The 24th & 25th; Where to begin?

The 24th of August.

Okay. Today. Where to begin? I managed to sleep until eight again, when I looked at my Twitter and saw that today’s Sunday Mercury piece had already started generating traffic. Thought I’d better get up.

I spoke with Julie (who wrote the Cosmo piece) and she’s looking after any other journalists/news agencies that approach me. She’s so good, I’m so glad I have her on my side. I wrote up some blog posts (thankfully, I wasn’t trembling them like I am now) and watched Sunday Brunch while my Twitter essentially went mental.

It’s a really good piece (despite a few inaccuracies which I will correct in a separate post), and now it’s on The Mirror website, itv central and The Scottish Sun so coverage is pretty wide! When I took the photo on Monday, I never imagined any of this – I was just being flippant. It has all been rather overwhelming. I was most shared on the Birmingham Mail website, in the top 5 most read on The Mirror, trending on Twitter in Birmingham, now I’m getting instagram tributes from Germany? Plus a lot of Facebook friend requests – sorry, but unless the circumstances are particularly special, I will not accept you if I don’t know you in real life.

Tonight I’m feeling rather worn out by it all, but I still might take a Zopiclone because I’m not sure my brain will turn off.

The 25th of August.

My sleeping in pattern has not continued. Even with a Zopiclone, I woke up at five, boo. I got a tweet from a chap at BBC Radio WM about being on there between 10:30 and 11, so I thought I’d better get up when it got to about eight.

I talked to Adrian Goldberg, rambled a little bit and had to explain some things, mainly GvH – it can all be found on iPlayer here at about 1 hour 50?

Grandma had to have a scan of her leg today as it’s swollen and it seems like she has a clot-like thing but she’ll be fine with some treatment, no surgery necessary (I don’t think). That was all done by lunchtime, so this afternoon, we went to get a hamster! I fell for one that needed to be rehomed (a child decided they wanted a hamster then changed their mind, basically) called Harlequin. I will not be calling him Harley for short as he is not named after a Rizzle Kick. He is mainly a pale sandy colour with white around his middle. There was another called Joey but he looked too much like Toffee who resides at the bottom of our garden.

We need to reorganise his cage ’cause it’s not quite right at the moment, but we’ll have to wait until we get him out to do that (they put him straight in the cage because he kept escaping from the cardboard boxes). I don’t want to post a picture of him through the bars because it looks like he’s in a tiny prison.

Becky and James came round and had tea and biscuits, and for some reason I was really offended by them not coming directly to the kitchen where I was making the tea, and talking to Mommy in the living room instead, so I was really mean at first and I’m not sure why that happened, because it was kind of unreasonable of me. Anyway, they told us about their weekend in London, and we talked wedding a bit.

Tonight, Daddy and I are going to try and watch another episode of The Honourable Woman. 3 left!

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The 22nd & 23rd; We could be so great, in the fullest sense of the word.

The 22nd of August.

Today has been really rather busy. Well, this afternoon has, this morning not so much. This morning we just washed my hair as I felt like it hadn’t been done for ages. 

I needed to get another card for Elle and Ben as the one I had has miraculously disappeared, so before I met Jo for lunch at half twelve, Mommy took me to Paperchase, then over to the Arcadian, to Caffé Chino. It is so adorable in there! I felt very much like I was in a Studio Ghibli film, with all the puffy buns. I had a coffee which was surprisingly not horrible while I waited, then we just had a bit of a leisurely chat about life and current silliness, and imagined me with an army of dwarf hamsters. She had peanut buns and I had a warm ham and spring onion bun and it was really yummy.

Daddy picked me up and we got home at half three, just time for me to fit in a coffee before the photographer from the Birmingham Mail arrived at four. He was very prompt, we took loads of photos – inside, outside, glasses on, glasses off. I have no idea what they’ll use, or how I’ll look. Plus we had to do 30-60 seconds of video in which I sound incredibly cringe-worthy and will avoid at all costs. The Observer came out today with the cancerversary piece, which is on page 37.

Then tonight I was out again meeting Elle for dinner! We went to Wagamama where I had coconut seafood broth and wok-fried greens. The broth itself was a little bit spicy for me, so I ended up just finding all the seafood (including mussels and squid tentacles for the first time! How adventurous am I?) and leaving the soup. She really liked the present I got for her and Ben, which was very pleasing, and we just ate our food really messily and had coffee (I had decaf), then I inhaled some chilli from something that was cooking as we were sat right by the kitchen, so we went outside to wait for Mommy to arrive with the wheelchair.

The 23rd of August.

I actually managed to go back to sleep twice this morning so I didn’t get up until twenty past eight! That is the latest I’ve slept in months.

This morning I read the paper and piped the icing onto the cakes that Mommy made yesterday for us to take to Boldmere Court’s summer fête this afternoon. We left as soon as the qualifying finished, and at some point on the journey there, they all fell over and got smushed. So they looked terrible by the time we arrived. Mommy opened the lid in Grandma’s room and made angry noises. 

There were so many wheelchairs, we ended up just staying out of the way until Daddy and I had to leave to go to the cinema to see Lucy and it’s really good. Scarlett Johansson is excellent and the film itself poses a lot of questions about life and the purpose of it, and may inspire a blogpost, I’m not sure. It just made me think a lot about how life is a gift, and what are we doing with it? We could be so great, in the fullest sense of the word. The man who was sat next to me breathed incredibly loudly, which was quite distracting during quiet moments.

My leg muscles are so pathetic – I can barely get out of the armchair. Going to have to start using the resistance bands again or life will become impossible. I’m down to 30mg of pred now, so we’re on the way back down, just slowly.

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The 20th & 21st; Frankly, I am sight to behold.

The 20th of August.

I really looked at myself today and realised that things with my body are not good. I was kind of taking each issue separately, but all added up, it’s pretty bad. I’ve been bleeding for a month now, am still very trembly, my memory has turned to mush (I’m fairly sure this is all some fucked-up hormone stuff – the menopause clinic on the 2nd cannot come soon enough), I’ve lost weight and muscle mass due to the steroids and I’m far too thin for my liking – I’m going to have to really consciously up my calories, even though eating too much of anything makes me burp ridiculous amounts, my facial bruising is taking its time to go away – I’ve basically forgotten what I should look like. Frankly, I am sight to behold.

I didn’t wake up until five, which was good! My day has been very sedentary, as the hole in my groin hasn’t fully healed, so I’ve been watching TV and reading The Goldfinch. I’ve got about 250 pages left, and it’s all a bit intense and I had to stop and have a break!

I have deflated enormously. It’s so dramatic.

The 21st of August.

Oh tonight I am weary. Awake from four again, and I have pretty much fully deflated now. Except my left wrist is still slightly swollen and we’re a little bit concerned that I may have a hairline fracture from the fall or something. 

It’s been really quite a busy day – this morning I was emailing Dan from the Sutton Observer, then I went into town with Mommy because she had to give blood and I needed some wrapping paper, so I sat in Starbucks and read The Goldfinch while drinking a terrible flat white while she did so.

When we got home, we had lunch and I finished the book (the final passage is possibly the most beautiful thing I’ve ever read) and we baked the gingerbread soldiers and chocolate and vanilla pinwheels from John Whaite’s book. He replied to my tweets again! Bless him.

I also spoke to Alison from the Birmingham Mail/Sunday Mercury and she wants to do a piece this week, and they’re coming round for photos tomorrow afternoon. Tomorrow will be busy too.

Today has been GCSE results day. On mine, I went to school, got my results, then went back to BCH to start chemo, and that evening we had a takeaway Caspian Pizza in Bay 3.

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The 18th & 19th; Happy Cancerversary to me!

The 18th of August.

Happy Cancerversary to me! Seven years ago, I was diagnosed with one of the worst kinds of leukaemia one can get. Three stem cell transplant (two intentional, one not), one liver transplant, one biliary reconstruction, a superbug and all sorts of other shit later, I am still here. Some people seem confused as to why I celebrate this day, but why should I be miserable about something that yes, will ultimately make my life shorter, but has also made me a better person and given me so many wonderful people and experiences? I’m still alive and for the most part, I’m okay.

I started off the day with a wee stack of american pancakes with caramelised apples and icing sugar, then I drank coffee and watched This Morning while Mommy went to see Grandma. This afternoon, we went to Madeleine’s in The Cube for lunch (good sandwich, slightly disappointing cake and coffee, although Mommy said her cake was nice). We then went over to the Bullring and got a number 7 charm from Pandora (new collection and very handy as my links to charms are becoming ever more tenuous). We went into Selfridges to see Mary at Chanel but she must be on holibobs.

Then I had a phone call from Sandeep saying my venoplasty is tomorrow morning so could I come in tonight? So we had to go home and pack the bag before going to Purnell’s Bistro for dinner!

When we arrived at the restaurant, Daddy was already there, having a whisky and soda. I had a white peach and vanilla bellini, then the ham hock pressé and the smoked haddock fishcakes, then there was no room for pudding so I had a hot chocolate and Daddy had a green tea, and now I’m back in YPU!

The nurse has been and done all my bloods and swabs, now I’m just waiting for whichever poor soul is on to come and ask me loads of questions and prescribe all my drugs. It’s half eleven now, I wonder when they’ll arrive.

The 19th of August.

Today has been very boring as it has just involved me waiting for someone to come and get me for the venoplasty.

I was going to wait for the doctor to arrive before going to sleep, but I gave up at some point past midnight and I’m glad I did because she didn’t turn up until half past four. So I had a few hours of sleep, but once she was gone, I was awake.

I was gowned up and had my DVT stockings put on pretty early as I was believed to be on the morning list, seeing as I’d been nil by mouth since midnight. Mommy arrived and Sandeep came round with her fellow doctors and said that because I’ve had klebsiella, I will always be last on theatre lists. So that was good to know. Orlando popped in to make sure I was okay after Oscar – I think I am getting there. I can think about him without crying now.

And we just waited. Watched some tv, read some more of The Goldfinch, tried to have a nap and ignored my dry mouth and grumbly tummy. There was no nil by mouth sign outside my door, so people kept coming and offering me breakfast and water and lunch and warm beverages and every time I was like GO AWAY I AM NIL BY MOUTH WARGH. They came for me at four o’clock, by which time I was wilting.

Got down there, signed some forms, had a little chat with Dr. Riley who was going to do the procedure, then I got taken through. There was some palaver about contrast dye because I’m allergic to the standard one, but we eventually got started at about half past five! They gave me midazolam and morphine this time, so I was totally out of it which was much nicer than last time. When it was over, I went to recovery, and I got back up to the ward very quickly. I had to stay relatively flat for two hours, but I was able to be propped up enough to eat a pretzel and a pear and drink a lot of water. Then I was allowed to sit upright, and by twenty to nine, we were gone!

Now, we wait for me to deflate.

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The 16th & 17th; This must be what real grief feels like.

The 16th of August.

This must be what real grief feels like. I know I’ve known countless fellow patients who’ve died, but this is my first really close family member death (yes he was a member of my family). I was too young to really appreciate Grandpa, and I didn’t really know Nain. Oscar has been my constant companion and little kitty friend for as long as I can remember, and it just feels wrong without him.

We went to pick up Becky and James from the airport and they told us all about Barcelona. They came in for a cup of tea, but I was dreadful company because I just don’t want to communicate with anyone.

The excess fluid is also causing me extra breathing problems, combined with the utter depletion of my muscle mass from the steroids, and total lack of sleep, I’m feeling almost as weak as I did just after my liver transplant.

I’m absolutely petrified of it getting worse. Waiting to see how much worse the next day will be.

The 17th of August.

Today has been better. I had a pretty good sleep, and I spent my morning in my pyjamas, waiting for an ASOS delivery of leggings, long vests and men’s cardigans because my body is such a ridiculous shape at the moment.

Mommy helped me try them all on, some stuff will go back which is always good for one’s bank balance. Then she washed my hair, and this afternoon I watched the finale of Utopia.

I’ve also been trawling through my hard disks, trying to find a nice picture of Oscar to get framed, and doing some really boring phone sync things.

I have a theory that my burpiness is connected to my bleeding, as excessive bloating/wind can be linked to oestrogen and cortisol levels, both of which I take and I’m bleeding when I’m not supposed to which seems to coincide with the burping.

So we’ll put that forward as a theory at the menopause clinic in September.

There are patches of natural skin colour on my face!

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The 14th & 15th; My heart is broken.

The 14th of August.

My heart is broken. This morning all the doctors came and said that the scan will be tomorrow, have to be nil by mouth from 5am in case it’s in the morning, fluids overnight. They said I could go home until 10pm if I wanted to, so when Mommy arrived, I told her not to bring anything in up as the doctors had just been.

So she came up and I told her what they said, then she told me that Oscar died this morning! My kitty, oh my kitty. My parents found him this morning and he wasn’t right, and they took him to the vet and he had to go to sleep. He’ll be cremated and put in a box and we’ll decide what to do. But I didn’t get to say goodbye. I am devastated.

And then I didn’t know what to do. I didn’t want to go home and I didn’t want to stay here, so we went and had afternoon tea at Selfridges and buy some chocolate and came back to try and make a kitty montage.

My Oscar is gone. I’m not going to be able to sleep.

The 15th of August.

Well I’m home, as promised, but I’m not scanned, as also promised.

I didn’t go to sleep until the fluids had gone up which was past midnight, and I had to be nil by mouth from five, so I’d set an alarm for half past four which I woke up before. So I had about an hour of sleep before I had to eat my pretzel and drink my juice, and then there were things happening on the ward so I was done.

I was told I was second on the list so I put my gown on, then at about half ten the nurse came to tell me that there’d been an emergency on the table and I’d been cancelled, so I had to wait to chat to the doctors who would be round shortly but then I could go.

So being there was a waste of time and I could’ve said goodbye to Oscar. Okay I can’t write about this because I just spent ten minutes buried in Mommy’s shoulder, sobbing hysterically. Frankly, everything is terrible: my face looks like a moth, and when the bruising disappears, I’ll still have a moon face, the steroids are still too high for my liking, I’m losing weight which I don’t want to do but I’m terrified to eat anything because everything I consume seems to make me burp for hours, my arms are full of fluid which makes my skin really tight and sore so it keeps breaking, and lying down really hurts, my scan got cancelled, and my cat is dead.

I don’t know when the scan might be now, but I’m at clinic on Wednesday again so if we’ve heard nothing by them, we’ll get it chased. We left the QE at about half one, and went to BCH to visit Oliver and Fran and William and Sarah who all happen to be on Ward 8. Oliver’s skin looks so sore, the poor mite. We just talked about everything that’s going on, and we saw Sarah Lawson and Alison from BMT team! So some extra unexpected catch-ups.

We had a look at men’s cardigans because none of mine are big enough to accommodate my arms, and I managed to find one.

Faye, her husband and band on kitties have sent me beautiful flowers.

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The 12th & 13th; “You – only you – will have stars that can laugh.”

The 12th of August.
So I’m at home tonight, but for the next few days, I’ll be doing this from hospital, where I spent most of today.
I had the best night’s sleep I’ve had in ages – still awake at half four, but I felt well rested. Was at the QE for half eleven, but after explaining/showing Jo my arms, she wanted to Igor to see me, so we had to go over to clinic. Thankfully, Ram was also there and he remembers this from last year so he was very happy to just get Igor to see me, then organise the appropriate tests. Once we’d all had a chat, Igor went to see the imaging doctors, came back, and the decision was that I’d have my ECP today, go and be “officially” admitted onto YPU, go back for more ECP tomorrow morning, then be an inpatient in which case I can get a venogram done by Friday evening, whereas as an outpatient, I’d have to wait four weeks.
So that’s what happened! Had photopheresis, went over to YPU, then it was just waiting around for admin stuff to be done. There is another girl in the bay called Lucy with ALL, so we and our mums were chatting, imparting wisdom. We finally left about half six!
Popped into M&S on the way home for dinner and food for me to eat while I’m in, then after dinner we’ll pack my bag and it’ll be bedtime.
Robin Williams was pronounced dead this morning. His daughter posted the most appropriate quote:

You – you alone will have the stars as no one else has them. In one of the stars I shall be living. In one if them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night… You – only you – will have stars that can laugh.

The 13th of August.
Tonight I write from a cubicle in the TCT unit at the QE. My day has been largely uneventful, so this will not be long.
We came up here before ECP so they could do some obs, then I went to 621 and had to tell the falling-on-my-face story again. Was done and back here by half ten. We unpacked, then Mommy had to take Grandma to lunch club, so she left.
Doctors came to see me to make sure I was still fine and assure me they would chase up the scan. Then nurse Liz came and said it wouldn’t be today, and I could go home until eight, but Mommy wasn’t going to be back until 3, so it was pointless.
This afternoon I basically read The Goldfinch, occasionally distracted by Orlando, Lucy’s mum, or new people coming into the bay. I was also told I was being moved into a cubicle because I have had klebsiella and it could its ugly head at any moment, they have to isolate me for the safety of everyone else. Fine by me – I love being in a cubicle. Means I can do as I please.
Mommy and Daddy have both been and gone, Mommy and I texted during Bake Off, and tonight I have the dream team of Michael and Del on tonight so I may well get some sleep (or as much as is possible, anyway).





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