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The 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache. 

The 1st of March. 

Bleah I feel rubbish. Barely slept because I was coughing and sneezing. The house had no heating because the boiler man was coming so it all had to be switched off. I’ve been in the knitted joggers and my extra warm thermal polo neck and they did the job of the radiators until the boiler was fixed. 

That’s all there is to say about today. I have been taking Day & Night Nurse, Carbocisteine, Strepsils, plus spraying my tongue with the strong steroid because an ulcer is trying to happen there. Going to clinic tomorrow to get some antibiotics because I’m bringing up yellow junk. Hopefully I can get some of it into a sample pot in the morning so they can test it. 

God, I hope this doesn’t last long. 

The 2nd of March. 

I don’t feel totally terrible. I could do with more sleep and I wish I weren’t coughing up junk but at least I’m not feeling completely wretched. I barely slept again, then got up at eight so we could go to clinic to get me some antibiotics. I put myself in the side room, because if I’d been anyone else in clinic, I’d want the person filled with germs isolated. When I had my bloods done, I got a sample pot which I managed to hawk from yellow stuff into and now that’s off being analysed and cultured. Ram listened to my chest and heard the ever-present crackles in my lower right lung, and he gave me some Co-amoxiclav and sent me for a chest x-ray. I forgot how big those tablets are. 

We got home just before half past one, avoiding all the swirling snow we’d seen earlier. I had scrambled eggs for lunch because my tongue is bothering me. Right now it just feels raw and sore, especially if I eat something acidic. Talking is also a little bit tricky. If it lasts longer than a few days, I’m going to have to get injected again. 

Obviously that is a boiled egg and soldiers which I had for lunch on Tuesday, I have not lost the plot completely. 

The 15th of December. 

Slightly better night? Didn’t take me too long to fall asleep but woke up early. I haven’t written about my sleep this much since I was on steroids, but I can’t blame medication for this. 

I did a blog post this morning, and discovered I’ve done some sort of mischief to my right shoulder blade. Every time I cough, it hurts. My plan is to sleep on it and hope it goes away. If it doesn’t, I’ll have to arrange an emergency chiropractor appointment. I also had an excellent conversation why a chap called “Brian” (his name was not Brian) who wanted to inform me that I had downloaded a corrupted operating system. I made concerned sounds until until he didn’t know what to do so I called him out on the scam and hung up. He then rang back and I just said NO BRIAN NO MORE TALKING and he hasn’t called again. 

We also had some fun phone calls from the QE and the GP because Dr. Hewins has written me up for a diuretic and after some miscommunication, I’m basically going to end up with double the amount of tablets but that’s fine. 

Mommy had a Christmas lunch with Grandma until half past three (it took rather longer than anticipated), and when she got back we got through two of the four episodes of The Bridge we’ve got in the box. I have lots of feelings about Linn’s treatment of Saga but I am just hoping that it will be okay. I hope that a lot. 

Finally, Nick might be getting a home! A family are coming to view him tomorrow, and I am just hoping his shy demeanour doesn’t put them off. 

The 16th of December. 

My back is not better so I have an emergency chiro appointment tomorrow. Stupid aggravated rib. 

It’s been a busy day! Off out at ten to go to town for my ribbons and tags, several bits from Superdrug and my Pandora charms for my upcoming anniversaries. We were done in an hour (very efficient shopping), but had to make a couple of stops on the way home. Picked up my diuretics from the QE, went to Tesco for mincemeat ingredients, and the garage for kitty food. The place was overflowing! Leigh begged me to take as much as possible. 

After lunch, I went to hang out with Nick to try to get him in a good mood for the family coming to view him after the daughter had finished school for the day. He was just being mental which didn’t bode well, but when they arrived, he actually came out to see them and was very well behaved! So much so that they want to take him home with them on Monday. I’m so pleased he’s going to have a forever home for Christmas. 

When they left, I finished wrapping the presents I needed the extra stuff for, then started crocheting a hat for a snowball when Jonathan appeared at the door. He’s watching TV with Nick and trying to stop him eating his bagel. That’s not a euphemism. 

The 23rd of July. 

Wow I am in a lot of pain. A ridiculous amount. I cannot move without it and even sitting still it’s there, just not quite as agonising. But that is because of all I’ve done (or not done) today so let’s rewind back to the beginning.

Meant to get up at five but woke up half an hour before that. Not ideal but OH WELL, it meant I had extra time to have coffee and not get stressed. Always glad for that.

We had an interesting start in the assistance office; a guy came in and was annoyed because the station staff wouldn’t let him through the barriers because he didn’t have a ticket. This was because he’d been out all night and lost his friends, phone and wallet. All he had was his keys. He was obviously still a bit drunk because he couldn’t grasp the concept of having to dial 91 before a phone number to get an outside line on the office phone when trying to call his grandparents to help him. The woman dealing with him had the absolute patience of a saint. The grandparents didn’t seem to be able to come to his aid, and he was getting more and more wound up, so in the end, I took a tenner from my purse and just gave it to him so he could buy himself a ticket. He was only going to Lichfield so it wasn’t going to cost him that much but it was fine. He then wouldn’t leave until I gave him some details so he could pay me back, so I wrote down my name and number but I am not expecting him to text me. I don’t suppose he’ll even know what it’s for. He’ll probably think he’s pulled or something. I just hope he got home safe.

Our journey was not very exciting. On train, had paper, listened to the Ghostbusters soundtrack. Rhythm of the Night has become my jam since seeing the film. As we were arriving, a girl was going to the toilet and said my name. I turned to look, and it was Charlotte who I met on a TCT trip – she has a brain tumour, but she’s kind of okay? She’s getting married, so she’s not feeling any sense of doom about the future. She and her fiancé were going down for an exhibition. We must meet up. I haven’t seen her for ages. Euston assistance was not so good this time – a Virgin chap got the ramp for us and the man appeared as we were leaving. Sorry, too late. Be there on time.

We went up the road to St. Pancras which was full to bursting of what seemed to be school parties with suitcases, so we didn’t hang around and went straight to platform 12 to get on a bullet train to Stratford International. We folded up the chair, so Mommy stayed with it in the vestibule, and I sat with a family from Yorkshire who were going to the games too. We were lucky to get on when we did because it filled up to sardinedom. Mmm, sweaty. I was glad our stop was only six minutes away.

When we arrived at Stratford, we went over to Westfield to get ourselves some lunch. Waitrose was straight ahead, so we picked up sandwiches from there, then spotted a Bread Ahead stand! DOUGHNUTS. They had about four left, so I bought a chocolate one for me and a crème caramel one for Christine. We found a horde of people going to the Olympic Park, so we waited out of the way of them to meet up with Christine. When we were stood outside John Lewis, Michael Johnson walked past and Mommy started hitting me in excitement. She was like me when I meet a comedian, bless her.

Christine emerged from within the crowd, and we joined the mass of bodies heading for the stadium. I’d forgotten how far it is. Past the Orbit and its terrifying-looking slide, a group of people surrounding Gabby Logan, taking photos of her doing a piece to camera (weird), and finally found our gate.

We were in wheelchair position seats, and had a really great view over the stadium. We were at the finish line end, facing the line itself so it was perfect for taking photos. We were also in the shade and it stayed that way all day thankfully, as we could see the people on the opposite side in the sunshine just baking, fanning themselves all afternoon.

We began with that para-athletic events, and the day got off to a great start with Richard Whitehead breaking his own world record! Unfortunately neither Jonnie Peacock nor David Weir won their races, but hopefully they do at the Paralympics, when it actually matters. Libby Clegg got a new world record too, with a guide she’s only just started running with.

There was a half hour break before the able-bodied athletes came in, so we ate our lunches and took the opportunity to go to that toilets which were very close by. To kick it off, some of the big names were brought out on the backs of trucks, being driven around the track with flames being set off to emphasise how exciting it was.

I won’t list all the events we saw – there are photos. We witnessed two false starts, both by team GB athletes which was most annoying, for them and us! Poor Martin Rooney. Jess Ennis-Hill and KJT were long-jumping away, and I’m hoping I got some decent shots of them. The men’s relay was a huge success, with the GB teams taking first and second place. Admittedly the Jamaicans weren’t there but still, it bodes well for Rio.

The last and main event was the 5000m with Mo Farah. The first twelve-thirteen minutes are not particularly thrilling, but for the last couple of laps the crowd got louder and louder, and for the final one, everyone was on their feet, clapping and yelling at Mo to win. It was clear that he would, but to actually witness it with my own eyes, to be a part of that moment was pretty special. It was nice to feel great about this country for a minute.

Leaving was slow, to say the least. There was only one way to go, with everyone being herded like sheep in the same direction by stewards. There were even people with stop/go lollipops which everyone just obeyed without question. Only in Britain would that system work. At several points we had to go across the flow of traffic to get to step-free access, but people were generally very accommodating. One of the great novelties of being in a wheelchair is that people will apologise to you and even break into a run for absolutely no reason.

We eventually got back to the station, where there was a long queue for trains back to London. However, a member of staff came up to us and told me to go straight to the front. Another wheelchair perk. We went down to the platform where a train was waiting and in no time at all we were away again!

At the other end, we made our way back to Euston where we grabbed some food from M&S and went to see the assistance people. We had open return tickets back (even though I’m certain I booked a specific train but whatever) so I wasn’t sure if they’d be able to help us. However, we were sent to a platform right away, but when we arrived, we couldn’t get on the train because they hadn’t been able to couple the carriages. In the end they got it fixed, we got on in coach G and were home an hour earlier than planned. Smashing.

The 24th of July. 

Agony. Agony all day. I can’t stand up straight. Not even in an “I can but it hurts” kind of way, in a my body physically will not do it kind of way. I can’t lie flat on my back without putting my knees up. I don’t walk, I waddle. It hurts all the time. It feels like my pelvis is literally crumbling inside me. I don’t know how else to describe it. Hospital tomorrow; I need some drugs.

This morning I was writing, and this afternoon, Daddy and I went to see Star Trek Beyond. Every scene with Chekov broke my heart, and there’s a lot of them. It’s so tragic. Plus there’s a whole thread about Ambassador Spock/Leonard Nimoy’s death, so a lot of it is pretty bleak. There are comedic moments too, but I’d expect nothing less with Simon Pegg as a writer. Of course there are flaws but I wasn’t expecting it to be amazing, just an entertaining couple of hours and a distraction from the pain, which it was.

When we got back, I decided I wanted to make a video, to ask Jeremy Hunt why we can’t afford stem cell transplants now. First I needed to plan what I was going to say, then record it and not hate it. It took a while. I managed to write what I needed fairly easily, it was the delivery that w.as tricky. Looking at my notes and the camera was not easy. I had to stop so I could have dinner, then I was straight back upstairs. I finally got a set up that I liked, then I just had to keep recording myself until I got it right. By ten to nine it was done, and I’ve sent it to Anthony Nolan before I share it. It needs to be done right to have the impact that I want. I need it to be big. I need this decision to change. Please watch it, share it on Twitter, Facebook, show it to your friends and ask them to do the same. Click here to email your MP to ask them to write to Jeremy Hunt and ask him to intervene and reverse it.

The 4th of June.

Ugh I had a really terrible night – I didn’t take anything, and I was too warm to sleep, even after taking off my pyjama bottoms. I did eventually fall asleep at about half past four and wrote up at half past eight, having a coughing fit.

The only thing I’ve done today is go to the sorting office to pick up a package I missed yesterday, which was one of Daddy’s birthday presents. This morning, I wrote about yesterday, and this afternoon, I have been watching TV and wanting to go to sleep. I watched an episode of Virtually Famous, in which Alex Brooker referred to a tumblr about people’s fantasies about British comedians, so I looked at it, but just found it really weird, now having met a lot of them.

This evening, I’m icing some cakes and having more coughing fits. My voice is dreadful today – I think I talked too much yesterday, then coughed all night. When I answer the phone to people, they must wonder what the hell is wrong with me.

The 5th of June.

Oh I slept last night without drugs and it was glorious. I didn’t even cough too much. The only had bit of the night was a headache, so I had some co-codamol and it went away. This morning was spent trying to get a blogpost up but the app I use was being uncooperative but I did eventually get it uploaded. After lunch, Mommy and I went into Sutton. I was looking for an adult toothpaste that isn’t minty but the only one I found was a Holland and Barrett fennel one, which is awful. I don’t understand why they don’t exist! I can’t be the only person with a problem with mint. I did get some facewipes that were on offer, and Mommy got some sandals from M&S on sale, so it was a successful trip, in a way.

My parents have informed me that a mysterious benefactor has come forth and donated the full amount for my chair! They’ve been approached, won’t tell me anything, but yeah! So I am ending the campaign, refunding all the money that has already been donated, and being super excited about rolling on my own!

The 25th of May.

Oh, God, I feel so awful. I didn’t fall asleep until past four am, so I had about five hours, but it was hardly of any reasonable quality. This is obviously not helping me feel any better, and my skin has decided to erupt so that’s good. I also have absolutely zero voice today – I can only whisper, no matter how hard I try.

I have been sat in front of the TV all day. I don’t have the impetus to do anything, and everytime I do move, I have a major coughing fit. So yeah I’m a mess.

In a tiny bit of good news, the blood pressure tablet I’ve started doesn’t seem to have inflated my feet yet.

The 26th of May.

I feel better having had some sleep. I took two Zopiclone and a nearly uninterrupted eleven hours of sleep. This has meant I wasn’t awake, coughing all night long, so my throat had a rest and doesn’t hurt so much today. I am hoping I feel the same tomorrow – to have improved again might be asking too much. Today has been very much the same as yesterday, except I had my hair washed.

It’s been on the news that a man has gone to Dignitas and the assisted dying debate has been reignited. In all honesty, I would like it to be legal. For purely selfish reasons. I know that I am going to need care for the rest of my life, and if it gets to a stage where my parents can’t take care of me, I wouldn’t put that burden on my sister, and I don’t have the funds to employ a full-time carer. I’d have nothing else to live for, so yes, I’d like to be able to have a lethal prescription that would end it. I can’t go to Switzerland, so a reliable set of drugs would be the best option for me. If I decide to go, I want to be sure that it’s going to work.

The 29th of September. 

Surprisingly, I am writing this from home! The doctors came on ward round just to say hi really, and they said Dr. Willis wouldn’t be in until eleven, so that gave us more of an idea of when I’d go down. They came to get me just before twelve, but then we had to wait around for the nurse to get a white cap and proper heparin as they had not prepared me properly for theatre.

I got downstairs and was given a gown, then I saw one doctor who did venograms in both arms (scans that are used to investigate obstructions/constrictions in the veins, amongst other things), then they gave me lots of lovely midazolam and fentanyl and I had a lovely nap, occasionally woken by being asked to hold my breath and then breathe normally.

I was finished by about half past two, so then I had to lie flat for two hours, then I could sit up for an hour, then I could go! There was a brief query as to whether I needed to be observed overnight in case I reacted to the MRI dye because they used more than normal. I point-blank refused because nobody mentioned this until now and I knew I would have reacted by then so said “Fuck that” and we came home. I’m fine, so obviously I was right and I am sleeping in my own bed tonight.

The 30th of September.

I think having fentanyl has had the same sort of effect as lorazepam does – I’m still droopy today. I didn’t react to the dye, as we expected, and today I have rested as per instruction.

I seem to have deflated a bit, I think my tomorrow evening it will be all gone. But my day has been spent with my feet up, crocheting and painting my nails. I am so tired, and I have clinic tomorrow morning. Early night tonight.