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The 23rd of November.

Much quieter day today.

This morning, I tried Dr. Blaney’s secretary, but she wasn’t there, and only works Monday to Thursday so I’ll have to try again next week. Sigh. Then we had an interesting time with a Zara delivery – I’d ordered a couple of dresses, and I got an email saying my Hermes delivery person had left my order in a safe place. I checked the porch but there was nothing there, and no card had been put through our letterbox.

I phoned Zara to see if they could talk to Hermes, but first we had to go through everything that had or hadn’t happened multiple times. Then he went into another system where it said my parcel was left in a blue bin, but there aren’t any in the vicinity of my house. Once the Zara chap was satisfied I didn’t have it, he emailed Hermes and will get back to me when they reply. However, it has since transpired that it was in a blue bin, just on a completely different road. It clearly wasn’t our usual Hermes man, and the substitute is a moron.

After lunch was crochet, no Riverdale because it’s Thanksgiving, so I started watching The Punisher instead. I think I need some back story; will do some Wikipedia research. And we’ve just been doing the kittens’ panacur again – they have remembered how much they hate it and my hands have suffered because of it.

Ed Gamble tonight!

The 24th of November.

I am very tired today. I wasn’t out too late at Ed Gamble, who was very good, but maybe my sleep quality wasn’t very good? Bleah.

So I actually started doing some Christmas shopping this morning. I looked at many of the Black Friday offers but there wasn’t anything that really jumped out at me. I did get some things that were cheaper than they might normally have been, but nothing ridiculous. It took me ages to find anything that I really want to give to anyone – there are lots of things to buy, but that doesn’t mean they’re good presents.

This afternoon, I was on the hunt for more wool for crocheted gifts because if I can’t find stuff to buy, I will make people things I think they will like. Once I’d got that sorted, I started on another snood, but had barely got going when Tom and Ann came to visit the kittens. It seems only reasonable as they can’t have them until Clarrie/Molly gains more weight. They didn’t stay very long, so then I got back to my snood, and Daddy came home with Christine!

Family fun time weekend!

The 20th of September. 

I am knackered and in such ferocious pain that I am walking around bent over at a right angle but I have had the bloody loveliest day. 

I got up at eight because my brain was too excited to sleep any longer, and that meant I had time to watch last night’s Bake Off before going out at eleven to catch my train to London.

The journey was largely uneventful, but I was kept amused by the man sitting diagonally opposite me who was greatly enjoying Game of Thrones on his laptop. Then, in a true miracle, a man appeared with the ramp within a couple of minutes of us arriving at Euston! I was really quite shocked. 

I got a cab from there straight to Paternoster Square, to see the Make Blood Cancer Visible installation. All the names of patients, with their particular type of blood cancer, age and story attached. I roamed around, looking for somebody with AML. It would have been nice to come across a young person, but the only two I found were 62 and 77. I couldn’t really relate. Still, I saw three chaps standing around with a camera and talking, so I went over to see if they were involved in the campaign. They weren’t, they were just interested in photographing it, so then I introduced myself and explained what it was all about. They told me I was very brave, and it was good to see me battling on. I am indeed a soldier. But on the subject of invisible diseases, one of the men mentioned that his wife has an inner ear balance condition, and I said “Oh, Meniere’s?” to which he was very surprised because he’s never met anyone who knew what it was before. She has had the steroid injections in the ear which Daddy is about to have and found them very helpful so that’s promising. 

I left them to carry on, and bought myself some lunch from Paul which I ate in the square while listening to a podcast. 

After that, I hadn’t got anything else planned for the rest of the afternoon and had plenty of time to kill, so I took myself to Konditor and Cook in The Gherkin for some Curly Wurly cake and my fourth coffee of the day. It wasn’t very far, and it was quite easy to navigate a path because I just had to go in the direction of the very tall buildings. Easy. I also bought two brownies because I can’t not, when presented with the opportunity. They are bloody delicious. 

About four o’clock, I decided it was time to go to the hotel, so I got another taxi over to The RE Shoreditch, where Mommy and I stayed when we went to watch Christine do her run in Victoria Park. 

I checked in, and the duty manager got called over because I am disabled. They asked if I wanted to switch to a room with an accessible bathroom but I explained that wasn’t necessary, as long as I could get in the room in my chair. Then I had to read a letter explaining what to do in a fire and sign a form to prove I had received it. All that was left was to pay and my heart beat so quickly as I waited for the machine to confirm my payment because Nationwide have a nasty habit of not allowing large purchases to go through because they are really over-zealous and it causes me no end of problems. Thankfully, it worked and I was hugely relieved. 

I spent the next couple of hours talking to Mommy on the phone, unpacking bits and pieces, and making sure everything was ready for when I returned, ready to crawl into bed. 

Amusical was to start at half seven and I wanted to give myself a bit of buffering time to eat something before going in, so when I arrived I ordered a bowl of chips and a glass of wine because that’s the kind of responsible adult I am. 

The only really wheelchair accessible space was right next to the stage/sound desk, so I had a great view, particularly of all Jayde’s incredible costume changes. They opened with Jayde and Kiri performing a heart-rending rendition of Come What May from Moulin Rouge, and Jayde can really bloody sing! Our first act was Brennan Reece, singing Waving Through A Window from Dear Evan Hansen, which I didn’t know but it was lovely and I am downloading it now. He was really good as well! Next, we had Tiff Stevenson singing Don’t Cry For Me Argentina from Evita, absolutely class. Short interval, during which I had a chat with the father of the musical director who was a big fan of my wheelchair. Next up was Alex Zane, who’d really committed by dressing up as Mary Poppins and singing Supercalifragilisticexpialidocious, including hat changes for the different characters. It was during his song that my hands began to hurt from clapping. Fourth was Evelyn Mok, singing Memory from Cats, in a leopard-print onesie and checking the lyrics on her phone. Another interval, and I was joined by Tiff and her boyfriend, so we got to catch up a bit before the final section. In that, we were given Spencer Jones singing Reviewing the Situation from Oliver, accompanied by the guy who’d been on the sound desk suddenly playing the violin brilliantly, and he was really excellent. And his encore song was going to be You Give A Little Love from Bugsy Malone, so he had to win. Finally, we had an enormous group singalong of Do You Hear The People Sing? from Les Mis and it was incredibly rousing. 

The bar didn’t close, so I stayed for a while, having chats, until it got to about midnight, and Kiri walked with me up to Oval Space so I could poke my head in at Dean’s night before going round the corner to my hotel. When I arrived, I just hoped Adam and Amy were still there, and thankfully Adam spotted me pretty quickly so I wasn’t alone for long. We had a nice talk, then Amy and Elliot came down and we had a singalong to some incredible tunes that were perfect for the night. We were all really tired by this point, and there was some dry ice or something that was affecting my lungs, so I left about quarter to one and was so glad my hotel was just minutes away. When I got out of my chair, I was pretty much bent double with pain and my eyes absolutely killed. So happy to be able to get into bed. 

The 21st of September. 

I had a fucking terrible night. The only good part was the pillows. I started trying to settle down to sleep about two, but I didn’t drop off. I got through two podcasts, I remember looking at my phone and it being half past four, I kept hearing people outside my room, and every time I moved, my back protested heavily. I got up at eight, doubled over in pain. It was no worse than being in bed. 

I got myself dressed and packed up, thankfully not much to put away, and was checked out by quarter past nine. 

Needed breakfast, and I wasn’t far from Rinkoff’s, so I had to get some pastries. I had an enormous cinnamon swirl (only appropriate after Dean’s event last night) and very hot coffee, which I got through while taking in my surroundings. My two favourite customers were the man who came in whose water had gone off so he filled up two enormous bottles and a jerry can, and a guy who wanted a sandwich with only green olives in it. Bizarre. 

To take away, I bought two crodoughs – one toffee apple crumble, one chocolate, plus three rainbow bagels and a mini challah. Then I got a cab to take me to the Wellcome Collection, where I was meeting Hannah, a fellow transplant patient for coffee. I got a flat white and some orange juice so I could take my tablets, then started writing a blog post while I waited for her to arrive. 

When she did, there wasn’t really any stopping us talking, we just had so much in common. There aren’t many transplant patients my age that I come across so it’s lovely when you can sit down with someone who can empathise with all the stupid problems you have. It was a shame we only had just over an hour, but next time we will have longer. 

I wanted to get some kind of green juice from Pret, because my diet had been terrible for the past couple of days, and when I went to pay, the very nice man serving said he’d get it for me, so it was free! Bless him. Then, at the assistance office, they sent me straight down to the platform, and I was on the train with plenty of time to spare. Phew. 

Mommy was there at New Street to pick me up, and I got changed into some jogging bottoms and fluffy socks in the back of the car. We had to collect Alison from school on the way home, and that was terrible because it was hometime, so the roads round there were really busy and all I just wanted to get into bed. 

When we eventually got home, it was about four, and I hadn’t eaten since my cinnamon swirl, so Mommy made me a boiled egg and soldiers and I curled up in my armchair. Finally I can rest. Until the next early start tomorrow. 

The 18th of September. 

Very busy morning. An apt start, considering the rest of my week. Start as one means to go on. 

Shaki was concerned about Henrietta after I’d told her about our lack of progress with her, so we took her to the vet. The only time they could offer was 11am, so I finished up my coffee, then we had the fun job of trying to get Henrietta into the carrier. Basically we chucked a lot of Dreamies in there and shut the door. She did not like it. 

At the vet, she came out and slunk around the floor, hiding under the table, behind the bin, behind a pile of boxes, hissing at Daniel. He eventually cornered her with a towel (like a matador), and gave her an injection of long-lasting antibiotics. She wasn’t going to allow anything else. She even did a couple of protest poos in the corner. She’s been in the dog cage since we got back, because Shaki wants to come and see her this evening. Hopefully the antibiotics will make her feel better, and she won’t be so angry all the time. 

This afternoon, I’ve been doing Cats Protection admin and watching Bones, while looking at my new crochet book that arrived today. It’s full of mix and match dolls so I can make people! Already got one commission. Better get some flesh-toned wool. 

The 19th of September. 

This morning was lymphoedema clinic. Mommy and I set off to Lichfield for ten, and when we arrived at St. Giles, there was a little bit of waiting around before I was called through. I met a nurse called Jemma, and I had to explain my history to her, paying particular attention to my past episodes of swelling and the timeline. We had a very long conversation, and because of the SVC narrowing, their protocol doesn’t allow them to fit me for another compression garment. She did measure me, in case they can give me one in the future, and it was interesting to learn that the right arm is 37% bigger than the left. So no treatment today – it really is all up to Andrew for now. 

We got home around lunchtime, so we ate, then Mommy went back or to Grandma’s. I went upstairs to sort out stuff to take to London tomorrow while I listened to the new episode of The Bugle. I think I have everything sorted. Just have to chuck it all in a bag tomorrow morning. 

Tonight I am out at The Glee seeing The Horne Section. My first of two consecutive nights out in a row. Getting ready to be exhausted.  

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The 4th of July. 

Kittens are gone! Well, three of them are gone. Hopefully Bree will cope alright because she still has her mum. Also hoping this makes her more amenable to being petted!

This morning, I filled in the paperwork for Betsy’s adoption, and realised that I didn’t have any more PetPlan forms for this afternoon. I also checked the PetPlan website to make sure Brodie’s heart murmur would be covered if it doesn’t fix itself and it will. Phew. 

Linda came to pick up Betsy just before twelve, and had a great carrier that could fold away. We filled in the last bits of the form, and we got Betsy in there pretty easily after I gave her a quick hug. I have had a video of her playing in her new home so it looks like she’ll be okay. 

Rosemary came for lunch, so I had a bit of a chat with her before food, but I was in with the kittens when she left. This afternoon, I have been doing the second lot of paperwork and doing a blog post. Plus a couple of episodes of Orphan Black. 

The family adopting the other two came at quarter to six, and I got the bouncy toys out so the kittens didn’t run away. Bailey got in the carrier without a fuss and I tricked Brodie into a cuddle before popping him in. Now they’re all gone, I just hope they settle in okay!

The 5th of July. 

It’s so quiet now. I don’t think we’ll hear any thumping into the wardrobe with just Betsy and Bree here. They both favour lounging around as an activity; Betty because she is so chill, and Bree because she is just lazy. They can be slightly forgiven for that today though, considering the heat and their level of floof. 

I think that most of my day has been spent in front of the tennis. So far, we are doing well! It’s bound to all go wrong at some point but I can cling on to it for now. I did take a break when I went to moisturise my legs (no one wants to see flaky skin) and I put on some music, had a little dance to George Michael. 

Had an early dinner of cheese on toast with sultanas (if you have not discovered this sweet and savoury combination, prepare to have your tastebuds blown) because I was out at The Glee tonight, seeing Fin and Kiri’s works in progress of their Edinburgh shows. I had no trouble with being let in this time, and went to have a chat with them both pre-show. It was nice to see them without oxygen attached to my face and being able to walk around a bit. 

Both shows were excellent; if you are able to see the finished products either in Edinburgh or on tour, you should. At the end, I managed to escape without assistance, and waited for Daddy outside the back door. Funny how much safer I feel in the summer in my chair than in the winter on my legs. Harder to abduct and murder. 

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 25th of April.

Everything hurts today. I am tender all over. My body did not like being invaded so I am being a delicate flower.

My day has been punctuated by half-hourly squeezing of a stress ball with my arm up in the air. It is the only thing I can do that might make my arm go down. I’m not convinced it is going to work but I am desperately hanging on to anything that may make a difference. If this doesn’t work, I don’t know what I will do.

This afternoon, I wrote about yesterday’s procedure, then I went to sit with Sam for a couple of hours. I watched Netflix, and he kneaded my lap which I tolerated until it hurt. Pointy claws of a heavy kitty on wound sites are not good.

I just feel very sad. Maybe tomorrow will be better. We’re off to Machynlleth on Thursday for the comedy festival there and I really don’t want to feel like shit. 

The 26th of April.

Measured my arm this morning. Still exactly the same. I am not expecting it to improve, but I’ll carry on with the compression and the squeezing for a few more days, then I’ll ring Andrew’s secretary and make sure my appointment is on the way because he’s going to have to come up with a new plan. I cannot go to John and Maddie’s wedding with one huge arm, even if it will be full of medics.

So this morning I was sad about my arm and had a bit of a cry before I came downstairs. Breakfast, then I wrote up the blog post about the venoplasty while I watched new Pretty Little Liars and iZombie. I did a lot of shouting at the latter because Peyton is being a moron.

After lunch, I sorted out what clothes I’m going to take to Mach and printed out all the tickets for the shows I’m going to, using up a small tree in the process. Then I went to give Sam some attention and a brush because we were taking him to Lee’s to stay with her while we’re away and I thought he ought to look nice.

I am sick to death of living in baggy clothes. A third of the year has passed and I haven’t felt good about my body for a single day.

The 30th of March. 

Fairly acceptable breathing today. I’m on 0.5 litres of oxygen. Normal air is not quite oxygenated enough for me. 

I at least had a better sleep, and this morning I got a blog post done and not much else. I had another appointment (which I had entirely forgotten about) at the Women’s at half past one, so we ate our lunches and got on our way. Thankfully no hellish traffic jams today, but there was nowhere to park so Mommy pulled over, I drove off in my chair with the oxygen on the back and she found somewhere to put the car. 

I was seeing Miss Byrom for a follow-up after the procedure I had in November, and Sue, the sexual health nurse, was there too. I said that I thought it had been successful, but only up to a point. She examined me, using a very small speculum and a very long swab, and it turns out part of me has sealed up again. JOY. It’s to do with a thing I have called lichen planus and it’s just another stupid thing that I have that has no cause. I have to carry on with the dilators, and she’s going to talk to a plastic surgeon about me to see if he has any ideas. 

Too many things wrong with me right now. I feel like a collection of conditions rather than a human woman. 

The 31st of March. 

Today was the most normal I have felt in a while. My sats were good enough for me to not need extra oxygen for most of the day. I’m on it now, but still, it’s been a good day. 

This morning, I didn’t fancy watching Eamonn and Ruth be unbearable, so I caught up on The Magicians and did some mindless crocheting. After this project, I really need to make something for nurse Jenny’s baby and for James. I also had issues with Vue and their stupid website trying to book tickets for Ghost in the Shell. 

It’s an odd sort of film. I kind of get the premise and I found it interesting, but I didn’t really see the point. Having done some research, I think it’s too large a story and world to cram into a 100 minute film. One thing I did like was the choice Scarlett Johansson made to lead her walk with her head. It was curious because the company in the film go to so much effort to make Major appear human, but her walk was so unwomanly. Hm. 

Tonight I am going out to The Glee to see Fin Taylor and Mat Ewins, but there is no way I am climbing the stairs, so I’m going in the chair and have arranged for someone to let me up in the lift. Then tomorrow I will feel terrible, I suspect.