Archives For cancer

The 3rd of May.

I have been putting this off because writing it down makes it real.

It’s been a pretty quiet, mildly shitty day. I still have this stupid dry cough which wakes me up throughout the night, although my throat is less scratchy now, which I suppose is a plus.

We went into Birmingham this morning so I could pick up my copy of the new Jeffery Deaver novel, The Burial Hour. I also needed to get a thank you card to give James tomorrow when we have our last ever appointment, and Mommy wanted a blank card to put a cross-stitch in but couldn’t find one.

This afternoon, I phoned Andrew’s secretary, Emelda, again, but he hadn’t got back to her and there were no spaces in his clinics until the beginning or end of June. At this point I got upset and I tried to explain about the wedding. I didn’t do it on purpose, but she then said she’d keep trying for me and I’d hear back as soon as she spoke to him.

Mommy then went to Grandma’s, and I watched the new Pretty Little Liars and started the book. Mid-programme, Emelda called me back, and I’ve got an appointment for 25th May, so I will “go to the ball”, as she put it. I didn’t tell her that really I need to see him much sooner because she’s obviously pulled strings to get me in there, but I’m going to have to attend the wedding in my wheelchair, on oxygen and with a giant, swollen arm. I am so tired of this. My hateful body.

The 4th of May.

Nothing like bad news from a friend to prompt a reality check. Dean had his operation on Wednesday to remove the tumour on his rib. That part went as predicted, but what the had not expected was to find new tumours elsewhere that weren’t visible on his scan four weeks ago. Obviously this has been a shock to everyone, so they don’t know what the plan will be. I am just devastated for him, for Adam, and his family. I know how it feels to relapse but he hasn’t even been in remission yet. He knows I am here, for whatever he needs, This is the worst of days.

Up until hearing this news, I was having a pretty good day. I don’t think I have coughed so much today, but I won’t get my hopes up about improvement just yet. I had an appointment at Black Sheep to see James to re-tone my hair, my last session with him! I gave him his crocheted monkey and a card with a rainbow sheep on – I thought it was the most appropriate. I was not there for so long today, he was just going over the colour again, so now I’m a bit more vibrant. It has been our best work.

Home briefly, then back out, to the QE for my physio assessment. They were very on time, so I had barely started reading my book before I was called through. I filled in a questionnaire about my pain, then a chap came to see me. We talked a little bit about medical stuff and my current limitations re: oxygen, then he wanted to see what I could do. He had me stand up and bend forwards and backwards, then sit on the bed and twist left and right. Apparently I am quite stiff when going backwards and left. I then had to lie back and do some stuff with my pelvis and legs. Basically, he can give me some exercises/stretches to try out for a few weeks, then I’ll go back and we’ll see what progress has been made. He was very impressed with my enthusiasm and determination, which made me laugh because I used to be so terrible with physios, always pretending to be asleep when they came. I learned the hard way that that is not helpful.

The 3rd of October. 

Ugh. There has been a cloud over today as I found out last night that a woman I had become friends with over Twitter who had recently had a transplant, Amber Fox, has died. I knew she had pneumonia, but I really thought she’d pull through. It’s a feeling of disappointment I know far too well, but it never gets any easier. 

So this morning I just ambled around, feeling generally shit about the world and this fucking disease that just never seems to be diminished by the fight back. I wrote up the very long blog post about Christine’s birthday weekend, and made myself a cheese toastie for lunch. 

After lunch, I pretty much sat and worked on the crocheted present constantly. Nearly done. It will be very cute. Although I had to redo one part because I wasn’t paying attention and didn’t read the instructions properly. 

The lady from the new family next door came round with baby George to give us their phone numbers in case we ever see a burglar or something, and we gave them the keys Joan had given us. George is cute but he was grumbly because he is a bit poorly so I did not squidge him today. 

Shaki phoned to ask if I could take a kitten for a few days, so she’s bringing this five week old one round at some point this evening. It’s going to be so small!

The 4th of October. 

Shaki did not appear last night because her evening turned into a total disaster, so we had kitten delivery at ten o’clock this morning. Oh my god she is perfect. Her name is Olivia and she is so small and cute and soft! I could just look at her for hours. It’s such a shame we only get to have her for a few days while Shaki’s away. 

This afternoon I’ve been back at the gym and Vlad actually left me alone! Nice to not have to stop what I’m doing to have a conversation I don’t want to have. I didn’t see anyone who irritates me, and was even gently amused by the enormous toddler wearing cycling shorts under his normal shorts. What is it with guys at the gym who like to pull up their shorts so you can see their entire thigh? Not necessary, thank you. 

Upon getting home, I went straight back to the kitty. Looks like she will need lots of company because right now she is climbing the bars of the cage and doing tiny sad mews because she wants to escape. We can’t let her roam around too freely because she’s so small, she could get stuck anywhere.  

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 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. 

The 8th of August. 

I have had the most fun afternoon. Elle came round with Luna, and later on we were joined by Ben who I haven’t seen for aeons, so it was just lovely. 

We’re nearly there on the pain management I think. 30mg of oxycontin plus some top-ups of the oxynorm seems to be taking care of 90% of it, and I think I can cope with the remaining twinges. 

At least on this regime I am sleeping – I think I am feeling the extra drowsiness from the oxynorm, but I don’t mind, it just means more coffee and I get to have sleep! As long as I’m not dropping off mid-conversation (as I have been known to do), I’m happy. So this morning I got up early-ish so I could get my blog done before going shopping to buy food for me, Elle and Luna. Got some picnic-type bits from M&S, then I spent the rest of my morning crocheting until their arrival. 

They got here shortly after two, and I was struck by how chatty Luna is now! I am “Kaffoon”, which I will take, and she was so good and polite, saying all her pleases and thank-yous. We had our lunch of meat and cheese and bread, then decamped into the living room. We played with some toys and she met Graham the hamster while Elle and I tried to converse. After a while, she started getting a bit wriggly and restless, and we resorted to Peppa Pig on Netflix. It’s amazing how she just goes into a trance, almost. No more chat, just pigs. It did mean we could talk properly, so that was nice. Swapping latest medical stories; there’s always something new! For a Peppa break, we went for a wander round the garden so Luna saw the pond (from a distance), smelled the flowers and played with the windchimes. 

Back in the house, we had a small snack, then more Peppa. She did say please every time and I couldn’t say no! Ben appeared, having finished work, and he and I got depressed about the state of the world. It’s hard being so left-wing. By twenty to seven, they needed to get moving because Luna needed dinner and soon it would be her bedtime, and they live on the other side of Birmingham. We packed up all their stuff, and I carried Luna to the car (which was surprising because she is heavy and I haven’t lifted anything for ages). Elle has just texted me at ten to nine and they’ve only just got home! Awful traffic. We’re watching the men diving and there are some beautiful specimens, which is cheering me up after our loss at the rugby. Bloody New Zealand.

The 9th of August. 

I have just had a very worrying hour and a half, wondering if I was going to be sick. We’ve been at the QE this afternoon (just for visiting; I’ll elaborate later) and in the lift down to the car park, I thought I needed some Rennies, but they didn’t seem to do much good. In the car, it seemed to be turning into nausea, so I covered my skirt with a waterproof, moved my bag and shoes out of the way, just in case, and I got one of Mommy’s handy carrier bags to use as a receptacle. I was also really sleepy from the oxynorm, and I always find closing my eyes makes me feel more sick, so I was fighting that too. I clenched my jaw all the way home. 

Thankfully when we got here, we had ondansetron (anti-sickness) so I took one of those, put my pyjamas on, and sat over a washing-up bowl while Mommy rubbed my back. I am very pleased to say it seems to have worked and I do not think I am going to throw up. Still, I’m just going to have a very simple tea.

Had a very quiet morning, just a phone call to the nurse at the Women’s about the lubricant I got with my dilators, but then I got a call from the GP saying my prescription for the dilators (which I’ve already had) was ready to pick up. I’m going to collect it because I might get the right lubricant this time which would be helpful.

This afternoon, as I mentioned, we had a trip to the QE. Our friend Keith is up on the liver ward, being kept well while waiting for a transplant, so Mommy went up to see him and I went to YPU to see a guy called Dean who I met via BuzzFeed/Twitter. He’s got Ewing’s Sarcoma and is in for a week of chemo so I thought I would go say hello. 

We had a delightful time. Two of my favourite nurses, Tina and Laura were on so I got to say hi to them – apparently they had been talking just the other day about how they hadn’t seen me in ages, which is good! Don’t want to be seeing them really, because that would mean I’m poorly. I was passing on some handy hints for surviving hospital – things to pass the time, which he will need a lot of because he’s got eleven more cycles of chemo left. I was recommending My Dad Wrote A Porno and Like Minded Friends to keep him amused/sane; podcasts can be an excellent distraction from all the shittiness that is a cancer ward. 

His boyfriend arrived and was very sweet too, and we were also joined by a lady from The Little Princess Trust who provide wigs. It was interesting to chat about wigs for men because I never met a guy in treatment who had or wanted a wig, so I learned that actually, synthetic wigs are better for men because they can be cut shorter into styles that are more like what most men would have. We also talked a lot about scalp care (coconut oil) and how slow or fast things grow back, like eyelashes are much quicker to come back than hair. There’s so much stuff that you don’t really hear about if you don’t talk to other cancer patients; he’s going to have to have surgery that will put him in ITU for a couple of days where he’ll be ventilated and will have to have physio afterwards to move the crap that will settle on his lungs, so I was enlightening him as to what that’s like. All the phlegm. 

I left with the wig lady, and went up to the seventh floor to meet Mommy and Keith. Also in his rroom were his husband Gareth, a lady I didn’t know, and her partner/husband who is actually a doctor at the hospital in the thrombosis clinic who works with Gill who looks after me! We only stayed about half an hour longer, mainly discussing wedding hats and holidays. We really had to go at half five, and it was just as well because then I started feeling ill. 

I seem to be fine now. I had a boiled egg and soldiers for tea which has stayed with me, so I think I’m alright. It’s never simple!

On the 11th of July, NHS England announced which treatments and services it will make available to patients. There were over one hundred policies considered, and twelve of them were “cost-neutral or cost-saving” and therefore confirmed. Twenty two more policies were split into levels 1-5, level 1 being the cheapest and of greatest clinical benefit, and level 5 being the most expensive and of lowest clinical benefit. There is enough money to pay for the treatments in levels 1-4, although that may change now a judge has ruled that the NHS can pay for PrEP.

Level 2 includes more treatments for Graft vs. Host Disease, which is excellent news. It also includes penile prostheses for erectile dysfunction. No offence to the people who need this, but it hardly seems quite as important as saving someone’s life. Level 4 includes stem cell transplants for people with Lymphoplasmacytic Lymphoma. It’s expensive, but not so much that it isn’t worth the money.

In Level 5 is “second allogeneic haematopoietic stem cell transplant for relapsed disease”. This decision was based on this public consultation, and I have a lot of issues with it.

The epidemiology and needs assessment uses evidence from one hospital in the USA from 1989 and 1998. Data from one hospital, between eighteen and twenty seven years ago. So we’re not taking into account any advances in science or understanding since 1998. This seems purposely ignorant considering the NHS had been providing second transplants routinely up until 2013 and has information on all the patients they were provided to. We know how long patients in this country using the methods that are standard are surviving having had second stem cell transplants, yet this is being completely ignored. I can’t quite understand why.

They say there is enough evidence to give second transplants to a few, very special people that will somehow be chosen through an exclusive selection process. This sufficient amount of evidence is very limited (an oxymoron, surely?) and rather poor, but they have no intention of trying to obtain more evidence by actually giving more people the treatment that could save their lives and turning second transplants back into a routinely funded policy.

I have tried to simplify the evidence review summary:

Do transplants work?

There is very little published evidence, and the evidence that exists comes from a couple of studies over a period of more than twenty years. The evidence might be biased, and the people involved in these treatments are so varied, there are so few constants that the results are not what one would call reliable, so the outcomes fluctuate. It is clear from the evidence that they do work, but sometimes people die and there are a myriad of reasons for that.

Are they cost effective?

We found one study that recorded the cost of second transplants, but not the cost effectiveness. In short: we don’t know.

Could we determine some criteria to decide who deserves a chance to live?

It seems so. If they relapse after a year, that would be good. Being under forty would also help. If the person’s relapse is caught early, that might be favourable, and if they had full-body radiotherapy.

(I would fulfil two of these criteria: being under forty and having my relapse caught very early. But seeing as it was only four months after my first transplant and radiotherapy wasn’t part of my treatment the first time, I’d be sent home to die.)

When the panel reviewed data from the British Society for Blood and Marrow Transplantation (BSBMT) database for the period 2007-2012, they found that survival outcomes for allogeneic transplants using matched unrelated donors are nearly as good as those using sibling donors; five year overall survival of 30% is comparable with the outcomes of first transplant for some subgroups of acute leukaemia.

If this is the case, why are second transplants considered such poor value for money when they have almost the same outcome as transplants using the best kind of donors, which are routinely funded?

The final decision was that patients whose first stem cell transplant results in relapse should be offered a second transplant if they were in complete remission before the relapse, the relapse is at least twelve months after the first transplant, and they are deemed clinically fit to undergo the transplant by a team of specialist doctors and nurses. However, if a patient relapses within a year of the first transplant, they should not be offered a second transplant.

This is appalling. I am greatly upset by it, as I relapsed only four months after my first transplant. My first transplant came from my sister, who was a 100% match. However, I did not get any Graft vs. Host Disease, which is defined in the consultation as such:

“Graft-versus-host disease is a common complication following an Allogeneic tissue transplant where white blood cells (immune cells) in the tissue (the graft) recognise the recipient host as “foreign”. The transplanted white blood cells then attack the host’s body cells. Graft-versus-leukaemia response is the desired effect following Allo-HSCT where donor cells eliminate malignant cells.”

Essentially, a bit of donor/recipient cell fighting is desirable, because any lurking malignant cells are also destroyed. I had none of this with my first transplant, because my sister was almost too good of a match. I was so lucky to have my only sibling be a match when those odds are just one in four, yet so unlucky as to have that be the thing that came back to bite me. And that would be the reasoning that the NHS would now use when I would be informed that treating me would not be good value for money for the taxpayer. I would be offered chemotherapy to try to keep the cancer at bay, and/or palliative care should I wish to just die as comfortably as possible, the costs of which can amount to equal those of a transplant itself.

Today I received a letter from my MP, Andrew Mitchell, in response to an email I sent via Anthony Nolan’s campaign to ask MPs to support funding for second transplants. He was not particularly interested in doing so. He has met me, and I reiterated this and my story in my email, yet he still decided to write back and say that actually, treating me has been very poor value for money and basically, the NHS should not have bothered giving me the past eight years.

He also felt the need to inform me of just how great the government have been at investing in improving the provision for stem cells for patients who need a transplant. We appreciate that, but it seems somewhat redundant when that provision is not allowed to be used for certain people whose lives could be saved just because their disease came back earlier than someone else’s. It seems barbaric to me to decide that these people are not “cost-effective”. I think it is the terminology that bothers me, like they have gone out of their way to try to forget that these are real people that this decision will affect. Human beings with parents, siblings, children who simply experience bad timing and for that, they are written off as unworthy of help. People who may have worked a long time, paying taxes, expecting the NHS that they have put money into to help them in their time of need, being told that that money is going to pay for a prosthetic penis instead of a treatment that has a good chance of saving their life. Or people like me, who get an aggressive cancer at sixteen and never have a chance to work but grew up believing that as a wealthy first-world country, our healthcare system was there to treat the sick and will now be informed that actually, no, it’s not for everyone. Not if you’re not “cost-effective”.

The 24th of May. 

The shoulders are protesting. This morning I really couldn’t see how I was going to manage a gym session. My back, elbow and shoulders were all sore, and I generally felt somewhat delicate. Had I not been going to see Vlad, I wouldn’t have gone in. 

I wrote up a blog post, then went back upstairs to try and have a rest and get in the right frame of mind. When I went to make my lunch, I also looked for some co-codamol but the box in my drug bag was empty and I didn’t have the impetus to search the cupboard for more. I just made myself a sandwich and got a brownie, but by the time I’d got to the living room to sit down, my back was excruciating. We rang the clinical nurse specialists to see if they could find out the results of my x-rays, but none were available so have to ring back in the morning. 

My session with Vlad was booked in for 2, but I was early and his previous client was slightly late, so I did 15 minutes of weights before we got started. I explained more about my lungs and all my diseases, then we did some stuff on the mat. Calf raises, some yoga, squats (ugh), press ups, sit ups, leg raises, all sorts of business. By the end I was pooped – he made me sweat. Nobody makes me sweat. I am to practise being mindful of my breathing and some meditation. I think he can teach me some things, so I will give him a go. 

Becky came round to meet the kittens briefly, and confirm our plans for dessert café on Saturday. It’s going to result in a sugar coma. 

The 25th of May. 

Today everything hurts, so I can’t differentiate between vaccination and PT pain. I am very stiff. 

It has been a rather uneventful day. This morning I spoke to Nicola, a CNS, about the results of the x-rays, but the reports haven’t been done yet so she was going to chase them up but I don’t know when we’ll hear back. I spent a couple of hours letting the kittens run around which they used to chase each other and fight. They refuse to be lap cats yet. I shall have to train them. 

After lunch (and the surprise series finale of Criminal Minds, argh), I went upstairs to work on what I’m going to say to the students at Anthony Nolan next week. However, I got really engrossed in my notes because I’d got to the admission in Halloween 2008 and that’s when it all got interesting. It was very difficult – at times I had to stop reading because it was a horrific period in my life. I only kept going because I knew it got better. I found out that when my DNA was confusing, the doctors were actually really concerned about the cancer coming back again, but I wasn’t informed because I was so depressed, it was decided I couldn’t handle it. Thankfully, because I am excellent, my body refused to succumb to what was expected, and instead I am “exceptional…in medical literature”, as written by Mark Velangi when I was denied funding for photopheresis. 

So instead of practising my talk, I was absorbed by the story of the impossible girl.