The 23nd & 24th; I will continue to live life as my fabulous self.

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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On love, and why it is not in the cards for me.

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 & 22nd; We can breathe easy again – they’re all fine.

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 & 20th; Everything feels wrong and I’m scared.

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.

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.

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The 15th & 16th; I have to remember that I am more than just my body.

The 15th of July.

Shattered. And it’s only going to get worse. We’ve gone up to 30mg of pred today because my hands still haven’t calmed down, and I’m scared that they’ll be just as bad if not worse again in the morning and I’ll have to go even higher.

I had more shortness of breath than usual this morning which is something they tell you to watch out for so that had to get checked out before they would use the line. So I had a doctor called Igor come see me and I pretty much exploded at him, letting out everything I’ve been feeling for weeks and made everything really awkward because we’ve never even met before. He was nice about it though – he quickly arranged an x-ray and a blood gas and everything looked okay, so I finally got going at about twenty five to two, but the new line bled so well, I was finished by about three! My breathing started to feel a bit better so maybe the line just needs to settle in and be accommodated by my vessels.

I can’t about steroids any more. I want to go to bed and wake up to a magic solution to all this please.

The 16th of July.

I feel slightly better today. Like life is worth living again. I’ve had to go up to 40mg of pred but I just have to keep reminding myself to get a grip and I am incredibly lucky and I will hopefully outlive my steroid face. I have to remember that I am more than just my body.

Daddy took me to photopheresis today and that was fairly uneventful – I got set up reasonably quickly, chugged along at a decent rate, then Nik changed the dressing on my line site as it looked a bit bloody and grubby and she gave me a bag of goodies for flushing, then we left!

We had time for lunch at home, then we went back out to see How To Train Your Dragon 2. I thought we might be the only ones there but we were joined by four other people, boo. I will post no spoilers of the film, I’ll just say that I really enjoyed it and you won’t be disappointed!

This evening I was still not convinced that 30mg of pred had not made a significant enough difference to my hands, so I took 10 more. I know it’s going to take longer to come off, but I feel I may as well go the whole hog now and every day I delay upping the dose is a day wasted. Now every night is like Christmas Eve as I just want to see what my skin has done in the morning.

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The 13th & 14th; New line day!

The 13th of July.

Spent all afternoon writing up blog posts about holiday and now have to write about today! Well I had lorazepam but my body wasn’t really playing ball so I woke up at nine, despite my best efforts to stay asleep.

This morning I half-watched Sunday Brunch and Mommy washed my hair because it was disgustingly full of product. I haven’t been able to do much that requires memory or skill as lorazepam just completely removes that, so I’ll have no real knowledge of what’s happened today.

Becky and James came over and we exchanged stories of the week and we gave them their holiday presents.

The majority of my afternoon has been me typing up blog posts to be posted in stages, and having a brief look at my medical notes from BCH, knowing there was no point trying to retain any of it. Will read through them again when I am more compos mentis.

People are going to rummage around in my chest tomorrow. Then I’ll finally get some photopheresis, but not before I’ve had to go back up to 15mg of pred and negate all the hard work I’ve done. Fucking doctors.

The 14th of July.

New line day! I woke just in time to stuff a bagel in my face and finish it at 7.59am, since I had to be nil by mouth from 8. No coffee (dying), no anything. Needed distractions so we went to the sorting office for me to pick up two letters from BCH with my radiology imaging and the password so that’s exciting.

We came home so Mommy could go round the corner to look for a card for Pam, then we went to town to get some cards for me to give to people, a nice sandwich for when I was allowed to eat again, a CD-reader for the iMac, and some cotton pants from M&S as I forgot you have to wear them for surgery and I didn’t want the paper pants again. I did end up with styrofoam slippers though.

Then it was off to ambulatory care where we didn’t have to wait too long – I was first on the list and went down at quarter to two, saw the man who did my last line and we confirmed that I was having an apheresis line and some woozy drugs and once we were set up and he was in, I had some Midazolam and fell asleep until it was over.

Then I had to stay on the bed for two hours and sit in the chair for an hour before I was allowed to go home so we finally left at about six! Long day.

He’s put it on the same side, so I’m really quite achy. Paracetamol before bed.

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