The 30th & 31st; One day seven years ago that changed everything.

The 30th of July.

I hate dealing with incompetent people. 

This morning I blogged, very boring. I had a phone call from Jo, the BMT co-ordinator, saying she’d put in a request for me to have my line out on 621, and shortly after hanging up, someone from there rang me offering me a time which I agreed to without looking at the diary. However, when I went to put it in, I realised it was the exact same time as my appointment with the kidney man. I rang back and spoke to someone who didn’t know who I was and claimed they didn’t do this procedure on the ward. I disputed this, saying they clearly do, as I had literally just been speaking to someone who’d offered me a time for it which actually wasn’t convenient. But the numpty didn’t know what to do, so I rang Jo back and told her what had happened, and then I had another call offering me an hour earlier, which I didn’t think will work as I’ll need to lie flat afterwards. They’re waiting to hear from another doctor, and I’m going to ring back in the morning. Igor would have sorted this. 

After dealing with all that, I went and worked off some stress in the gym. Leg press is still out of order, but I got to do everything else. The smiley boy appeared and thought he’d squeeze a spot in the mirror, and at one point picked up a bar near my head, putting his face about a foot away from my face. It was somewhat surprising. 

Raccoon legs tonight. 

The 31st of July.

Today is seven years since my second stem cell transplant. They came from a German fellow who was just eighteen, and he was found in the nick of time. One potential donor had been unable to donate on the day he was needed, and we were all set to use Daddy. If we had, the cancer would almost definitely have come back and I’d be dead right now. Even though his cells got kicked out by the liver donor, we shared DNA, and without him, I wouldn’t have had to have my liver transplant or the stem cell miracle that came with it. The GvHD might have nearly killed me, but the treatment made me cancer-free for good. He’s a hero. 

This morning I sat around waiting for nurses to come and flush my line, but when it got to lunchtime and no one had showed up, we decided to eat and go out. They didn’t come while we were out either so obviously they suck. We had to go and pick up a duvet cover and take back a dress, then went to Pandora to get my German flag heart charm, and I got a Brownie Bomb from Selfridges to celebrate my marrowversary. 

I’ve made two legs of Jessie, and we’re no further on in getting my line out. Going to ring up on Monday and prod them some more. 

One day seven years ago that changed everything. He doesn’t even know. 

The 28th & 29th; Sick of being angry about it all the time.

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 & 27th; “If I die, then it means I have lived.”

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 24th & 25th; A girl in a chair, alone.

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 & 23rd; I wish I could be okay with that.

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 & 21st; Tonight I am having only vegetables.

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 & 19th; Hills are not fun.

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. 


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