Saturday, October 13, 2012

Henrietta let loose.

So I've been writing this for what seems like a while now, but given the whole ordeal has been less than two weeks so far, I really haven't. It's been very useful to write things down as I spend a lot of time thinking but actually writing it forces me to make sense of my thoughts. And looking back on this is going to be quite interesting I reckon.

I intentionally didn't lock it down, I'm not writing this for anyone else but I didn't want to fall into the trap of only writing for me so I've left it open. But until now hadn't really told anyone about it. Yesterday I set Henrietta free and it's been a bit strange dealing with that. It's not that I'm usually so private (I am) it's more that I'm not sure it's very interesting, or worse, accurate, because I'm just so all over the place. Obviously there is a vanity worry - what the hell will people think about what I'm thinking, but then after everything I've written about confidence and changing perspectives, I have decided to let go. 

When I started, it was really to capture the process of dealing with the idea. I was really interested to see how my mood would change and when I would deal with things and what would plague my mind in the run up to surgery. That in itself was a massive signal that I was only really concentrating on the time up to surgery and totally blocking recovery. It occurred to me last night that actually recovery is the main story here. Getting back to being me.

Now we're on the final countdown it is clear that post surgery and recovery will be a huge healing process that will also be useful to write about. Assuming I can write.

Also, I feel like I want people to know what's going on, although I don't actually want to tell them. I've written a page that explains the tumour and what happened and when I'm having surgery and I'm going to put a link to it on Facebook in a week or so. Then people can read the link if they want more info but not if they don't want to. I have been planning this, but didn't know where to post it. If I put it on here then people would automatically have access to my thoughts throughout the whole process - am I ok with that? 

I think I am. Well, not ok, but willing. Brain surgery is not brave, just necessary. Setting Henrietta free? That is brave. Hello everyone - feel free to comment!

... tumbleweed :)

A knife edge of emotion.

I've been to see Henry Rollins a few times in the past (won't be again) and I found it really irritating each he said "here's another thing..." and launched into a new topic. He got on my nerves quite a lot actually but he obviously thought this was really cool as he did it all the way through, each time I saw him. I feel a bit like that now. Here's another thing...

Emotion. I'm constantly on the edge of tears and it's starting to grate. I've always cried easily, films, books, adverts, articles anything can set me off really and I do enjoy a good cry - but now it just feels a bit predictable and indulgent. 

It's not a big thing, just irritating. It was lyrics a minute ago. I'm not crying at the tragicness of the situation (I actually have it pretty good here!) it's like if this was a film then I'd cry at it. 

If someone says something nice to me, I cry. If someone gets upset, I cry. If I have a random thought about something, I cry, then wonder why I'm crying, remember I have a brain tumour and carry on crying. 

Then, I just snap out of it. Get distracted, do something else and it's gone. Totally fake emotion. Very weird.

Mind versus body.

The last couple of days I've really felt like I've made marked breakthrough, mentally. I am definitely more positive and more motivated and more in control of things. I've made proactive decisions, got a list (did I mention the list?) and actually had plans outside the house with a goal in mind. It feels like I'm looking forward again instead of reeling in the shock I was adamant not to be feeling.

The frustration has been that my body doesn't quite seem up to it yet. I knew I'd been weak but moping around on a sofa all day is going to do that to you. I think I thought that just deciding to be strong again would kind of just sort that out. It hasn't.

Yesterday for example, this is what I did all day:
  • Had a shower (a very quick one, short hait is brilliant in the shower. But it really took it out of me and I had to lie down to recover for twenty minutes)
  • Was driven directly to the train station, where I walked about 100 yards and up about 15 steps
  • Sat on a train in a daze, then walked about 50 yards and about 30 steps
  • Sat in a car without moving being chauffeured like a cellabritty
  • Sat / lay in a friends house all day like a primadonna
  • Walked about 300 yards slowly by the sea (it was lovely)
  • Was driven home to my door by the trusty chauffeur (in rush hour, having had no sleep herself due to toothy Flora)
  • Nearly died of exhaustion

I didn't even do anything all day! I was just so tired on the way home that I couldn't even move my arms. I had to psyche myself up into answering the phone, and I had spent the day literally sitting down.

Slightly worried about this and really it's quite frustrating. I just don't understand it as this tumour has been there for years, it can't be making me tired. The drugs have come down in dose now and realistically are not wasting my muscles away - they're bloody steroids for gods sake. And mentally? I just don't get that mentally trying to process big news can make me actually weak.

On the plus side though, my legs are quite thin. Shame I can't actually walk on them and show people.

Today we have a bit of a day planned and I think I might have been a bit over ambitious. Drinking tonight in Camden is looking unlikely after all. I wanted to do it for a few reasons, to make an appearance and say happy birthday, get the hideous hair situation out in the open, be a bit normal, achieve a mission and therefore feel better. (Notice I put all the selfish reasons at the end, should probably read that list backwards).

Anyway the point is I've kind of been working up to it and hoping it would be a watershed but after yesterday I am ready to abandon plans and that would be a shame. I need to make sure that it doesn't get me down though as that would be rubbish. I do feel like I have improved so much mentally and am way more positive, I don't want an aborted mission to set me back again.

Come on body - buck it up a bit!