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Documenting not dying since October 2013.

The 8th & 9th; I am "Kaffoon".

The 8th & 9th; I am "Kaffoon".


The 8th of August.  I have had the most fun afternoon. Elle came round with Luna, and later on we were joined by Ben who I haven't seen for aeons, so it was just lovely. 

We're nearly there on the pain management I think. 30mg of oxycontin plus some top-ups of the oxynorm seems to be taking care of 90% of it, and I think I can cope with the remaining twinges. 

At least on this regime I am sleeping - I think I am feeling the extra drowsiness from the oxynorm, but I don't mind, it just means more coffee and I get to have sleep! As long as I'm not dropping off mid-conversation (as I have been known to do), I'm happy. So this morning I got up early-ish so I could get my blog done before going shopping to buy food for me, Elle and Luna. Got some picnic-type bits from M&S, then I spent the rest of my morning crocheting until their arrival. 

They got here shortly after two, and I was struck by how chatty Luna is now! I am "Kaffoon", which I will take, and she was so good and polite, saying all her pleases and thank-yous. We had our lunch of meat and cheese and bread, then decamped into the living room. We played with some toys and she met Graham the hamster while Elle and I tried to converse. After a while, she started getting a bit wriggly and restless, and we resorted to Peppa Pig on Netflix. It's amazing how she just goes into a trance, almost. No more chat, just pigs. It did mean we could talk properly, so that was nice. Swapping latest medical stories; there's always something new! For a Peppa break, we went for a wander round the garden so Luna saw the pond (from a distance), smelled the flowers and played with the windchimes. 

Back in the house, we had a small snack, then more Peppa. She did say please every time and I couldn't say no! Ben appeared, having finished work, and he and I got depressed about the state of the world. It's hard being so left-wing. By twenty to seven, they needed to get moving because Luna needed dinner and soon it would be her bedtime, and they live on the other side of Birmingham. We packed up all their stuff, and I carried Luna to the car (which was surprising because she is heavy and I haven't lifted anything for ages). Elle has just texted me at ten to nine and they've only just got home! Awful traffic. We're watching the men diving and there are some beautiful specimens, which is cheering me up after our loss at the rugby. Bloody New Zealand.

The 9th of August. 

I have just had a very worrying hour and a half, wondering if I was going to be sick. We've been at the QE this afternoon (just for visiting; I'll elaborate later) and in the lift down to the car park, I thought I needed some Rennies, but they didn't seem to do much good. In the car, it seemed to be turning into nausea, so I covered my skirt with a waterproof, moved my bag and shoes out of the way, just in case, and I got one of Mommy's handy carrier bags to use as a receptacle. I was also really sleepy from the oxynorm, and I always find closing my eyes makes me feel more sick, so I was fighting that too. I clenched my jaw all the way home. 

Thankfully when we got here, we had ondansetron (anti-sickness) so I took one of those, put my pyjamas on, and sat over a washing-up bowl while Mommy rubbed my back. I am very pleased to say it seems to have worked and I do not think I am going to throw up. Still, I'm just going to have a very simple tea.

Had a very quiet morning, just a phone call to the nurse at the Women's about the lubricant I got with my dilators, but then I got a call from the GP saying my prescription for the dilators (which I've already had) was ready to pick up. I'm going to collect it because I might get the right lubricant this time which would be helpful.

This afternoon, as I mentioned, we had a trip to the QE. Our friend Keith is up on the liver ward, being kept well while waiting for a transplant, so Mommy went up to see him and I went to YPU to see a guy called Dean who I met via BuzzFeed/Twitter. He's got Ewing's Sarcoma and is in for a week of chemo so I thought I would go say hello. 

We had a delightful time. Two of my favourite nurses, Tina and Laura were on so I got to say hi to them - apparently they had been talking just the other day about how they hadn't seen me in ages, which is good! Don't want to be seeing them really, because that would mean I'm poorly. I was passing on some handy hints for surviving hospital - things to pass the time, which he will need a lot of because he's got eleven more cycles of chemo left. I was recommending My Dad Wrote A Porno and Like Minded Friends to keep him amused/sane; podcasts can be an excellent distraction from all the shittiness that is a cancer ward. 

His boyfriend arrived and was very sweet too, and we were also joined by a lady from The Little Princess Trust who provide wigs. It was interesting to chat about wigs for men because I never met a guy in treatment who had or wanted a wig, so I learned that actually, synthetic wigs are better for men because they can be cut shorter into styles that are more like what most men would have. We also talked a lot about scalp care (coconut oil) and how slow or fast things grow back, like eyelashes are much quicker to come back than hair. There's so much stuff that you don't really hear about if you don't talk to other cancer patients; he's going to have to have surgery that will put him in ITU for a couple of days where he'll be ventilated and will have to have physio afterwards to move the crap that will settle on his lungs, so I was enlightening him as to what that's like. All the phlegm. 

I left with the wig lady, and went up to the seventh floor to meet Mommy and Keith. Also in his rroom were his husband Gareth, a lady I didn't know, and her partner/husband who is actually a doctor at the hospital in the thrombosis clinic who works with Gill who looks after me! We only stayed about half an hour longer, mainly discussing wedding hats and holidays. We really had to go at half five, and it was just as well because then I started feeling ill. 

I seem to be fine now. I had a boiled egg and soldiers for tea which has stayed with me, so I think I'm alright. It's never simple!

The 10th & 11th; So sleepy and itchy!

The 10th & 11th; So sleepy and itchy!

The 6th & 7th; No side effects but no relief yet either.

The 6th & 7th; No side effects but no relief yet either.