The 22nd & 23rd; It was everything I hate about my life.

The 22nd of November. 

I had a really big sleep (for me) until half past nine, and after I had my breakfast, Mommy washed my hair and I was able to get away with not putting quite so much product in it today as my face has started to decrease in size, I think. 

I was forced into going to see Interstellar today (I made a bargain with Daddy that if he came to Mockingjay, I’d go to Interstellar) and I hated it. 

I cried at least four times. When Cooper realises he’s missing his children’s entire lives, and when the professor dies, and when Cooper’s trapped behind the bookcase, so frustrated because he is watching the people he loves and can’t seem to communicate with them. It was everything I hate about my life and everything I fear about what might happen after it. 

When we left, I was just sad and angry. The film I saw yesterday made me want to use my voice to try to save people, and the one I saw today made me wish I was already dead. 

The 23rd of November. 

Six milligrams! I think this is the lowest dose of pred I’ve been on since the beginning of June, when I went from 0 to 20 overnight because the topical steroid wasn’t making my mouth and skin better. I do hope I’m able to continue in this fashion. 

I had to take a Zopiclone last night because I got sudden heartburn which I soothed with some Gaviscon, but then my body was all freaked out and I needed some help to fall asleep. 

Today I dressed incredibly comfortably in knitted jogging bottoms and my angry kitty sweatshirt. It’s nearly advent and I do not care; I will be an elf if I wish. I have spent my day being cosy and crocheting myself a snood. I’ve now run out of wool, dearie me. I have also watched many things on the V+ box – so much recorded stuff which I probably shouldn’t bother watching. I should finish reading my book. 


The 20th & 21st; I listened to Photograph by Ed Sheeran on the way home and it was really hard work to not cry.

The 20th of November. 

Tired. Another day of things. 

Photopheresis again at half eleven, on which I rattled along quite nicely, barely finishing my paper before I was done. This afternoon, I was going to be trying on bridesmaid dresses for Becky’s wedding so I thought I’d better be wearing clothes that weren’t too much effort to get out of. 

When we got home from hospital, I sat on a towel and tried to buff dead skin off my legs and moisturise because my skin is just so dry. I put tights on afterwards in the end anyway. 

So I tried on four dresses, plus one that I just liked for me. They didn’t allow photos in the shop for copyright reasons, so unfortunately I have no pictures. We have some definite contenders though. 

This evening I have just been eating all of the things because I started my period yesterday. Artificial hormones driving my body mental. 

The 21st of November. 

It’s been a weird day. I feel like nothing happened until I went to see Mockingjay but that wasn’t until half past two. 

At first, watching Nat Dormer do actual acting (I haven’t seen anything she’s in before) was a bit strange but then I got used to her character and it was fine. She has a good shaped head. 

I think it just reminded me of having something that you believe in so fiercely that you would fight for it. I’m not fighting for a revolution, I’m not going to pretend my cause is more important than anyone else’s, but I’m still hoping to make a difference in the world. What I want only takes a few moments but can give years. 

I listened to Photograph by Ed Sheeran on the way home and it was really hard work to not cry. 


The 18th & 19th; Back to my enviable life of excitement.

The 18th of November. 

Ughhh I did not want to get up at half eight this morning but I had to be at the dental hospital at half ten and we couldn’t rearrange them again. The chap who saw me was happy, then Mrs. Richards had a look and she was also happy! Back in six months, carry on doing what I do. 

We went into town after because I needed some caffeine, then I wanted to look at some boots but wasn’t 100% sure about them so they stayed in the shop. I did get a good Christmas jumper with angry kitties on from H&M though. 

Becky came over after we got back to show us the handicraft she has been working on and discuss her knee progress. We talked dresses a bit – trying on bridesmaid dresses on Thursday! And I told her about yesterday and showed her all my heat swag. The “dirt” fragrance does not smell good. Fox repellent. 

When she left, I wrote about Sunday and yesterday, and tomorrow morning I’ll type them up. I caught up with TOWIE and I’m A Celeb, and tonight I’ve been practising crocheting in the round. Back to my enviable life of excitement. 

The 19th of November. 

What a very busy day. First thing, Mommy and I went to the sorting office as they had a parcel for me and one for Christine, although it took them ages to find mine as it hadn’t actually been put on the system yet. It was a necklace and some earrings from one of my lovely instagram followers who I made a scarf for. They are very pretty. 

This afternoon was photopheresis and Faye came to visit/watch – being a nurse, she was quite fascinated by the process. She arrived just as I was getting set up on the machine, and brought parkin and Yorkshire curd tart which Mommy was overjoyed about because they are her favourite nostalgic foods. I tootled along on my machine and Igor came to see me. He was pleased that my heart rate had come down to 106, but he still wants me to have an echo and another sort of CT to confirm the PE so we’ll see what they say. Such fun. Mommy went down to the restaurant to acquire some plastic knives to cut the parkin with, which I have never had before but it was really nice! Like a gingery cakey flapjack. 

Do it all again tomorrow!


The 16th & 17th; heat day!

The 16th of November. 

In London! This morning I was just excited about this afternoon and tomorrow, so I really was just killing time until we left. 

The assistance office at the station was more entertaining than usual as there were some very angry people who had missed their trains for various reasons. We got on ours and it was all fine. There were some delightfully lairy women who started drinking vodka and being very loud, so I was grateful to have my earphones to drown them out. 

Upon our arrival in London, neither of us wanted a heavy meal, and that was all we were going to get at Euston or the hotel, so we went down the road to St. Pancras where we went to Le Pain Quotidien. I had a butternut squash and feta frittata and it was as lovely as the French waiters accommodating us. Plus we saw the pretty Christmas tree but there are no F&M hampers on it this year. 

We got a cab to the hotel which was nice and functional. It was comfortable and had what we needed so we were quite happy. 

We watched Strictly and were pleased that Judy is finally gone, then X Factor and were indifferent about Jaz’s elimination, then I’m A Celebrity Get Me Out Of Here and Gemma is not going to cope. I feel very prepared for heat tomorrow!

The 17th of November. 

Heat day! It has just been incredibly surreal. Plus I woke up at four but never mind. Duck & Waffle breakfast didn’t happen because they didn’t get back to Jo, so instead we went to Curators Coffee, where I bought a bag of ground coffee because the flat white I had really delicious and I actually correctly identified country of origin which I felt a bit smug about. Then we went to Association Coffee and I had a pain au chocolat for my breakfast and Mommy had a ham and cheese croissant. We watched people’s rain faces from the window. The rain did abate eventually, and we went to Rinkoff’s and I got a cronut and some mini fruity biscuits. Paul A. Young has done some toast and marmalade chocolates to celebrate the Paddington movie so we wanted to get some of those. 

I wanted to get some treats for the team at heat, so we got a cab to Covent Garden where we had more coffee at Timberyard and I bought twelve cakes and cookies – just one of everything really! Then Mommy left me at Bauer Media and I was greeted by Gwen and we went up to heat which was exactly as I imagined, and everyone was very apologetic about the mess. We put the cakes on the crap table and I was introduced to everyone and they were all so sweet and lovely. I want to work there and be best friends with them all. I left at one and Mommy and I went to have lunch at Nordic Bakery (ham, cheese and mustard in rye) in Golden Square, then at two I met Lucie Cave in the radio building for Jason Manford and Olly Murs interviews! Jason was there very promptly so we went to find the appropriate studio and while Lucie and Rachel set up, I had a little chat with Jason about TCT and life etc and he is very nice and funny in real life. I had to suppress my laughter during the interview because random chuckling would be weird on air. Then it was over and we had a selfie, and we went to wait for Olly Murs! He wasn’t until half three, so I spent some time eavesdropping on his team’s conversations about his schedule and Lucie and Dan the photographer did some test shots for an interactive Christmas card pulling a cracker, which Olly then wanted to actually pull so we did! I won a tiny photo frame. Then he wanted to read me the joke, make me name the four US states that begin with I (which I did – Iowa, Illinois, Idaho and Indiana) then he did the charade of The Lion, The Witch and The Wardrobe which I did get after a wee while! A lion is the opposite of a tiger, apparently. He’s great fun, very down to earth – the interview was vastly entertaining; porn star names and sex faces were discussed. Listen to heat radio on Saturday to hear it! Another selfie and many hugs, then Lucie and I returned to heat for Samaritans Club 7! I got to meet them all and it was like I was nine again. I was complimented on my hair and glasses, and I talked with them about how Bring It All Back was my first ever single that I bought. I talked to Paul, Rachel and Jo, then they had to do some filming so I went back to the office where I was presented with a bag of many goodies! I was leaving at five, so had lots of hugs and got a selfie with three of S Club as they were rushed out to go to Manchester, then I met Mommy back in reception and we left! I wanted to stay forever. 

We were fairly exhausted so just went back to Euston and had dinner at Ed’s Diner, then I ate my cronut and read my advance copy of heat on the train. Daddy picked us up, I crawled up the stairs and it was oxygen and sleep time. But so happy.  

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The 14th & 15th; It seems I have a pulmonary embolism.

The 14th of November. 

Our suspected pleurisy is not, in fact, pleurisy. It seems I have a pulmonary embolism. 

I was obviously still in pain this morning, and I barely slept. It felt easiest to stay in bed, while Mommy rang Nicola the clinical nurse specialist who spoke to Igor and he wanted to see me in clinic at one. Kate the district nurse came to flush my line, which worked fine, so the problem isn’t in there. I stayed in bed, dozing in and out until half eleven, when Mommy helped me get dressed, then I was able to have lunch before we came to the QE. 

I had some obs and bloods done, and Igor chatted to some other doctors. He said it probably wasn’t pleurisy, but could be the line again or a PE which was unlikely (so obviously that’s what I have). He was also concerned by my resting heart rate of approximately 120, so he wanted me to have a CT scan then stay in overnight for observation. 

I couldn’t have the type of CT they wanted to do because I’m allergic to the dye and the substitute wouldn’t work for some reason, so nuclear medicine were very efficient at getting me in almost immediately for a different kind of CT which involved me inhaling some radioactive gas, them taking some pictures for twenty minutes (I had a little nap), then I had an injection and some more pictures for five minutes. Then a chest x-ray to make a fully comprehensive picture of my lungs. 

And diagnosis: pulmonary embolism. Treatment: clexane injections again. Still staying in for obs, but home tomorrow afternoon. 

Got to keep these doctors on their toes. 

The 15th of November. 

Back home! I had some lorazepam last night because I just wanted sleep, so I made sure I had the oxygen on and I slept beautifully. I’m not sure what time I properly woke up, but I felt alright. I had a bread roll and a satsuma for breakfast, plus an instant latte from a sachet. 

While I watched Saturday Kitchen, I wrote in my diary, then put those entries into the blog, which was relatively time-consuming. Dr. Tim came to see me at about half twelve and said I could go home! We weren’t expecting to leave until four, so when Mommy arrived with lunch, we ate it and subsequently left! It’s a good thing she hadnt brought me any extra stuff. 

So we packed up the room and got home just after three! I have been a busy bee since then, trying to sync Apple devices, do a little bit of crochet, make sure all the blog posts were completed, and tonight I just have to decide on my appearance tomorrow and I need to tidy up in the living room because it’s a mess. 

All my chest pains and headaches are gone tonight. Drugs are magic. 


The 12th & 13th; I had a mug of chips and laughed a lot.

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 10th & the 11th; Greggs Christmas pudding doughnut.

The 10th of November.

I feel better tonight. I think last night I was just really run down and needed another big sleep. And I haven’t felt at all lethargic today like I did on Saturday.

Today was mainly based around car things. Becky hobbled over after her walk (physio) and we talked about all of the things her mum has found for her to do while she’s off work despite her master’s and lesson planning being slightly more important.

This afternoon, Daddy dropped Mommy and I off in Sutton so I could get some more wool and collect some jumpers, then we killed time until he picked us up and we all went to the enterprise garage to pick up the courtesy car, which is basically the same as our one that got smashed.

This evening I have picked back up the scarf I was on when I ran out of wool (not long to wait now, Lauren!) and I got over excited about Mark Velangi being on The Chaplains next week. Squealed out loud.

The 11th of November.

Today has been a good day apart from some sudden breathing difficulties but I’ve done my inhaler and am having some oxygen and I feel a bit better.

This morning, Mommy and I were both at the chiro and with me having had a dreadful cough for a month and Mommy having had a car accident two days ago, we gave Trine a nice challenge! My neck was particularly traumatic; there was wincing.

We went into Sutton afterwards so I could return some shoes to Topshop and two jumpers and a cardigan to House of Fraser. I also needed another lightning cable and cable clips because the ones I use by my bed have a habit of breaking. Furthermore, I wanted a Greggs Christmas pudding doughnut (it’s a chocolate filled doughnut with some chocolate icing and a white bit with holly leaves so it’s essentially festive). It was very nice but very sweet. I do not need another one.

This afternoon, I’ve finished Lauren’s scarf, caught up on TOWIE and flipped through hair magazines for inspiration for when I get it cut and coloured on Thursday. Randomly saw Roseanna in one of them which she didn’t know about.

An exciting addition to our London trip on Sunday/Monday has happened but I want to keep it a surprise.

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