Archives For bad apple

The 27th of January. 

Oh I’m not sure what to say about today. I did not have fun dreams and tossed and turned for a few hours this morning before my alarm went off. 

My morning was a blog post and making the leg of the cat I started yesterday. I had an appointment with James at Bad Apple to get my hair dyed because I haven’t had it done for ages. We decided on sort of candy cane stripes in pink, amethyst, green and mauve. While he was painting, he kept making little excited noises which was very frustrating because it was all a blur to me! I am so blind. Yasmin rinsed it out and dried it and everyone is a big fan. Michaela even happened to be in for a meeting so I quickly showed her before Mommy picked me up and I got to finally have lunch at three o’ clock. The wool I needed to finish the bunny arrived while I was out, so since lunch I have read heat and made two of the bunny’s legs. 

My arm is squidgy tonight so I’m glad to be seeing Igor in the morning. 

The 28th of January. 

Well I hoped today we’d make a plan about my line but we only sort of have one. Obviously I was at clinic this morning where I saw Ram. Apparently they’ve requested a venoplasty but as an outpatient so who knows where that is in the system? Ram did try to call Andrew Willis but he wasn’t available. Presumably inflating someone’s veins. Igor has put me in for a lung angiogram as well? Good to know. So we left it with Ram to follow up but I don’t know what he’ll have done. I really need this fixing. 

After picking up my vast prescription from pharmacy, we went into town so I could put my Christmas and birthday cheques from Taid in the bank, get some moisturiser and my Christmas and birthday charms from Pandora – I got the infinity and family ones. 

This afternoon I have finished my first creature from Edward’s Menagerie, Emma the Bunny. I have spent the remaining time working on a polar bear for Sadie. He has a head so far. 

I hope I get a phone call tomorrow. I need to be deflated. 

The 21st of January.

It’s been a good birthday. Started with stopping steroids so that’s a bonus! For breakfast, I had Nutella-filled French toast which was delicious, obviously. Then presents! I got a waffle maker, a bag of Jelly Babies, Edd Kimber’s Patisserie Made Simple, and two (pending) Pandora charms from family. My new slippers were an early present from Grandma, and I got some wool and a book of adorable toys to make so clearly I’ve started one already. 

Mommy went to Sutton to buy my Pandora but they had neither in the shop, the Edd Kimber book and stuff to make Cubanos with so we had those for lunch. Amazing. Oh and while Mommy was out, the postman chose the time I was in the toilet to ring the doorbell. Thankfully I was able to get there!

This afternoon I began this crochet and Mommy and I have been watching TV. I’ve had flowers from Becky and Heidi, other crochet kit from the rest of the Easts, and we’ve had an indian and birthday cake for tea with Most. I spoke to Aunty Audrey at length as she forgot to send my card, bless her. All my lovely friends and strangers who aren’t really strangers sending me birthday messages, I love you all dearly. I’m overjoyed to just be here. I’m a little bit emotional. 

The 22nd of January. 

I hate how polar my emotions seem to be. Yesterday I was so happy, then I had a terrible sleep so I’m exhausted, I feel generally crappy, and my tummy feels off as well. 

This morning I went to Bad Apple to get my hair cut before goes off to have her baby, so I gave her the jellyfish I made for the baby when she arrives. We have cut my bob back in and I’m only allowed trims until she gets back. I’m going to see James on Tuesday so we can do something mad with colour, as I am bored. 

This afternoon, I really didn’t have an appetite, so I ate some soup, and I’ve just been working on my first animalaaa from the new book, but I’ve run out of wool so I’ll have to finish it tomorrow. 

I’m rubbish and uncommunicative.  

 

 

 

 

The 18th of December. 

Well, today has been much less great than yesterday. At about half past midnight, my breathing suddenly became much more laboured and I needed to use the oxygen to be comfortable. Combined with the pain I’m still suffering in my feet and ankles, I didn’t fall asleep until half past four, and I was awake again just after six. 

I’m also concerned about my mouth – it’s just starting to break down in my cheeks, plus a teeny ulcer on my tongue and sore lips. We rang the dental hospital to see if Mrs. Richards could see me as an emergency appointment in case she thought I needed a steroid injection. They were really brilliant and got me in to see Jon Higham who I’ve seen before while there was no one else around. He could see what I meant but didn’t feel injections were necessary and might even be detrimental. We’re going to hit it really hard with topical steroids, plus I’ve gone back up to 5mg of pred. It’s fine; I’d rather have it all under control over Christmas. 

We went to the QE for ECP afterwards which was all fine, and Igor sent an SHO to come and see my elephant feet. Everyone agreed that my oedema and breathing can’t continue, so they’ve given me a new drug regime and I just hope it works!

I would like two things for Christmas – to have normal sized feet and to be able to eat the foods!

The 19th of December. 

Happy marrowversary to me! Today is seven years since my first stem cell transplant from Christine. I got a penguin charm from Pandora, and Christine is the big penguin and I am the small penguin!

I had my fringe trimmed at Bad Apple at lunchtime so I took them a Christmas card and a copy of Grazia. Michaela really liked my fringe in the photo so cut it like that and took a photo. Then Amy was free and I got her to paint a couple of Christmas Minions on two of my nails which are awesome. Then Mommy came to get me and we had lunch at home before Naomi came!

She and Mommy used to work together at the Hippodrome and have stayed friends and she’s just lovely. We haven’t seen her for ages so she came over with lemon drizzle cake, flowers and presents and we had a long-awaited catch up. 

Just after she left, I saw on Facebook that a little boy we know is getting a new liver and bowel tonight! He is in theatre as I write and it is just wonderful. An incredibly kind family have made the brilliant decision to allow their loved one to save someone else. Life is blindsiding and magical. 

The 12th of November.

Very little sleep. As in maybe two hours? My body is fucked. I had haematology clinic where I saw Ram for the first time in two months after sitting around for a few hours. he said how I look so much better than last time, and how I seem to be in a better place, which I agree with. He trusts me to continue to taper my steroids – yeah I should think so! We had to wait an hour for pharmacy to do all my drugs, so we didn’t get home until about two.

Not a great deal happened this afternoon, but tonight is Katherine Ryan! Climbing up the stairs was really difficult but I think it was still easier than going around the outside. The amount of staff watching me mount the last few steps felt like an audience of people who are scared you’ll fall all the way back down and smash your brain. I was allocated a shitty seat, but I knew it was sold out so I couldn’t move elsewhere. However, they then realised that those weren’t my seats, and I needed to sit somewhere else which was a bit further away but higher so I had a better view. And I’d just got settled there when someone came to tell me I had to move again because I was still in the wrong place, and I actually needed to move to right in between a couple and two other dudes. I tweeted The Glee Club about it a lot at the time and they’ve ignored me which is unusual.

So I sat there and was grumpy to begin with, but the support act grew on me and then Katherine was really good. She greatly cheered me up, and I had a mug of chips and laughed a lot. She talked about teenagers, and one of the two in the audience was sat next to me. When I was 18, I’d just had a liver transplant.

Daddy was waiting downstairs when it finished, so he drove me home and I ate some peas and am going to bed.

The 13th of November.

Today has been a mixed bag. I had a terrible sleep, went downstairs and developed a very sudden, painful earache. Mommy went to Boots and got some earwax-dissolving stuff which we put in, and I decided I’d go out with Mommy for her to give blood while I had a coffee and watched the German market-goers. I also needed to replace another lightning cable, got a cardigan from Mango, and some Christmassy jogging bottoms from Superdry. The most important thing we did though was to visit the German Christmas markets which started today! I have had my first red sausage of the year and I’m really happy about it as for the past two years, I haven’t been able to eat anything because my mouth GvHD was playing up.

While we were out, before I had the sausage, I developed this very odd chest pain which felt really pressurised, and we couldn’t figure out what it was. Is. We only had about an hour at home before I had to be at Bad Apple for my cut and colour (selfies to come, worry not!) so we tried Gaviscon, Deflatine and general winding, but nothing has worked.

I managed to cope while I was having my hair done – apricot roots, pink ends, smudged in the middle. Messy and I love it.
Went straight to town again from Bad Apple and Daddy dropped me and Mommy off so we could go and see Henning Wehn at the town hall! I had a pretzel and a hot chocolate for tea.

Henning was ace, as I expected, and he tested his newest lecture for The Unbelievable Truth on us, so I’m looking forward to finding out if I spotted the truths. I had fun, but I think I would have enjoyed it more if my chest hadn’t been so tight and painful. We think it might be pleurisy, but we’re going to the QE in the morning. I just hope I get some sleep.

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The 25th of September. 

I had a marginally better sleep, but have been out of the house for approximately 8 1/2 – 9 hours of the day, which is very long for me.

Had to go to the sorting office to pick up a parcel that came while we were out yesterday, then we went into Sutton because there was a new Topshop opening and the first 200 people through the door got a free goody bag (brown kohl pencil, red lipstick and nail glitter – disappointing). I bought a jumper, then a coffee and Mommy took me to Bad Apple to get my hair cut and coloured. Not had much taken off, and now it’s pink and mauve and amethyst. And I can now say I share a hairdresser with a supermodel – Michaela did Jourdan Dunn’s hair at the Topshop show at LFW! Fancy. We had to go straight from there to photopheresis so I ate my lunch in the car. It took a bit longer than usual for no particular reason and we got home at about six.

There really is nothing else to say. I feel horrible.

The 26th of September. 

I was not expecting to end my day in A&E. I woke up feeling puffy, and had it confirmed by Mommy saying she couldn’t see my eyes. We were supposed to go out today but my face is so massive, I didn’t want anyone to see me because I feel like a freak.

I took a double dose of furosemide in the hopes that it might alleviate some of the swelling but by lunchtime, my arms had almost doubled in size and I was getting stressy and tearful.

We rang Nicola, one of the haematology clinical nurse specialists who said considering it was Friday afternoon, the quickest way to get anything done would be via A&E and she’d let the doctors know I was coming. We packed a bag (because it’s a guarantee that if we don’t take one, we’ll need one) and set off, and really everything went very efficiently; we didn’t have to wait long at all, which was just as well as there was a man in the waiting room making the most revolting sniffing/snorting sounds which was upsetting.

It turned out the doctor on call was Igor who looked at my arms, face and veins and went to talk to the interventional radiologists. He brought a consultant called Andrew Willis back who has looked at the images from my last venoplasty and come to the conclusion that I need a stent (possibly more than one) putting in, but he didn’t want to do it on a Friday night with a skeleton staff as it’s a fairly complex operation and he would rather do it on Monday with a plan and a team. I have to say I prefer that option too.

So I’ll have clexane injections for two days, go in on Sunday night and hopefully be fixed by Monday evening!

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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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