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Documenting not dying since October 2013.

The 25th & 26th; I was not expecting to end my day in A&E.

The 25th & 26th; I was not expecting to end my day in A&E.


The 25th of September.  I had a marginally better sleep, but have been out of the house for approximately 8 1/2 - 9 hours of the day, which is very long for me.

Had to go to the sorting office to pick up a parcel that came while we were out yesterday, then we went into Sutton because there was a new Topshop opening and the first 200 people through the door got a free goody bag (brown kohl pencil, red lipstick and nail glitter - disappointing). I bought a jumper, then a coffee and Mommy took me to Bad Apple to get my hair cut and coloured. Not had much taken off, and now it's pink and mauve and amethyst. And I can now say I share a hairdresser with a supermodel - Michaela did Jourdan Dunn's hair at the Topshop show at LFW! Fancy. We had to go straight from there to photopheresis so I ate my lunch in the car. It took a bit longer than usual for no particular reason and we got home at about six.

There really is nothing else to say. I feel horrible.

The 26th of September. 

I was not expecting to end my day in A&E. I woke up feeling puffy, and had it confirmed by Mommy saying she couldn't see my eyes. We were supposed to go out today but my face is so massive, I didn't want anyone to see me because I feel like a freak.

I took a double dose of furosemide in the hopes that it might alleviate some of the swelling but by lunchtime, my arms had almost doubled in size and I was getting stressy and tearful.

We rang Nicola, one of the haematology clinical nurse specialists who said considering it was Friday afternoon, the quickest way to get anything done would be via A&E and she'd let the doctors know I was coming. We packed a bag (because it's a guarantee that if we don't take one, we'll need one) and set off, and really everything went very efficiently; we didn't have to wait long at all, which was just as well as there was a man in the waiting room making the most revolting sniffing/snorting sounds which was upsetting.

It turned out the doctor on call was Igor who looked at my arms, face and veins and went to talk to the interventional radiologists. He brought a consultant called Andrew Willis back who has looked at the images from my last venoplasty and come to the conclusion that I need a stent (possibly more than one) putting in, but he didn't want to do it on a Friday night with a skeleton staff as it's a fairly complex operation and he would rather do it on Monday with a plan and a team. I have to say I prefer that option too.

So I'll have clexane injections for two days, go in on Sunday night and hopefully be fixed by Monday evening!




The 27th & 28th; My drawing from Chris Riddell has finally arrived!

The 23rd & 24th; A truly excellent day.

The 23rd & 24th; A truly excellent day.