Archives For February 2014

The 25th of February.

Another good sleep! Shhh.

Mommy accidentally gave me 2mg of pred this morning when it should’ve been one, but I should’ve noticed and not taken one of them. I’m annoyed at myself. It’s not the end of the world, but it’s another day of steroid that I desperately don’t want.

Daddy and I went to see Cuban Fury because I discovered that he is no fun and doesn’t want to see The Lego Movie! Going to have to find someone else to go with. Cuban Fury was good though; I enjoyed it. Particularly Simon Pegg’s cameo. I don’t like Chris O’Dowd playing a dickhead. It is wrong and upsets me.

This morning, Mommy and I ganache’d her checkerboard birthday cake. It’s huge! Insanely vast. We will have to have very tall, thin slices.

Got to wrap present and write card tonight before bed.

The 26th of February.

Happy Birthday to my Mommy! I woke up quite early so I went downstairs to give her her card and a little present – her proper present will be that I take her to London and buy her a Mulberry purse (or whatever she chooses) and we’ll go for a nice lunch somewhere.

We both felt the need for more icing on the cake so this morning we made a white chocolate ganache and waited for it to thicken which was taking a ridiculously long time, so we went upstairs to wash my hair.

Then we went to The Cock Inn at Wishaw for Mommy’s birthday lunch. I had an accidentally entirely vegetarian meal – asparagus with a poached egg and hollandaise sauce, then gnocchi with butternut squash, spinach and ricotta. It was all delicious, but tomorrow I think I will eat a lot of meat and veg and not so many carbs (I rather over-indulged in bread too).

When we came back, we poured the white ganache that had been in the fridge over the dark one and just let it fall down the sides in a rather pretty way. Mark Heath’s mum had found a copy of Sleeping Jack Whittington and the Seven Bears from Hallfield and given us a copy so we watched that. I was fabulous, as were Sadie, Tim, Amelia and Adam. Sadie and I are going to watch it again with wine. Fun times!

Tonight we’ve had cake and it is yummy. The checkerboard was a complete success!

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The 23rd of February.

This evening, when putting my soup bowl away after tea, I had this strangely optimistic feeling. Like I’m looking forward to tomorrow, and everything’s going to be alright. I know it’s not, but that seems kind of irrelevant right now. My knee has felt suspiciously fine all day, in fact, the only thing bothering me is a rather vicious headache but I’ve had some paracetamol so hopefully it’ll go away soon.

I kept my leg elevated today, just to be safe, and spent my morning as I do every Sunday morning, watching Sunday Brunch. We had Sunday dinner at lunchtime, because Christine had to get the train home at four. We had some super-tasty lamb.

This afternoon, I watched Hostages (something of interest finally happened!) and the Winter Olympics Closing Ceremony. It seemed to scream “We can laugh at ourselves! Please don’t hate us!”

If my knee is still okay tomorrow, Daddy and I might go and see The Lego Movie!

The 24th of February.

I don’t want to speak too soon, but after three days of consistent sleep, I think my early rises might be gone again? Now I’ve written it down, I bet I’ll wake at half four tomorrow.

I didn’t actually properly wake up until ten past nine today! Then Daddy had plans to go to Wickes and other such exciting activities (!), so we put off the cinema until tomorrow and I went into town with Mommy. She went to give blood and was there for a good hour, so I sat in Starbucks and read about half of The Humans by Matt Haig, which I’m now really enjoying. When she was done, we went to M&S to look for a suit for Daddy but they don’t have many summer ones in yet.

My knee was twingeing a bit when we get back to the car, so this afternoon I put it up again and iced it, just to look after it again. I think I’ll just have to be careful with the amount I have it bent.

Becky came over after school and I gave her some brownie and she told us about her owl experience that James bought her.

I got a little bit deep into my own head in Starbucks. I watched some school/college kids and they were so young and carefree. They know nothing about life and how shit it can be. They are so lucky. I hope they appreciate it.

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The 21st of February.

Difficult again. Reasonable sleep. Anne-Marie came this morning to flush my line, but the prescription that’s been sent is wrong, so she rang the QE and got them to send over a new one, but she’d have to come back this afternoon after picking it up. While she was here, she took the stitch out of my neck which was really fucking uncomfortable. It was really tightly knotted and some blood had dried around it so it was stuck to me. So that was fun.

This afternoon I’ve just been really depressed. It’s really hard. I’ve put on another pound even though I watched what I ate all week, it doesn’t seem to have mattered. I feel like it’s all just pointless. Anne-Marie came back to do the line flush at one point, once she had the right prescription.

I just want to go to bed and cry. For a week.

The 22nd of February.

My knee is worse today than yesterday. If it doesn’t improve by Thursday, I’m going to force them to get a bone doctor, or a portable ultrasound machine. It’s completely nonsensical.

So this morning I hobbled around, them immobilised myself in the armchair with my leg up on a stool. I remained there for the rest of the day, except for the parts when I made lunch and things. When I move, I make noises like HUARGHHH. I am essentially ninety years old.

This afternoon I planned on reading The Humans and having a lovely time, but I ended up playing games on Ada and being incredibly unintellectual. (It wasn’t even Sudoku or something challenging.)

I feel less depressed today. So that’s a good thing.

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The 19th of February.

My knee is still not 100% better. It feels fine, then I bend and am reminded that I’m slightly crippled.

I had a really pretty decent sleep – I wasn’t properly awake until about half past eight! I have spent my day mainly in front of the television apart from a brief period I spent upstairs, trying on two pairs of jeans that will be returned as neither fit in a way I like.

Tonight I’m watching the Brits and it all seems a bit lame, compared to other awards ceremonies. Maybe it’s just me, but I have never found them particularly prestigious.

I have nothing of interest to say about today. I chased both black and white cats out of the garden. That was quite enjoyable.

The 20th of February.

Another good sleep! I don’t know how, but I’ll take them. This morning we went into town to return the jeans, and buy some moisturiser and lip balm. Riveting, I know.

We got home about lunchtime, and after watching the final episode of Tough Young Teachers, Mommy went to see Grandma and I read the entirety of The Fault In Our Stars. I still don’t like Hazel, but I quite liked Gus, and he was the one that made all the poignant comments. I’m a bit angry with John Green for not really articulating dying properly, but that’s kind of irrational when I can’t do it myself, and I actually am. How can I expect someone to write fiction about it?

He writes a lot about side effects. Like how cancer is a side effect of dying. Or how people with cancer are side effects of evolution and genetic mutation. Fuck off, I am not a side effect. I’m dying from a side effect. The whole book just made me kind of angry and I don’t know.

The fact that I’m dying in general makes me angry. I don’t want to. I don’t deserve to. But nobody does. God, I’m so tired of this. I hate it. I’m tired of being a sick person. I want to keep being a person. But I can’t. Fuck.

The 17th of February.

Today has been much better. Well, emotionally. Physically, it was not so good. I woke up and found I was incapable of bending my left leg. I must have done something very drastic and weird in my sleep because there was a significant visual difference between my knees, and I had to be assisted in getting dressed and  downstairs. It was hard enough to drag my leg out of bed!

So I spent my morning with my leg up on a stool and the ice pack. At lunchtime, I managed to get to the kitchen, bending my knee very slowly and slightly, and over a couple of hours, I was able to bend it enough to put my trainers on and get into the car to go to clinic. I had to wear my trainers as they’re the only shoes I have that go with the jogging bottoms I had to wear because they’re the only trousers I have that could accommodate my swollen knee.

Ram was actually happy with everything, and gave my knee a squidge before realising he’s forgotten everything about orthopaedics, so was no help. We then had to get a massive prescription which took pharmacy 40 minutes to put together.

Then there was a tedious journey home, and tonight I am just hoping to get to sleep relatively easily without being in too much pain.

The 18th of February.

My knee is better today, hallelujah! I am able to bend my leg and wear jeans an’ everythin’! I also had a fairly big sleep (for me), so I feel pretty good today. This morning I had a few tiny aches, like my knee hurt a tiny bit, my line site hurt a tiny bit, when I coughed it hurt a tiny bit – cumulatively, it felt like I’d been beaten up by tiny fists. But I’m okay now.

Mommy washed my hair after This Morning, which also contributed to me feeling good. It needed washing, but I couldn’t kneel yesterday or lean into the shower before that.

This afternoon, I had a phone call that I will reveal more detail about at a later date if anything comes to fruition from it. While I was talking, Anne-Marie rang so I had to ask her to ring back, then some guys rang the doorbell about some leaflets that weren’t delivered – obviously someone hasn’t done their job. Whoops.

Every so often, I just get hit by the enormity of all this. While I’m still well, it doesn’t really feel real, that I’m going to die. I hate not knowing how much time I have; the uncertainty. Oscar gave me the fright of my life tonight – he made a weird growl in his sleep, I looked down at him (he was sleeping under the radiator behind my chair) and I really thought he’d stopped breathing. He’d sitting on my lap now. But I hate that soon enough, that’ll be me that stops breathing. And I won’t get back up.

The 15th of February.

Today was very much dedicated to recovering from the past two days. I took a Zopiclone last night so I had a really good rest which was really important. This morning I had my breakfast and wrote about yesterday, as I was too tired to do it last night.

I got dressed very carefully – having to accommodate my new  plumbing is something I’ll have to get used to. There was nothing on tv that I really wanted to watch this afternoon so I listened to Nils Frahm’s album Felt (via headphones – it is so much more intense and beautiful than just out of speakers) and read the weekend paper.

I had a couple of emails to send, some jeans to buy and blog posts to write up, so I did that, and Mommy and I watched the final of Britain’s Best Bakery.

I ache much less this evening – I don’t think I’ll need any paracetamol tonight.

The 16th of February.

It’s been a difficult day. I had approximately five hours of sleep which was not of brilliant quality, and I have subsequently felt shit all day.

This afternoon, I decided to go and lie on my bed and rest (I can’t sleep in the day so that’s the next best thing) but I just ended up thinking incredibly morbid things and generally feeling really depressed.

I just…I don’t know. I’m finding it hard to be articulate. I would really just like today to be over, but tomorrow is GvHD clinic and Ram is probably going to be annoyed that I’m down to 3mg of steroid and I cannot be arsed to fight with him.

I’ve got nothing to say tonight. I’m sorry.

silly oscar

Oscar was sitting in a silly way tonight. Bless.

The 13th of February.

Oh wow I am sore. I was up at quarter to six so we could go to hospital for half seven. Thankfully, things in ambulatory care went well – I read the paper and ignored my grumbly tummy because I was nil by mouth. A nurse called Sonia admitted me, and not long after, they came to take me to have my line put in! Had to have the long chat about periods and how there is definitely no chance I could be pregnant, and go through all the risks on the consent form. They gave me some midazolam which made me a bit sleepy and fuzzy, although I did have to ask for some more because despite the local, it was still pretty uncomfortable. Once it was over, they let me pull out my PICC line which was fun! It was much longer than I thought.

They took me back to ambulatory care where I had to stay on bed rest for two hours, but I was allowed to sit up so I could adjust my body to aid comfort. Once the two hours were over, I was allowed to get dressed and go up to photopheresis. That went really well, thank God. The line is in a good place, so it won’t be awkward to get out of clothes, and we’ll be back tomorrow. I might need a bag of blood or two in the morning. I really hope not as that would make it such a long day.

Becky came over with some brownies and they were very tasty. I’m going to have an early night tonight; I’m so achy.

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Ambulatory care.

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Post-op breakfast, yeah!

The 14th of February.

Well my Valentine’s Day has been such fun. It began with me chasing the nasty black and white cat out of the front garden (a spectacle I’m sure the the neighbours all enjoyed), then going back to hospital early because I needed two bags of blood before photopheresis as my haemoglobin yesterday was only 9.2 and they prefer it to be over 10.

We got there at about half past nine and the blood didn’t arrive for at least another hour, so I just read my paper and waited for the porter to bring it. The transfusions were all very run of the mill; made me quite pink and warm but all in a good way. Then just after two o’clock, I was ready to get going on the photopheresis machine. Just before I did though, I thought I’d pop to the toilet, where someone had forgotten to lock the door so I walked in on an elderly lady who was obviously a patient sat on the toilet. I just blurted “Sorry!” and shut the door as quickly as possible. I went into the next toilet and made very certain that I locked it.This was all fine and dandy and I was pootling along, then when my cells were being returned, the machine kept alarming and not wanting to play the game. Eventually we swapped lumens, because the intensely high-pitched beeping were adding to my level of stress, which was further compounded by the fact that we were forced to listen to Radio 2 all day. We hate Radio 2. At the end of the treatment, you get a time of how long it’ll take to photoactivate the cells and give them back, which is usually about 15 minutes for me. Today, it was 99. It was a good thing I took a lot of food to keep me going! We finally left hospital at six. I was so on the edge of bursting into tears, I can’t explain.

So tonight I am absolutely drained. I’m still very sore and achy, and I would just like to sleep for a week.

And to round off my wonderful day, I whacked my head on the staircase after putting my boots down underneath it.

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We had to make Valentine’s Day cupcakes for a tea party at my Grandma’s nursing home. Seriously.

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Home time.

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