Wednesday, 25 April 2012

Coming out.

The day before yesterday, with my husband at work, I got dressed, picked up a set of keys and left the flat, shutting the door behind me. Y’know, that thing – that ordinary, mundane thing – that you do every day. Boring, innit? It says a lot about who I’ve become since my secondary diagnosis, then, that this most uninteresting of everyday occurrences was one of the most exciting things to happen to me in ages, given that leaving the flat by myself is something I haven’t done since – gasp – September.

The title of the most exciting thing to happen since then, however (well, the most exciting since the birth of my nephew), goes to something that, on the surface at least, seems infinitely more deserving – not to mention rather overwhelmingly unforeseen. I hinted at it last Wednesday when I tweeted an excitable missive from my chemo chair, promising a blog post explaining all very soon (apologies for the delay there, by the way – this last chemo is proving a right mofo to get over) so I’m chuffed to finally be in a well enough position to write the following sentence…

My treatment has continued to work – not just as we’d hoped it would work, but to an incredibly promising, shocking-my-oncologists level. 
Not bad eh?

And so to the science bit: through monitoring my blood every couple of weeks, we’ve seen that my tumour-markers (ie, those which show the amount of cancerous activity in my body) have continued to drop – at present, even, to normal levels. The MRI scans, meanwhile, have showed that the disease in my bones remains stable, with no new spreads to speak of (it’s almost impossible to judge whether there have been any small differences since the last scan, given the extremely extensive nature of Bullshit in my bones – it is, as we discovered in September, every-ruddy-where). The jewel in the crown of treatment results, however, is what’s been going on in my brain… You might recall that the last scan showed a small reduction in the size of the tumour on my meninges: something none of us were expecting to see, given that a right royal result for us, where my cancer is concerned, is mere stability: provided nothing’s getting any bigger, things are going well. Imagine everyone’s shock, then, when the latest scan revealed that, within the last three months, that tumour hasn’t just remained stable, but shrunk to a point where it’s only now visible as a thickening of the meninges. Or, to do away with the science bit altogether – where once it was a Kippah, now it’s a condom. Magic.

I expect it’ll have been the last paragraph – and not the first – from which you’ll have elicited the most excitement, and too bloody right… as impressive news goes, I’d challenge anyone to come up with something better right now. Me, though? I remain equally (if not more?) impressed with what happened on Monday. I don’t doubt that you think I’m a lunatic for thinking such a thing – admittedly, it is a bit on the daft side – but I have my reasons. In essence, it’s as simple as this: since becoming ill again, my life has changed to such an extent that, for the most part, I’ve become incapable of doing those ordinary, everyday things that most people do without a second thought: locking the door behind you, going somewhere alone, sitting in a cafĂ© with a cup of tea…

The Royal Marsden’s incredible, ground-breaking strides in halting my Bullshit’s progress don’t, of course, change the eventualities of my disease – an incurable diagnosis is an incurable diagnosis – but what it does mean are two key things… 1) I’ve been granted that longed-for treatment break (YAAAAAAAAAAAY!) in the form of at least two months off chemo, lasting until such a time as The Bullshit inevitably begins to creep back; and 2) that, while nobody can say for sure, I’m hopeful – nay, confident – that the ‘months-and-not-years’ prediction might just have been flipped to a more lasting prognosis.

Let’s not get too far ahead of ourselves here, though, and instead concentrate on the meantime where, yes, there’s a social life to arrange and holidays to take (screw you, New York, I’m off to Spain) – but there’s also work to be done; work that rehabilitates me to a place where shoving a set of house keys in my handbag becomes as commonplace to me as it is to you. See, exciting as that moment was, it was also – I’m loath to admit – really bloody frightening, given how long it is since I did anything like that for myself. I’m coming to terms with the fact that, while being off chemo will hopefully mean less sickness and an increase in my energy levels, it unfortunately won’t make much difference in terms of my mobility (where my bones are concerned, the damage is done) – hence the new freedoms I’m hoping to enjoy will still have to come with a walking stick/wheelchair. But hey, leaving the flat with a stick is better than not leaving the flat at all, so I’ll do what must be done. The bigger hurdle to negotiate, as I discovered once I’d left the flat on Monday, is my confidence.

The plan was to spend a few hours with the lovely folk at the day centre of the wonderful, zen-like Trinity Hospice; the institution I’ve mentioned before who are charged with my palliative community care. Their driver, Mick, picked me up, listening empathetically en route like some kind of cabbie-cum-therapist about how long it had been since I’d come out alone, and how nervous I was to be doing something new.
‘So what were you up to before all this cancer crap?’ he asked.
‘I was an interiors journalist, in homes magazines and that,’ I replied.
‘Wow, what kind of thing were you doing?’
‘Oh – um, editing,’ I said, thinking how many worlds away that life seems. It almost felt like a fib, as though I were boasting about my A-level in German when, in fact, I can’t speak a damn word of it now.
‘Blimey, that’s impressive,’ said Mick. ‘You must’ve had to be really confident to do that kind of job.’
‘Aye, I s’pose I was,’ I admitted. 
Images of the Old Me pitching relaunches to editorial directors, encouraging advertisers to invest in long-term partnerships and filming for TV programmes flashed through my mind. Could anything have been further from the current picture, clasping onto my walking stick in the back of a specially adapted charity minibus, impatiently waiting for an anti-anxiety pill to kick in? ‘It just seems so long ago.’
‘Well, you’ve been forced to go to hell and back, love,’ said Mick. ‘And you’re only a baby.’
‘Hmm.’ I nodded, wondering what my Nan would make of her 32-year-old granddaughter getting so much use out the walking stick that she was once every bit as embarrassed by.
‘But we’ll get you right, y’know. You’ll get your confidence back.’
‘Coof, I hope you’re right, Mick.’

I don’t think I’d realised until then quite how much of me The Bullshit has taken. It didn’t happen overnight, obviously – my mobility had been taking knocks for a couple of months prior to my secondary diagnosis – but it was still pretty bloody rapid: one minute I was Me As I Want To Be, with everything going great; the next I was back to being a patient; a patient who could no longer get to the end of her street, who suddenly wasn’t allowed to drive, who had a limited time to live, and who became uncharacteristically anxious at anything from swallowing a pill to the prospect of socialising.

See, the first time around, The Bullshit stole its fair share: my tits, hair, ovaries, body confidence… This time, it seems, it’s come back to take the rest – in particular, the rest of my confidence. It’s the reason I have panic attacks when I find myself alone; the reason I’ve become even more averse to using the phone than I ever was (if such a thing were possible); the reason I’m only fleetingly on Twitter and barely ever on Facebook; the reason I’ve written less in the last few months than I ever have throughout my life; and the reason why something as simple as putting some keys in my handbag and leaving the flat alone has, pitiably, come to take on an Everest-conquering significance.

‘Ere, look,’ said Mick. ‘I’ve been doing this 16 years, so I know how it works. And I know that confident girl’s still in there somewhere. We’ll get her out of you, you’ll see.’
Thankfully – and I hope you’re listening, Bullshit – I’m not too far gone to think that Mick’s just blowing smoke up my arse. I reckon that girl’s still in there, too. Admittedly, she’s pretty bloody well hidden – not just by a kick-ass-disguising layer of uneasiness, but by several layers of oh-so-lovely chemo-weight (I mean, come on – the least cancer could do is make you thin, ferfuckssake) – but I know from my dedication to making this treatment-break count, my determination to get writing again, and my desire to make a permanent handbag-space for my house keys, that the more confident version of me hasn’t cashed in her chips just yet.

I can’t escape the reality that, along with the secondary diagnosis, my life has changed so much that it’s almost unrecognisable. But bit by tiny bit, I can – as I proved on Monday morning – claw back some of the old, locking-the-door-behind-me stuff that I miss so much. Yes, the two exciting occurrences of my past week might seem worlds apart in significance ­– but I’m sticking by the opinion that they’re equally important. Because to me, finally being able to do something like stepping out of my flat – not just after such a long time, but after such a monumental shift in the quality of my existence – feels every bit as celebratory as learning that a shrinking brain tumour has bought me extra time in which to enjoy life’s glorious mundanities.