Archives For August 2014

The 28th of August.

I woke up at about ten to three, really angry because I’d had a dream that someone nominated me for the ice bucket challenge (it would be categorically stupid, by the way) and I’ve been pretty much wide awake ever since. 

More Photopheresis this morning, then went into town afterwards where I got a blanket-y type shawl thing and two jewellery trees from M&S as the only one I have is too full and all my necklaces are getting tangled. 

This afternoon, Grandma went back to hospital because her leg swelled up again which wasn’t supposed to happen, so Mommy went with her and I tried to make friends with Hamilton but he but me again. I think we’re just going to have to be go back to Pets at Home and just find out what happened with his previous owners, like if they had grabby grabby children. 

I have been so tired today – the kind of mood where I just want to eat all the things. Oh and a physio came to see me during Photopheresis this morning to talk about combatting the muscles wastage but we are basically doing everything we can do – squats, deep as possible, little and often. And we now have the wonderfully humiliating addition to our bathroom – it’s a frame to fit around the toilet so I can get off it more easily. 

I’m basically 90 years old.

The 29th of August.

Lorazepam day. So I didn’t get up until which was ever so yummy. I had nowhere to be, nothing to do, no brain function necessary.

Grandma’s scan revealed that she has a clot on her lung, so she’s got to go back every day? She has to have Warfarin and avoid green vegetables (which I was craving and ate an entire box of M&S’ triple layer courgette thing).

This afternoon we spoke to the Pets at Home lady and she gave us some advice regarding blankets-as-transportation so Hamilton has been out in his ball for a good two hours tonight! Plus I sprayed the bars with yucky-tasting stuff so hopefully he will be put off chewing them quite so much. We will become friends, in time. I must just dig out my patience (it’s very deep, and I don’t have a lot of it). 

Today we have gone down to 25mg of pred. Slowly but surely. I hope coming off it also helps with the fluid retention because my feet fucking hurt.

Every so often, I keep hearing Hamilton bash into something. Thankfully, the ball is secure. He is daft. 

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The 26th of August.

Oh tonight I am so trembly STOP IT. At least I had an automated phone call from the Women’s Hospital, asking me to press buttons to confirm that I would go on the 2nd of September. I most definitely will.

Today has been kind of excellent. Apart from being back to my normal waking up routine, but I’m just used to that now. The first nice thing that happened is that I was checking my Twitter, and on my Timeline, there was one from Chris Riddell, whose illustrations I have loved since I read The Edge Chronicles when I was about eight. He posts multiple pictures of his sketches daily, and one of the ones from today said “For Kathryn.”

One of my followers emailed him about me yesterday after seeing my wish to be drawn by him on my bucket list, and he’d done it! I made a loud squeak and Mommy asked what the matter was, and I explained and started crying tears of joy. It is beautiful and I love it. 

Then later, Nat Morris who I know from way back in the day, rang me and she used to work at heat tv, and has emailed Lucie Cave so I’m probably going there in October? I have emailed her and her assistant so I hope to hear something back soon, considering Lucie emailed Nat this morning. So I am a very happy girl.

I still can’t wear my Pandora bracelets – they squish any fluid up my arms. I might have to get bigger sizes. Which will be expensive and annoying..

The 27th of August.

For once, I was sleeping at 6am when my alarm went off because I had to get up to be at the QE for Photopheresis at 9. My hands were visibly shaking.

That all went very easily, started reading The Miniaturist which feels like it will be good  on the way home, we went to Pets at Home to get a tube for the hamster cage (it looks unstable so it’s gone back in the box) and some treats. I have renamed him Hamilton because I don’t like Harlequin and I can shorten it to variations of Ham which is way more fun. It’s the same amount of syllables; he won’t notice. 

Most of the afternoon was spent getting him out of the cage (lifting the entire thing into a playpen, coaxing him out, then taking the cage out again) because we needed to rearrange all the sawdust etc – making him a toilet area, making the shelf bit level (it still isn’t) and taking out the wheel because it’s too small for him. He keeps gnawing on the bars though which is a) bad for his teeth and b) annoying. 

Becky came over and we basically just talked wedding and engagement party. By the time she left, I was weary, and tonight I’m absolutely exhausted. Cream-crackered. 

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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 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 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 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 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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