Archives For leukaemia

The 9th of March.

This morning was infuriating, but this afternoon was rather serendipitous and enjoyable.

I was annoyed because I was waiting for a delivery of part of Mommy’s Mother’s Day present from DHL, but they don’t give you a delivery window, just say “before end of day”. This meant we couldn’t go out for me to have a look at Wyndley gym and then to get Easter eggs until they had come. I hoped it might come this morning, so we could go good afternoon, but no.

After lunch, I went upstairs to apply some face, and the doorbell rang, but it was just the postman. So I changed my delivery to a pickup point, and now I’m have to get it from a mini supermarket up the road, probably on Monday. Stupid DHL.

Then Mommy took me Wyndley so I could talk to someone about membership. I met with a young woman called Kirsty, who showed me round the facilities. Downstairs is all free weights, then upstairs is resistance machines and cardio. I climbed the stairs and they weren’t too bad, I just had to get my breath back. We were chatting and she complimented me on my hair, which brought up the leukaemia and it turned out she had ALL six years ago so then we couldn’t stop talking about all the things we had in common. I’ve got a free trial until the end of the month, an appointment with a trainer to set up a plan, and a new pal!

The 12th of February.

Where to begin? I have been reluctant to start this because I feel like it might dilute the memory or I’ll forget stuff.

The journey down was nice and straightforward. The chap was even there with the ramp when we arrived at Euston! We got a taxi to Jen’s in Highgate, where I was going to try on fun clothes in order to find an outfit for the show. I was shown into a little room, one wall full of clothes, one full of shoes, plus a rack of dresses, the floor covered in more shoes and bags and jewellery behind me. First I picked some favourites to try one, because I had to be selective. I looked at four or five in the end, but eventually decided that the first one I’d worn was the best. A navy blue midi dress from Libelula covered in sequins with pink piping, plus some Nadia Vodianova shoes and massive clip on earrings and a two-finger ring. I left with a promise to leave it at the hotel reception in the morning.

We had lunch at the nearby Cafe Rouge (saw so many good dogs), then another taxi to the hotel. When checking in, we each were given a fresh warm cookie, which I ate on my bed very messily. Unpacked, then collected what we needed for the show. Next stop, Union Chapel!

When we arrived, we rang a buzzer and were met by Bea, who works the evening shows. She showed us the backstage/dressing rooms, the facilities, and of course the chapel itself. They had built me a massive ramp to get onto the stage, and I met the sound guys so handed over my old iPhone, plus the cable and power pack.

There was no point going back to the hotel, so I sent Mommy and Daddy to get coffee, then it wasn’t long before the Anthony Nolan team and Christine arrived (separately). I finally met Lucy, then she and her colleagues set up all their tables and banners, and I got changed into my spangly dress. I had a practise run up the ramp, then got talking to lot of Anthony Nolan volunteers, remembering some from previous events. Then the doors opened and it was time to meet my public! For a while, I just watched strangers coming in which was brilliant because they weren’t obliged to come, they were just supporting the cause. Then I started seeing people I knew, like Emmer, Charlie, Denise, Amy, Joy, Lauren and Hannah. Mark and Shereen came over and I gave him a huge hug. I’m so glad he could come. Acaster arrived, then Suzi and Flick, and I went backstage with them. Soon Nish appeared, and before long, it was time to start the show! First up, aside from our lovely host, we had James, during whom Sara arrived, and then Felicity. Nish then introduced me, and I drove up (nearly off) the ramp onto the stage, giving a royal wave. The cheer was immense, and I had to tell them to stop because I was going to cry. I said most of what I’d planned, plus I gave Mark a shout out because he deserves to know what a hero he is. In hindsight, there are things I wish I’d said, but no matter. Everyone said I did really well, and I was happy.

In the interval, I gave Josh the bear for his baby, and met the Anthony Nolan patients who’d come backstage and lots of photos were taken. Josh opened the second half, followed by Suzi and Sara. Everyone was brilliant, it went better than I could have hoped. I said goodbye to the people who had waited at the end, and Nish, Sara and Suzi.

So many hugs. And it was all over. I put my socks and boots back on, and we made our way back to the hotel. Pyjamas, Graham Norton, wind down, bed.

The 13th of February.

I didn’t fall asleep until about three, and woke up at seven. Made myself a cup of tea, and got everything packed back up. I left the garment bag for Jen at reception, then we had coffee next door at Saint Espresso. Breakfast was required, and as it was pancake day, we went to The Diner nearby. We went past The Breakfast Club and its huge queue, but found The Diner nice and quiet, where I had buttermilk pancakes with bacon, maple syrup and whipped honey butter. So good, but I couldn’t finish them.

A last cab back to Euston, where I got another coffee, and we trundled home. This afternoon, I have put all my warm clothes on, curled up in my armchair. So happy.

 

The 15th of August. 

Quiet day in the Cartwright household – I’m on my own because Mommy and Daddy took Grandma up north to see Aunty Audrey, so it’s been a day of carbs, crochet and crime drama. Well, only a little bit of crime drama but I enjoyed the alliteration. 

This morning I did a blog post and watched the last three episodes of Glow. I finished off the little teddy, but because the wool is mainly pink, it looks more like a pig than a bear. 

I sorted myself out some lunch, and had got engrossed in trying to de-pig the bear when the doorbell rang. I had a chap coming to view Betty and had completely lost track of time. I let him in and took him to see her – very much your average viewing, as she is an excellent kitty and showed herself off to the best of her ability. They’ve had a cat for twenty years so I know they can look after one. Just got to confirm, but I’m pretty sure we’ve found Betty a home!

Since then, I have been trying to write a blog post for tomorrow. It will be ten years to the day since I was diagnosed with leukaemia, since this all started. What a decade it has been. 

The 16th of August. 

Happy 10 year anniversary to me!

It has been a lovely day. I had a good sleep, woke up at an acceptable time, and had my breakfast and coffee while I put together a blog post about the day. I put my new charm on my Pandora bracelet, which I think we can now say is full. Convenient – ten years is a nice round time to stop. 

I wanted to make cinnamon buns, so when Mommy got back from Grandma’s, I printed out a recipe I’d found to make them in 45 minutes and we gave it a go! To be fair, Mommy did most of the work, and I did the easy bits, like sprinkling the cinnamon sugar all over the dough. When they came out of the oven, I poured the icing over the top, and let them cool while we ate our lunch. We tore them apart for pudding and have to say, they have been a success!

This afternoon, I went to Black Sheep to get my hair dyed. I had taken inspiration from Love Symbol #2, the colour Pantone released to honour Prince, and mixed it with a dark teal. I have unintentionally matched my glasses and sunglasses. No bleach today, so it didn’t take very long, so there was time to come home and get changed before going out for dinner. 

We went to Water’s at Resorts World, because we’ve known Andy for a long time and know he doesn’t do weird food. I ordered a peach and passionfruit bellini, and set about perusing the menu. I decided to go for a saffron risotto with chorizo and deep-fried squid to start, and a marinated duck breast with spring onions, creamed potato and pak choi to follow. While we waited, we were given tiny tomato soups as an amuse bouche which was delicious. I love bonus food. My risotto was really good, although quite filling, so I had to leave more than I would have liked because I had more food to fit in. I was very glad I did, because my duck was excellent, soft and pink, and I’d been worried that it might have been spicy but I had no trouble. At this point, I had to stop – there was no more room in my belly. I think if we go back I’ll skip the starter and have a dessert instead because Mommy and Daddy were both delighted with theirs. 

I’m very tired and very full and very grateful to be alive.

Here’s to ten more.

August 16, 2017 — 3 Comments

“We found leukaemia cells.”

I was woefully unprepared for those words. It was 2007; I had a Samsung flip phone and no hopes of Googling “causes of anaemia” while I waited for bags of other people’s blood to drip through and tried to ignore the snores of the father of another patient. There hadn’t been much chance to chat with my family about what I might have, as I’d been admitted the evening before, given all the blood, had a bone marrow trephine and lumbar puncture the next morning, then spent the rest of the day sleeping off the general anaesthetic. When the doctor came to speak to me and my parents and took us to the nurses’ staff room to talk, I didn’t yet know that being taken somewhere private is code for bad news, so I went into that room with no sense of trepidation whatsoever. I came out with my life as I knew it completely changed. 

I’ve told the story of the next few years so many times, I’m not going to now. It’s here, if you need the background. 

Whenever I meet someone and inevitably have to tell them about my life, they almost always ask “Are you alright now? Are you better?” and I don’t know what to tell them. I tend to say “Well, I don’t have cancer anymore” because that’s the only answer that’s true. What is alright, or better? If we’re comparing my body before cancer to now, I used to be of a healthy weight but not mind, smoked, drank a lot, took drugs and was not a great person. Sure, I could walk around and do as I pleased, but I was a deeply unhappy sixteen year old and I’m not entirely sure I like the path I was headed down. One good thing getting diagnosed with cancer did was put a pause on my life; all my bad habits had to stop, I had to talk to my family, and become friends with my older sister, who became somewhat vital in the saving of my life. The vague ambitions I had for my future had to be put on hold while I considered what I was really equipped for, whether I was healthy or not. All my friends did their A-levels, went to university, moved out of our city to jobs and lives elsewhere. I still see some, but we are different people now and our lives don’t fit together the same way. The world is very different now too. When this all started, I couldn’t live-tweet my A&E trip because that concept didn’t exist – the only way I accessed the internet during my inpatient chemotherapy was through a dongle attached to my mum’s work laptop. Facebook still said “Kathryn Cartwright is…” for a status update. I wasn’t able to join the worldwide community that you now find if you start blogging about being ill. I didn’t know how much you could worry when a cancer friend you only know from Twitter goes quiet for more than a few days. I didn’t know I could care so much about how this country is run, that I would be the person worrying at night about how I might survive if things carry on the way they are, that it could be so scary to be really vulnerable. It is terrifying to become disabled overnight, when I used to feel so invincible. 

But now I feel invincible in another way. I was given terrible odds, even to begin with – 20%, at the start. When I relapsed, they dropped to about 4%. When my liver failed, I had days to live by the time I got to transplant. What happened after that, I logically should not have survived. Nobody else has. I’ve had a pulmonary embolism, a collapsed lung, pneumonia, sepsis, a very persistent superbug called klebsiella, my bile ducts had to be reconstructed, I was told in 2013 that I needed another liver transplant but my lungs wouldn’t support me off the ventilator, so every infection since is my potential killer. People keep telling me I’m going to die and I still haven’t. People also keep telling me that I should bottle what I’m made of, because it’s strong stuff. And that I’m lucky. I think lucky is a relative term. I am lucky in that I have survived, but I am unlucky compared to some of my fellow patients who are living completely “normal” lives now, with no ill health to speak of. We are all better and worse off than people we could measure ourselves against. I choose not to really think about luck. Neither luck, nor cancer, nor any of the other things that keep getting thrown at me have made me the person that I am today, ten years later. 

And what a decade it has been. I like this person. I have a great relationship with my family now, I love my friends, I actually give a damn about people other than myself and am doing things to make a difference. I love being able to work with Anthony Nolan, helping them by telling my story to people who matter and raising awareness about the work they do. I have a better understanding with my body, working with it, not against it, the way I have in the past. I am empowered by the things I can do, not discouraged by what I can’t. I try to use my experiences to inform other people who are going through them for the first time, navigating a system that can be tricky and unhelpful. I always wanted everyone to know my name but I never really knew what for. Now I think it’ll be fewer people, but I hope they’ll remember me for a more important reason. And I’m not done yet. I have books to read, things to make, shows to see, people to meet, words to say, wrongs to right. The last ten years have by no means been fun all of the time, but the highs when they come are beyond measure. I know it’s taken a long time to get here, but I feel like I am just getting started. Here’s to ten more. 

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. 

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”.