Archives For sadie

The 30th of July.

I’ve had really quite a shit day. My arm has decreased in size which is obviously good, but it means I need to be remeasured for a new sleeve because the current one is almost baggy. I spent all morning trying to ring the people who book the appointments for Julie at The Spire and left a message, but no one answered or got back to me. I rang the main number who bounced me from pillar to post before putting me through to the number that no one was picking up. It was only at lunch time when I tried the main number again (after another no answer) and voiced my frustration did I get to speak to someone. They said they’d been there all morning which just tells me they couldn’t be arsed to talk to me or any patient that called. I finally got an appointment for next week. Hopefully I’m not adversely affected.

Another reason for the shitness of the day was that I put up a post this morning about how I feel about having been in remission for ten years, which I’ve been working on for weeks and was really hard, but the overwhelming lack of reaction makes me feel like very few people really give a fuck. I have had a couple of comments but really I don’t know why I bothered.

Finally, I got a letter from the pain nurse who I talked to on the phone six weeks ago. Turns out the reason I’ve heard nothing is because she only just wrote to Dr. Blaney. Great.

Happy 10th Marrowversary. Again.

The 31st of July.

I feel better today. I got some responses which cheered me up and made me think a bit differently. Plus I went out and had a nice time which perked me up.

Didn’t have time to do much this morning belt going out to meet Sadie at 12. Daddy dropped me off, then went to work to pack up some more of his stuff. I got a text as I was going up in the lift, and it was Sadie telling me that the place we were going to eat wasn’t open yet. Boo. We had a look at what was available instead and settled on Giraffe. Sadie had some spicy rice thing, and I ordered tapas of bao buns, patatas bravas and chorizo. The chorizo ended up being too hot for me so Sadie ate that, but my buns were delicious and the potatoes were fine. Then we shared some churros. Yum. Talked about Love Island, her current/future job, our shared desire to and see The Meg, and stupid people in our lives.

When we finished, she was going the other way to me, so we said goodbye, then I went to Foyles to browse and ended up buying Hunger by Roxane Gay. I then texted Daddy come and pick me up, but traffic meant it took him 25 minutes to get about a mile. Bleah.

Since getting home, I’ve watched the most recent Sharp Objects and the pilot episode of House while crocheting the dress.

I nearly got Dolly on the chair with me last night! Two paws up, thought about it, but no. Soon!

The 25th of April.

My back was a bit sad this morning but I can’t take that to mean anything yet. I’m going to give it a week, then make a decision.

I had to be up early because I had an appointment at the GP at ten to discuss my prescription. The hospital decided they should probably take over my regular drugs and because there are so many, it seemed to make sense to make an appointment to go in and go through it with them because enough mistakes have been made with them in the past for me to be wary. It turned out that some of my concern should have laid with Sridhar who wrote the letter to the GP because he got several of the drugs/doses wrong which is not helpful. Thankfully Dr. Bagchi is very sensible and knows to believe us about what we need vs. what might be written. Now we have all that planned, it should be fine when I next need to get some drugs. She called me “motivational”. That’s me, Little Miss Motivator.

This afternoon, we caught up on some of the tv missed last night, and then Mommy went to Grandma’s while I sat and crocheted my jumper sleeve while watching iZombie and Buffy. Tonight I am out again, this time for the My Dad Wrote A Porno Live show with Sadie! We are very excited. I’m having dinner with Mommy and Daddy first because they’re going to go to the cinema to see the Potato Peel Pie film, which is fine with me as I have no interest in that.

The 26th of April.

Oh, I fell straight to sleep last night. Porno Live was excellent, hilarious and harrowing, and I had just enough wine to not dream, but not so much that I felt the effect this morning. Perfect amount of wine.

Spent the morning in my pyjamas, finishing up the second sleeve of my jumper, then I went to get dressed for the gym, putting on one of the four pairs of leggings Sadie bestowed upon me last night.

I did more in the gym today than on Tuesday. Not everything I usually do downstairs, because there were people in the way of the equipment, but got along happily with everything upstairs because there it was almost eerily quiet. I stared at a girl for a bit too long because she was so strong and I wanted to be her. There was also an old man and I didn’t particularly want to be him but he was carrying a sweater that looked ever so soft that I kind of wanted to wear.

Back at home, I’ve watched some Buffy and Scandal, and I’m going to start assembling my jumper.

The 14th of September.

Much less productive day. Big sleep, slow morning involving pain au chocolat and writing up a blog post. Mommy was out all morning at Grandma’s for a residents and relatives meeting, so I had only the kittens to chat to. Hugo is now expecting treats from me which is excellent – now I just have to get him to interact with me without the need for reward. 

She came home just before lunchtime, and we had food while watching TOWIE, quite transfixed by Georgia’s underboob. 

This afternoon, I had a hairwash, then sat at my computer for a couple of hours. I was talking to someone about The Sims 4 yesterday and got the urge to play, reminding me just how easy it would be to forget about the world and get lost in a game. Ignore all the shit going on in the world and concentrate on the little people I can control. Nothing horrific in there. 

I did make myself leave it at half past three, and came back downstairs where I finished the scarf I’ve been making, planning what I’ll do next. 

The 15th of September. 

Bleah I feel rather tired and shit this evening. Maybe I’m just weary at the garbage of the world. More terrorism today, more people (Trump) wading in with their takes before we know anything. 

Most of my day has been spent crocheting another scarf, this as a Christmas present for someone. I got on to my third ball of wool, by which time, the repetition had started to get to me. 

Sadie and I were texting for a lot of the day. In a funny coincidence, her new housemate is a comedian I’ve seen at The Glee, Mark Simmons. He was supporting Seann Walsh. I would accuse her of trying to infiltrate my comedy gang, but to be fair, he isn’t in it. 

Ugh I just want to go to bed but it is not time yet. I hope I feel better next week because Wednesday to Saturday are really busy. All stuff I want/need to do, but I am going to be knackered at the end. 

The 21st of August. 

This summer has been such garbage. Last night I had to have my blanket on top of my duvet because it was so cold. I am wearing a polo neck jumper in the middle of August. Ridiculous. 

This morning I did a blog post which took forever to upload – I think I need to look at the app I use because I’m fairly certain that’s to blame. Spent a lot of time sitting with the kittens – still no joy from Hugo or Henrietta, they don’t want to talk to me. I think Hugo does want to explore, he’s just super timid about even leaving the cage. 

After lunch, I went to the QE to see Dean. When I arrived, a doctor was in with him, but Orlando was hanging around the nurses’ station so we went to the kitchen for a catch up. He was fascinated by my wheelchair, and I made him feel old because I told him about the decade anniversary. Dean wasn’t good – it is really hard to get his pain under control and until they do, he can’t have any chemo (if that’s what he decides he wants) or go home. He was making the small pain noise that I have made myself many a time. It’s involuntary and it means it’s really bad. I wish I could make it easier. I can’t bear to think of him like this. 

The 22nd of August. 

It would be so nice to wake up and not hear Donald Trump’s voice on the Today programme. It’s such a crappy way to start a day. Ugh. 

Morning was breakfast, bit of kitten petting and putting some crocheted goodies in the post for Peter and Sophie. We went out at half eleven because I was meeting Sadie for lunch at the Cereal Killer Café at twelve. Incredibly, she actually arrived before me. That never happens. It took us a long time to decide on what we wanted, despite us both having looked at the menu a lot online before going. I eventually went for the Chocopottomus, which is Coco Pops, Krave, and a Kinder Happy Hippo with chocolate milk, plus I had cinnamon bun cookie dough bites on top. Oh, the joys of being an adult. I am now hungry again so cereal for every meal is probably not a viable lifestyle choice. 

We had fun reviewing last night’s My Dad Wrote A Porno, her recent holiday, my new kittens and medical exploits. We also were very bemused by the twelve (ish) year old boy near us who looked like he’d been plucked from Saved by the Bell – white t-shirt tucked into some very dad jeans that were belted. He could only have looked more 90’s if he’d had curtains. 

Since getting home, I’ve had to get changed because I can’t seem to dress appropriately for the weather. It’s too inconsistent!

The 20th of June. 

It has been slightly less hot today. It didn’t feel like it this morning – I had to get changed after going upstairs to put on minimal make up because I was so sweaty. It was very unpleasant. 

I was meeting Sadie for waffles at one, so Mommy dropped me off in the Bullring car park and I went up in the lift to Selfridges so I didn’t have to deal with any blinding sunlight. I was early, as always, so I got a table and waited for her while perusing the menu. We decided we would have just waffles, no room for milkshakes too. I went for the Seriously Cinnamon, but without all the whipped cream and stuff they normally put on top. Just cinnamon and syrup for me please. 

I got to hear all about the debacle of her stolen phone, her dealings with the book eater (Matthew Goodwin, her PhD supervisor), and she got to squeeze my fat fluidy arm. A fair trade. Still no venoplasty date, by the way. Once we’d eaten and paid (neither of us could finish our plates), we moved to Starbucks for cold beverages and comfier chairs. Amazingly, sofas became available just as we ordered our drinks! How fortuitous. While there, we saw two children riding around the toy section of Selfridges on these houses that move around like real ones. They’re incredible and I want one. 

Back home, I managed to get the kittens to play a little bit. They will play with me, as long as I don’t make any sudden movements. Sigh. 

The 21st of June. 

Today has been the hottest. And I had to go outside. Bleah. Oxygen clinic at ten, where we saw Ben, who was very happy to see me without tubing on my face and looking much brighter. He also wanted to know what was going on with my venoplasty/PICC, and when we told him that nothing has happened, he said he would email Andrew to try to speed things up. 

Had a slightly longer appointment with the oxygen nurse, just because I had to explain everything about the pneumonia and my stays in during the past six months. She stabbed me in the ear and my oxygen levels were a bit lower than last year but that is only to be expected and they weren’t terrible.

Went into town before going home, where I bought three books (Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge, The Power by Naomi Alderman and We Should All Be Feminists by Chimamanda Ngozi Adichie), an eyeliner and mascara from Boots, and a fan brush from The Body Shop. The lady who served me had to go and find one from the stock room, and came back with several which she put on the counter. I paid, and she brought my receipt and change round the counter to give to me, but not the brush. I assumed she had just forgotten to pick it up so asked for one and she thought she’d given it to me but I didn’t, so she handed it over. Then we went to Starbucks so I could get an espresso frappuccino. While I was waiting, I happened to look in my bag and saw a brush, which confused me because I was sure I’d put it in the Foyles bag with the books. I checked, and there was a brush in there too! I had no idea how the one in my handbag got there, so I got my drink and we went back to The Body Shop. I went up to the counter, where the lady was, and handed her the extra brush, apologising for my accidental thievery. She was very surprised me but congratulated me on my honesty. Sure I could have kept it, but what would I do with two? Seriously no clue what happened. 

This afternoon, I think I made some progress with Betsy and Brodie – we played games with my fingers. They don’t immediately run away from me now. 

I had an appointment with Trine at the chiro at half four, and it was much better than last time. No hospital bed makes such a difference!

The 5th of May.

More trips out today. Busy busy.

When I woke up, I was struggling, because the oxygen cylinder upstairs had run out. However, things have improved since then. It is always worst in the mornings and evenings. After breakfast, I watched the new episode of Riverdale, and (no spoilers) SO. MANY. REVELATIONS. Also I am sick to death of Veronica Lodge always bringing it back to her and her dad. Do not care, shut up.

I had an appointment at the GP at quarter past one to discuss pain relief. The buprenorphine is making absolutely zero difference to my pain, and she seemed quite surprised to hear this. The next step is to try pregablin instead, so I’ll start that tonight. Fingers crossed it doesn’t affect my breathing.

We came home for about an hour, then we were back out to the dental hospital, just for a check up. They were running late, so I got a lot of The Burial Hour read while we waited. I got called by a young dentist called Joseph who looked about twelve, but was very competent. He looked at my mouth to see if there were any signs of GvHD while another dentist scribed, then we just had to wait for their senior colleague to check I was fine. He was with another patient, and while we sat, we got onto the subject of Netflix, and the girl who’d been writing watches Pretty Little Liars and Riverdale too, and they both watched 13 Reasons Why, so we were in no rush for him to arrive.

Dr. Khan finally came, and thinks my mouth looks the best he’s ever seen it, so they don’t want me back for four months.

As soon as we left, I reopened my book as I was at a critical point, and now it is finished. Oh, Jeffery. Clever, clever Jeffery.

The 6th of May.

Do not like this new pain drug, pregablin. So far it is not making my back feel any better, it has just made me really sleepy all day. Not exactly tired, but my eyes just want to close. It’s not ideal. I’m going to continue with it for a few days, see if the sleepiness wears off and the pain gets any better. I’m not optimistic but I have to give it a chance.

My day has been a really rather dull one, for the most part – I have been sitting with the laptop, typing up the blog entries that I have got behind on posting. There were six to do I got three done. They’re still not posted because I need to add photos and I do that on my iPad. It is very boring but it must be done.

I had a couple of breaks in which I went to sit with Sam and we were both sleepy. He is such a good boy that if nobody wants to adopt him, I will beg Daddy to let us keep him. He won’t live that long, won’t cost us a huge amount of money.

This evening I went out with Sadie to see Joel Dommett. She is a bit in love with him and asked if I’d go so I agreed – although I’ve already seen his show, I was interested to see how he would make the show work, going from a 90 seat room to an 1800 seat one. When we arrived, I saw JT, and we had a little catch up, then he had a look at our tickets and asked if we wanted to go in the wheelchair space instead. Considering they were better seats and I didn’t have to move, I was only too keen to say yes.

The show has definitely improved since October, and I think it actually works better in the larger space. I’d completely forgotten about Laser Dick, but by the second chorus I was singing along again. And he’s changed the ending, which I won’t spoil, but it’s definitely more suitable for the bigger venues he’s doing. He’s not coasting on the fame he’s got from I’m A Celebrity; he’s worked really hard and it’s paying off.

The 16th of December.

It lifted, thank god. The wrapping day was not ruined. I woke up in time to say bye to Mommy and Daddy before they set off for Wales, then had my breakfast and wrote up a blog post. After fighting for a long time with the lock on the front door (I was being inept), I went round the corner to get some double sided tape and cotton wool pads (not for wrapping, I had just run out). 

After lunch, I set myself up at the dining table with my peppermint drinking fudge, The Polar Express, and all my wrapping paraphernalia. I spent the subsequent three hours indulging in festive spirit, and I have nearly finished, I just need to get some gift bags for a few things that even I am incapable of wrapping. Will pop into Paperchase after The Muppets tomorrow. 

Just after half four, I jumped in a taxi to go back to Black Sheep to have the toner cleansed our of my hair – washing did not give the desired effect. James was lovely and has fixed it, and I’m much happier now. 

I have just finished my dinner of a Domino’s personal pizza and two of four cookies, awaiting the arrival of my parents back home. They are mere moments away. 

The 17th of December. 

Today would have been 100% excellent if not for one (hopefully) minor inconvenience. But I will get to that. 

Woke up stupidly early for a Saturday, but for a good reason – Becky and I were going to watch The Muppets Christmas Carol at The Electric! She came to pick me up at quarter to nine, and off we went. We parked round the back of the cinema, then got some tea before taking our seats. I actually ordered a coffee, but it tasted awful so I went back and got a tea as well. The screening was not as busy as I expected, but some people still managed to be irritating by having brought their poorly-behaved, germ-riddled children. Not acceptable. Still, they could not ruin the magic for me. After all, it is the summer of the soul in December. 

Afterwards, we went to the Cereal Killer Café because I wanted to try one of their “cocktails”. I had a bowloccino, which is Nesquik, Coco Pops, a chocolate curl and espresso milk. So tasty! I would never go there for something like Special K, but combinations or ridiculous cereals, I am all for. 

Before coming home, we went into Paperchase so I could get some gift bags and more ribbon and tissue paper. Now I can finish my wrapping. 

Now to the inconvenience: I happened to push up my sleeves and thought “Ooh, my right arm looks a bit fat. Let’s give it a squish. Ooh, that’s a bit boggy for my liking. Actually, my right foot has felt puffier than usual for the past couple of days. And my breathing has been terrible of late.”

So I don’t know what’s going on, because I don’t have a line anymore, so that can’t be causing it, and it’s only one side, so I’m confused and unhappy. I have started diuretics to try to get rid of some of the fluid, but on Monday morning I might be ringing Gill Lowe to freak out. I don’t want to spend Christmas looking like the Stay Puft marshmallow man. 

This afternoon, Sadie came round! Mainly to see the kittens. She did not steal any (I checked). She was greatly amused by their interest in her feet. They love feet. We stayed with them until they fell asleep, then we watched the end of Mr. Magorium and ate the two remaining Domino’s cookies. 

She had to go about four to make sure her dad had done the pile of sorting she’d left him. Sometimes I wonder who the parent is in that relationship. 

Hoping to god my body deflates with peeing. Don’t make me have another venoplasty.