Archives For June 2014

The 27th of June.

I actually had a slightly more decent sleep last night, I think because I just so exhausted, so I didn’t properly wake up until about seven this morning which is practically a lie-in for me right now.

So this morning I just bimbled and watched TV, then Danny came at one for training. He had me doing this thing where I lie on my back (I’m going to make a gif or something), holding the stability ball behind me and bringing my arms and legs up so the ball and my toes meet. It’s really hard! I only managed about four of those, so I need to practise.

After he left, I stretched, I had some lunch and got changed. Mommy and Daddy have been in and out at Grandma’s all day because there are issues with the TVs at Boldmere Court and they are being exceptionally useless at fixing them, especially to my dad as he knews what to do! I hear it has all been very frustrating.

I emailed Mark, the X Factor producer who organised my audition back in Manchester just to check that I was correct i assuming that I’m not through. I was indeed right, which is a shame but I get it and it’s fine. He has, however, invited me to go and watch auditions at Wembley and meet the  judges which I will definitely be taking him up on! Isn’t that lovely?

The 28th of June.

Back to four am. I going to have lorazepam tonight though so it’s fine. Plus I’ve had a really nice day so I’m in an excellent mood.

I started my day with getting very kind tweets from people who subscribe to Cosmopolitan and had read the piece about me! I texted Julie to let her know and rang Mommy who was at Tesco to get to to check if there were any copies on shelves yet but there aren’t. I have to be patient! And patience is not something I have in spades but I am trying.

So I spent my morning reading the paper , watching Saturday Kitchen and occasionally receiving a nice message! Then after lunch, Mommy, Daddy and I went to see Chef (a family cinema trip is a real rarity in our house). I really like it, except it did make me really hungry for all the food! Grilled cheese, cubanos, beignets. Oh, the beignets I had in Paris. They were so delicious. And Mommy felt inspired for tea so we had smoky gammon with butter beans, tomatoes, onions and spinach and it was goooood. Then I had some Ben and Jerry’s Clever Cookies ice cream and that shit is yummy if you can get your hands on some.

I feel good tonight. A few people have tweeted me saying the piece made them cry, but it’s supposed to be uplifting! If you’re reading this and you got upset by it, please don’t be. I’m okay, I really am, and you don’t have to be sad. Bask in all that you are and can be, because life can be beautiful.

The 25th of June.

Four o’clock this morning. I think when people ask how I am, I will start responding with the time I woke up. I listened to two Josh Widdicombe podcasts and did some sudoku to kill the time until seven when I got up. I wrote up a blog post and had some breakfast and coffee. Then I worked out during Jeremy Kyle and This Morning while Mommy took Grandma to Sutton.

I kept getting interrupted! First, a delivery, then a guy offering tree surgery, then the postman, then the phone! I was just like CAN WE NOT PLEASE?! I do not love answering the door all sweaty and disgusting.

When I was done, I had a really long, lovely, pampering shower. All clean and scrubbed and shaved, then moisturised and prettified. I felt super-cute about myself this afternoon.

Mommy and I watched the last two episodes of season 9 of Criminal Minds and it was so dramatic and stressful! We get far too involved.

Tonight the winning category of the Longitude Prize was announced and it’s antibiotics! I was so happy that I cheered and punched the air. In the future, people in my position with antibiotic-resistant bugs won’t have no hope.

The 26th of June.

A day of ups and downs. Starting with downs. I was awake at three, again at half four and by five I was wide awake. Listened to podcasts, got up just before seven.

My plan this morning was to ring the QE to find out what was going on with my new line, and basically the photopheresis team know nothing and will do nothing. Apparently they were going to offer me the 4th of July, but that is the date we go away and they knew this. As soon as I hung up, I burst into tears because I am so tired and stressed. Mommy rang Ram’s secretary, who spoke to him, and eventually I had another phone call from the photopheresis nurses saying sorry, there’s nothing they can do, the line people just can’t fit me in and the fact that I won’t have had photopheresis for two months by the time I do get it at the earliest, despite a very recent GvH flare, isn’t important and nobody cares. I have clinic with Ram on Monday and it is not going to go well. Peter Taylor would move heaven and earth to get me a line if it were necessary.

So after all that, I was really happy to go and see Fiona, Nick and baby Phoebe! She just slept in my arms and I couldn’t stop staring at her; she’s gorgeous. I can’t wait to see her again when she’s more awake!

This afternoon I read The Farm in its entirety and iced some cupcakes for Alison to take to school tomorrow.

I am just a wreck.

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The 23rd of June.

My body’s punishment for taking lorazepam was to wake me up at quarter to four this morning! Oh, the end of July cannot come soon enough.

I got up at seven, and I decided the most productive use of my morning was to train, after breakfast and coffee. I had to ring up the secretary of the gynae lady I’m supposed to see who says they haven’t had the letter (even though I know it’s been sent). I spoke to Andy Toogood’s secretary just to check, and she has sent it, but she’s going to fax them another copy. I’ve definitely got some bleeding going on and I just really want to know what the fuck’s going on.

This afternoon I caught up on some ridiculous television (TOWIE) and painted my nails in sorbet shades.

I’m just so very tired and I hate evenings in steroid time because I just have no energy. Becky came over very briefly after school because I’d ordered some teacher biscuits for her but then she’d been poorly, but now she’s fine so I could give them to her! She’s very excited to eat them.

The 24th of June.

My tongue hurts and I am dangerously close to burning out. I was awake at five again, and if Zopiclone kept me asleep, I’d have one. It’s too soon for more lorazepam. We had to be at the dental hospital for 9.15 this morning, so I got up at half six anyway.

I was seen quickly by Dr. Albuquerque (yes that really is his name) who I met last year, and once again he was offering to biopsy my tongue. I do not know why he’s so keen to have samples of it! He also suggested I wear my mouth guard at night to try and stop me aggravating the ulcer too much (I grind my teeth in my sleep), which I’ll give a go. Mrs. Richards thought one last injection of the stronger steroid was a good idea, so we did that.

We went to town on the way home and I bought some sweatbands for my wrists as the kettlebells are bruising me, some stuff from Superdrug, some cheap wool and we also stopped at Maplin’s for a power extension cable.

When we got home, we had lunch and watched some tv, then Mommy went to see Grandma and I lay on the sofa and finished The Quarry. Now, if you want an unrealistic portrayal of dying and a tragic teen love story with infuriatingly unlikable characters, read The Fault In Our Stars. If you want to know how it feels when you’re dying, read The Quarry.

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The is a “corker” aka a brownie inside a cookie from The Brownie Bar and they are lethal.

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I ordered this sleep mask and I can’t wait to wear it in hospital and freak out the night staff.

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The 21st of June.

I forget how tired I get on steroids. Waking up at quarter to five is draining, and coffee can only perk me up so many times. They’re are so debilitating. I’m exhausted, and every day I see my face getting rounder, making me hate my appearance, not only for aesthetic reasons, but because it is a constant reminder that my body doesn’t work properly and is weak and vulnerable, no matter how strong I might feel. I could still wake up in excruciating pain tomorrow.

This morning I organised my underwear drawer and worked out (selectively) during Saturday Kitchen. I didn’t do anything too strenuous on my chest. Then I read the weekend paper and had lunch, and have slowly deflated over the course of the afternoon.

James came round to borrow some garden implements as they’re working on the pond again, which I imagine was great fun in the sun.

Oh, fuck it, I’m going to have lorazepam tonight. My energies are completely sapped and I have no need to remember tomorrow so it really doesn’t matter if I am completely out of it.

Fiona had her baby! I’m so excited to meet her.

The 22nd of June.

Well at least we know lorazepam works. I had a good 3mg before I lay down last night and although it took a little while to kick in, I was then zonked until about nine and that was just fine.

I spent my morning in my pyjamas, drinking vast amounts of coffee and not communicating much because there’s no point on a lorazepam day. After Sunday Brunch, I got Mommy to wash my hair and I got dressed. I had some soup for lunch, then this afternoon, got really stuck in to the urge to delete a load of apps from my phone as I felt overwhelmed by them.

I ended up going through my hard drives too, making sure I know what’s on each one. And because my brain is in such a fuzz, I couldn’t care less about how dull it’s been.

I’ve just had to set myself a reminder on my phone to say YOU CHANGED THINGS ON YOUR PHONE OK?

Tonight I can’t watch anything I need to remember.

Oh, I am possibly bleeding again? I will be monitoring this.

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New kitty pyjamas!

The 19th of June.

I slept a little later today – I woke up closer to half five than five. I got up at seven because I wanted to get a workout in before we went to the QE for half twelve line removal.

We went out just before twelve to give us time to park and get coffee before going up to 621. We waved at Sharon when we got there and she went to ring Susie, the doctor who was going to come and do it. She was on her way so promptly appeared, and just talked me through what would happen as I’ve not actually had to have a line removed like this before – previous ones have happened under GA or mild sedation in theatre. This was in a side room on the ward. It was fairly unremarkable: I lay down with a gown covering my modesty, she jabbed me a few times with some local anaesthetic, then made a small incision. There was some tugging and rummaging, and she snipped all around the cuff that had embedded, then she cut it into two and made me take a deep breath in, then she pulled it out on the exhale. She then applied some pressure for a few minutes and stitched me up! No pain, no dramas. I got re-dressed, had a look at the line but there was no obvious visual problem, and we left. I got Mommy to take photos all the way through because I couldn’t watch without getting my head in Susie’s way.

When we got home, we had lunch and watched things on the box. As fine as I feel, I know I do need to rest so tomorrow will be a quiet day too. Just have to wait for a slot for my new apheresis line now!

The 20th of June.

Nice day! My Zopiclone plan didn’t work (I was going to take it when I woke up in the middle of the night, and it would knock me out for a bit longer, but I still was up at half seven) so I’m just going to have to deal with that. I think lorazepam would work but that is really a last resort.

My chest doesn’t hurt too much, and it’s a bit strange not having to move the line out of the way, but I’m sure that will change soon enough. I’d cancelled my session with Danny because I did not think it would be wise to put stress on my arms/chest, so I’ll see him next week (well that’s the current plan, we’ll see when the new line gets put in which I’m sure will scupper matters).

Mommy wanted to go to the O2 shop as she had questions about her phone, so we did that, I got some pants and pyjamas from Topshop, and we bought some cards from Paperchase, because we need to sent Christine one to congratulate her on her new job! She rang and I answered Mommy’s phone as she wasn’t there, then she appeared and I relayed the news which resulted in a very loud, happy squeal. I think we are all very relieved.

Nothing particularly exciting has happened for me today, but I am very content.

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The 17th of June.

I took a Zopiclone again last night because my tongue was aching like crazy. Still woke up at half five because that is my life.

I worked out again this morning because I know I won’t have time to tomorrow, plus I am going to consume approximately one zillion calories at Five Guys and Miller & Carter. I finished just in time for my ASOS delivery, only one item from which I am keeping. I also had a delivery of macarons from Dr. Tim! They are trialling delivery at Macarons & More and I was a guinea pig. I can confirm that they arrived intact, beautifully presented and testing even better than before which I didn’t think possible! I’ve had the lemon, the salted caramel, and the vanilla so far.

Mommy and I went to town this afternoon because I haven’t been for what seems like ages, and I got a dress from Oasis and a mascara. Selfridges are revamping or something and it’s dreadful. The womenswear is split between the 3rd and 4th floors, all price ranges smushed together. It makes no sense and is utterly bizarre to try and navigate. I have emailed them about it.

When we got back, we tried to flush my line again (it’s misbehaving) and it’s just sucking things up and won’t bleed. It won’t even give back the saline immediately after you’ve pushed it in. It’s a good thing I’m at the QE tomorrow.

I helped Becky decorate some cakes for her Grandma’s birthday (my piping skills were in demand) and tonight I have painted my nails.

The 18th of June.

Holy fucking God I am so tired. Steroids are the worst. I’ve been awake since five am. I decided to get up at seven-ish because I was too hungry to stay in bed any longer. This morning I began as I meant to go on, as today was going to be terrible in terms of diet without question. I chopped up some dark chocolate and shoved it into a croissant which I subsequently shoved into my face.

I met Sadie for lunch at Five Guys at half twelve, which was less busy than I expected. A queue did form while we were there though so maybe we were just early? I ordered a hot dog with ketchup (I was afraid of going too fat-heavy) and she had a double bacon cheeseburger. We had a medium Cajun fries to share, but they were way too spicy for my lips to deal with so I only ate about two. I saw Alison Hammond and said hi (we’ve met a few times so she vaguely recognises me now), and Sadie and I caught up on each other’s super-exciting lives. She has to write two chapters of her thesis by the 23rd, so today’s hangout was a tiny break from work. I knew I needed to leave town by 2 as we were going to see the photopheresis nurses about my line before liver clinic, so we went across to Starbucks so I could get a mocha cookie crumble frappuccino at about quarter to (I said it was a bad diet day), then I went back to the car and off to the QE!

The nurses are completely befuddled by my line’s behaviour, after having had a good go at it. They rang Ram and he wants it out ASAP, so I’m back tomorrow at 12.30 for someone to yank it out of my chest. Fun. Then we went to liver clinic, where we saw Philippa for the first time since before she went to have her baby! She showed us lots of pictures. We got in to see James very quickly and there wasn’t much to say – just told him what had been going on with my mouth and skin, drug changes, sporadic bleeding and he checked that Andy Toogood had made the referral which he has. Apparently this gynae lady is the wife of one of the liver consultants who I think I’ve met only once but it’s always good to have a connection. He wanted some bloods as I haven’t had any proper ones done for about a month, so after he’d advised me against any more fried food, I went and got stabbed and we came home!

Tonight Grandma took us to Miller & Carter because Maureen and Audrey have come down to visit (she calls them “the girl” even though they are in their eighties), so I erred on the side of caution and ate a sirloin steak and a few sweet potato wedges but was generally terrible company because I am exhausted.

It is half past nine and I am going to bed.

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The 15th of June.

Well today I have learned that my body cannot cope with large amounts of fried food in a short amount of time – on Friday, I had a burger, and today I had a veal escalope which was pretty big. I can’t imagine how I might have felt had I actually finished it.

I had a Zopiclone to try and help me sleep, but it didn’t really. Well I got to sleep fine, I just wake up early and get stuck! So I got up and gave Daddy his Father’s Day present (a three month coffee subscription) and card, then watched a bit of Sunday Brunch while I had my breakfast.

We were going out for lunch at Côte for 12:45, so I went back upstairs to get dressed and ready for that, then we spent a leisurely couple of hours having yummy food before taking Christine to her train. On the way home, I thought about doing a condensed sort of workout if I had time after editing the photos from Thursday. It turned out I didn’t really – all the fried food had made me really burpy and I’ve had twelve (yes, twelve) Deflatine since getting home, plus nearly been sick. This does not bode well for my planned visit to Five Guys on Wednesday with Sadie!

The 16th of June.

Another day, another jab in the tongue. Most of my mouth is pretty clear after going back on the steroids, except the one ulcer that is always the epicentre of my oral flares. I was awake at half five so would’ve gone out first thing if I could, but the earliest Mrs Richards could see me was this afternoon.

I decided to work out this morning after my rather excessive past few days, then after lunch and half a Nutella brownie, we went out to the dental hospital. The waiting room wa really busy so we thought we might have a long wait, but I actually got called in fairly quickly. She had a look and agreed it was a good idea, but unfortunately they didn’t have any of the usual, stronger steroid, so I had to have more of the more potent one. My tongue’s still a bit swollen five hours on, but I think it will be better in the morning.

Since we got back, I’ve just snuggled with Oscar and watching things on the box. I’m super tired because I keep waking up so early but nothing can get me back to sleep while I’m on pred. If things go to plan, I ought to be sleeping through the night again by August.

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