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The 3rd of August.

I feel drained. I don’t know why. I don’t think it can be anaemia any more – I’m just exhausted. I had a pre-op at the Women’s Hospital this morning for my coil insertion and hysteroscopy at the end of the month. Two hours sitting with a nurse who knows nothing about my complex diseases (not that I expected her to – she does gynae) but going through everything that’s happened in the past eight years, explaining all my drugs and why I’m on them, what I’m allergic to, what happens if I have those things. And she just kept telling me how terrible my life has been, how much I’ve “been through it”. I know this. I’m aware that my life is a pile of shit, I don’t need reminding. When I’d finished talking, I had to have bloods done and an ECG which didn’t take long at all. 

We had to take the duvet cover back to M&S and pick up a jacket on the way home, and I was planning on going to the gym this afternoon, but I just didn’t have the energy. Instead, I wrote up the past two days and watched the final Humans while Mommy was at Grandma’s. 

I just need a big sleep. 

The 4th of August. 

I am officially without plumbing!

We went out late morning to be on 621 for my line removal at 11:30. However, the man before me had been late, so I managed to read the entirety of The Secret Library by Haruki Murakami (admittedly, it’s not long) and I’d started on the paper by the time they came to get me. 

It was the first time I’ve been able to watch my line come out. It was done by a doctor called Becky who I assume has replaced Igor, and she was perfectly competent. First she put in some local, which only stings for a moment, then it’s numb and she made a small cut. Two clamps were used to hold the incision open, and then the line had to be detached from the flesh it had embedded itself in. It just involves a fair bit of digging, and I had to have a tiny bit more anaesthetic a bit deeper. Once it was all free, the removal was very quick. A couple of stitches, a dressing and I was on my way!

This afternoon I’ve just been resting, and I wrote a blog post about why #IGiveASpit for Anthony Nolan’s newest campaign. Getting people to register for stem cell and organ donation is my only purpose in life, and I want to help in any way I can. 

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 16th of July.

Today has just been one of mundane, trivial shit that is frustrating and takes forever. Having updated my blog, I went to the iMac and set about updating the music on my iPod and backing up my phone. 

However, first I had to do a load of updates to the iMac itself, including a new version of iTunes. For some reason, this deleted the iTunes library, so I had to find it instead of redownloading everything from the cloud. 

Eventually I was able to start trying to back up my phone, but got the error message saying the phone had been disconnected (which was a lie). I restarted everything, did every job very slowly and finally, at about quarter past five, it was finished. Sorting my iPod was a breeze, thank God. 

Car isn’t back yet. Tomorrow they’re going to drive it up a hill and we’ll see what happens then. 

I just had a phone call from hospital saying as there was no clot in my scan, there was no need for more tests because the swelling was improving. Except it ISN’T, it hasn’t improved for THREE FUCKING WEEKS. I am back in clinic when we get back and I’m getting this fucking sorted because I don’t want to be dealing with this at Becky’s wedding.  

The 17th of July.

Well, I spent my morning waiting for the nurses to come and flush my line, and they finally turned up at quarter to twelve. They were here for quite a while, as one was being trained by the other, so it was all a bit slow. When they were finished, Mommy and I had lunch, then sorted out my clothes for Falmouth. The weather looks like it’ll be really mixed, but I can’t take jeans or boots because my right leg doesn’t really fit into them. 

Having done that, Mommy took me to the gym, where I didn’t do everything I usually do because one machine was out of order and another was just forever occupied so I gave up waiting for it. A man spat on the floor near me which was upsetting. Why do that? Can he not cope with the amount of spit in his mouth? I left shortly after that. 

I’ve not got much left to do for tomorrow. Last minute morning stuff which is just as well as we’re leaving at eight. 

The 1st of May.

Really tired, because I had another bad night, and this time I can’t blame our dinner. I had a dream that when trying to avoid a film festival of filth, I experienced aftershocks from the earthquake, meaning I scrambled up a cliff which led to an industrial farm where the government had been turning the people born infertile into mulch to feed the rest of us. It took me quite some time to get back to sleep after that.

Kate came to flush my line this morning and it behaved which was pleasing, and later on, the marmalade hamper arrived! Very exciting. Having extracted the goodies from all the straw, there was a marmalade pot, a Dundee cake with marmalade, some chocolate and orange afternoon tea biscuits, some English breakfast tea, and three different kinds of marmalade! For lunch I just wanted toast to test each type, but alas we had no bread.

This afternoon, I have made the body of an alpaca called Seamus, and now this evening I’m just really tired. I would very much like a decent sleep with nice dreams.

The 2nd of May.

Ahh double Zopiclone sleep is so good. Drugs are great. I got up at nine-ish, and while I was having breakfast, Becky came over, as if she had sensed the kettle boiling. We talked mainly about the wedding (so exciting now!) and she may have gallstones which is really not fun for her. I am hoping she is able to have them dealt with before she has to experience the opiate-necessitating pain.

Having read most of the paper and had my lunch, it was gym time. I did some rowing today! 500m in 4 1/2 minutes on the easiest setting which I am sure is crap compared to fit people but I am not fit people so I’m pleased. No one especially interesting there today, just near the end, four girls came in who a) obviously had no idea what they were doing and b) one had sprayed herself with WAY too much deodorant which nearly choked me, but thankfully she didn’t stay too long in my vicinity.

Then I came home to WALL-E on TV! Such fun, I do adore it. Even if it makes me a tiny bit lovesick.

The 19th of April.

I started my day feeling pretty great, but this evening I am grumbly. Zopiclone finally did its job, so I had a full night of excellent sleep, waking up just an hour before I planned to get up so the Tramadol had time to kick in.

Sunday Brunch and blog post, then we had Grandma round for lunch, which was duck in port and orange sauce, then special chocolate mousse with Cointreau which is the best pudding ever.

When we were finished, I started working on the first part of my special crochet project (I can’t say what it is as it’s a secret surprise). James came round with the pressure washer and he and Mommy had rather a long chat about his new job and the university, but I wasn’t paying a great deal of attention because the pattern I was following was fairly complicated.

I completed that part, then I started on the pig that’s next on my list, and now here I am. The reasons I am grumbly are twofold – a) I think we need to ring the dental hospital in the morning as the ulcers on my tongue aren’t improving, so steroid injections are going to be the next step, and b) my right foot is still swollen, despite the furosemide. I think I had to take it for at least six days last time, so I’ll carry on and keep my fingers crossed, but if it continues or happens again, I’m going to have to start harassing doctors again, and I really don’t want to do that. I just want my body to behave completely, no extra problems, just for a little while. Is that so much to ask for?

The 20th of April.

My mouth is becoming a real problem, which seems to ring bells from a year ago. I have three ulcers on the right side of my tongue, and one on the top/left. Up until today, they’ve not really been sore, but today it is much worse. We rang the dental hospital and I have an appointment for Wednesday, and we did hope they might ring with a cancellation, but unfortunately no such luck, so I’ll have top keep quiet, spraying difflam and flixonase and drinking lots.

I had a chiro appointment at 12:15 which I was slightly concerned about, but my back’s been okay today. So much so, that I actually haven’t had any Tramadol yet. Trine felt around, and it seems that my lower left back/bumcheek just went into spasm on Sunday night for no particular reason. She did a lot of massaging which I had to grit my teeth and deal with, but afterwards, I did feel better. I popped into Black Sheep as there seems to be a weird hiccup about my next appointment.

This afternoon, I have been crocheting the pig snout and ears, and some of the special project too. Little tricky bits! I’m just trying not to move my tongue too much. Grandma has an operation tomorrow, so if the dental hospital ring, I have to just hope it doesn’t clash with her in any way.

The 3rd of April.

Another terrible night! I will be awfully distressed if I have a third one but I don’t want to take a Zopiclone as I don’t want to be dozy when Romesh comes.

This morning, we re-dressed my wound as it had bled a lot, then we watched Masterchef and The Truth About Fat from last night, because we watched the leaders’ debate then. I still haven’t decided who I will vote for, but I know it won’t be Farage or Cameron. Farage spouted pure bile, and I’m not prepared to let Cameron do any more damage.

After lunch, I took Christine to the gym with me because I can do that on Fridays. I just did arm and chest work – no legs today. I noticed while there that my right leg is significantly larger than my left. My foot was puffy this morning, so I took 40mg of furosemide but it hasn’t helped – I’ve just swelled more.

Upon arrival home, I had a little cry at the futility of my conflict with my body, then texted Igor to find out what we should do. And back to 622 it was. Now it happens that the junior doctor on today was a girl that was in my year at school. Not weird at all. The reg decided to send me for an ultrasound to rule out a clot or haematoma. The porter came to get me, and two nice doctors scanned my leg, compressing the veins and taking pictures. They commented on how easy I was to scan because I am slim. There was nothing there, so basically, this is a fairly common complication, and it might go down in a few days. If not, I’m back on Thursday.

The 4th of April.

Well I took a Zopiclone, then had a lot of coffee this morning so I was perfectly perky. We made some vegan sweet potato brownies, and I read the weekend Guardian. Much of the magazine was politicians on blind dates and since the debate, I really couldn’t be bothered with more of that.

This afternoon, Romesh came over and he brought Matt Richardson with him! Always happy to host multiple comedians. Basically we just hung out in my living room, drinking tea, eating brownies and trading stories of gigs, people we knew, the deficit. I do enjoy having the comedians round – I feel like they’re already my friends from the radiop/tv/twitter, so I just talk to them like that. It’s fun.

They left about half four months so I’ve watched Rise of the Guardians and finished the aardvark head. Christine feels to urge to make trifle which I have tried to stop but it seems trifle is happening and I’ll be unhappy about it. I really hate trifle.

Easter tomorrow! All of the chocolate!

 

The 1st of April.

It happened! I took two Zopiclone but didn’t sleep well at all because I was enraged at the nursing staff for not sorting my admission very quickly and not turning the lights off until gone half eleven and the doctor for not turning up to clerk me in. When she did come, she woke me up my listened to my chest, poked my stomach a lot, then buggered off. So by morning, I was not best pleased. I found that under the bright lights, I could see just how much the GvHD has fucked up the skin on my fingers.

Mommy arrived at about half eleven, and we watched This Morning on the iPad as I’d been able to get on the TCT wifi again. I was first on the list, so got taken down to interventional radiology for 1 pm, where I had a chat with Andrew and signed the consent form. In the room, they sloshed me with the cold, orange stuff and the nurse have me some midazolam, and from then on I was kind of sleepy so the rest wasn’t too bad! I remember Andrew saying things, and a lot of shoving (it’s never a particularly delicate process), then shuffling back onto my bed and being taken to recovery.

Back on the ward, I ate some of Mommy’s crisps and drank some Tropicana, then after two hours of lying flat, I was allowed to go home! I have to be careful moving around and dressing, and it’s going to be tender for a good few days, but I’ll get used to it. I’ll be having to wear skirts for all my ECP sessions now.

The 2nd of April.    

For some reason I had a really terrible night, waking up three times, and the third time, I just gave up trying to go back to sleep. I watched an episode of Dexter and felt the strange protrusion coming from my thigh.

I had the phone interview with That’s Life at ten, which I’d completely forgotten about until Mommy reminded me, so it was a good thing I got up early and we ready. We talked for an hour and a half and she was very nice. I have an idea of how it’s going to turn out, and I think it will be good. I’ll have it read through to me before it’s published.

When I’d hung up, we went into Sutton to get boring bits like nail varnish remover and Easter cards. We also got some raw cacao powder to use in the vegan brownies we’re making for Romesh (Ranganathan) who will be coming round on Saturday. After returning home and having lunch, I swapped all my winter nail varnishes for more summery ones, and I’ve finished the body of Alice’s aardvark.

Now Christine is home! I gave her the aubergine vegetapal I made, so she can take him back and he can live on her desk.

My leg hurts.