Archives For april

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 27th of April.

It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.

After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.

 We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.

Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.

We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.

The 28th of April.

I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.

We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.

We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.

I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows. 

I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.

Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.

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 23rd of April.

Oh god I have never been so excited about the fact that it is Monday tomorrow. Maybe my four month long saga of the fat right arm will be over soon.

Somehow I managed to press the snooze button this morning without my knowledge, but I didn’t continue to sleep for too much longer. I think I was slightly less coughy, but I had Zopiclone so it’s hard to remember. Thankfully the rest of the day has not been necessary to remember anyway.

Shockingly, it’s been mostly tv. Sunday Brunch in the am, Netflix this afternoon. I had a break in the middle for my traditional Gardeners’ Question Time and a lie down/pretend nap, but that was pretty much my only non-screen-based activity. On Netflix, I watched the first two episodes of 13 Reasons Why. I think I’ll download the next several to watch while I’m having to lie flat in ambulatory care tomorrow.

The 24th of April.

So it is done. I am praying so hard that it has worked this time but honestly I’m expecting to be disappointed.

Mommy woke me up for toast at quarter to seven, and then I couldn’t go back to sleep. I managed to kill time until we had to leave by redoing some crochet that I’d done wrong, and we set off just after 10:30. Parking was a nightmare, but we drove round enough times to chance upon someone leaving. Before going to ambulatory care, we went up to 516 to give Jenny her bear. She was delighted and put him in her pocket. We couldn’t stay too long, so we had a brief chat, then we went back downstairs and she went to check patients’ blood sugars.

I checked in at the desk at ambulatory care, then had to wait until the afternoon patients were let in. While we twiddled our thumbs, we saw Vash, the mother of a girl I was treated with at BCH. Turned out she was in a cubicle in there with some mystery virus. She did not look well, poor thing.

I had a very nice nurse who liked my hair (actually nearly every person I met commented on it) and got admitted pretty quickly, then a nurse from angio came for me because I was the only one on their list this afternoon. When we got down there, I went through the theatre check list again, and Andrew came for a chat. He explained what he was going to do, and we talked a lot about gadolinium (the dye he has to use instead of the iodine-based contrast he normally would), because I have so much during these procedures, more than a patient who’s had a lot of MRIs, more than anyone he’s ever seen and there are no studies on how this much of it can affect a body so he has concerns about that. I am just tired, I want it fixed.

We went round to the suite we were going to use. I shuffled across onto the bed and there was a who, then Andrew went to scrub in and the nurses prepped me. Covered in iodine. Once everything was set up, Andrew ultrasounded the edge of my groin to find the vein, then one of the nurses came to distract me while he got stabby with the local anaesthetic. He tunnelled up as far as he could, then he put some local in my fat arm and drove a wire up the vein in there so the two nearly met, and he used them to measure the blood pressures in those vessels, and he did a run of contrast so he could see if any strictures were there. The one he blew up in January had returned, so he was going to have to inflate that again, but with a better balloon this time. Before doing that, he wanted to use the IVUS to make sure there weren’t any more, and to get some more information about my superior vena cava. I could see the screens today, so I can tell you that an ultrasound inside your veins looks like the title sequence of Doctor Who. Like going into a black hole. From this, he was able to glean that there isn’t any more narrowing, but it is scarred. Lines for seven years will do that to you.

Satisfied that I only needed the one inflation, he gave me some sedation (they are not comfortable experiences) and I had a tiny nap. Then all the tubes and wires got pulled out and I had to lie there while he pressed very hard on the puncture site to stop the bleeding.

In recovery, I had some water, then the nurses took me and my notes back to ambulatory care. Mommy was coming back in at the same time, so we both returned to my bedspace and I told her what had gone on. Andrew came round too, and we talked through what he’d seen. He also explained that there’s no point in strenting the vein he inflated because it’s surrounded by bones and fibrous tissue so would probably just get crushed. I have to keep wearing the sleeve and squeezing the stress ball, and hope that this time it’s had the desired effect. I’ll get an appointment for his clinic. Maybe I’ll be able to wear something that doesn’t drown me.

The 21st of April.

Got to get this cat on the website. I sat with him all afternoon, watching episodes three to six of Riverdale, and I found lots of scabs in his fur, bless him. He’s had a really hard time on the streets. Poor kitty.

This morning I was super coughy, and I checked my bloods from yesterday, which said that my CRP is 37. Nobody has phoned me to check that I’m alright, so I’m going to stay aware of how I feel, keep an eye on my sats. They’ve been good in the daytime, and I’ve got respiratory clinic next week. We’ll see what Dr. Thompson says.

I attempted to take some photos of Sam for the website, but he is not the most photogenic of cats. I’ll have to really sell the story and emphasise just how lovely he is. He sits on my lap, occasionally runs over to his food, then scampers back for more lap time. Honestly, if he weren’t so fluffy, i would want to keep him. I just keep inhaling his fur!

The 22nd of April.

This is going to be a short one; very little to report. This morning, I was super coughy and phlegmy again. My sats are mostly alright on air, and I feel alright when I’m not doing very much, but as soon as I take a few steps on my own, I’m in trouble. I don’t know. I have a bad feeling, but maybe I’m just being pessimistic. I hope so.

I came downstairs to find activity that meant a trip was afoot. Not for me. My parents. My 92 year old second cousin twice removed (paternal side) was going to be in Alvechurch to see her son, so Mommy and Daddy were going to go over there after lunch to meet her (for the first time ever).

My afternoon was spent in the company of Sam the floof and the cast of Riverdale, via the medium of television. I’ve now watched all ten available episodes and the next one won’t come out until next Friday. Considering we’re meant to find out who the murderer is at the end of episode thirteen, .I certainly still have no idea. Everyone is a suspect.

They eventually returned just after six, then Mommy went to Grandma’s, and now she’s taken some flowers over the road for Chris and Alison’s wedding anniversary. Tomorrow I will make her rest.

The 19th of April.

So the shaved kitty is not so shaved. Only a few bits had to be done, so we actually have a rather large, incredibly floofy cat who needs a lot of grooming but he is super friendly and seems to enjoy being brushed so I’m confident that won’t be a problem. Plus he’s got zero health problems which is a bonus so hopefully we can find someone who wants an older cat!

A much less news-heavy day. This morning I had a chiro appointment, so I got my back stretched out and a few bits crunched here and there. I was much better than last time, presumably because I haven’t been having to use quite so much oxygen, so my muscles are behaving a bit more normally.

When we got back, Christine and I watched the new episodes of iZombie and Pretty Little Liars, still batshit as ever. Will we get all the answers in the next ten weeks? We can but hope. By the time it finishes, the election will be over!

Christine had to leave to get her train home, but when she got to New Street, she discovered there were no trains to Euston! She was okay though, she was allowed to get a different train to Reading, then get another one home from there.

Shaki arrived just after six with Sam the floof. He is gorgeous and I can’t bear the thought of him sleeping under a pile of leaves. People are awful.

The 20th of April.

I am covered in floof. He is lovely but I need industrial-strength sticky tape to de-fluff.

This morning I was at the QE for pre-venoplasty bloods. That was easily done – I went to haematology clinic and they bled me very quickly, then we went across the link bridge to the “new” hospital. I’d taken in the bear I made for Jenny’s baby, but she wasn’t in. Cody was though, so we went to check if she’d be there on Monday (she will), and we saw the doctors on their round. They seemed happy to see me being well, and Ben complimented me on my boots. He obviously has good taste. Then we went to ambulatory care to check what time I need to turn up on Monday. However, they couldn’t find me on their list. This was a little alarming, so I rang Tracy. We don’t know why I’m not on their list, but I definitely have a bed, I just need to arrive at twelve and it should be fine.

Dean was coming up to go to Heartlands for a pre-op, and I’d said we’d give him and Adam a lift there. We weren’t far away and it was nice to see him with neither of us feeling ghastly.

We dropped them off, then came home for lunch. Mommy then went to Grandma’s, and I watched The Magicians before going to see Sam, and I gave him a very good groom while we watched the first two episodes of Riverdale. Oh how I miss the days when my only worries were boys and girls and homework.

The 17th of April.

Kitty is gone. He was very amenable about the whole thing – only the mum came to pick him up, so he didn’t get stressed and hide. We took the carrier in so he could investigate it while we filled in the paperwork in the living room. When the boring bit was over, I went to give Spike (now Tiger) a big hug and had to entice him into the carrier with treats and a gentle push. I have been told he came straight out when she got him home and went to sit on a dining room chair, under the table. Our next cat is going to be a sad kitty who has been very neglected and will have to be shaved because his fur is so matted. Bless.

This afternoon, I finished the bear I made yesterday and put together the monkey I’ve done for James. Back to doilies now? We’ll see.

I smashed open my Easter egg and ate some of that while watching Agents of S.H.I.E.L.D. It is really going to take forever to get through. And that is all!

The 18th of April.

I am not watching the news, mainly because I have been watching it pretty much constantly since Theresa May’s announcement this morning. After a fairly poor sleep, hearing that we are going to have to vote again was the last thing I was in the mood for.

Of course I want the Tories out – they are quite literally destroying everything that is good about this country. But I am really concerned that people won’t vote for Labour, the only credible chance of getting them out, because they “don’t like Jeremy Corbyn”. I just want to shake those people – the NHS is falling apart, schools are so drastically underfunded that they’re having to cut pretty much anything that isn’t nailed down while asking parents for contributions, social care barely exists, and Brexit is going to make all of it even worse. Let’s not forget the cuts to disability benefits, sanctions on people which only make their lives even more difficult, the lack of support for young people who inexplicably don’t deserve the same opportunities as those over 25, or the huge rise in need of food banks.

I don’t give a fuck if you don’t like Corbyn. Children are returning to school with signs of malnutrition. Voting for Labour is the only chance we have to change things. Grow up and do the right thing.