Archives For Still Standing

The 9th of January.

Well it’s been a curious day. I had to get up at quarter past five to ensure I had time to drink a litre of water before 6am, from which I had to be nil by mouth.

We arrived at about quarter to seven, and had to wait outside the Short Stay Wellcome Unit until someone let us and the two nurses without working passes in. Then we sat in the waiting room and watched Good Morning Britain until someone came to take me to my bedspace.

I was in the corner of the room – it used to be the ICU when it was the main hospital, so the bedspaces are massive and it means I am not crammed next to loads of people. I have been here before but we can’t remember what on earth for.

Mr. Titley came to see me, and he ran through once again what was going to happen. Examination under anaesthetic, possibly biopsy, possibly smear, possibly photographs. In the end, none of those things happened, just the exam. I signed the consent form, and off he went. Then I met with the anaesthetist, Dr. Allan, who was very nice, as all anaesthetists are. We talked about why he didn’t want to knock me out – same as Dr. Thompson, in that I’d end up stuck in ICU and if they ever did wake me up, my lungs would be in worse shape than they were going in which we can’t have. He had to talk me through all the risks of epidurals and regional blocks etc, which I was happy to take, then he went away and I finished being admitted by the nurse.

Miss Byrom wasn’t expected to arrive until about ten, so I didn’t get changed until twenty to, and I’d not been ready long when a porter came to get me so my timing was impeccable. I started off in the little anaesthetic room, where the trainee anaesthetist got stuck up against a valve in my wrist, so Dr. Allan had to stick the cannula in halfway up my forearm. I needed it so they could give me a bit of antibiotics and fluid so there was a balance against the spinal injection when he did it. When it came to that time, I had to sit with my legs over the edge of the bed, and hunch over my pillow on my lap. I got sprayed with super cold cleaning spray all over my back, then there was a small amount of local which felt the same as always, and then he did the regional block injection which I didn’t feel at all. All I noticed was a spreading feeling of warmth from my bum downwards, which was sort of nice but also disarming. I could move my legs to get them back on the bed, then I had to wait for them to get heavy before we could do anything more. I didn’t expect the sensation to be so acute – despite my brain knowing that I have the muscle strength to move my legs, I physically could not lift them, not even using my arms. It is absolutely bizarre.

At that point, we could move through to theatre, where my legs were put in the stirrups, and nine strangers got to see my vagina. That was interesting, because I could see them being flopped about into different positions, but I had no feeling at all; it was like they were broken, like they belonged to someone else. Then my vagina got sprayed with the cold spray to test if I could feel anything, which I could not, so they were able to begin. As far as I could tell, Miss Byrom tore through the adhesions again, then there was just a lot of shoving – I was aware of pressure, but no pain. It is entirely scarred, so no biopsy would tell us anything, and Mr. Titley cannot do any surgery to help. It took them about 20 minutes of shoving and looking to decide this, then some packing and a catheter were put in, and they started discussing what might be done next. It sounds like I’m going to end up with some kind of custom made silicone dilator but we will have to see. Emails must be sent.

Once covered up, I was taken to recovery, where I got a hot blanket which was so beautifully toasty, and we waited for my theatre notes so I could come back to the ward. And here I have sat since twelve, waiting for the anaesthetic to wear off and the catheter to come out. I have had coffee and a panini, and can move my legs independently again, which is nice. It still feels like I am sitting on a cushion of jelly, five hours later, but the catheter is out and I’m hoping to be able to pee in the next half an hour so I can then go home.

For all the NHS crisis talk, you wouldn’t know it here. I have been taken care of wonderfully, they are showing no signs of stress and I haven’t got angry at anyone.

The 10th of January.

I was woken up by Mommy telling me she had to go to Grandma’s because she was being taken into hospital. The cough she seemed to be incubating has definitely matured into a nasty chest infection and as the day has gone on, she has had tests and been admitted to have IV steroids and antibiotics while being on 5 litres of oxygen. That’s more than I was using even when my lung collapsed so she is really quite unwell. Apparently the doctor was not exactly optimistic.

My day has been a pretty quiet one, as one would expect the day after surgery. I was supposed to be going to a clinic at St. Giles but I cancelled that – I’m not sure how productive it would have been, and we’ve agreed I’ll reschedule once I’ve had my fancy MRI.

I had a couple of other phone calls; one with Adam from Black Sheep about my hair colour, one with the eye department at the QE to sort out an appointment, one with Lucy from Anthony Nolan to discuss press for Still Standing, and one with a lady who is going to come and view the kittens on Friday.

Speaking of them, I watched some more of Big Little Lies with them asleep in my arms. I’m almost reluctant to allow their adoption!

The 1st of January.

Happy New Year!

I am very warm and very sleepy. Staying up until half past one and only getting eight hours of sleep is not good for me. I know, eight hours, woe is me. I have had a small coffee so that should keep me going until bedtime.

It’s been a very sedate New Year’s Day. This morning I wrote my last blog post of 2017; will have to retire that diary to the collection in my bedroom. I’m annoyed that Moleskine have stopped doing The Little Prince stuff but this will do. I also finished the shawl! Finally. I will not be using that wool again – it’s so full of static. Then I went to give the kittens some individual cuddletime, especially Amber as she didn’t get any yesterday.

Grandma came for lunch, and we had duck and goose, not that I could tell the difference between the two. Both tasty though. And leftover puddings for pudding, because we were building up a larder.

This afternoon has been film-watching and trying not to overheat. I had some good news this morning – enough tickets to Still Standing have sold to pay the venue! Now, as long as the insurance is paid off, all extra sales go to Anthony Nolan. Got to have a chat with them about some press.

The 2nd of January.

My ribcage hurts where I had the chest drain, has done all day. I don’t know why – my breathing is no worse than normal, and I haven’t made any weird movements. I’m at the chiro tomorrow, so maybe Trine will be able to help.

Said goodbye to Christine this morning because Daddy was driving her back to Twickenham, then Mommy and I spent until lunchtime inventorying my wool. Went through both boxes and worked out what belongs together, by brand, colour, weight etc. It took ages! But now I know what I have and I can decide what to use for projects I’ve already got in mind.

This afternoon, I started reading Gnomon, and sat with the kittens so they could roam around while I watched the first two episodes of How to Get Away with Murder season three. I know I’m very behind but it’s only just come on Netflix. Amber and I are becoming quite good friends now. Ava not so much, she still runs away a lot. Will have to bribe her with treats.

The 19th of December.

Oh lord I am so tired. I got home about half eleven last night (the gig was much fun), and it took me hours to fall asleep, then I woke up several times so the sleep I did have was not of good quality. I am going to have Zopiclone tonight. Stupid lack of sleep.

So I have been really sleepy all day. I did a blog post this morning, and rummaged through my back up hard drives to find the original photos that were taken during my first stem cell transplant. Ten years ago today, I had my first cells from Christine. All the versions of the photos on my phone were rubbish quality, and I knew there had to be a better one somewhere.

Once I’d found it, I spent a lot of my afternoon trying to compose a tweet to send out to promote Still Standing. It took a stupidly long time for something so insignificant. I’ll probably do the same again on Thursday. Maybe I’ll be better at it then because my brain won’t be mush from not sleeping.

I can’t wait to go to bed.

The 20th of December.

Zopiclone worked. Nice big sleep, thankfully. I could not have coped with the wrapping pain if I was exhausted.

This morning I brought all the presents downstairs and wrote all my Christmas cards. Tidied up the living room table so we can fit food on there. Not much else for me to do until after lunch, really!

Mommy went out to Grandma’s then to pick up Christine from the station. I took everything into the dining room, made myself a peppermint chocolate drinking fudge, put The Polar Express on and it was wrapping time! I thought it would be best if I wrapped everything in the paper first, then did the ribbon on them all after, otherwise I might not have been done by the time Mommy and Christine got back. My paper was stupid and didn’t want to stick together, so I was glad I’d bought string as well as ribbon. Maybe next year I will not do glitter paper.

When The Polar Express finished, I watched a funny little film on Netflix called Pottersville. It was quite amusing, kept me entertained while I covered everything in glitter.

Now I am finished and my back is excruciating but I am done. It was worth it.

The 7th of December.

FINALLY I can announce the secret exciting event I’ve been working on for months: I am hosting a comedy show at Union Chapel on 12th February next year to celebrate being alive ten years after my diagnosis with Nish, Suzi, Josh, Sara and hopefully we can rope in a couple more to round off the bill. It’s called Still Standing and you can get tickets here.

This morning, I got a blog post done, then made a call to Chapel to find out when the tickets would go on sale. I had to pay the deposit first, so I got them to send over the invoice so I could get the thing on sale!

Once I had paid, I had to just sit and wait for the link to appear online, so I did Christmas crochet while periodically checking the Union Chapel website/my email. It appeared about half three, so since then I have been generally all over the social media, promoting the shit out of it. I will continue to do so until I have sold all the tickets, and there are a lot!

I am beyond excited. I just really hope it’s a success!

The 8th of December.

I had forgotten it was supposed to snow, so the white blanket covering my garden this morning was a lovely surprise. I would have liked to have put on my knitted Christmas trousers to keep cosy, but I know the kittens would tear them to shreds and I can’t have that, so it was fleecy velvet leggings instead.

My main objective today has been to finish my Christmas shopping. I had only three more items to get, but it’s taken me all day to decide on them. Admittedly I did stop for lunch and to wash my hair, and that took a while because my lip balm rolled under the bed. I spent a good ten minutes swiping a hanger around to try to retrieve it, but to no avail. It’s a good thing I had three spares in my drawer.

I also took a shopping break to work on Mommy’s present because she and Daddy went to get a Christmas tree and logs for the fire, although she did walk in while I was squirrelling it away. Hopefully she didn’t see what it is.

Now I just have to decide on a wrapping theme!