Archives For April 2014

The 26th of April.

I did not have a good night – I was cold, then I was afraid I was spiking, but I did eventually fall asleep, only to wake at twenty to six because we had to leave the house at seven to get the train to London for me to go to Sophie’s hen do!

Our train down to London was fine, even a little bit early! We got a cab to Leicester Square tube station where we were all meeting, then Mommy and Daddy pootled off and the rest of us piled into two cabs to go to Choccywoccydoodah. Sophie, Christine, Sophie’s friend Alice and I were in one, and Felicity and Brenda (Sophie’s sister and mum) came in the second one. We all met up on Carnaby Street where Auntie Hilary was waiting, and Sophie twigged where we were going, and we went up into the secret room for chocolate breakfast!

There was a table covered in sweets, huge bowls of jelly babies (fatal), dolly mixtures, smarties, plus platters of cakes and jars of chocolate drops and mugs of melted chocolate. I ordered coffee and a slice of cake which was vast, but I also wanted to try a while chocolate truffle milkshake, so I finished nothing. We were all then a bit defeated by the chocolate, so we all got taxis back to Sophie’s flat which had been filled with balloons and we all flooped a bit and drank a lot of water.

Once we’d all recovered, we spent the rest of the afternoon making twenties-style head-dresses to be worn for the evening bit that Christine, Hilary and I weren’t attending, but we partook anyway. We had to leave at five to got to Euston, so I Hailo’d a taxi and we trundled back across London. When we arrived, we found that all the trains had been delayed due to signalling problems at Watford, but because we had booked assistance, we were looked after. Our train was meant to be at 18:23, but we didn’t get put on one until 18:51. This would’ve been okay, except then we just sat there on an empty train for fifty minutes until they opened boarding for the rest of the great unwashed and a million people got on. I was very happy to have my own chair. I had a very cute baby to look at on the journey too so all was well. I listened to nice music and felt a whole lot better about life.

When getting off the train, two drunk guys singing Relight My Fire wanted to help and one kissed me on the cheek. Little bit disgusting.

An unexpected ending to my day.

The 27th of April.

Oh so weary but in a good way. Got up at half past nine and watched Sunday Brunch in pyjamas. I decided that I would do my workout this afternoon because I won’t be able to tomorrow.

I exercised with one eye on Britain’s Got Talent and Mr. Magorium’s Wonder Emporium. I love that film so much, even more so since it has become apparent that I will be departing too. He is probably one of my favourite film characters of all time.

This evening we had tickets to see I’m Sorry I Haven’t A Clue at the Hippodrome which was vastly entertaining. I was asked if I was going to Jason Manford’s comedy gig for Stephen/TCT but we already had these tickets and I got to see Tim Brooke-Taylor sing Wrecking Ball which I would not trade for anything. Plus I saw Jeremy Hardy live who is my third favourite News Quiz person (behind Sandi and Susan, sorry Jeremy) and I hadn’t expected to see him at all so that was ace and I was literally overjoyed. I also got to play in a kazoo orchestra with 1800 other people which is pretty magnificent.

Mr. Edward Magorium: When King Lear dies in Act V, do you know what Shakespeare has written? He’s written “He dies.” That’s all, nothing more. No fanfare, no metaphor, no brilliant final words. The culmination of the most influential work of dramatic literature is “He dies.” It takes Shakespeare, a genius, to come up with “He dies.” And yet every time I read those two words, I find myself overwhelmed with dysphoria. And I know it’s only natural to be sad, but not because of the words “He dies.” but because of the life we saw prior to the words. I’ve lived all five of my acts, Mahoney, and I am not asking you to be happy that I must go. I’m only asking that you turn the page, continue reading… and let the next story begin. And if anyone asks what became of me, you relate my life in all its wonder, and end it with a simple and modest “He died.”

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The 24th of April.

I just can’t escape it. It’s not like I begrudge him the attention or anything like that, it’s just that every time I see it I am reminded of how little it feels I have done. I might have made a few people sign up to be organ donors but that seems like nothing when you’ve got a gang of celebrities helping you raise over a million pounds for a charity that helps give people hope. Which is another thing – hope. I feel like I’m being bashed over the head with the fact that I have none, and there are a hell of a lot of other people out there who are terminal just like me, and every time we might forget that we’ve not got years and years ahead of us, we’re reminded by the news of the ever-present spectre of death.

Or maybe they’re not, maybe it’s just me and I’m being incredibly selfish and I should just shut up and be happy. I wish I could. I wish I could have sat in photopheresis today not thinking about going next door to YPU and asking him exactly how it feels to be on the brink. Because that is what I so hopelessly want to know, and it something you can’t really ask a dying person.

I am just in a terrible headspace and feel utterly miserable and pathetic.

The 25th of April.

Today hasn’t been so bad. Daddy took me to photopheresis for eleven, and I ran really well today so I was finished just after one. We were going to go and see Transcendence afterwards, but we both read such terrible reviews of it, we decided against it.

This afternoon I did my workout during Spring Kitchen and Fifteen to One. Then I painted my nails rather messily, watched Hollyoaks, ate dinner and here we are.

Tomorrow is Sophie’s hen do at Choccywoccydoodah and I am quite excited for all the chocolate. It will be something of a write-off, foodwise.

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The 22nd of April.

I have pulled a muscle deep within my backside and it is causing me a fairly serious amount of pain. Ibuprofen isn’t an option because of potential dangerous side effects and I can’t use something like Voltarol because I cannot find the muscle to rub the gel into!

This morning I did normal, boring things, then at half twelve, Mommy and I went to Tesco and M&S to get me some protein snacks and more vegetables and soup. I must have appeared vastly interesting to small children, as in Tesco, a little girl pointed at me and said “She’s got pink hair!”, then in M&S, a tiny boy pointed in my face and said something made indeterminable by his dummy, but it sounded like “Radish”! That’s fine; I’ll be a radish.

This afternoon, I had some of the Super Vegetable Soup, then I did some exercising (just not any squat-like exercises). My mouth seems okay – comparing photos of it every day is helping me keep track of how it’s progressing.

A guy I’ve met a few times called Stephen is dying. He’s been terminal since 2012, but now he’s in the TCT unit with a collapsed lung, with maybe only a day or two left. He seems okay with it. I’m not sure how I’ll feel at that stage; I really hate not being able to breathe comfortable but I don’t want to die in a hospital. I don’t know how I’d be able to sleep, but any sleeping tablet would suppress my breathing more. It makes me death a little more real.

The 23rd of April.

I’ve been on the precipice of tears all day because of Stephen. It’s not because i know him particularly well or he’s had a massive effect on me, it’s just that it’s making the prospect of my own demise a little bit more solid. I am desperate not to die in hospital like he will because it would feel like I had been beaten, but logically I am not sure how I could avoid it. Dying from an infection is very different to your body slowly switching off, which is sort of what’s happening to him, I think. When I get the untreatable infection, if it’s anything like my most recent cholangitis attacks, the pain will be immense so I’ll be hopped up to my eyeballs on IV morphine at the least, plus whatever they are giving me to try to control the fever. When things start shutting down, ICU is probably going to be my destination, but I can’t bear the idea of it being the final place I close my eyes.

So thinking about that has taken up most of my day. I did some exercising as it’s a good distraction, but all in all I’m a little lost today. I’ve got to go to the QE tomorrow for photopheresis, and right now I really can’t predict how I’m going to deal with it.


April 23, 2014 — Leave a comment

Someone I know is dying. I say “know”, I’ve actually only met him once. His name is Stephen Sutton, you might have heard his name in the press or on social media in the last few days. He’s been terminal since 2012, and at that point, he decided he wanted to try and raise as much money for Teenage Cancer Trust as possible. At the weekend, he ended up in hospital with serious breathing difficulties because the tumours have caused his right lung to collapse. He’d raised half a million pounds or so by then, but today he reached a million. As far as I’m aware, he’s still here, lying in the TCT unit at the QE on oxygen. He knows what’s going on, how wonderful everyone is being.

I know I should be impressed and I am, but my overwhelming feeling is that I want to go and ask him what it’s like. I feel so selfish but all the news of his imminent death is doing for me is making my own all the more real. He’s said he’s sorry for not being able to say goodbye to everyone, and that is the thing I am most afraid of. Not having enough time to tell people how I really feel about them, just ticking along like everything is normal, then being rushed into hospital and probably dead within days and me just not being ready for it.

The 20th of April.

I do not feel good. Eating my entire After Eight Easter egg all in one go might have seemed like a reasonable plan in order to get it out of the way, but it’s left me feeling rather sick for the past five hours or so.

This morning I watched Sunday Brunch, then we picked up Grandma and went to The Cock Inn for lunch. I had seared pigeon breast on a sweet potato rosti, then roast pork loin with mixed veg, apples, potatoes, and a Yorkshire pudding for some reason.

This afternoon, I watched Despicable Me while eating my egg, and since then I’ve had to lie down to try and stave off actual vomiting.

I may end up having the steroid injection into my tongue.

The 21st of April.

I am feeling much better this evening having not eaten almost an entire Easter egg today. The entire experience of yesterday has kind of put me off finishing it off, to be honest.

I got up at nine and spent my morning having breakfast and drinking coffee, thinking Danny was going to arrive at twelve for a session, but he had an emergency and had to cancel. It was fine; we’ll reschedule. I still did my workout, just later – I did it during Harry Potter 3 this afternoon.

Christine went home at 12, having been bitten by one of Oscar’s fleas as a parting gift. I am so glad that bugs do not find me tasty, even with all my different bloods.

My mouth is stable, I think. I just have to keep an eye on it and keep being diligent with the mouthwashes. I would really rather avoid being stabbed in the tongue.


The 18th of April.

Writing this on Saturday morning as I wasn’t really in a fit state to do it when I got home at quarter past one this morning.

This morning I had to be awake and dressed ready for Anne-Marie to be here for line-flushing at ten this morning, then after she’d left, there wasn’t a massive amount of time to do anything before Danny came for training at one.

We started off with boxing combinations again, then I did squats while holding the exercise ball out in front of me, then kettlebell swings, bicep curls, shoulder presses, some rowing, and a set of squats straight into swings which was meant to also include a set of shoulder presses but by then I literally couldn’t breathe.

When we were done and I’d stretched, I made myself some lunch and watched Harry Potter 1 while updating my blog. Then I got changed for Jamie’s party (a choice I regretted – bare legs? I came home and got changed again) and we went over the road.

It was a good party! Lots of booze, lots of food. Had a fun time talking to the youths, then at midnight, when it was time to play Pig (a game which gets rather violent in the East household), I decided to just spectate. Once Greg had one, I thought it was time to come home to a hot cross bun and lots of water.

The 19th of April.

There is a cat on my lap and he smells rather bad. It’s Oscar, but it’s not very nice. I think it’s his new flea treatment.

I had a good sleep (a bit of booze always helps), waking at half past nine and was pleased to find that I did not have a hangover. I had a muffin for breakfast and watched last night’s Great British Menu and Masterchef with Mommy and Christine.

This afternoon, I watched Harry Potter 2 and did some arm exercises as they were hurting after yesterday, and Daddy and Christine went to see Locke. I also read today’s Guardian, and for the rest of the time I have watched tv! Today has not been super-productive.

I am worrying about my mouth because I have a few ulcers under the right hand side of my tongue. I’m monitoring them and being very diligent with my mouthwashes and I am just hoping beyond all measure that I don’t end up back on systemic steroids. I’m trying to hold them off until photopheresis on Thursday.

The 16th of April.

Tonight I am a schweepy bear but it because I have actually been outside and done things. This morning I got Mommy to wash my hair, then I met up with Vicky at Yorks for lunch.

She is one of my few proper cancer friends and she sort of disappeared when it emerged that I cannot be fixed. I understand why she did – fear. It’s okay because she came back and I love her. I do not hold nonsensical grudges. I get why some people have pulled away – it’s easier not to be close to me when I do die, so you’re not so sad when it happens. Anyway, we had a lovely time, eating foods (me eggs florentine, her lamb flatbread) and drinking coffee. We nabbed the sunny window table, then got too warm and had to move. It was nice for a while though.

When I got home, Becky came round to borrow some books to take on holiday, and now I am weary.

The 17th of April.

I think today might have been the last day of my period, thank God. Stupid life-ruining enforced menstruation.

From lunchtime onwards, I was quite a busy bee. I’d spent my morning replying to some emails and hunting through a multitude of old photos, finding one I haven’t seen in a long time of me on the phone to Christine after I’d had one of the tumours in my face biopsied.

This afternoon, I thought I should work out as I hadn’t for the past two days, so I did all that until about half four, when Mommy and I watched an episode of Criminal Minds. When that finished, I got changed and made myself presentable, then went over the road to go out with Becky, James, Jamie and Natalia for Jamie’s 21st birthday meal at Miller & Carter. They still hadn’t got any mango puree which Becky and I were rather irked by. So she had the Grey Goose Le Fizz and I had a Cosmopolitan which I was pleasantly surprised by! James was starving so we went to our table and he ordered ribs while the rest of us had steak. I had the 14oz T-bone and it was super tasty. I didn’t touch my lettuce wedge.

None of us could fit in pudding, so we left after just main courses and went back to the Easts’ for birthday cake! It was a really good cake; I was impressed with Natalia’s baking skills.

Now I am really full and sleepy.

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