Archives For July 2015

The 28th of July.

I’ve had a very productive day, without even leaving the house. Not so much the morning – just blogging. But after lunch, Mommy and I decided to make Konditor & Cook’s Curly Wurly cake. My role was to warm milk, sugar and chocolate together before pouring it into the rest of the mixture. They had to bake and cool, so Mommy went to see Grandma, and I watched the first episode of Agent Carter and one of the episodes of Hannibal that’s on the box while I started making the body of Jessie the Raccoon.

When she came back, we made the frosting and I filled the middle, then coated the whole cake with a thin layer of frosting before putting it in the fridge for an hour. Christine rang, then we watched Mock the Week from before we went away, then it was time to finish. I piled on the rest of the icing and decorated it with some chocolate swirls. I’m quite pleased with its appearance, just have to taste it later! I’ve finished Jessie’s body, now working on the head, and that’s going to be tricky. 

The 29th of July.

Jessie’s face was a disaster so I’m trying again. If this goes wrong I might cry. 

Had to get up at 7am for haematology clinic. I was fully ready to yell at Ram but when it came to it, I couldn’t. I was in by half past ten, and he read me Andrew’s emails, and basically, because it isn’t getting worse and it’s not medically necessary, he won’t do another venoplasty because he doesn’t want to screw up my veins more. I only have two ECP sessions left, at the end of this month and three months after that, so essentially, there’s not a huge amount of point in having those so we’re going to stop and the line is coming out. I did cry. I’m just sick of being angry about it all the time. 

This afternoon, we took some Curly Wurly cake over the road and had dramas on the house, then I was at the chiro with just a bit of neck aggravation,back in three weeks. We’ve watched an episode of Cordon, and I’m now trying really hard not to fuck up Jessie’s had number two. 

The 26th of July.

Rest day. I got up at nine from a glorious sleep in my own bed; it was delightful. I love home. Especially taps with pressure. Hooray for gravity! This morning I watched Sunday Brunch and blogged. My lunch was a cheese toastie as we had very little did in the house (Mommy was out buying some more), and I caught up on some stuff, including Humans, which made me cry when Max sacrificed himself and said “If I die, it means I have lived”. I don’t think there is much better one can say. 

When Mommy was back, she washed my hair, I watched a bit of athletics, then we went over the road to give Becky her birthday present and cards and the rest their holiday presents. I got to have a lovely time stroking Rocky – I miss having a strokable pet. Hamilton is not very cuddly. 

Since coming back, I’ve gone through the Konditor & Cook book, wanting to eat all the things, and I fixed a nail that I’d painted dodgily. Such a life of excitement I lead. 

The 27th of July.

Back in the gym today. I had a very disturbing dream in which I was killed then eaten by Hannibal, but still fully conscious and yet unable to feel any pain. The only pain was when a giant caterpillar bit me on the finger so I flung it away. 

This morning we flushed my line and changed the dressing, then Mommy went to give blood and I stayed here and did thrilling things like opening the side gate for the window cleaner. 

After lunch, Mommy took me to the gym where I had a very productive session, except the leg press is still out of order, so I rowed for five minutes instead, which is a big thing for me. The smiley boy turned up but there were no mats available so he waited around for a while but eventually had to give up. 

On the way home, we went to Pets at Home to get sawdust for Hamilton, but I got slightly sidetracked by a really fluffy bunny that I just fell in love with. I was very sad to leave it. We also went to Boots for some foot cream, and finally M&S for juice and dinner, although we wandered around feeling like we were the worst because we just couldn’t decide what to eat because there was nothing we wanted. Good old fishcakes. 


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 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 24th of July.

Nothing to say about today. I am exhausted by poor quality sleep but that can’t be helped until I get back in my own bed. I blogged, saw cousin Tilly in the background on This Morning (they had segments from Heathrow and she’s going to Canada), and went out to get coffee and a brownie from Espressini Dulce this afternoon. The guy who works there is cute. Sigh. 

I’ve spent the rest of the day reading Death in Florence, fully identifying with the old man who finds himself totally irrelevant to anyone he finds attractive, embarrassed that he even thinks of himself with them, because in truth be is invisible. But now even be has managed to get a beautiful, young girlfriend, as unlikely as that is. I am firmly convinced that no one sees me as a prospective partner; I am invisible. A girl in a chair, alone. 

The 25th of July.

Driving day. Awake at half past seven, we left maybe at nine? I’ll miss Falmouth, everyone there is so lovely. In the car I read the paper and listened to lots of music. Got lunch at M&S in the services and stopped again at Gloucester where I had some shortbread and some shortbread and some coffee that tasted like garbage. I bought some apple, spinach, lemon and kale juice to get rid of the taste, and they had the Konditor & Cook book in the shop so I got that because I want Curly Wurly cake all the time. 

When we got home, I had to give the hamster a shake because he’d left all his food out and I was concerned he might have died. 

The 22nd of July.

Gah, another note very-good sleep. I think I’ll just have to cope. And I won’t be pushing my chiro appointment back because I’ve done a mischief to my neck. Bother. 

This morning was blogging, Daddy went on the ferry to St. Mawes and I took my chair up to the original Espressini where it was just as lovely as I remembered. I parked my chair outside and sat in the window, drinking two fiat whites of the house and guest blends while I read a bit more of David and Goliath. I bought a brownie to take away, then I went with few doors down to Good Vibes Café where I had a smoked salmon and cream cheese bagel for lunch, and was also tempted into buying a cinnamon bun which I’ve eaten half of because I think the brownie will keep better. 

I got an orange sunset smoothie (orange, strawberry, mango, pineapple and frozen yoghurt) and brought it back to the house, where I’ve spent the rest of the afternoon. We’re going back out to Hunkydory for dinner, and I’m just hoping I’ve got enough room. 

The 23rd of July. 

I am sorry to say I have been very dull today. The weather has been most grey, so I only ventured out once, to get lunch, which was a crab sandwich from Picnic. 

The rest of my day has been spent in the house, watching the boats and reading. I’ve finished David and Goliath, and now I’ve started Death in Florence by Marco Vichi, which I think I bought in Bath when we went to visit Heidi. Mommy went out to do some present-buying, and she brought me back a Popeye’s Green Power juice (raw spinach, banana, green apple, pineapple and cucumber), so I felt quite virtuous while drinking that. 

And that is all today! I’m very sleepy and am looking forward to returning to my own bed and big duvet that isn’t stiff and I can snuggle into. Why someone would choose this sort of duvet is beyond me. 

I overheard a gut saying to his friend that he wished he had a girlfriend. I’m sure he’ll find someone; most people do. Most people, except me. I wish I could be okay with that.

The 20th of July.

I had a better sleep last night – I think I was just more settled, and I didn’t wake up to pee really early so all in all, better. 

I went to Dolly’s for lunch and was joined by Mommy and Daddy, mainly because I needed them to help me get the chair inside. I had Nutella-filled French toast and I’m still full about five hours later. Afterwards, Mommy and I bimbled a bit, she bought two brooches and I got coffee from Espressini, then we went to Trago Mills, the weirdest shop in the world. I got quite excited because they had all the Sylvanian families and their houses which was my dream as a child but I refrained from buying any. 

Came back and read David and Goliath by Malcolm Gladwell, being fascinated by the chapter on near misses, courage and a bit of leukaemia. It seems I am “brave” because I have escaped things and I’ve had no choice and nothing to lose. Fear is usually worse than the thing one is afraid of. 

Now once again trying to decide where to eat dinner. 

The 21st of July.

Today has been 95% good, I would say. The weather has been really nice, so I was able to wear one of my new hats to protect me from the sunshine. I drove the chair to The Meat Counter and parked it outside with the joystick disabled, then sat in the window so I could keep an eye on it. I had a pulled pork bun and a cookies and cream milkshake and it was so good. I watched all the fun tiny dogs outside while I ate and I had a great time. Dogs here are all so thrilled to be alive, I love it. When finished, I wandered up to the Falmouth bookshop where I got The Radleys by Matt Haig and A Slip of the Keyboard by Terry Pratchett.

I came home briefly to use the facilities and do my mouthwash, then I went back out to get a Tropical Twist juice (pineapple, passionfruit, mango, orange and green apple) then I took it to the edge of the the harbour so I could drink it while looking over the water. I’d had about half when I was resting it on the arm of the chair and it slipped and went all over me. That’s karma for feeling smug. I called Mommy and we mopped me up as best we could before coming home and chucking everything in the wash. 

Tonight I am having only vegetables. 

The 18th of July.

Holidays! Oh it has been a long day of travelling. I was up at half past six because we were supposed to go out at eight, but then Daddy woke up late so it was more like half past. We drove to the fancy Gloucester services for breakfast, but none of it really appealed to me so I just had more coffee. Lots more driving. We got to another service station when Daddy said “Well, this is horrific” and we promptly turned the car around without venturing inside. We found another one a little later where we bought sandwiches and ate them in the car. 

That was our last stop before arriving in Falmouth. The flat is on the bottom floor so I don’t have to contend with stairs, but I’ve been out for a brief bimble but I am nowhere near as strong as last year so I’ll be using the chair all the time. Hills are not fun. The only good thing about my trip was that I went into Ciuri Ciuri and they had made Cookie Biscuit gelato just for me because I am special. 

We appear to be going out for food soon. 

The 19th of July.

It was supposed to chuck it down all day today and pleasingly, it hasn’t! I didn’t have the best of sleeps – my bed is really creaky, so I think I’m going to try the other one tonight. 

This morning I stayed in and Daddy went out a couple of times so I got him to bring me coffee back each time. I did go out for my lunch though, but I got Mommy to come with me just in case of any problems. We looked at shops I can get the chair into, but if I can’t, I can disengage the joystick so no one can drive off in it. I wouldn’t leave it where I couldn’t see it though. I got a smoked salmon and egg sandwich from Picnic and a lemon sorbet smoothie from Elixir, which was lemon, orange, honey and frozen yoghurt. It was delicious. 

After coming home, I’ve shaved and moisturised my legs and watched boats in the harbour while listening to Amber Run, and we’re trying to decide where to go for tea.