Monday, October 15, 2012

A funny old day.

I had a really good chat with Oliver tonight before he went to chestershire club, and it just reminded me how incredibly lucky I am to be surrounded by brilliant people. Talking, honestly, can solve anything.

Anyway, in this really good chat, I was explaining to Oliver how I have been so up and down all day. About three times each I think, really quite a yoyo. I started off feeling this was totally unreasonable, as well as annoying as I just can't keep track of myself and control it. But then I realised actually that today has been a really big day in terms of news. And I think that it's all coming out now. I am panicking, big time. And that's a good thing.

I'm really glad Olly was at the hospital with me. It was useful to get his opinion of what happened this morning to overlay on my own thoughts. It turns out we were both quite shocked at how negative the news was, when we'd been really led to believe so far that it wasn't so bad. Now I know the worst, nothing has changed in reality, but it seems much more real. I am really very scared now.

I have been thinking a lot about how the next week will be and I think the panic will now grow right up until surgery. There is just too much to think about. I think I am more worried about how worried I will be in the run up, and how that will manifest itself.

So the learning for today is that it's ok to have an up and down day, when I've been dealing with new information and shock.  But tomorrow I would like to be a bit more stable (less panic, less crying) and more calm.

Also - unconnected - I've been reading some Sam Harris about lying which is really good. But hard to implement. Love it though.

Too much information.

Well. That was certainly interesting.

We went to the hospital this morning and had some really quite revelatory information. I have been known to be contrary (!) but it seems throughout this process that just when I feel I have a handle on the seriousness versus reality balance, I am just thrown off the other end.

I am very impressed with King's, again, after today. I was seen incredibly promptly, and not just by a nurse, but by the registrar surgeon on my case, two support people who ensure I have what I need support wise pre and post op, as well as a physio nurse whose team will be helping me get back to full working order, whatever the side effects will be.

They sat me down and went through the detail, and took my questions patiently and fully as a team, for as long as I kept going. I wasn't rushed, they listened and explained as much as I needed and really gave me the feeling that they were there for me. I came away with contact details for the team, details of a charity and support group, a reminder that they are always there for questions and a recommendation of two other young women in my situation that I can speak to at any time. I really was very impressed.

And completely shaken up and shocked.

I did ask what they were going to do, and I am glad that I did. I'm not going to write it down but I will tell you in person if you're interested. Logistically it is all incredibly clever and I liked how they were so passionate about it. But it is also quite gruesome when you think that it is going to be your own head.

Mostly so far people have spent an awful lot of energy explaining to me how this is routine, and simple, and although serious, quite straightforward. I know that people think it's comforting, and if they're medical then I take it more seriously. But sometimes (ok mostly) it's annoying when non medical people say "I just know everything is going to be fine". Seriously? Is it? Oh OK thanks, what am I worrying for then?

Woops. Side rant.

Anyway, so when I arrived this morning and they asked what my understanding was I think I tried to be brave and positive, and that worried them. They shot me right down and explained exactly how dangerous it is and all the possible going wrong scenarios. More worryingly they said very clearly they didn't know what it was, or how bad it is and they won't know until they get it out.

I know this of course, but until now I had understood that it was almost certainly benign and pretty clear from the scan that it shouldn't be too difficult to remove. That's not what they said today. In fact they went out of their way to prove the opposite - although I am taking it all with a massive pinch of salt. I don't think they were trying to scare me, just be realistic and manage my expectations. I appreciate a management of expectations!

Just a bit shaky about it really.

I think the main thing now is to get through the next week without too many panic attacks or scary thoughts about the long term side effects. I plan to do fun things now and start being less morbid. Might even go for a walk in a minute. When I've just, you know, had a little rest...

Early morning jitters.

I'm attempting this from my phone for the first time. Not sure if it's really a good idea not to have a little censor later, as it is predictably five in the morning again.

I knew I'd have a spot of trouble sleeping last night. I felt much much better when I went to bed than I had during the day. We had a really quiet companionable day. I managed to cook which I hadn't for a while and I love cooking. And Neville was being brilliant.

But this morning is my hospital appointment, and although I'll probably only be meeting a nurse and talking about the medication I'm on, it has been playing in my mind.

It's going to be more real. The surgery. I mean, there's no messing around now. This time next week I'll be being admitted tomorrow. So really it's time to start asking questions and preparing, and I'm looking forward to getting information on it so I can prepare, but it's still daunting and scary. And it doesn't take much right now for anything daunting and scary to just go round and round for hours.

I want to make sure I ask all the questions while I have chance. But I don't really want to know the answers. Except I do want to know as long as I have option to say nahhh, yer ok thanks. Which I don't. That might be the best paragraph I have ever written.

So I've been awake trying to work out what I'm worried about the most and why to remember to ask. It's actually hard to decipher specific things I'm worried about instead of the big whole so I think it's been a useful exercise:

Side effects
  • Long term memory problems / lack of ability to concentrate or multitask (I love my job but it is busy and manic in periods and I need to rely on these previous skills).
  • Temporary loss or impairment to speech / sight / movement obviously. Just interested in what they are expecting.

  • Getting back on my feet, most importantly how long until I can get home.
  • Independence during recovery. Ok I'll cut to the chase, bedpans and commodes are plaguing my thoughts. I just want to be able to use the the bloody toilet on my own. If possible.
  • Pain. How much will it hurt? (I really don't want it to hurt).
  • What drugs will they expect to give me and for how long and what are the side effects.
  • What's the ward like (can I see it?)
  • When do they expect I'll be able to start running again? Fly again? Be me again.
  • Are there any provisions for counselling and / or support during recovery?
  • Can I bring my laptop into hospital?

Surgery itself
  • What's the deal with the head shaving, or any other prep I might need to do.
  • What is the procedure. I want to know logistics and details. What do they screw my skull back in to? What position will I be in? How long... What's all this about a gamma knife?
  • Do I need the groin thing. Yeesh. If so, when, because I have some serious maintenance to do. Which actually to be fair should be done before surgery anyway. And let's be honest, it's not the maintenance that's bothering me its the I getting injected into a groin artery. But still.
  • Waking up post surgery, if at all possible, what the hell should I expect please?

There are some glaring omissions of course. But thought I better stick to questions I can realistically expect some kind of meaningful answer to. And I'm going to try really hard not to cry until I'm on the way home.

Ok. Brain dump over, should have don't this earlier I might have a little snooze now.