Saturday, 19 January 2013

The Destroyer

Yesterday (18 January) was the fifth anniversary of my first surgery (!!!). In an attempt to snap some kind of suitable self-portrait as part of my celebrations, this very auspicious shot emerged. It's not me in front of a string of multi-coloured xmas lights, no, no. It's me with  a laser blasting through the bubblegum dustbunny. This might just mean that I won't need another surgery for oligoastrocytoma grade II in ten days' time, because I've already done it myself. This photograph stands as indisputable evidence. Triumph. I'm calling the hospital to cancel right now.

Five whole years, though. I am very, very lucky. The tumour will always come back, it might choose to get vicious, it might not. But five years, and with no other treatments? I feel spoiled and soiled for having ever complained about anything. Seizures? Is that all? So what, Frances. When I start wearing scarves next month, it won't be to cover burns and patches of lost hair. It will be to keep the wound protected from cold and/or from the itchy wool of toques when I go outside. And after that I just get to have a really fantastic high-art hairstyle for a while. I'm stupid lucky, and definitely not as hardcore as some of the other brain bloggers out there. Need to raise a glass to them.

Happy anniversary.

Hi Hospital

There it is, on a sunny but icy day, giving up all its steam to cold city sky. And people wonder why there's an influenza pandemic going on in the city. We're breathing in recycled hospital air. Gross.

The Return

And so begins the New Year. I have landed in a snow-smothered Calgary and no knitted brain toque, as I requested in my last post, has materialized. Cruel. I have been reduced to wearing this standard issue pompom'd item. Its heat-retaining properties are quite good and it has proven to be a good repellant of water and ice, although the lining beneath what would otherwise be very itchy wool does not seem to breathe very well, so it carries a bit of icky oily scalp aroma. I have to remove it carefully when in public, lifting it off my head using slow, delicate movements, treating it like an expensive wig or overly-elaborate hat in case of a gust of stench impose itself on the delicate olfactory senses of the individuals standing nearby. Sigh.

When I started this blog it was meant to serve as a springboard and (sporadic) info-channel for some fundraising efforts: I raised good money, I ran the run, I made some fun notes and admissions, and in some way it was all a retrospective coping mechanism for my earlier tumour traumas. It hasn't seemed to have been working in real-time, however. That is, I'm back in the OR for another surgery in two weeks, yet I've been and am quite blank. I've had incredible difficulty sitting down to write something to send into the ether, so I simply haven't bothered. What am I supposed to say anyway? Why do I feel pressured to say something? At what point do (and this has been bothering me) confessionalism and extensive personal documentation of activities simply become exercises in vanity? Or do they? I like to think that these are handy awareness tools? That within a string of subjective experiences and thoughts put out in the public domain, whoever pops in to this blog now and again, stranger or not, might come away with...? What? More knowledge about brain tumours? More interest, more news? Probably not. And I don't really do any brain tumour advocacy. I'm not super-connected to the world of brain tumour blogs, despite sifting through them now and again, usually when feeling down and alienated. Or maybe that's it. And I am connected, quietly, in that sense. Being one more damaged-but-alive brain babbling away for other damaged-but-alive brains who are also poking around online, looking for something, anything, to do with the cancer that they share with thousands of others.

That, and posting updates in one place makes it a bit easier for globally-scattered friends to find out what's up, because sometimes I'm not up to doing the mass emails, or the individual emails or or cards or notifications or whatnot, even though I know that those people are concerned. Or just nosy. Ha. 

There's no reason why I should worry about not having anything to say, or about lacking a clever way to vomit my emotional turmoils out into the internet. So there may or may not be an explosion of information over the next few weeks and months. Maybe a photo essay, cuz pictures are a no-brainer? So to speak. I've got my cameraman lined up to do things like snapping shots of my legs in those machine-controlled waterwings they put on you after surgery to ensure you don't get blood clots while you lie there in a hospital bed, bored and sleepy and flooded with drugs and surrounded by other groaning post-craniotomy patients who may or may not be screaming at the nurses when they (the nurses) have to re-insert a catheter torn out during a fit of confusion, anger, and embarrassment upon waking from the special surgery sleep to find a tube in their penis. Which happened last time to the old man next to me who couldn't speak English. There were no interpreters around at that time of night, and the struggle between young frustrated nurse and aged, bleeding-scalp elderly man made my head ache even more. I felt awful for both of them, but it went on all night, and I had to ask for more morphine just to cope with the sight and sound of the two of them. It's shit for everybody. It really is.

Anyway. Onwards, blog or no blog. On 29 January, my valiant surgeon and team will once more prepare for armed battle with the Bubblegum Dustbunny in my head. And then I take over again. Kill kill kill.