The 18th & 19th; There was so much pain as it ripped away from the skin inside.

The 18th of November.

Today has not gone at all how I expected. Up at half past five, at the Women’s by half seven. Mommy came up to the ward with me (mainly because I couldn’t carry my overnight bag on the chair), then left me with a couple on my right and one in the far corner. The nurse (whose name I can’t remember) came to clerk me in, and was amazed by my history (as are most people). She was grateful for my drugs list, gave me a red wristband (allergies), then the healthcare assistant, Mercy, came to do my obs and bring me my anti-DVT stockings. While getting changed, I took a sneaky sip of water to help my dry mouth, then I sat and listened to the corner couple having a hushed, Jeremy Kyle-style domestic. She was really stressed about whatever she was having done, and he was telling her to “Just deal with it like everybody else in here.”, which was not very helpful. They both wanted each other to fuck off, but she also wanted him to be able to stay because she’d freak out if left alone. I gleaned that she wants a hysterectomy but nobody will do that because she’s only 23. Poor girl.

Miss Byrom and Gerwyn the anaesthetist came to see us all individually. She just ran through with me again what she was going to do – remove/separate the adhesions, attempt to do a smear, and take biopsies if deemed necessary. Gerwyn was very nice (as are all the anaesthetists I’ve met) and he was glad to have my latest lung function results. He mentioned that he wouldn’t be intubating me (for a short sleep I’d bloody well hope not), just putting down a smaller breathing tube. That was fine.

I was second on the list, so while I waited to be taken down, I decided to use the time productively and do a blog post. While I was writing, the girl in the corner came to the conclusion that she didn’t want to stay, but before she came back, the porter came and he and Mercy took me down to theatre.

I moved over to the theatre gurney, and was wheeled into the anaesthetic room. I met some new people, confirmed my identity and what I was having done, then Gerwyn had to find somewhere to cannulate me. The first vein didn’t want to co-operate, then the one on the other hand was only too happy to squirt blood everywhere. Still, it was in, then he gave me some morphine to relax me, put the mask over my face emitting gas that smelled of vanilla, and off to sleep I went.

I awoke maybe 45 minutes later, conscious that some time had passed but not long. No dreams. I was acutely aware that things were inside me and that I needed the toilet. I was told that in theatre they had put a catheter and a pack in, which would be pressing on my rectum which was why I felt like I needed to poo. The nurse in recovery was pleased with how awake I was and that I was drinking and talking, so she called the ward and the other nurse looking after me (Rachel) came down. I asked her if the lady in the corner had stayed and it turned out she had. Change of heart. The boyfriend had had to leave though because them’s the rules. She checked the inco-pad underneath me and we found that the catheter had come undone, so she screwed it back together and changed the pad so I had a clean bed.

Back on the ward, they said I would have to stay for at least six hours, until half past four, when they could take the pack out, then the catheter, and I’d have to pee without it. This was not great news but fine, I could deal with it, I just had to adjust my position regularly. It was really, very uncomfortable, and the need to poo did not abate at all. I was brought some tea and toast which at least made my tummy stop rumbling. I texted Mommy and Christine to let them know how I was, and finished off the blog post. Visiting started at 2, so I asked Mommy if she’s come then with some coffee and lunch. To pass the time, I worked on my Christmas scarf and tried to ignore my discomfort.

When she arrived, I explained in more detail what had happened this morning and told her about the whispered argument in the corner (which seemed to have been forgotten when he returned). I drank my peppermint mocha and ate my panini, all the while wriggling around. I tweeted and crocheted, and we kept hearing the nurse ring a particular doctor about him coming to see the lady in the other corner, then she could leave. She waited for him for four hours, and in the end, he didn’t even show up, just gave some instructions on what she needed to do. I would have been fuming.

By ten past four, I was counting down the minutes until we could take the pack out. I was the only one left in the bay by this point, so I could be plenty vocal about my need to have to removed. Thankfully, at half four on the dot, Rachel was all ready to do it. The curtains got pulled round, I pulled the sheet down and spread my legs. She put a sick bowl down for the pack to go in, and started pulling out the gauze. I have never, ever experienced anything like it. There was so much pain as it ripped away from the skin inside my vagina, and seemed to go on forever, like when a magician pulls a string of flags from his sleeve. In a way it did seem like magic because I have no idea how they fit so much in there. At one point, we got to a knot where it emerged that there were two packs tied together and we were only halfway through! I was in absolute agony but I told her to keep going because I just needed it to be over. When she’d finished, the blood-soaked gauze filled the sick bowl and I didn’t even feel any of the relief that I’d expected, just sheer trauma. Thank fuck I never have to give birth because that was one of the worst things I have ever been through.

I was still bleeding a lot, so we didn’t take out the catheter in case they had to put another pack in. I really did not want this to happen and I willed my body to stop. Thankfully, it did slow down, and by the time Miss Byrom came round, it was at a much more acceptable rate. She had prescribed some topical estrogen cream and explained how to use it, and gave me a slightly more graphic description of what had happened in theatre. Basically, there was only a tiny amount of vagina that was open, maybe a centimetre, and she really just had to stick her finger through and rip me apart. Brutal, but the only way. Also, they couldn’t see any hint of my cervix or the coil, but they’re definitely in there. Just don’t know how we’ll get them out when it comes to that. Still, she was happy with how I was, so the catheter and cannulas could be removed. Then I would just have to wee and I’d be able to go home! I didn’t expect this to be a problem as I’d been drinking all afternoon, but my bladder was not keen on letting any of it go.

I managed one rather small wee, which was not adequate, then I just had to drink more. I drank glass after glass, watching the clock because I really wanted to get to The Glee to see Tom and Suzi for 8. About 10 past 7, my stomach was as tight as drum with the amount of water filling it up, and I went to see if there was anything to be done that might help. I couldn’t have any diuretics, but Rachel was happy that I had at least done a wee and was confident that I was sensible enough to know what to do if anything seemed wrong.

I went for one more pitiful try, then Mommy and I took the paperwork and cream, and off to The Glee we went! I decided that I would text Suzi and ask her if she could get a member of staff to let me in the back door so I could go up in the lift and not have to climb the stairs, which she very obligingly did.

This meant I was the first one in, and for a little while, I sat alone in the studio while an excellent playlist of musical theatre tunes played. I couldn’t do the kicks on stage that I might have, but I did take a selfie because I’m cool. Then the room started to fill up, and Tom and Suzi appeared! The format was essentially intro, Suzi’s show, interval, Tom’s show. They were both equally hilarious and thought-provoking and delightful in different ways, and I enjoyed myself immensely. I popped into the dressing room at the interval to say hello and have hugs and chats, and I got to wang on about my very strange day.

Time flew by, and suddenly it was time for part two, so we had group hug and a photo before Tom’s half. I think his show was longer than Suzi’s, and by the time it was curtain down, it was nearly eleven o’clock and I was very ready to go to bed. So tired. But I was really happy I got to finish my day laughing so much with my lovely pals.

The 19th of November.

Well I don’t feel great. Having got in late, I thought I’d sleep really well, but all that water caught up with me and I woke up four times to pee. Did not want to wake up at half nine when my alarm went off but I thought I should.

I stayed in my pyjamas all morning, feeling rather delicate and taking things slowly. Mommy and I caught up on I’m A Celebrity, and I finished crocheting the tiny Christmas tree for inside a bauble. Lunchtime came round quickly, and it felt like a beans on toast kind of day. Warm, cosy food.

This afternoon, I had a go with the topical estrogen. It didn’t work quite the way I thought it would with the dilator, so tomorrow I’ll try the applicator that was provided. It certainly went in a lot further than it used to, so the surgery definitely did its job. I was glad I decided to it on a towel as I am still bleeding and had I not, I would have ruined a duvet cover. Admittedly only a rather unexciting one from Tesco, but still.

I then spent a good couple of hours writing four and half pages about yesterday. I really hope you enjoy all the detail. When I’d finished, I finally read this morning’s paper, and made the penultimate bauble. Just one left to go, for the tree to go in. It might have to be a special one because a) I have run out of outer bauble wool and b) the tree seems too big to fit in the same size as the rest.

I think it might be somewhat longer than I thought until I am back at the gym.

The 27th & 28th; I could just feel the tears in my face and couldn’t speak for rage.

The 27th of July. 

Woke up at stupid time AGAIN. I am sure it is the fault of the Tramadol even though it is supposed Fri have the opposite effect if anything. I would mind less if it was actually doing anything for the pain but I am in just as much misery as before, even more so today because the tops of my legs hurt. For crying out loud. 

This morning I had an appointment at the Women’s to see a nurse about the problems I have being examined. Apparently, radiotherapy can cause a condition called vaginismus. Yeah, I’m going to talk about my vagina, if you are upset about that then skip to the next paragraph. People don’t talk about this enough, there is no information, so I’m doing it. It’s very painful and annoying but it can be treated, hooray! I have been prescribed these things called vaginal dilators. There are five sizes, the largest of which is apparently terrifying and I will never have to use it. I start with the smallest, obviously, and I have to use it every day until it is easy to insert, then move on to the next size up. I will require lots and lots of pillows, a distraction and a lock on my bedroom door. It’s going to be interesting. 

While I was seeing her, Mommy went to see the pharmacist in haematology clinic (they’re on the same site) to ask how long we should wait before deciding the Tramadol isn’t working, as the doctor had said it would take a few days. It turns out she didn’t know what she was talking about because I should have felt relief within 30-60 minutes of taking the first dose. Obviously, that has not happened. My consultant was not around to prescribe more or something stronger, so we are ringing the GP at 8am to get an appointment and make them write something up for me. I can’t carry on like this. 

Before going home, we went into town again to get my Pandora charm for Saturday because we won’t get another chance before then. We got the diagnosis anniversary one too, because it’s only a few weeks away anyway. They just have to stay in the boxes until the days themselves. 

After lunch, Mommy went to see Grandma, and I set about watching more episodes of Stranger Things (only three left!) and writing up a monster blog post from Saturday and Sunday. It took all afternoon with the uploading of the photos too, then when I’d finally got it posted, something malfunctioned and the entire thing got deleted. Many obscenities were uttered. 

I went to give the kittens a stroke to lower my blood pressure, then did it all over again. I have a problem with the cats now, because they are all my friends, it means that they all want to be petted simultaneously and I do not have enough hands! Nettie is the worst – if anyone is getting attention, she has to get involved. So jealous. 

The 28th of July. 

Yep, I am no longer sleeping past six am it seems. That’s fine, it just means I’ll get through more coffee and Netflix will definitely be value for money for a while. This morning, I finished off Stranger Things. It was so good. 

I got a GP appointment today for 11.40, because we rang up at 8. I had the chiro first, and obviously we talked about what’s going on with my back. It seems that they know Mr. Harland very well; they refer patients to each other. Trine said that if she were having spinal surgery, she would want him to do it. She also explained what actual surgery he might do, which is really good to know. One of the receptionists is training to be a doctor, and she was in surgery with him just the other week! I am feeling very confident about seeing him now. 

Straight to the GP who was on time, astonishingly. It was a lady I don’t know, and it didn’t go well. She hadn’t bothered to even look at my notes before seeing me. I got her to sort out the vaginal dilators, then we talked pain relief. She wouldn’t give me opiates. I have to take gabapentin in combination with the tramadol and regular paracetamol. I am not expecting it to work. I will try it and if/when it doesn’t work, I’m going back to hospital and getting Ram to write me up oxycontin or morphine. When we left I was so angry, I could just feel the tears in my face and couldn’t speak for rage. 

I calmed down after an hour at home, had lunch, and this afternoon my friend Anna came round. We had coffee and cake and lots of chat. Memories from school, of Miss Jackson, the deaths of our respective pets (R.I.P. Polo and Oscar), all the crap that’s going on with my body. She is a teacher, so we discussed that a lot. Secondary school, which I think is probably harder than primary. All those hormones. She said some very disturbing things about the way girls talk to each other, it sounds dreadful. They have no problem calling each other slags, they are of the opinion that if you are drunk or in a short skirt, you are asking to be raped. It is horrifying. They need Anna because they are not learning about feminism from anyone else. 

She left just after half four, and shortly after, a lady called Tracy arrived with her mother to view Nettie. Sheila rang me about it while I was in the changing room at the chiro, so I had to cut her off, but she emailed me the details and I set up the meeting. They are lovely people, very knowledgeable about cats and dogs – she has a boxer but she’s very timid and obviously wants something to mother. Nettie will absolutely fine with that; she is will be the alpha. Everyone was very well-behaved actually, But Nettie is who she wanted and Nettie wanted her. Perfect match. She’ll be picking her up in the morning!

Keep sharing and ask your friends to! Jeremy Hunt needs to see this.

The 25th & 26th; What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has.

The 25th of July. 

Well, I have some drugs. Not the ones I hoped for, but I have to try these first before I can get anything stronger. 

We rang up first thing this morning, and when Jo, the clinical nurse specialist we spoke to, rang back, she said to come in at 1pm to see a doctor. I then kept writing about Saturday until 11, when we went into town before going to hospital. 

I desperately needed to replace the ballet pumps I’ve been wearing – they are nearly ten years old and literally falling to bits. Topshop didn’t have a pair in my size, so I went to New Look, where I ended up getting the same ones in three different colours. Sorry Phillip Green, none of my cash for you. I also picked up some trivial stuff like moisturiser and birthday cards, then lunch from Pret which we ate in the QE car park. 

Up on 621, I waited over an hour for the doctor to appear. That was fine because I’d taken my diary so I could finish my writing. I got that done, then twiddled my thumbs and listened to music until I was called.

We had a chat, and she did some poking although to be honest that doesn’t really make it any more obvious where the pain is; it’s not muscular so it’s not tender. Just constant ache, made worse when I move at all. The strongest drugs she could prescribe were slow release double strength Tramadol, so I have to take that twice a day for a few days and see if it makes a difference. I’m honestly not expecting it to, but we’ll see. 

We had to wait in pharmacy for ages because there was a palaver over the fact that it’s a controlled drug, but we were able to leave at about half three. When we got home, the kittens were ravenous, practically chewing my arm off. I did apologise profusely but they don’t care. They got food; they’re happy. 

Tonight, I’m trying to get the video I made yesterday seen. It’s on YouTube, Facebook, Twitter and instagram, and I am begging everyone to share it with their followers. I want Jeremy Hunt to explain why he’s arbitrarily chosen this group of people who apparently deserve to die. Why he’s basing this decision on research that is 20 years old and has no plans to use current data or get any more, despite us constantly improving the science behind the transplants. Why he feels prosthetic penises are more important than the lives of people with cancer. What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has. It is a privilege to be the health secretary yet he treats it like a game, and he gets to play God. 

The 26th of July. 

Terrible night. I barely slept at all for no discernible reason. The pain wasn’t unbearable for once, I wasn’t too hot, my brain just wouldn’t go to sleep. In the end, I started watching Stranger Things on Netflix and I am gripped. Loving it so far. 

I got up just before nine, and washed my hair for the first time since it was dyed. I wouldn’t mention it, but it had a slightly alarming effect. Because the colour is so vibrant, the water and shampoo made the dye run, and when I had dried my hair, Mommy noticed that most of the back of my neck had been stained pink. I was really glad James had let me in on the tip of milk being a great stain remover. Worked like a charm!

My day has been talking and writing. I got an email from a journalist from the Birmingham Mail wanting to talk about my video, excellent! Before I got back to her, I spoke to Simon at Anthony Nolan to make sure I had all the points I needed to cover. The writer, Anuja, rang me as soon as I replied to her, so then I talked to her and that should be in the paper very soon!

After lunch, I spent most of my afternoon uploading photos from the games on Saturday and writing because I am behind again. I’m not quite finished because I then got another interview request but it was email questions, so I stopped the blog-writing to answer them all in probably far too many words. I suspect I will be edited considerably. 

I am so tired. Sleep tonight please. 

The video is here, please watch it and share it with your friends.

The 17th & 18th; This must be how actual writers feel.

The 17th of July.

I do love summer, but it’s too hot in the sun. I enjoy being able to wear my dresses though. There are not many days a year that I can, so the next few might require outfit changes so things get worn. 

Got up earlier then usual for a Sunday because Victoria and Isobel were coming to look at kittens at half ten. They were very prompt and I ushered them in, so the kittens legged it to the other end of the room. We stayed where we were, and slowly Nova, Nettie and Noelle all came to say hello. Isobel was very indecisive (as 3 year olds are), stuck between Nettie and Noelle. I think the decision was made for her when Noelle really took to them both, having a great time playing with their fingers. 

They left after about an hour, and they’ll come back to take her home when they are back from holiday in a couple of weeks. Her name will be changed to Sophie so we’ll have to start calling her that. 

After Grandma had been taken home from church and we’d had lunch, Mommy and I went to the Cats Protection Garden Party and took some cakes for them to sell. We saw Jen and Lee, bought some cake, jam and raffle tickets, but couldn’t stay long because it was roasting and I needed to get back to feed the kittens. 

For the rest of the afternoon, I’ve been photographing the kittens for the website, filling in my Anthony Nolan expenses forms and composing an email to Mark Tami about mental health post-transplant. I will update my blog, I swear. 

The 18th of July.

More writing. I think this must be how actual writers feel, doing essentially nothing but. I didn’t get any done this morning because there wasn’t really time before I had to go out. I had my breakfast and coffee, fed the kittens (who are much friendlier now we’ve taken the cage down), then it was time to go to the gym. 

I was meeting with Vlad because now I’ve had this news about my spine, I don’t think it is wise for me to be putting any extra strain on it until I have seen the surgeon, know what’s going on and what we’re going to do about it. Mr. Harland might say it’s fine to exercise, or tell me what I can and cannot do, which would be great and I’d go back immediately, but it hurt every time I worked out and so for now, I will not be gymming. He asked how my diet had been, which I think is funny because I will not be changing that for anyone. It’s taken my entire life for me to cultivate a relatively normal relationship with food, and any obsessive monitoring of what or how much I eat will only end badly. Sorry but not sorry. 

After lunch: writing/blogging. I’ve written up two out of three, with the second one scheduled to be published tomorrow morning, and I’m going to try to do the third one this evening, because tomorrow I’ll have another one to do!

The weather is too warm. I cannot go outside because it just feels too close. The air feels heavy. Sleeping tonight will be a challenge. Daddy’s just got in from work and I remember just how gross the train home can be in this kind of heat so I do not envy him at all. 

The 15th & 16th; I didn’t go through all this for nothing.

The 15th of July. 

I woke up at half past three to the news from Nice. Went to sleep angry about one thing, come morning I’m aghast at another. The present is really, really fucked up. What has happened to us?

I don’t know if this sounds terrible, but apart from that, I have had a really great day. Waking up way before my alarm was a blessing because it meant I had plenty of time for my eyes to adjust to light and so by the time I wanted to put mascara on, I could do so without pain. 

At New Street, I got my second coffee of the morning and went to wait in the assistance office. My assigned chap turned up to take me to my train a little bit closer to the wire than I would like, but then the train hadn’t actually arrived at the platform yet so I was worrying for nothing. During the journey, I made friends with the guy sitting opposite me after I noticed he was looking for Pokémon, but the train was going too fast to catch any. He asked if I was a writer as I had been scribbling away about transplants/Jeremy Hunt, I explained what I was doing, and he said he was an air quality consultant which I am a fan of; I do not enjoy terrible air. Now we’re following each other on Twitter. Well done Pokémon. If I hadn’t been talking to him, I would’ve noticed a tweet from a follower who was on my train in my carriage! I do wish they’d come and said hi, I would not have minded. 

At Euston, the assistance guy was there! I didn’t even have to wait or anything, despite some kindly strangers asking if I needed them to get help. Amazing! I bought another coffee on the concourse, then went to get a cab to London Metropolitan University. 

The driver was not 100% sure which building it was, but he knew where, and with Google’s help, we got there. Plus on the way, we had a very interesting discussion about regional British accents (starting from him noticing that I very much do not have a Brummie one). He dropped me off where we thought was right (I could see a big Reception sign), and the man inside helpfully explained that the Great Hall was just a few buildings down the road. I found it and was met by Anneliese in the foyer, who took me where we needed to go. 

In the hall, I was greeted by some familiar faces from Tuesday, Simon and Cassie checking that I did eventually get a taxi from Westminster, and we positioned ourselves at the front so I could get up on stage without getting breathless. I briefly met Henny, the Chief Exec, who thanked me for coming, then it began! She started by talking about the progress made this year, and the plans for the next. She was followed by an excellent video about the strategy for the next few years, and then Hannah of Finance and Resources came up to elaborate on the video we’d just watched. There was a Q & A with the senior management team, which is comprised of many people! Presented in a rather light-hearted and vastly amusing fashion by a chap who introduced us to all of the panel, then asked them some questions which had already been submitted, ranging from “How will we be affected by Brexit?” to “What would your Desert Island Disc be?” with answers that were obviously serious and some not-so. 

Then it was my turn! I started off by talking a bit about my role as a Young Ambassador, then talked about my transplants. I got a little bit rambly, but it was all going well; everybody seemed to be engaged, laughing when I tried to be humourous, and then suddenly I had five minutes left. I had to move on to my hopes for the future, for the best donors and the best post-transplant care possible everywhere, not just in major cities, or we are not going to achieve our goals. To finish, I had to talk about Jeremy Hunt and the second transplant debacle. I thought I was doing okay, I was getting through my points, little bit angry but I could see that they were agreeing, they were with me, when I asked what gives Jeremy Hunt the right to decide who gets to live, and I was suddenly on the verge of tears. Henny jumped up to make sure I was okay, and I found myself on the receiving end of rapturous applause, with some people even standing up. That was pretty cool. I had to end it then, by saying that we must change this, then I climbed down and wafted my face until the tears went back in. I didn’t get to tell them how much it means to me, to be able to work with them. Campaigning on one’s own can get a bit lonely and feel quite ineffectual, but having their backing makes me feel like I can actually change things. Like I didn’t go through all this for nothing.

Every department had made a video of presentation about what they’d done this year, and they were all really good! Really creative; one used the office dog in a silent movie style, and another was based on Pokémon like the viewer/player was battling a blood cancer. So clever!

After the last one, that was the end, and I had a rather large queue of people wanting to thank me for speaking, or to tell me that I was inspiring, or that I had them and those around them in floods of tears. I mean, that was not my intention, but I am glad what I said made an impact. Everyone was then heading off to Hampstead Heath for the annual staff summer picnic, some on the train, some in a minibus, quite a few walked, and Anneliese, Ian and I got a Hailo. We got there in good time, before the rush, so we queued up with Jess who I met on Tuesday, and we immediately bonded over hatred of prednisolone. The picnic/buffet was great – loads of sandwiches, sausage rolls, salad-y stuff, fruit, crisps, sweet things, much variety! Plus various types of booze and soft drink but I thought I should stick with my water. 

We just ate on the grass and talked, people milling around, we were even visited by a baby (with her mother who everybody obviously knew). I was having such fun, and I wish I could have stayed longer, but at half past two I needed to get on my way back to Euston. I would’ve got a later train but the prices get stupid and yes I get reimbursed but I’m not going to take the piss. Anneliese and Jess walked with me back to my chair and made sure I got in the cab okay, but not before another person thanked me, and said I was an example, which was really sweet. I have done so much smiling. 

The taxi driver back to Euston brought me back down to Earth by immediately starting a conversation about Nice. There was a worrying moment when I thought he might live up to the “offensive cabbie” stereotype, but he was actually very sensible, thankfully. 

Back at the station, I bought a smoothie and a Milky Bar, then went straight to my train. The journey back was less fun, no new PokéPals. Both parents were at the station to meet me, and home we went. Happy. Exhausted. 

The 16th of July. 

I really need to write what will be three blog posts by the time I’ve finished this. I’ve just had no time. Tomorrow afternoon I can. I have things to do in the morning. A lady and her daughter are coming to look at the kittens (they haven’t decided which one) at half ten and I don’t know how long they’ll be here. 

This morning I finished writing about yesterday, then read the paper. I needed a break from writing; that feels like all I have been doing lately. I also went to see what the kittens were getting up to – last night we sort of forgot to shut one of the cage doors properly, so they had been out all night. Surprisingly, everything was fine, so for an experiment, we have left them out today. It has meant that when I’ve been in, they’re tired from playing so let me stroke them and Nova, the tortoiseshell who was very hissy, even came up to my face and sniffed my nose. Progress!

After lunch, Daddy and I went to see Ghostbusters. It is fabulous. I haven’t even seen the original so I made no comparisons, but knew enough to appreciate the cameos. Kate McKinnon absolutely stole the show for me, I loved her. I did also enjoy Chris Hemsworth’s dance moves. 

Now I have just iced some cupcakes to take to a garden party tomorrow because I apparently live in a novel, and I’m going to feed the kittens again before we have our dinner.