The 19th & 20th; A very long day.

The 19th of March. 

It’s been a very long day. Left New Street at ten to eight, got back twelve hours and twenty minutes later. Awake at twenty past five. Zopiclone required for sleep; my brain is so whizzy. 

My train journey down was uneventful, just was left waiting for the assistance man at Euston to meet me when the train arrived. He was nowhere to be seen, so some very kind people asked the train manager for help and he got the ramp for me. 

Cab to Anthony Nolan was easy. He knew where I wanted to go, so left me at some large gates where I was pressing buttons in the hopes of being let in. I was about to call someone, when Billie from AN saw me and buzzed the gates open so I could come inside. I was the first one there, and Billie, Liz and I were joined by Craig (AN fundraising) and the other Young Ambassadors – Will, Amanda, Emma and Megan. 

There was a welcome and generic ice-breaking stuff, and the morning was spent learning about the different areas of AN – first the history, how donating works, and what each department does (fundraising, volunteering, public relations ie talking to MP’s, and media/press). Obviously all of this was interrupted by us all asking questions and adding our own stories. 

There were M&S sandwiches for lunch so we shared those out, and a photographer had arrived so we all took turns having our portraits done (she was very sweet, telling me how photogenic I am and how great I look on camera 💁🏼), then we had a group photo outside where we snuggled together like penguins in a huddle. 

The afternoon session began with a session on register development (how we get more donors), then we talked about how to take care of ourselves when in our role, to make sure we don’t have a breakdown, essentially. Then the most fun part, presentation skills! Things to be aware of when we talk. We had to prepare a 2-3 minute talk about a moment in which we were proud of ourselves. I talked about GCSE results and it was excruciating because I hate being put on the spot. We all had issues. 

And we were done! Finished an hour early so I got a taxi to St. Pancras where I had some tasty dinner before returning to Euston for my busy train. I hid behind my book. Just 100 pages left!

The 20th of March. 

Zopiclone means I am sleepy. I set my alarm for 9.45 but I snoozed until ten past ten. Thankfully Sunday Brunch started late so I didn’t miss any of it. The house was quiet because Mommy was out at the NEC and Daddy was down the garden, so I pottered about, said hi to Monica, made sure she had enough food and water, then got the same for myself. 

Most of my morning was spent writing. Writing about yesterday, which took a while, then writing the blog post that I would’ve done yesterday. So yeah, lots of writing. 

Once finished, I had my lunch, and Mommy had brought me a bonus brownie from the craft show (?) so I had my second one in two days. Oh well. 

My afternoon was dedicated to finishing The Steel Kiss. Even on high alert, I didn’t expect the twists. I was right about one aspect I thought seemed dodgy but that was the only thing. Also, I plan to question Jeffery about the epilogue. Will have to be careful in how I phrase it though, I don’t want to do any spoilers, especially for the die-hard Lincoln Rhyme fans. 

Since then, I’ve been having a very restful faux-nap. Eyes shut but brain awake. Cosy. 

The 17th & 18th; Four years of hard work and photopheresis completely undone.

The 17th of July.

I think 40mg is enough. My hands seem calmer tonight. It still hurts to dry my hands after I wash them but when I don’t touch them for long enough, I can tell that they’re less angry.

I slept fairly well as I took a Zopiclone, but still got up at eight. This morning I’ve been emailing Dan from the Sutton Observer about a piece for next week, and looking at my notes from BCH. They’re not organised chronologically, more like different kinds of information are clumped together, like emails about my liver transplant, physiotherapy notes, drug charts, so I’m learning things in a very disordered manner.

This afternoon I thought I would have a go at a little workout to see what I can do before Danny comes for our final session tomorrow. I cut out some things completely, like kettlebell swings and press-ups, but for the most part, I think I coped quite well.

I watched the first episode of the new series of Utopia, need to watch the second ASAP! Tomorrow morning, I think.

I hope Francesca emails me back tomorrow.

Oh and I got a letter from Mrs. Wager from Handsworth – she says they’d like to have me speak to the girls about bone marrow/organ donation which I will definitely be taking her up on!

The 18th of July.

Oh the heat has been oppressive today. I’ve been awake since about half past three with the rain and steroids so it hasn’t been the most comfortable of days.

I spent my morning watching the last three episodes of Hannibal which were all suitably disturbing, then I saw the last bit of This Morning, which I’m glad I didn’t watch all of as Marvin and Rochelle are terrible at presenting and watching them makes me cringe.

Danny was a bit late due to traffic but that was fine, I had nowhere to be. It meant I did only have my lunch at three though which was many hours after breakfast! It was our last session so we did my measurements which I need him to send me, but I know my waist is definitely smaller because of my jeans. I was quite glad to spend some of the session not actually exercising as it was just so hot.

After he left, I got out of my delightfully sweaty clothes and went round the corner to Costa for a coffee cooler, but I had to come straight back because being outside in the stillness and heat was horrible.

So I have spent the evening inside, avoiding the sunshine and trying not to stare at my hands. I am not sure that 40mg is enough. This amount of pred is such a setback – four years of hard work and photopheresis completely undone. What a waste.

The 25th & 26th; I have clinic with Ram on Monday and it is not going to go well.

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.

The 21st & 22nd; Coffee can only perk me up so many times.

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.

New kitty pyjamas!

The 28th & 29th; I want a big sleep and a puffy dog to play with and a hug.

The 28th of May.

I feel a bit battered tonight. I was up at half past seven to be at the dental hospital at ten. I saw another new person who had a look, wrote some notes and went to get Mrs. Richards and Jon who saw me last time. They  asked me how I felt about having the injections again just to really kick the ulcers out. Deeper this time. So I lay there again and let him do four more injections, deep in the right side and right in the tip of the left side, then he had to hold it really tightly with some gauze. I think my body went into slight shock afterwards – trembling, and now I’m still cold. I hope sleep cures this. The local wore off ages ago, but because the needle went in so deep this time, it’s really bruised and still swollen tonight, whereas last time it was fine by mid-afternoon, really.

This afternoon, I watched the last two episodes of Hannibal and now we’re watching BGT and I’m shattered. I’m hoping I feel better tomorrow for training with Danny.

The 29th of May.

I am a bit knackered tonight – my tongue is not 100% yet and I had training with Danny today.

This morning I wrote up a couple of blog posts and gave the cat a good brush because he has been a howly monster.

Danny came at one and worked me really hard for just over an hour, doing kettlebell snatches, cleans, clean and presses and chest presses with my feet off the floor. Burned over 600 calories and now I am pooped.

This afternoon, I watched Nashville and looked at a couple of properties we’re thinking of going to on holiday. We also proof-read some reports for Becky,

I want a big sleep and a puffy dog to play with and a hug.

The 24th & 25th; I hate that my lungs don’t permit me to fly.

The 24th of May.

Oh, this time a week ago, I had the most beautiful view. Today, the weather has resembled the apocalypse. Never mind!

I got up and watched Saturday Kitchen with my breakfast. I was able to eat a muffin! Seriously, you can’t understand my level of joy after being on porridge for so long. I can’t really do porridge now because although my tongue and cheeks are improving, the lips are still really sore.

This afternoon, Mommy went to visit Grandma, and I worked out while Chromecasting the first two episodes of Alphas onto the tv. It was obvious that I hadn’t exercised for a week – I burned 748 calories which is more than usual.

I had to coax Oscar inside because the black and white cat was in the garden and I didn’t want there to be a fight. Then I shut him inside because rain was imminent.

We had a FaceTime from Christine and Daddy in Italy. I hate that my lungs don’t permit me to fly – I can’t be at the most important day in my cousin’s life so far. A massive family event, and I can’t go because my stupid body won’t allow it. And what’s worse is that it meant Mommy was forced to stay behind with me. It’s not content ruining my life; other people suffer too.

The 25th of May.

Today has involved being really quite angry at the world. Michael Gove deciding to remove American literature, then the misogyny-fuelled killing spree in California, it does not fill one with faith in humanity.

I watched Sunday Brunch, then spent my afternoon writing up blog posts from holiday. And tonight we picked up Christine and Daddy from the airport, and they’ve been telling us all about the wedding.

The 14th & 15th; I can’t wait to get away. Far away from all of this.

The 14th of May.

It’s over now. Well it will be soon, once the news stop reporting it. I am sad that he has gone, for those who loved him and will miss him every day for the rest of their lives. But a small part of me is somewhat thankful that I won’t be having the word “terminal” rammed down my throat by every media outlet in existence. There are a lot of terminally ill young people still out there and I don’t know about them, but just seeing his face all the time is like someone sitting on my shoulder saying “You’re going to die pretty soon too, and guess what? No one will care nearly as much as this, and you’ll be forgotten like a passing breeze”. It feels like there’s no point in me even trying to raise awareness of my own condition, of all the shit you go can go through when the “cure” goes wrong. When what saved you will kill you. Because it’ll just be forever compared to what he did. So why bother?

I left Twitter and Facebook and the rest of the media to carry on, and I sat in Bad Apple and let James paint my hair all different colours before Katy Perry. I met Rachel at the LG about twenty past eight, and we got drinks and went to find our seats which were actually really good! She played the oldies and the goodies and I did a lot of dancing in my seat. Roar and Teenage Dream were probably my favourites. Go Katycats!

The 15th of May.

You would think I’d have a lie-in after the late night I had, but no, I was up at eight. A dress that I ordered from G-Star came yesterday and was too big, so I wanted to exchange it for a small before we go away. The shop in the Bullring is actually completely inaccessible to disabled women – the ladies’ clothes are up a lot of stairs and they have no lift, which gives the impression that I am not the sort of person they want wearing their clothes. The sales girl had to go and find me the right size, and I just had to sit and wait. So that made me feel good about myself.

We needed to do that early because Oscar had to be at the vet at ten past eleven, and Danny was coming to train me at one. We did a mini circuit of kettlebell squats, swings, snatches and russian twists. I was knackered by the end. Then I had a phonecall at half two with a chap called Dan at the Sutton Observer just to keep him up to date with life. I was sorry I hadn’t much to tell him.

When we hung up, I watched Hannibal and last night’s Masterchef with Mommy, then I got out my clothes for the week.

I can’t wait to get away. Far away from all of this.

The 10th & 11th; I drank enough milkshakes to build me up in hospital to last me a lifetime.

The 10th of April.

I had a terrible night, not getting to sleep until about four am, but then getting up at half nine because I don’t like my body to get too out of routine. If I sleep late then I won’t fall asleep until late at night, and the cycle gets worse. So I’ll have an early night tonight. I only remembered about the existence of the Zopiclone downstairs at about three and by then it was too late.

I didn’t get properly dressed until lunchtime after Mommy washed my hair. This afternoon, I exercised, because if I hadn’t, I would’ve wanted to curl up and sleep and then cry because I’d be incapable of sleeping.

The 11th of April.

Last night I took some Zopiclone and therefore had a fabulous sleep. I got up at eight because a nurse was coming at ten to flush my line (Anne-Marie couldn’t do it this week). After she left, I wrote up a blog post and was just watching the news when Danny arrived for training.

Today we did some new boxing combos which I apparently have a natural aptitude for, so go me. I am good at punching stuff. We also did kettlebell swings for the first time which are fun but I have to be careful to not be too vigorous lest I let go and fling it into the wardrobe.

When we were finished, I stretched, then had some lunch. For the rest of the afternoon, Mommy and I watched tv and I’ve been researching protein-based snacks for post-workout that aren’t weird. I think it will have to be some sort of jerky, because I drank enough milkshakes to build me up in hospital to last me a lifetime.

The 23rd & 24th; I can’t wait to feel strong again.

The 23rd of March.

Well I think I am done with all this computer business. I’m sure there are more jobs I could find but I will not be doing them right now.

So today I’ve pretty much just been finishing off sorting out iPhoto. I did some blog updating and ordered Mommy’s Mother’s Day present.

I promise this will get more interesting again now I’ve finished all the computer stuff.

The 24th of March.

A much more interesting day! It began well with news from Heidi that a company she works for, The Real Adventure, have selected Anthony Nolan as their charity of the year after she made a pitch about them/me because she is a fabulous lady and I love her dearly.

It was nice not to spend my morning staring at a computer screen, but instead to leisurely drink my coffee and read a bit more of Trouble in Mind.

Danny, the new personal trainer came at one, and we spent about an hour working out and talking. We were both surprised by the strength I’ve retained, even though I haven’t been working out regularly since July. My core is still impressive – I was able to do the plank for 46 seconds which I believe is quite good. My legs are what let me down so I really need to focus on them.

He only left at just after two, so I was pretty hungry (got to start keeping a food diary again, blah) so I had some lunch and caught up with the ridiculousness of TOWIE. I also had a delightful surprise in a moment in which some junk from my lungs decided to surface and I had to cough it up. My favourite.

I am tired but it’s good.  Danny doesn’t think it will take long to get me back to where I was and I hope that’s the case because I can’t wait to feel strong again.