The 29th & 30th; Knackered, but elated.

The 29th of April.

Today has been so exhausting and so good.

I slept less well – super cold last night and no lung capacity to get more layers so I froze until I was too tired to care. This morning, I decided not to climb the stairs so as not to waste oxygen, so I just hung out in my bedroom until it was time for us to go out to see Tez Ilyas. He was great, as expected, i mean that’s going to be the case for every act I mention. I had to help him out at one point because the members of the audience he picked were not answering the question he asked correctly. Not paying enough attention!

He ran over slightly, so afterwards I literally just had time to grab a coffee before heading over to The Youth Wing to see Phil Wang. That was problematic, because the way I went meant I got stuck at a flight of stairs, but thankfully some very kind strangers offered to carry my chair down the steps (without me in it) and then I was back on my way. I got in and parked on the end of a row, and ended up with various members of sketch groups Pappy’s and Daphne to my right, with Tom Parry sprawled across the floor, snorting with laughter. For a work in progress, it was pretty slick, and I’ll be keeping a lookout for the finished product on tour.

I had Lolly Adefope straight after in The Canteen, so I left The Youth Wing the way I should have gone in, so I could get myself some more coffee before making my way back round to the other side of the school. On the way, I bumped into one of the women I hung out with last night, and she was going to Lolly too.

Coffee in hand, I drove down to The Canteen to join the queue. Being in the chair, I got moved to the front, which turned out to be a blessing and a curse. She was due to start at 4, but there were technical issues – there were cables that were needed and I watched people running back and forth trying to get hold of the right ones. This went on for just over an hour, and every time somebody came back, the hearts of the queue lifted, only to fall again when the doors didn’t open. I felt really bad for the guy who was checking the tickets – he knew nothing more than we did, and there wasn’t really anything he could do, I could hear people behind me getting (understandably) frustrated because this was going to impact upon their attendance of their next show, so they were having to decide who they wanted to see more. I was okay to wait, because my next show wasn’t until 7.15, and I was glad I did.

Her show is a reply to her reviews from her last show at the Fringe, in which she was criticised for not referring to her race enough and for talking about it too much. It would be like me doing a show and discussing or not discussing my disability. I have to applaud her too for her excellent singing, and for dealing with groups of people leaving towards the end of the show. Super impressed.

It ended just before six, and I was starving, having only had coffee since my crumpet at breakfast time. I got myself a smoky sausage in a bun (relatively easy to eat and no danger of spice) and ate it while watching all the fun dogs around. I even met a famous dog, Rosie, who is regularly heard on Rhod Gilbert’s Saturday morning show. She is a very good dog.

My next show, The Griefcast with Cariad Lloyd, was up stairs, but when checking the venues yesterday I’d been informed that there was a lift I could use. Today there was a worry because they had put an Out of Order sign on the door, but that was just to put able-bodied people off using it. Sneaky.

It was a small room and VERY HOT. Lots of people crammed in. The guests were Phil Wang, Kiri Pr’chard-McLean and Nish. Usually, the show is Cariad interviewing a comedian about a particular death, but today the topic was just death in general. In an amusing fashion. The last topic was “last words”, and Cariad asked them all what theirs would be. Phil missed a trick with his answer, and Cariad asked if there were any questions. I put my hand up and Nish pointed me out. I could have asked something poignant, but I had to say that surely, Phil’s last words should be “Wang out.” I saw the pun and had to say it. I don’t know if it’ll be on the podcast but I hope so. The only time I think my brain has worked that fast.

My next show wasn’t until 11.30 and also included Nish in the line up, so he met me back downstairs and the rest of the evening is a blur of faces and saying “Nice to meet you.” I did mean it each time, I just met a lot of people! We went to the bar in Y Plas where pretty much every comic at the show was.

Honestly I couldn’t tell you what we talked about, I just remember that for once, I wasn’t telling the story of my life ten thousand times, people just treated me like I as part of the gang and that pretty much never happens with people who don’t know me. It was just the most fun.

My oxygen ran out in the middle of Beat This, so I had to text Mommy and get her and Daddy to come and swap it over for a new one. I thought that might be enough to tide me over, but thinking about getting the taxi back on my own, having to deal with the chair, I just knew that it was going to be horrific. I cancelled the car, and sneaked out the side door. Knackered, but elated.

The 30th of April.

Going home early. It’s fine, we just don’t have enough oxygen for me to do another night.

We had to get into Mach earlier today, because there was a massive cycling race that started in the town and was going to close the road that we use to come in on. We got in at about eleven, and I sat in the car while Mommy and Daddy went to get coffee and some sort of breakfast pastries. I ate my co-op cinnamon swirl, then set off to Y Tabernacl for Pappy’s Flatshare Slamdown. Matthew and Ben said hi on their way in, and when the queue started to move, I went over to the lift to go up half a floor so I could enter the hall. There was a step down to the pews, so I just parked my chair at the best vantage point. Josh was a guest, and he saw me so he came over. Kiri was meant to be on the show but had yet to arrive, so other comedians were being texted en masse. Who turned up but ol’ Nishy Kumar? Kiri appeared shortly after, so we just got an extra person’s-worth of funny for free. I had a joyous time, particularly enjoying the quickfire round jingle that Tom and Ben recorded with Nish and Josie last night at Y Plas when Josie was full of Pinot Noir. I can’t wait to hear it when it goes out.

They ran over, as one has to expect, so then I had to bomb it down a rather steep hill to The Mach Arena for Josh and Friends. The wheelchair view in there was less good, but enough that I could just about see. We had stand-up from Josh, Matthew Crosby, Nish and James Acaster, then he read out some classic scrapes from his book which are all hysterical.

Upon coming out, I bumped into Amy, and we talked while Mommy and Daddy went to get food. I informed her of the racist attack Nish had just endured (Josh threw a massive ball at him but he was not injured), then they went to get lunch and we went to eat ours. We discussed oxygen levels, and we only had one full bottle left, so came to the conclusion that I only really had one more show left in me. Mommy and Daddy went back to the house to pack up, and I went to get more coffee and see who I could see before it was time for Sara Pascoe.

Happily, a lot of my lovely pals were still around, so there was Nish, Josh, Fin, Tom, a whole host of people. We whiled away the time together until everyone had to beetle off to our respective shows, and I left loving my wonderful gang.

Sara was fantastic as always, and I look forward to seeing the finished piece when she takes it on tour. I didn’t have time to hang around to see her afterwards because Daddy was coming to pick me up. We returned to the house, packed everything into the car, and we set off on the long drive home. I am so happy and I’ve had such an incredible weekend – definitely going again next year. Hopefully without any extra oxygen.

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 29th, 30th & 31st; Be kind to one another and yourselves.

2015 has been pretty fucking fantastic, overall. The beginning and past few days have not been ideal, but other than that, so many great memories! The crazy Valentine’s Day, when Josie, Josh, Joe, Tom, Romesh and Mat all came to visit, coming off steroids, Lyme Regis, the Comedy Gala with Aisling, Katherine, Sara etc, meeting Dawn O’Porter by chance, going to see Heidi, The Hand and Flowers and meeting Tom Kerridge, getting my electric wheelchair, going to The News Quiz and meeting Sandi, hanging out with Elle, Ben and Luna, Hallfield Day with Thor the raccoon, Padstow, Becky and James’ wedding, meeting Yaser Martini at Tom’s Kitchen, getting kittens, visiting Naomi and seeing Curious Incident, Duck and Waffle, my autumn of comedy and hanging out with Suzi, Josh, Joe and Nish, Death Cab, Christmas, now here we are!

I couldn’t be more grateful for such a wonderful twelve months and I am indebted to all those who made it possible. 2016 is going to have to be really incredibly astounding to beat it but let’s give it a go! I hope it’s just as good to all of you. Be kind to one another and yourselves.

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The 14th & 15th; Best weekend ever?

The 14th of February. 

Happy Valentine’s Day!

Well I’ve had a pretty great day. We went round the corner to meet Jodie and co at twelve at Costa and it was a little bit mad. So much stuff! The Costa people gave us free beverages and a card which was very sweet. 

There were many photographs taken which is always super awkward, and my face ached a little bit but then we were able to chat and I opened all the cards. There were about eighty! Our living room is full. Lots of people sent jewellery including a lady’s wedding jewellery which involved a tiara! Fabulous. I also have bundles of chocolate and candy and teddies. 

Yeah I’m just a bit overwhelmed. It took six of us to get it all home, and now after getting it all out and taking photos, I’m a little exhausted. I am looking forward to bedtime and a big sleep. 

I watched Tangled and ended up nearly in tears when they were singing on the lake. As much as today has been about being loved by my family, friends and complete strangers, none of them are my significant other. It’s the loss of that moment when you’re in the early stages of seeing someone and you think “somebody likes me, and I like them, and we’re happy and this could be something really great”. Knowing that I’m not going to have that again… I feel like I’ve come to terms with it, but it still doesn’t stop it hurting sometimes. But it’s only sometimes. 

The 15th of February. 

Best weekend ever? Certainly hard to beat. 

I knew Josie Long and Tom Allen were coming round about half one, so I thought I’d better have my hair washed and be presentable. I finished off yesterday’s Guardian, and got intrigued by a cheese called stichelton which I have never heard of but I want it. 

They were a little but late because of trains, but they arrived and we were just sorting out their coats and beverages when the doorbell rang! Who was it? Olly Joely Lycett and Josh Widdicombe! Josie had secretly invited them. Katherine Ryan was supposed to come but couldn’t, so she sent a note with Joe and will come another time for tea, and Romesh Ranganathan will be coming at some point too!

So I had four of my favourite comedians in my lounge and was just about holding it all together. It was suggested we discuss how this mini gig was going to work, so we all went into the living room because we’d thought it’d work well in that space. Then for a while we were stood around the dining table, drinking tea and just talking about stuff – Joe and Daddy were having a chat about the garden and football, Josh, Tom and I were discussing Bake Off, Mommy and Josie were talking about theatres. It just felt really normal. Then we moved the dining room table into the kitchen and rearranged the chairs, and set up a little gig! Josie compered, and did her own little set before pulling people’s names out of her pocket. Next was Joe,then Tom and Josh. Everyone was so funny and it wasn’t at all awkward like I feared, although that was probably helped by the extra people. I don’t know what else to say about it because it was so special and I want it to be just mine. After the gig, we decamped to the living room and I was showing Josie and Joe some delightful medical photos, then I preached a little bit about giving blood and stem cells which everyone is now very much on board with!

Then they all had to leave. I didn’t want it to be over, there was still so much to say. I don’t think it will be the last I see of them – I hope not, because they are all as lovely as I had imagined. We just had time to have dinner before we went out to Josie and Tom’s gig at The Electric. Alison from the Birmingham Mail was there with her sister so we said hi before finding our seats, which left me massively out of breath. I hope the venoplasty helps with that because breathing is still really stupidly difficult. 

The gig was obviously excellent and we had a wonderful time, and tonight I’m going to have to have a Zopiclone or my brain will not let me sleep. I’m so happy.