Archives For July 2014

Boldmere’s inspirational Kathryn isn’t giving up despite her unique, fatal condition.

The 27th of July.

A much better night. I only woke up once, went straight back to sleep, then woke up again at half past sux, which is a lie in for me right now. I actually got up about an hour later, feeling none of the horrible internal trembles I had all day yesterday, but still not 100%.

I was supposed to have Ang round at half eleven as she’s home this weekend, but I was really not up to being sociable at all – I would have spent her visit wanting her to leave so I could nap, which is hardly fair. I will see her next time she is back.

Grandma was here today, to join us for lunch and to sit on the patio. I think it’s nice to escape from Boldmere Court for a change of scenery as well. Becky came over with a wedge of birthday cake for us, so I had some for pudding and it was yum. I didn’t have any last night. 

After lunch, I finished reading Bird Box which I bought the other day. It was alright – I finished it more out of curiosity rather than enjoyment, if you know what I mean. I wouldn’t recommend going out and buying the hardback.

Then I went upstairs for one of my pretend naps, although I think I did actually drop off at one point as I woke up jerking my leg, so I definitely had some sort of rest.

ECP at nine tomorrow so early bed. The skin on my hands has been so damaged by this flare that I can see scars now.

The 28th of July.

And I’m back to being a quivering mess. Been awake since half three, was out of the house at eight. Going to have to do it again tomorrow because even though I’m not supposed to start treatment until two, I need a couple of bags of blood beforehand, so it will be a long day.

Today was a bit tedious because the line wasn’t sitting very happily so we had to run a bit slower than last time. On the way home we popped into Tesco for brown paper, parcel tape, birthday cards and grapes – a weird basket, but I needed to wrap up some shoes to post and Grandma needed a card and the grapes! Home for lunch much later than we thought.

I was going to work out tomorrow morning, but since that plan was scuppered, I decided to do it this afternoon instead. I’m definitely not as strong as I was before we went away and I think it’s the total lack of sleep and possibly not eating quite enough. I think I can relax on worrying about fat/wind now.

Oh tonight I’m just shattered. I’m hoping some blood might perk me up a bit too.

The 25th of July.

Day did not start brilliantly with me nearly inhaling my mouthwash, then my body was having to work harder in the heat so I was having trouble breathing and my pulse was 107 at rest, but it slowly improved over the morning.

Becky came over with a copy of the Sutton Observer, because I’m on the front and pages 4 and 5. I’m pleased with it; it’s a good piece. “Brave Kathryn” strikes again!

The nurse came to flush my line and brought a student with her which is always fun. I do not envy them, having to drive around in the heat all day! Ugh.

I was back at a Bad Apple at half twelve to have my hair dyed, and we’re back to silver/grey I had really nice conversations with James and Andrew, and Andrew was showing me pictures of a very cute and fat baby bulldog. Becky appeared by my side at the sinks as she had her appointments to get her hair and nails done before her birthday today, and her time got changed because Craig was poorly, so we ended up actually finishing at the same time and we gave her a lift home. 

Got a pretzel from M&S on the way and finally ate lunch at about half three! For the rest of the day I’ve been pretty floopy – the heat has made my feet extra puffy so I’ve got them on a stool tonight. You can make dents in my skin.

The 26th of July.

Conpletely wilted. I have been awake since half past one this morning and I only fell asleep about twelve. We changed my dressing before bed and some of the new one went on raw skin which was sore and stinging. Foxes were screaming outside my window. It was really hot. And I just couldn’t go back to sleep! I lay on my back with my feet up against the wall to try and alleviate any remaining puffiness from yesterday, listening to podcasts, the new Josh Record and Jason Mraz albums in their entireties, concocting blog posts in my head and trying not to get insanely bored/hungry.

I was supposed to go to Tesco with Mommy this morning but was in no fit state to do so. She went, and I made a very strong coffee (the first of several). Becky came over with a cheesecake that needed to go in our fridge, and then I spent the rest of the morning trying to get through the paper. Once I’d finished the main section, I made lunch and I felt able to go out, although I stayed in the wheelchair. I got some of the lime and elderflower Kopparberg that I had on holiday, and some of a particular chewing gum that I have been searching for in vain until now.

When we got home, I read the rest of the paper and got changed, then went over the road. Gave Becky her cards and presents, was sociable for a few hours and managed to stay until cake time, but by nine, I was flagging so much, it was impossible to stay any longer. All day I have felt like my bones were quivering inside me, I think due to a combination of caffeine and exhaustion. It’s been horrible, uncontrollable.

Now I need to go to bed.

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The 23rdof July.

Today has been terrible, and I’ve just felt weird and stressy and wrong all day so I’m glad it’s nearly over. On terms of things that have happened, it’s been good!

I had the dental hospital this morning, and I don’t need to go back for another three months, then we went to Boots, as Mommy’s been bitten by something particularly unpleasant which has become infected so she’s got some clarithromycin. I’m so glad bugs don’t find me tasty. We then got Becky’s birthday presents (and I got something for myself too), then we went to Boston Tea Party for lunch as we’d parked near there this morning. I had eggs florentine and some fresh orange juice, and we eavesdropped on some (we think) med students who were getting advice on their theses and one involved bone marrow aspirates.

We came home briefly so Mommy could phone Grandma and I could try to get a grip on myself before we went back out, but I didn’t really. We had appointments at Bad Apple with Kayla and June at half three, but wanted to visit the new coffee shop that’s opened down the road called Under Pressure first. It was very good, and the chap running it certainly knows his stuff. We both had nice flat whites, and I had a chocolate Scandinavian bun which made my fingers very messy.

I gave Michaela the unenviable task of fixing my whole life with a haircut which she did a good job of, no photos until Friday though when James dyes it. Mommy and June have become firm friends and she likes her hair so I’m really glad she finally took me up on my offer to take her!

I really hope I feel better in the morning.

The 24th of July.

This morning I woke up feeling much more positive, I made the conscious decision that there is nothing to be done about this steroid situation, and I cannot allow how I feel about my face dictate my life because that is ridiculous. When Ram is back, I will have stern words with him, but then we will have a productive discussion about my treatment and how we move forward. Until then, I will continue to live life as my fabulous self.

I spent the morning working out in a fairly relaxed manner due to the heat, so it took a little longer than normal and I was disgustingly sweaty by the end, but I felt really good and energised so it was worth it.

I then got changed into a loose floaty dress and rinsed all the sweat from my hair before making myself some lunch. While I was doing that, we had a visit from an old friend and she stayed all afternoon for lemon and lime drizzle cake and avoidance of the heat. While she was here, I sort of ended up undoing and wiggling out the stitch in my neck with my fingers. Then I cleaned it and it was fine so no harm done, and it saves the nurse a job tomorrow!

This evening I have painted my toenails bright yellow and I am hoping the heat doesn’t make it totally impossible to sleep. I also emailed back a man whose partner discovered this blog and he had felt the need to share his story with me. It was such a lift to get that, that know that people care and are affected and even with the horrible shit they deal with, they still want me to know that I’m cared for, even by complete strangers. So thank you, Iain and Julie.

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I was listening to the soundtrack of The Fault in Our Stars on the drive to Falmouth (it’s about as close to the film as I think I can get) and it’s quite frustratingly apt. I’m sure it works wonderfully for the film. It is a flawless combination of songs for when you’re newly twitterpated, songs there just for the joys of expressing life, and sad, sad songs, for when your heart is broken and it feels like nothing will ever be good again. T-Shirt by Birdy is such a pretty little ditty, and I know I can relate to every lyric, and it makes me so happy and so sad at the same time, because I don’t think I’ll ever have that feeling again.

A reader sent me a comment the other day begging me not to withdraw myself from the idea of falling in love again or ever knowing what it might be like to have someone be in love with me (the only love I’ve been in has been unreciprocated), and I had to explain that I just can’t. It makes me sad, of course, unbearably so, but I absolutely fail to see how it could be possible for someone to even begin to consider the prospect of starting a relationship with me, let alone allow themselves to then fall for me. It’s not that I have low self-esteem – I am fully aware that I am completely awesome and any man would be lucky to be with me. It’s that my body is going to abruptly fail me irresolutely, and it doesn’t work brilliantly at the best of times. And why would somebody, given the choice between me and my body, and any other girl in the world who is much more likely to break your heart while staying alive rather than do it by dying on you, pick me?

And if by some stroke of pure stupidity, someone did fall for me, they’d have to work seriously hard to persuade me that it would be a good idea for me to get involved. Because either you’ll get sick of me and want to leave which’ll wreck me completely, or I’ll die and devastate you. Who wins in that situation?

That is the one thing I think that John Green got right. I am like a grenade, a ticking time bomb, and I could never be with someone, allow myself to love them and for them to love me, knowing that I am going to detonate and completely obliterate everything at any moment. I could not cope with that on my conscience every day. So I will sit on the sidelines, watch friends love and marry and have children, and I will be happy for them because it’ll be beautiful. But I won’t participate. No one will take my hand, put their arms around my waist, tell me I’m exquisite even when my face resembles the moon and I feel drained of any speck of humanity or beauty I had left. That is just how it has to be.

The 21st of July.

I am feeling slightly less stressed tonight. I was awake at four but that is just par for the course and there is nothing I can do. I am used to it now. We rang 621 first thing to explain my current worries about my liver/GvH etc which Sharon took very seriously and she said she’d find out who was where and what could be done. She rang us back very promptly and said that Igor and Susie would be on YPU, and to go and see them.

We packed a bag (if we didn’t take one, I’d need it) and toddled off to the QE, where we were greeted and I had all my bloods done, then in came Igor and Susie and Prem who’s obviously the consultant on at the moment, plus some sort of student doctor who I didn’t pay much attention to. I suspect Igor had warned Prem of my breakdown at him, and she listened to what I had to say. She thinks methyl-pred would be “like using a sledgehammer on a nut”, but to stay on 50mg of oral pred, keep using the cream and to have ECP again next week, so back to fortnightly. My bloods have all been sent so now I just have to be patient which I’m bad at. We also ended up having a conversation with a girl called Charlotte who has a brain tumour who had a really good real-hair wig and was going to this brain tumour support group type thing to meet other people with brain tumours as she hasn’t yet. And little nurse Laura came in who is now a clinical nurse specialist! So that’s fancy.

We decided to go investigate the Birmingham Boston Tea Party after my visit to the one in Exeter. We just had a flat white and caffé au lait, and Mommy also had half a chocolate and raspberry flapjack which lacked the advertised raspberries,

Came home for lunch, Mommy went to see Grandma, I worked out. Very hot and sweaty. At the end, I discovered that I am bleeding again! Going to ring Andy Toogood’s secretary tomorrow because I am not waiting until September for this so-called “urgent” menopause clinic appointment.

The 22nd of July.

One of the first things I did this morning was check my bloods from yesterday. We can breathe easy again – they’re all fine. My CRP is 0, and that’s what goes up if I am brewing an infection, so 0 is a very good number! It is just GvHD being ridiculous and a whole lot of wind. I’ve just got to be really, really careful not to overeat, even in the slightest, until all this burpiness calms down.

I had a productive morning, writing up a blog post, shaving my legs and tidying a load of boxes, books and shoes that were cluttering up the space in front of my bedroom window, all before lunch!

This afternoon, I wanted to be outside so I walked round the corner for a coffee cooler and some bits from Tesco and Boots. Upon my return, I sat in the warmth on the patio, read a section of Immortality by Milan Kundera (picked up in The Sanctuary in Lyme Regis, about different ideas of immortality via short stories? Not like anything I’ve read before), and then I took a lot of photos of the tree lilies because they looked glorious in the sunshine.

Then I came inside before I burned, read Heat, and watched the first episode of The 100 which is terrible so I’ve cancelled that series link.

Daddy’s knee has been weirdly broken today so he has worked from home and used Grandma’s old walking stick, bless him. It has been quite comical though. He and Oscar are a right pair, staggering around.

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The 19th of July.

Now I’m up to 50. It seems to improve, then get worse. We’re almost definitely going to to hospital on Monday because I’m beginning to think I might need some IV methylprednisolone to try to get it under control.

The storm had me awake in the night but not too much, so I didn’t get up until about eight today which is nice. Mommy washed my hair, and at lunchtime, Daddy and I went to see Boyhood. It was very much a beans on toast kind of day as it has been pissing it down, but my lunch was a bag of Pom Bears and a packet of Refreshers. Not ideal, but since we chose to go to a 12.20 showing of the film that didn’t finish until four, lunchtime was not normal.

The film was everything I expected/hoped it would be, and I’d recommend going to see it before it goes out of cinemas! It is all the good things you have heard about it. There was a power surge at the cinema just as we were waiting for the lift, but Daddy knew what was going on and we were not actually inside the lift yet, so I was not worried. Then we drove home in the storm and listened to the Wish You Were Here album on cassette tape because we are old-school and awesome. 

I had some more tweets today which are honestly one of the only things keeping me going. I’ve had an email from Fran but because she’s not based at the QE, she can’t really help, but she’s going to pass it on to the transplant team.

The 20th of July.

Last night I started adding things up in my head and hoping I’m massively wrong, then got very stressed and upset so I took three lorazepam. Basically, I have been burping after every meal, even when there is no frying or fat, so that’s unusual and has been a precursor to biliary stones. Severe GvHD flares also usually coincide with infection so bad GvHD, wind, feeling shitty now, all adds up to me becoming possibly very poorly in the next week.

We were driving down to Wales this morning so I was able to just plug my earphones in and still feeling dozy from the lorazepam, basically forget about my life for a few hours. We picked up Taid and took him to The Groes Inn, where I had pigeon which I thought might have been jointed but no, I had to completely dismantle it. I was terrible company, just not speaking, eating, then drinking my coffee. By the end of the meal, I was feeling totally rotten, didn’t want to get out of the car and just cried at Mommy while Daddy helped Taid at Tesco, then home.

On our trip home, we stopped at Starbucks Oswestry but I didn’t trust them to not make me something that would make me feel ill, so I just bought a bottle of water and some of the plain shortbread.

Tonight I’m going to have an early night but I think we might be at the QE all day tomorrow. I want them to do all of the tests because everything feels wrong and I’m scared.