Archives For January 2014

The 28th of January.

I have a headache. I keep getting them in the same place and I think it’s to do with the fact that I’m not ever getting a full night of sleep. I’ve got nothing on tomorrow so I’m taking a zopiclone.

Unsurprisingly, when I showed the nurses my arm, they didn’t want to try again. They didn’t even want to touch it. Annoyingly, the one who actually did the butchery wasn’t there so I couldn’t reprimand her for it. It was still bleeding up until this evening. Sandeep was on the ward so she’s sent off the form to refer me for another apheresis line insertion so that’ll hopefully happen next week in ambulatory care. I’ll have it done under local so I can go soon after and it’ll happen more quickly than it would if I wanted a GA.

We went into town after leaving hospital, to show Mary from Chanel my new bag, and I bought the ballerina nail polish because they’ve brought it back. Then we went to M&S because I wanted some soup (Super Vegetable Soup) then, in the Bullring lift to the car park, we bumped into Charlotte and baby Sophie! Always a delight to see my favourite squidgy baby, but then when going to our respective cars, she wouldn’t let go of my finger! I had to tug it from her tiny but astoundingly strong grasp.

This afternoon, Becky came round, I showed her my arm and told her all about that, and she told us about the course she’d been on today.

I think my arm has finally stopped bleeding.

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The 29th of January.

I had a very pleasant, dreamless sleep. Got up at about nine-ish? I was planning very much on having a rather idle day, as I had the zopiclone last night.

So essentially, I have just watched tv all day. I updated my blog, and this afternoon Mommy took me to the sweet shop. My current diet is pretty much all I can think about – trying to eat “normally”; not deny myself things but also not overindulge. I have many little packets, so they’re fine to indulge in, then finish.

Grandma had her first cataract surgery today, and is apparently doing fine. She has a massive eyepatch, like a pirate.

I am really restless and fidgety. I want time to pass so it can be Friday morning and I can weigh myself. This is really dangerous thinking for me and I’m really not sure what’s going to happen.

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The 26th of January.

Well I thought I’d sleep better than I did, but I was still awake at half past five, ugh.

Standard Sunday Morning – up, dressed, breakfasted, Sunday Brunch. We went out at half eleven because Grandma wanted to take us out for (another) carvery for Mommy and Daddy’s 34th wedding anniversary. We went to a different one which was recommended by the nursing staff at the home, but we decided we prefer the park one. I only had turkey today, and less carbs as I think I had enough of those yesterday.

We got back just after two, and later on, Alison came over with flowers for my parents and to look at my bag, then shortly after, Becky and James appeared and Becky did some admiring. James was very sleepy, bless him.

Tonight we are watching The Jump. We have just been watching Dancing on Ice but I was just really distracted by how utterly dreadful Ashley’s look was tonight – the hair with the eyeshadow and the dress…it was not a good combination.

9am photopheresis tomorrow. Ugh.

The 27th of January.

Photopheresis did not go well. My arm is a mess. The nurses each had a go in different places and one of the holes is still bleeding. We had to give up on today’s session because every vein blew and I have literally nowhere else to go. We’re going back tomorrow to have another go but I’m not optimistic. It fucking hurts.

I woke up at five, got up at six, and we were out by eight. After failing at hospital, we were home again by eleven, and so we watched The Bridge (only two episodes left ooh it’s so tense) because we didn’t get chance to yesterday. I read some more of The Luminaries, too.

I’m really tired tonight, but thankfully we don’t have to be at the QE until half eleven tomorrow.

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The 24th of January.

And back to normal waking up time – five o’clock today. I can’t wait until I’m off steroids. My face will return to its original shape, I’ll start sleeping past six am, and I won’t be ravenous all the time. I’ve put on a pound and a half this week and I’m trying not to freak out about it because logically I know there are more important things but my brain is just warping all my rational thoughts.

Anne-Marie was supposed to come to flush my line this morning but she never materialised, and the people who responded to the message we left really didn’t help at all.We needed to go to town to pick up the train tickets for tomorrow, so we weren’t going to hang around and wait for her to arrive, so Mommy flushed my line and off we went. It’s a good thing we’re old hands at this by now.

Town was not particularly exciting; just errands. Oh, we did see the tiniest mouse in the world outside HSBC on New Street to which everyone was giving a wide berth to and squealing “Oh its so CUTE!” That was fun.

This afternoon, Mommy washed my hair and I read my book, and Daddy tried to fix the tap he broke this morning.

I’m very excited about tomorrow.

The 25th of January.

Isn’t it funny how sitting in an armchair is completely different to sitting on a train or in a wheelchair all day? Actually I was in the wheelchair on the train too.

We had a good journey to London; assistance was timely, train was quiet, and the people at Euston were fairly prompt at getting me off the train which is unusual. We got a cab directly to New Bond Street and went to Chanel, looking in all the windows of the fancy shops we passed. I half-expected to see a member of the Made in Chelsea cast.

The Chanel experience was everything Mary said it would be. The doormen welcomed us in, then we sort of slowly meandered around, looking at all the things on display and saying good morning to every member of staff in our suddenly soft, posh voices. There was a section of the store that was up a couple of steps, and when I enquired about how to get up there, a man led us to what seemed to be a mirror, but was actually a door panel in the wall that opened to reveal a wheelchair lift! On the other side, we met a lovely man called Ulisses who I love. He just took care of us incredibly well, listening to what I wanted and was looking for, and after much discussion and viewing of a couple of bags, I have come home with a 2.55. He told us all the reasons behind the different aspects of the bag, and it was plain to see that he knows the brand and the story of Chanel inside out. I paid, and he went away to wrap it up, and we talked to a lady called Theresa who may have been the manager. She told us about how the store has been entirely finished by hand, from the different textures on the walls to the gilding on every single light fitting. Then Ulisses reappeared with the bag and his business card, and we said goodbye.

We found a little place called Everbean on Avery Row, where we had some really excellent coffee and we shared a chocolate cronut. I couldn’t eat a whole on, and though it was yummy, it’s not an experience I need to repeat.

Then we went to Selfridges where we met Amy at The Brass Rail for salt beef. Oh God it’s so salty and delicious. I really love meat. We sat and took up space for a while, updating each other on our families’ medical sagas, and suddenly it was 3 o’clock. We decided to go and look in the cook shop, but then only briefly toured round it before spending most of the next hour in the bookshop, marvelling at a particular book that cost £3,500 and flicking through all the cookery books.

When it got to 4pm, we needed to get a cab back to Euston. It was just starting to try and rain, so that was good timing. We said goodbye and had a big hug, then we were on our way home again. The train stopped because of a power failure which was slightly unnerving, and I nearly didn’t get off the train as no assistance came at New Street until we actively got someone, but now we are home and I am knackered.

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The 22nd of January.

Oh, last night’s sleep was good. I  just crawled into bed and had a beautifully dreamless night. I got up at half past nine, because I thought ten-odd hours was enough.

I spent my morning writing about yesterday, and this afternoon, I wrote it and prior two days up on the blog and read The Luminaries. Daddy came home from work early because he has a grotty cold, and ended up going to pick up our new tv from Currys.

Now the old living room tv is in the gift wrapping room, and the tv that was in there is in my room. It will be nice to have one that is not from the 80s.

Tonight we’re watching the NTA’s, then I’m going to take some Zopiclone and totally zonk out.

The 23rd of January.

Today has been very quiet, as was planned. I took 7.5mg of Zopiclone last night and I wasn’t sure how it would affect me the day after, so I purposely did nothing. We’ll see how much of today I remember; that is the second test. I definitely feel less fuzzy than I do with lorazepam.

So I’ve had a very dozy day, watching tv and reading The Luminaries. I also painted my nails, and this afternoon a box from Betty’s came! It contained the rest of my birthday present from the Easts, their presents for my parents’ wedding anniversary and some bits for them. I got macarons and fondant fancies, yum. I’ve eaten the chocolate macaron and I had one of the fondant fancies for pudding after tea tonight.

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The 21st of January.

It’s been a weird birthday. Good, but a bit strange. It started with me having literally no sleep at all. At first, I was too cold, even with my electric blanket, dressing gown and hoodie on – I was so worried that I might be spiking (which would be utterly typical of my body) that I started taking my temperature every half hour, but it was normal and I did eventually warm up. Then I was really hungry, but didn’t want to disturb everyone. To occupy myself, I listened to podcasts. I happened to put on the Richard Bacon podcast from the 16th, which was dedicated to Steve Evans. I knew nothing of him until then, and suddenly the night before what was potentially my last birthday because a lot more poignant. He seems to have been a lot like I am in his attitude – it is what it is, and it’s going to be over sooner than planned, but until then, we carry on. Everyone says how much he loved people, and I like to think that I’m similar in that way – when I think about the people closest to me, I cannot even put into words the love I feel for them, and the guilt I feel in having to leave them behind when I go. It’s funny – in a way, I almost feel privileged to be in this position. I know that death is coming, so I hope that I can maybe unravel some of the mystery of what dying is like. If I can help people feel more comfortable talking about death, or to cope with their own cancer in the way that Steve evidently did, then I am happy. I want my family to be proud.

Mommy came in at about seven, to say happy birthday because she saw my light was on, and gave me a big hug when she found I’d had no sleep. She went downstairs and I went to the bathroom, then downstairs to have some breakfast (I was still starving, remember?) and open cards and presents! I had lots of pretty cards, and I got a nail varnish/trinket rack from Christine, a new dressing gown from Grandma, the Les Mis dvd and a lovely copy of the book from the Hudsons, £50 from Taid, and a new Pandora bracelet with my birthstone charm on, the Grumpy Cat book, socks with squirrels on, little dog earrings, and a cute tin with a kitty on from my parents.

Daddy went to work, and I got dressed and ready to go out as Mommy and I were having brunch at Selfridges at eleven. The Balcony is really nice, and it was completely empty. I had a bellini, then Mommy had eggs benedict and I had a massive waffle with gallons of maple syrup because I decided I needed the sugar to keep me awake. That took a little while, then I had a surprisingly good latter and we went to see Chanel Mary, who gave us lots of goodies, and we’re to go back next week to see the new colours and show her the bag I get. Then we went to Nationwide so I could put in the cheque from Taid, then Hotel Chocolat where I bought myself some white chocolate coffee truffles. We went over to American Apparel, but I couldn’t find anything I wanted, so then we went to Paperchase to get a card to RSVP to Joely’s wedding invitation. The last place we went was Pandora, where I bought myself the mouse in the teacup charm (I felt it was appropriate, thinking of the dormouse in the teapot in Alice in Wonderland, and I have felt dormouse-y all day).

When we got home, I ate some grapes (I felt the need to have something green before I put even more sugar and carbs into my body), then Becky came over and we went round the corner to get pic’n’mix, then watched Harry Potter 7 pt. 2. I ate all my sweets, then felt very full and didn’t have room for cake and dinner, so cake had to be postponed.

Becky left around six, and we got ready to go out to La Tour. The menu was not as good as usual – I think it’s been reduced for January as they have a 50% off offer on all month, but it was fine. I had trout gravlax with a citrus and chicory salad, then chicken supreme with smoked mash and seasonal veg. It was all very well cooked; my only regret is that I forgot to photograph my main course! Then they brought me a plate saying Happy Birthday with some truffles on, and we came home!

Mommy made me a white hot chocolate, I blew out the candles on my cake, then we all had a slice and went to bed.gifBox cards champagne


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The 17th of January.

Well I feel absolutely wretched again. The lorazepam was not as good as usual, so I was awake at half past seven even with 3mg in my system.

I spent this morning trying to write an email to This Morning being concise yet informative enough to get my point across. Neither are easy when your brain is fuzzy so it’s still only in draft form; I’ll look at it again before I send it.

This afternoon, I had to wait for Mommy to finish baking some bread before we went out to get Christine from New Street. We went shopping for boots first, but had no success and I started getting angry and upset with the world. I ordered some online when we got home, and they’ll come tomorrow.

We picked her up, and I’ve barely said a word since then. I just don’t give a fuck about anything at all this evening, and I don’t want to talk about it. Some idiot on Twitter started asking me ridiculous questions and by the time she’d made it clear that she’d actually paid no attention to anything I’d said, I’d given up. I’m sick of people.

The 18th of January.

Apathetic. That is how I feel. I had about four hours of sleep, so I am essentially running on caffeine and that has just about run out now. I am so exhausted.

So with my energy at its current level, I have done absolutely nothing today. I watched Saturday Kitchen and read the paper, and Becky and James came round after they’d been to see Frozen, so now she has all the songs in her head.

This afternoon, Daddy and Christine went to see 12 Years A Slave (I am sure it’s an excellent film, but I really didn’t feel like putting myself through it), and Mommy went to see Grandma. I sat in the armchair, drank copious amounts of coffee and read The Luminaries.

Tonight I just really do not care about anything at all.


The 15th of January.

My body decided to override the steroids, so I managed a tiny lie-in (by that, I mean that I woke up at eight instead of half six) and feel much better for it.

This afternoon, I had liver clinic. We saw Monica and Jane who both felt the need to stroke my coat as soon as they saw me. Whenever I wear my fur, people want to stroke me. I don’t mind; it’s a very soft coat. James was running a bit late but not too much, and he was very pleased not to have seen me over Christmas. He doesn’t want me back until March! When we got home, I got Mommy to push me round to Greggs for a gingerbread man as they made them on the Bake Off last night and I had been craving one ever since. It was good.

This evening I had an Old Hallfieldian Society meeting, and it went really well! It was a bit longer than usual (two hours!) with only six of us there, but one of the most productive we’ve ever had, I feel. Tim Venner gave me a lift home, only for me to discover when we were nearly here that he lives in Solihull! Bless him.

Got home at half eight, ate my fishcakes off a tray on my lap and watched the Bake Off on delay. I hope my brain winds down before bedtime.

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The 16th of January.

Today has not been what one would call productive. I woke up at half seven from a horrible dream in which I was on my actual deathbed. I had my family around me and we all knew I was dying and everyone was crying, and I wasn’t ready yet – I remember saying “I haven’t written anything for my funeral yet”! It was grim.

All I did this morning was decide which birthday cake I want – it’s one from the Gü book which we haven’t made before, but everything else we’ve made from there has been tasty so I’m not worried.

I spent my afternoon in Bad Apple, having my hair dyed and cut. James and I did a little experiment with mauve, and now it’s sort of a lilac colour. Bit softer, messier. The mirror is a constant surprise. My face is getting too moon-like for my liking but it’s necessary. I hate looking like this but it’ll only be for a few more months. That’s what I keep telling myself.

I’m exhausted tonight – definitely having lorazepam. I need a big sleep. A really big sleep.

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