rachel (the lady I spoke to yesterday about Nola) came with her mother and daughters to see the kittens. I think had they not already decide on Nola, they would’ve gone for Nova because she was showing off. Nola was a bit shy at first, but she soon came out of her shell and let them stroke and play with her. They actually wanted to take her today, but that’s not allowed so they’re coming back for her on Friday. 

Rest of the day has been taken up by crocheting. I have finished the sheep and now I’m working on the cat. I’ve done the head and ears already, so I don’t think it’ll take long. 

The 29th of August. 

Bank holidays mean nothing to me; they are no different to most days of my life apart from sometimes there is a good film on. Tonight, Thor: The Dark World is on and it doesn’t seem two minutes since I saw it in the cinema. I remember looking at Asgard and thinking that if there was a heaven, I would like it to be like that. Or Rivendell. It hadn’t been long since the doctors had said I couldn’t have another transplant and I’d probably die soon, so you can understand why it was on my mind. Yet here I am, nearly three years later, hanging on by the skin of my teeth. 

The most exciting thing to happen today was that a man from down the road came to borrow some sand because Daddy had offered him some for his drive. When I answered the door he said something about my husband and I very quickly said “Oh you’re the sand man, I’ll just go and ask my DAD where it is!” because seriously what the fuck was he thinking? Shut that shit down. 

I just finished crocheting all the parts of the cat; now it just needs assembling. 

The 26th & 27th; Mainly crocheting.

The 26th of August. 

Today did not begin brilliantly but has greatly improved. I woke up super early for no discernible reason, so I put on the Today programme which usually sends me back to sleep, but then more NHS cuts was the main story and it just made me so mad that then I was awake. 

I watched Zoo on Netflix until it was a socially acceptable time to get up, then I spent my morning writing a blog post and avoiding the news. I cannot listen to it because it just enrages me so. 

Sadie is home for the bank holiday, so I met up with her at Yorks for the afternoon. We had a great time discussing her housemate’s very-swiftly-moving relationship, the saga of getting Nadia in the cat carrier, Bake Off and The Chronicles of Nadiya. She is like a Nadiya in her family, as since she has been backpacking on her own, now some of the other women in her family have been able to go travelling (but only to places she’s been). She loved the Cookie Jar Cat and can’t show her dad because he’ll be jealous and annoyed that it’s not for him. When he specifies what he wants, I’ll make him something!

Mommy picked me up, and on the way home we stopped at Tesco so she could get some orange jelly because she’s making Jaffa Cakes, and I bought ice cream because reasons. 

The 27th of August. 

Woke up today to the sound of Daddy throwing up a lot. That went on pretty much all morning, until Mommy went to see the pharmacist who gave her some travel sickness tablets which seem to have worked. He has this thing called Ménière’s disease which is a disorder of the inner ear. Usually he just feels a bit off-balance and it affects his hearing – he’s felt a bit sick before but never had the kind of severe vertigo and vomiting he was having this morning. He’s downstairs now, has had some toast and is now going to have an egg because he’s wild. Good thing we had no cinema trip planned!

I have had a quiet day of mainly crocheting; I’m making a sheep for one of the daughters of Philippa, who is the Youth Worker for the liver team. Then I’m doing a cat for her other daughter. I’m also supposed to make Oo Oo the monkey from Raa Raa the noisy lion for the son of James, my liver consultant, but there are literally zero crochet patterns for that on the internet so I don’t know what I’m going to do instead. 

I also had a phone call from Sheila about a potential adopter for Nola. I’ve rung her and she’s coming round tomorrow!

The 24th & 25th; I really didn’t want to move.

The 24th of August. 

No poo-watch today. Instead, it’s Bake Off day! I am ridiculously excited. Love Bake Off so much. What insane things does Mary Berry have in store for us this year? I already have my favourites: Andrew, Rav, Selasi and Benjamina. Watch them. 

Not so much crocheting today either. This morning I had a phone call with Ben from Anthony Nolan about the event I’m going to at the BMA in September; he wants me to speak a little bit so we were mainly just talking about what I might say and what is going to happen. Mainly networking. 

After lunch and the new episode of Pretty Little Liars, I had a trip to the dentist and hygienist. Liam (the dentist) and I had a lovely chat about flossing, then the hygienist poked all my gums and gave me a score of zero which is the best! Still can’t cope very well with the abrasive floss/polishing strips though. Bleah. 

Since getting home, I have only had time to crochet the neckline of my jumper and a sleeve. Just the other sleeve to go and it’ll be finished! Having tried it on a couple of times, it’s definitely going to keep me warm. 

The 25th of August. 

I woke up from the most horrific dream in which I had squished an enormous spider (its body was the size of a two pound coin) with my hands and it screamed, and when I awoke I was in the position I’d been in in the dream and I really didn’t want to move. 

This morning I was at the chiro. I told Trine about the MRI and asked if she might be able to pull a string or two with Mr. Harland, then she crunched my upper back and my neck a lot. When I came out, the most ghastly duet was playing on Radio 2. I got dressed so fast. I have never heard it before and I never want to hear it again. 

After lunch, I crocheted the other sleeve of the jumper, and now it is finished! It doesn’t look great in a photo because it’s oversized and slouchy. When it’s cold enough, I’ll wear it and it’ll look better. 

Not long after I’d finished, Nadia’s adopters came round to take her home. They’re back from holiday so couldn’t wait to have her. We got all the paperwork done pretty quickly, then it just took us about forty five minutes to get her into the carrier. In the end, there was some tricking and we had to grab her a little bit. The other two were only too happy to get inside but she was not getting involved. I was so of of breath. Still, we got her there in the end and it was a very short trip to her new home. I am sure she’ll be fine. The other two don’t appear to have noticed. 

The 22nd & 23rd; Such a life of glamour I lead.

The 22nd of August. 

It feels weird not having any sport on tv now the Olympics are over. I watched the closing ceremony this morning and Tokyo looks like it’ll be great fun. I do hope I’m still alive in 2020 to see it. I realise that’s not a normal thing to think but it’s something that concerns me. 

Another thing that concerns me is the Paralympics still to come in Rio. They’ve got no money, are dismantling stadia and cutting things like transport which disabled athletes obviously actually need more of. There were hundreds of empty seats already – I can only see it being much worse for the paras. 

I have finished crocheting the front (or back) of the jumper and am about halfway through the other side. I am so very productive. 

The 23rd of August. 

Well it’s been another very productive day – crocheting interspersed with going to see if Nova had been sick or done a poo. Last night she was sick twice after I gave them new food and didn’t seem able to do a poo, no matter how many times she tried (I know you come here for this kind of information). So today I had to keep going in and somebody has used the litter tray but it’s a mystery as to who. Will have to watch them tonight and see what happens. Such a life of glamour I lead. 

Mommy took Grandma to see Prof. Clarke (her Parkinsons consultant) who asked how I was, and when Mommy explained about my back and mentioned Mr. Harland, he got quite excited and said he is “the best” and he’d want him to operate on his spine of that were necessary. Everyone is so positive about this chap! Now if I can just see him asap. His popularity makes me suspect his list is quite long though. Sigh. 

When not checking for kitten poo, I have been crocheting and watching the two Big Fat Quizzes that have been recently broadcast. Finished the front and back and stitched them together, so now I just have to do the sleeves and then all the final tidying bits. I shall have myself a jumper!

The 20th & 21st; All the waves moving through my body.

The 20th of August. 

It has been a really good day. 

I got up at a normal time, and the pain I had while making my breakfast was mitigated by the fact that I knew I was having my MRI this afternoon and soon we will know things. I had an email from Sheila to say that the lady I was going to ring had phoned her this morning to say she definitely wants the cat she saw last night, so she wasn’t going to come and look at Nova. Fine with me!

Went out at half eleven to meet Rachel for lunch at Yorks at twelve. It was the one on Stephenson Street which I hadn’t been to until today, so it was nice to see it in person. She was already there when I arrived, and brought me some water which was secretly infused with cucumber and the taste was very confusing. We had coffee, then I ordered eggs benedict for my lunch which was really good, and I only stopped when I choked on a tiny piece of egg which tried to go down the wrong hole. It was my own fault; I tried to talk before I swallowed. I gave her the flowerpot kitty, which might upset their budgies but hopefully they don’t attack it. We just had a really nice catch up, talked about her PhD, my kittens, fun dogs, and watching people outside in the ever-changing weather. 

Mommy came to pick me up about twenty past three to take me for my scan, asking everything moved very quickly! No time to even get my book out, let alone read any. I got changed into a gown and went into the room having answered all the questions, I lay down, and they put a support under my knees and gave me some earplugs. They put the alarm button in my hands incase I had a panic (I never do), and they put some blocks either side of my head and a cage (it’s not a cage but I can’t think of the right word) around my chest to keep me still, then put a blanket over me because I was a bit cold. 

Then I just lay there, eyes closed and cursed silently when my leg would spasm. Listening to all the different noises, imagining all the waves moving through my body. I was in there much longer than I expected, and I was really hot when it was over. So glad to get that blanket off. I was pulled out by two new people who’d taken over, and I put in a plea for the report to be done asap. We can but hope!

The 21st of August. 

Normal service has resumed; back to doing very little. I was able to have almost a normal amount of orange juice this morning, so that consistent treatment of the ulcer on my tongue must be working. Right after we’ve got a load of Difflam. Still, it lasts a long time so I doubt it’ll be wasted. 

Sunday Brunch all morning, which today involved retriever puppies and Miles Jupp whose cackle I just adore. Grandma arrived towards the end having been picked up from church. Daddy fixed my wheelchair because it has been misbehaving a little, but suddenly came over all weird and spent a lot of the rest of the day in bed. It happened on Friday evening too and we can’t really work out a trigger. It’s very mysterious. 

We had pheasant for lunch, then I have spent the majority of my afternoon crocheting the jumper. Twenty two rows of fifty stitches takes a good few hours, and now I’ve got to the end of the end of what I’ve deemed the first section. When I’d got to the end of row 32, I started Slade House by David Mitchell, and have got through the first two chapters. I don’t think it’ll take me long to finish. 

Just had Taid in the phone and his helper woman has just quit without warning and actually without word at all – he’s had to ring her son who has spoken to her and she’s just ignoring the situation completely. She has, in effect, ghosted on him and I’m so, so appalled. I’d like to call her up and ask her who the hell she thinks she is. 

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 16th & 17th; Nine years since I was diagnosed with leukaemia.

The 16th of August.

Today is nine years since I was diagnosed with leukaemia. I still remember it like it was yesterday. Mommy, Daddy and I were taken from my bed space on Ward 9 to the nurses’ staff room, the only private place, to sit down with my doctor, Mark Velangi. He told us that from the tests they’d done that morning (a bone marrow trephine and lumbar puncture), they had found leukaemia cells in my bone marrow. I looked at the wall and started to cry. 

Today has been very different. We didn’t get off to a great start, finding just before we went out that my chair was still in Daddy’s car. Then, when we went to collect it from him, he was late in appearing, which made Mommy late for her blood donating appointment. They wouldn’t let her donate in that session, so she was going to have to go back at 12.30. To kill time, we had coffee at Joe and the Juice, then browsed in Foyles until she had to leave. I bought three books that were on offer: The Invention of Numbers by Peter J. Bentley, Cat’s Cradle by Kurt Vonnegut, and The Man in the High Castle by Philip K. Dick. Then I had a bimble round John Lewis where I looked at wool which I liked but had no use for, then got two cute cat pins that were reduced and a Levi’s shirt that was on sale too! By that time, I thought Mommy would soon be finished, so I went to find a table in Crêpe Affaire, where we were going to have lunch. It didn’t take her long to arrive, and soon we were having tasty pancakes. I had a crêpe florentine, she a superveg and they were really good. On the way to the car, I bought a Nutella doughnut from Krispy Kreme to eat at home. 

That too was incredibly delicious, not too much filling which I like or I find them a bit sickly. And apart from eating that, all I have done is crochet because that is what I do. 

The 17th of August. 

I have stopped reading my book at a critical moment to write this. Like, a child is about to get shot. Or not. Hopefully not. I’ll find out soon, but it’s 6 o’clock and therefore writing time. 

It’s because of clinic this morning that I’m so far into the book now – just over halfway through. We sat around in the exceptionally busy waiting room for two hours before Ram called me in. I wasn’t in with him long, just updated him on all the pain relief I’ve had and he suggested that we just wait for me to see Mr. Harland before doing anything else. I wonder if I ask the chiro, whether they can get him to chivvy me up the list a little? Although the MRI will have to be reported on first. Anyway, then he prescribed all my drugs for the next three months, and we went to sit in pharmacy and wait for those. 

On the way home, we went to get some toothpaste and hamster food (from different shops), and I saw a small girl carrying a pug puppy in her arms and it was so hard to not rush over and wrestle it from her. So. Cute. 

I have spent the rest of my afternoon crocheting and reading. There is not a great deal on the Olympics tonight that we want to watch so I will probably get through a lot more pages then. 


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