Archives For september

The 30th of September. 

I had a lovely morning and a horrible afternoon. 

Another okay night, woken up by my alarm. I managed to get a lot of my morning coughs out of the way, then my favourite homeboy, Dan Alani came round! I took him in to the kitty room, where he greatly enjoyed meeting two new little mates. It is a novelty that does not wear off. 

We had a really nice hour and a half, catching up on each other’s lives. He is doing so well; I am very proud. We’re growing up! Where did the years go? Yet we can fall back into old habits like no time has passed at all. He gives the best hugs. 

He left to go to Aston Villa with Warren, and I had lunch. The cinnamon bun I bought yesterday was very disappointing – not much cinnamon and there were cranberries? Not okay. So I ate the blondie instead. 

Since then, the coughing has been non-stop. I feel wretched. I am so sweaty from the constant effort. And it is this that has lead me to the decision that I can’t go to Harry Potter tomorrow. I will ruin the day for everyone concerned, the day will be too long, and I will just make myself more ill. What’s worst is that it is my own fault for doing too much. My body is able to ruin anything. The lesson here: don’t make plans. 

The 1st of October. 

Ugh. I feel grim. I don’t know what time I fell asleep, but I woke up at half past ten when Mommy came in because I had slept through my alarm. Whoops. 

It has been made evident by the amount of tissues in the bin that staying at home was the correct decision. I did not know it was possible for the human body to produce this much phlegm. I’ve been able to spend most of my day in just a t-shirt because the amount of coughing I’ve done has kept me so warm. Sweating away. 

I’ve actually injured my left shoulder this afternoon while I was hurling my body forward. Oh, god. I at least managed to finish Chloe’s seal, so I can get that sent off to her as soon as I find an appropriate way to package him. 

Right, I think I’m going to curl up on the floor. Sometimes that helps. 

hipstamaticphoto-528470169.767815

hipstamaticphoto-528470222.911788

The 28th of September. 

Nobody has more phlegm than me. My throat seems okay now, not really needing the Strepsils. I just cough a lot, and it is my signature cough that I have to do continously until the junk moves. Sometimes it takes a while, and I get a bit lightheaded. The ribs are coping today, I am just really tired. Praying it calms down by Sunday. 

This morning, I woke up early, and did a blog post, and coughed. Just coughed, up until about half eleven, when I finally seemed to get some rest, so then I got Simon’s hat out and started work on that again. 

After lunch, a couple came to view the kittens. I don’t think we’d been in the room even five minutes when Amanda said she was smitten. Not surprising – Harvey just wants to be pals with everyone immediately and Hugo is gorgeous, if less forthcoming. He became a bit more interested once we started playing and they were able to see what he’s like when he’s relaxed. 

They stayed about an hour, and left definitely wanting them. They can’t pick them up until next weekend but that’s fine because it means I get another week of petting. 

The rest of my afternoon was spent finishing Simon. I’ve still got Heinz the Stag to do, but I must do Chloe’s seal first. 

The 29th of September. 

I have a headache, I suspect from lack of oxygen during all the coughing – I checked my sats while I was having a fit and they went down to 92, and my heart rate went up to 140. It’s not great. 

I had a more reasonable sleep – my alarm actually woke me up today which is the first time in a while. We’ll see if that happens again or if it was a fluke. 

This morning, once I’d got through all the morning phlegm, I started crocheting Chloe’s seal. So far, he has a face. It’s going well. 

After lunch, Mommy and I went into town for toy stuffing, returning of Zara jumpers, and to purchase some baked goods from this place called Medicine Bakery which is only open on Fridays and Saturdays. Sadie went when she was home the other week and she approved. I bought a Nutella and s’mores kruffin, plus a cinnamon bun and a blondie. 

OH GOD SO PHLEGMY. 

img_0076

img_0075

hipstamaticphoto-528392006.124904

The 26th of September. 

Ughhh. So much phlegm. Bad night, full of coughing, sneezing, bleugh. This morning I wrote up a blog post, then it was time to try on more jumpers. Yes, more jumpers. I don’t know when this saga with my arm will end and Zara have an abundance of large-sleeved clothing so I’m taking advantage. I do at least know that I will be getting a better compression garment on Monday – Jemma from St. Giles rang and said she’d spoken to Andrew, who says it’s fine to have one, so maybe one that fits properly will actually help?

This afternoon, I’ve been crocheting the first of my little wintery chaps, Woody the Pine Cone. He is adorable, but he still needs some arms. 

It seems Christine is poorly too. She is also on the Strepsils and doing all the coughs. Hopefully she is tolerating it better than I am. Stupid germs! I’m pretty sure it’s just a virus, not bacterial, as the phlegm that’s come up hasn’t been green and it can’t be the pneumonia again because then the phlegm was too viscous to move. 

I miss Dean a lot today. I keep expecting to see his name pop up on my phone screen, thinking of things I want to tell him. Maybe it’s finally hitting me. 

The 27th of September. 

Another bad sleep, but I’ll just have to expect that while I’m ill. My throat was less sore, but that’s probably because I was awake in the night and had Strepsils. 

I think my nose is less runny today, but the coughing is much worse and more painful because all my ribs and muscles ache. Christine went home at lunchtime today so she is obviously not feeling great either. 

More crochet and TiVo. I finished Woody and started on Simon the Snowman, who currently looks like a tooth. The wool I had ordered to make Chloe’s seal came today so I can do that next. Can’t believe I had run out of light grey. 

I had a break from the crochet when we went to collect the kitties from the very after their neutering, chipping and vaccinations. Henrietta is sulking but the kittens are fine. We’ve got a couple coming to see them tomorrow and there’s no way they won’t fall in love with them so I’ll probably have to say goodbye soon. 

The 24th of September. 

Poorly. I had a massive sleep, aided by Zopiclone, which was good, but I’m not well. My sinuses are full of crap on my left side – my head is so heavy. Most of my day, I have sat and crocheted. I need to write up a bunch of blog posts but I have just not got the energy. Sunday Brunch, porridge, coffee. Curled up in leggings and another enormous jumper. 

Grandma came for lunch, and we had my favourite, venison. But then I spent a couple of hours upstairs on my bed, resting my back, trying not to feel like shit. I didn’t fall asleep, like I have been known to when ill. Oh, I just want to go to bed. Stay in bed. I’m so glad this week is empty. I need to regain energy for Sunday. Harry Potter!

The 25th of September. 

Bleugh. Definitely poorly. I woke up with a sore throat again, and my head is full of cold. I think I might have what Daddy had the other week – streaming nose, going through tissues by the dozen, feeling like garbage. 

I spent my morning putting together all the blog posts I have missed since the start of my busy week. The house phone rang while I was working, and Mommy was out, stocking up on decongestants etc for me, so I thought I’d better answer. Luckily for me, it was Christine, calling to update us on her chiro appointment for her dodgy wrist, and I had a little sneezing fit at her down the phone. 

When Mommy returned, she has also got some chicken and vegetable soup for me, so I had that with my Fudgepacker brownie for lunch, which did make me feel slightly better. 

Rest of the day, I have been sat in front of the TiVo box, finishing off one crochet project and starting another, some little wintery dudes. 

Rellik is on tonight so I can’t go to bed early again. I’ll try to lie in in the morning but if my throat is as sore as it was today, that will be tough. 

The 22nd of September. 

Hallo darling, 

It has been three weeks now, since you left us. I am recovering from my most hectic few days in a long time, which culminated in saying goodbye to you. It was a lengthy drive, and you would have told me not to come, that you didn’t warrant that kind of effort. You never could fathom how much you were loved. But I had to be there. I couldn’t let the last time I saw you be the last time we were together. 

This was never a place we were supposed to be. Everyone knows I’ve been to a lot of funerals. However, they are not the funerals of friends. I have said goodbye to many people, but they have most often been children, which is not to say I didn’t love them and was not devastated, but I did not connect with them the way I did with you. I am not only grieving over losing you, but all the years I saw ahead with you too. We have not just had a friend ripped away, but a lifetime. We were supposed to drink coffee and eat cinnamon buns together. I wanted you to see the end of the saga of my swollen arm. I wanted to see you with the hair I know you were so desperate to grow back.

Adam said it most succinctly, with his string of expletives during his speech. Fuck cancer. There is a part of me that has to slightly contradict him though. It’s the worst, most selfish part of me, but I think you would understand. It’s saying thank you, cancer. I wish to infinity and back that it had ended differently, but if I hadn’t been ill ten years ago, there might not have been any reason for us to develop the bond we did. I know that we shared things that you could not speak to anyone else about, and I hope you were able to find comfort in me. 

You were, quite honestly, one of the best people I have ever known. I have no other way to put it. Only someone quite so phenomenal could inspire the love that has poured out since your departure, and it was an honour to call myself your friend. I am so proud of everything you achieved, and what will be done in your name. Only you could have appeared in such flamboyant form, a rainbow on a clear day. Thank you for being here. For all of it. I love you. 

The 23rd of September. 

Oh god I am so tired. All I want is my bed. I had to be awake at seven to be at hospital for my nine o’clock eye appointment and finally the past week has caught up with me. 

I saw Carmel, the lovely nurse, and she checked my vision and my pressures, and I could read more letters than last time. Then Dr. Barry called me in, and checked out my eyes. He has changed some of the eye drops, and whipped out some of the lashes in my left lower lid. I made some comment about how there’s not much we can do about them, and he said actually there is! So I’m going to have electrolysis, which involves having local anaesthetic in the eyelid, then a hot probe put in the root and it kills the troublesome lashes. 

Back at home, we were just about to have lunch, when Jill from Black Sheep called, because Michaela’s half one client had cancelled or moved, so could I come in early? That was fine, so I ate my lunch (including my chocolate crodough, which was still good even after two days) and we went into Sutton. Just a bit of a chop, so I was only there about an hour, swapping baby photos and stories. 

Since getting back, I have just flooped. Had some hugs from the kittens, who have clearly missed me. Henrietta less so. I have tried stroking her with the roller a bit but she continually flinched and I felt bad so I stopped. Now bed please. When Strictly finishes I am off. 

1.jpg2.jpg

 

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.  

img_9752

hipstamaticphoto-527428597.485297

img_9778

img_9787