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.

Tuesday, 10 April 2012

99 problems.

The problem with blogging about an illness is, when you haven’t posted for a while, people begin to worry. And the problem with getting to that stage of a period of non-blogging is that you then start to put pressure on yourself to post as quickly as possible, while – if you’re as hopeless an over-thinker as I – endlessly analysing the reason you’ve found yourself without the impulse to blog. And then, of course, the problem with that is, however good you need that next post to be, there’s no escaping it becoming a diarised round-up of what’s been going on in the last two, three – whoa, three and a half? – weeks. So alas, I fear that’s what this’ll be.

As for interesting, newsy things to tell you from the meantime, I’ve got very little. Chemo is – while hopefully nearing its end – getting more punishing as it pushes on; the cumulative effect of constant treatment since September last year finally taking its toll. That’s a contributor, I’m sure, to my increasing ability to spend most of my time asleep – though of course the old ‘black dog’ has more than its fair share to answer for on that front. The antidepressants are, I think, doing their bit: within a couple of weeks of taking them, I felt somehow more able to, y’know, deal – though it’s become clear to me that there are things the pills can’t fix, such as the mounting number of panic attacks I’ve been having – which lately have, rather charmingly, been resulting in a sudden, projectile vomit (the last of which were at 7.45 this morning, when my husband left for work, and then at 9.07, when I wrote this sentence).

Where those attacks are concerned, we’re back to that old problem of me not feeling comfortable when left on my own. I can’t begin to tell you how much this frustrates me, having always been the kind of person who’s more than happy in their own company; and I don’t know where along the line it became such a gigantic problem: when P had to go back to work part-time, perhaps, or maybe when I realised that the end of chemo isn’t going to magically mean a whole new freedom, given that The Bullshit has rather put paid to me being able to get out and about on my own anyway?

That, of course, is even if this next cycle of two chemos over the next two weeks will indeed be my last for a while… As it did back in February, that all rather depends on the results of an MRI and my latest bloods: if all goes to plan, I’ll have a treatment break until such a time as the cancer comes back (which it will, whether in three weeks or three months), and if all doesn’t go to plan… well, I guess we’ll see about that.

If you think those four paragraphs are the sum total of my worries, however, you’d be sorely mistaken; for everything I’ve whinged about on here in the last few months – what’s going to happen next?, how long have I got?, can I find a purpose in the meantime? – still remains… all at the same time as normal life is continuing, time is moving on, seasons are changing, children are being born, work is getting done, reality shows are multiplying, and the younger residents of Coronation Street are becoming ever more orange.

Amidst all this, then – and regardless of the answers to the questions above – I’ve still got to (because I still haven’t) find a way to live. Today I’ve tried getting up early instead of sleeping til whenever, adhering to the ‘write blog post, hang washing out, get hair done’ to-do list I drew up in my mind last night. Yes, being on my own means I’m pretty much confined to my flat (given that the bone disease means I can’t walk too far, and the brain disease means I’m no longer allowed to drive) but I’ve somehow got to find a way to make the days when there’s no option but to be on my own worthwhile. Otherwise, what’s the point in going through so bloody much to stay alive?

If you’re still with me by this point, you deserve a hefty pat on the back. See, I appreciate that you’ve been hearing this same sentiment, one way or another, for months… and yet I’ve still not cracked the fact of, quite simply, knowing how to live when you’re in a situation such as this.

I’m trying though, whenever I can. Please believe that I’m trying. I’ve booked a small European holiday with P and my folks. I’m making plans to re-do the bathroom and sort out the kitchen floor. I’ve started trying to do some work again – but only a small amount; only what I can reasonably manage – and it’s felt good to be doing something for a purpose. I spent last week in Derby getting a much-needed change of scenery and spending lovely, quality time with the family I miss so much. And over the Easter weekend P and I saw friends, went for dinner, hung out like a normal couple – and loved it. And who knows? Maybe if all the right results end up with me not having to go back for yet more chemo in three weeks’ time, life will look a bit more like this, because I’ll be feeling well enough – hopefully of both body and mind – to maintain it.

The time until that decision is made, however, is going to be inevitably grim. And I think I am – we are – as prepared as we can be for it. I’ve learned not to second-guess these kind of tests, and so instead I’m just hoping – praying, even (and I’m not even sure who to) – for a decent outcome. Because, by gawd, I’d like a break. I’d like people to worry about me less. I’d like to worry about myself less. I’d like – if only just for the summer – to blog about the nicer things I’ve been doing, and I’d like to spend less time juggling – and fretting about, and being panicked into vomiting about – my problems. And, given the circumstances, I don’t think that’s a lot to ask. I just want to make my days good.