Tuesday, 24 January 2012

Black or white.

One of the trickiest things about trying to organise my life right now – especially with the increase in the number of times we’re having to visit the hospital – is that, inevitably, the days on which we’re at our various appointments frustratingly tend to coincide with the days on which I’m less ill. It’s just the way it has to go, really: you go in for your tests or your consultations or – more to the point – your chemo, and it does exactly what it’s meant to do: knocks you down for a few days before your body is well enough again to take on the next dose.

What that means in practice, however, is that the times when I’m feeling more like me – the times when I feel like sticking on a bit of slap and pulling out a nice outfit, for example – are those when I’m seen by few other people than medical staff. Hence the limited friends and family who get to visit me these days think I’ve become some kind of pyjama-bound, greasy-haired sloth, while my nurses think I’m some kind of overdone, wannabe glamourpuss who’s striving for the questionable title of the Bet Lynch of the chemo room.

Along with my increased tendency to dress like a normal (okay, normal-to-mutton) human being, however, comes an increased tendency to act like one too. And so, again, those who ought to be getting the good stuff from me instead find themselves on the receiving end of the hurt and the whining and the shitness, while those I probably ought to care less about impressing (however many needles they might be wielding) get the breeziness and the plucky stoicism and the daft jokes. Add to that the fact that P and I have been making an effort to punctuate our increasing hospital visits with other, pleasant, normal-person things (lunches, visits, supermarket-shopping…) in order to say that we were able to do something else that day, and you’ve got yourself a screwed-up existence in which our more fun days are gradually becoming those on which we’re at the Royal Marsden. And don’t get me wrong, Marsden, I bloody love you and everything you’re doing for me – but surely nobody could argue that this is the right way round for things to be.

A textbook example was the surgery I went in for last week. Scheduled, ain’t it so, in Week #3 of my chemo schedule – aka the ‘good’ week – the op was designed to insert a Portacath (or, to give it its proper, so-wanky-it-can-surely-only-have-been-dreamed-up-by-Sky-Sports name: a ‘PowerPort’) inside my chest in order for the nurses to get chemo into me and blood out of me, now that the veins in my arm have finally taken early retirement. I didn’t ought to moan about it, particularly since the PowerPort is going to make my life (not to mention the nurses’ lives) so much easier and finally save me from an existence spent with a forearm full of bruises, but I couldn’t help but see the whole thing as yet another hefty hospital visit that was encroaching on the piteously scant me-time I get these days. Thankfully though, all went to plan – the op went well, the surgeons nailed the proper placement of the port, and we eked out as much fun from a hospital stay as P and I (and my parents, who kindly came down to London to have an excuse to visit Carluccio’s be with us) have become expert at doing.

From time to time, though, that fun isn’t something you brave-facedly enforce on such a situation, but something that’s there anyway. Hence, as I’ve begrudgingly come to accept of The Bullshit all the way along – with the wig-fittings, with the nipple-surgery, with the incessant gooning around in front of important consultants – the more entertaining parts of it don’t always exist just because you’re feeling better; they’re there because, despite the trauma or the misery or the heartbreak of what’s at stake, sometimes the stuff that isn’t meant to be funny is that which has you laughing the most. (You can’t imagine how hard it was to sidestep the ‘humour in a tumour’ pun just then.) And last week’s surgery was a case in point.

Now, I’ve always secretly enjoyed a general anaesthetic. Perhaps that’s just tragically symptomatic of the oh-so-exciting life I lead, I dunno, but each time I’ve had one I’ve nerdily taken pleasure from the little rituals that come with it: the there’s-no-way-you’ll-ever-get-me-to-sleep-mate stubbornness directed towards the anaesthetist; the disbelief of the wholly unnoticed passing of time in which someone’s sliced you open and stitched you back together again without you knowing a thing; heck, I even like those shabby gowns that take years of practice to tie in such a way as to not expose your bum. It’s a bit on the ridiculous side, then, that I always come round from a general anaesthetic to find myself in a quivering mess of tears, just as I did last week.

The waking-up is a funny old experience, ain’t it? And recovery rooms, I find, are funny old places, complete with distrustful wall clocks, body parts drawn on with indecipherable felt tip, and a trippy, morphine-hazed, slowly dawning realisation that you’re alone in neither company nor disorientation. I guess when you add the amount of morphine I’m on already to the additional painkilling injections I received in the recovery room, I’m bound to have seen this particular post-op experience through peculiarly rose-tinted spectacles. But I defy even the most reliable of recovery-room witnesses not to have been as weirded out as I was to wake up after surgery – both in my usual quivery, moist-eyed way and in considerable pain – to hear not the soothing voice of a reassuring nurse, but a thunderously confident, X-Factor-audition-style belting-out of ‘Heal the worrrrrrld, make it a better plaaaaaace…’ from across the other side of the room.

‘What the f--?’ I said, immediately snapping out of my tears and opening one eye in the hope of catching someone’s attention.
For youuuu and for meeeee and the entire human raaaaace…’ Seriously, what the actual fuck…?
‘Lisa, hi!’ said a nurse to my left. ‘Don’t worry, darling, it’s all over. Everything went we--’
‘But I can hear…’ I began, halting her in her post-procedure practice.
There are peeeeeople dyiiiiing…’ Was this for real?
‘Now, if you could tell me whether you’re in any pain...’ she re-interrupted in such a blithe way as to make me certain I’d been given an overdose of anaesthetic so powerful as to wake up imagining I was sharing a recovery room with a female Michael Jackson impersonator.
If you care enough for the liviiiiiiiing…’
‘Pain? Er, yeah, actually,’ I nodded, feeling no sensation in the area that had been operated on, but instead a blinding throbbing in my back and shoulders.
‘Okay darling, that’s no problem – we can give you some morphine to help.’
Make a better plaaaaace…’ There it was again. And getting louder.
‘But I’m hearing…’ I persisted. ‘There’s a…’
The nurse raised her hand to silence me. ‘Lisa, if you could just tell me where the pain is, exactly…’
‘For youuuuu and for meeeee…’ Seriously, what had they put in those drugs?
‘But nurse, listen to me! There’s a…’
‘Okay,’ she interrupted huffily, clearly getting narked. ‘Maybe you can just point to the pain?’ And so I raised my arm and directed it straight at the singing cubicle opposite. (The only one, I hasten to add, with a curtain pulled around it.)
‘Ahh,’ she said. ‘That.’
‘Yes! That!’ I said, perhaps a little too loudly. ‘Is there really someone singing Michae--?’
‘Yes, darling,’ she said drily, as though she’d been subject to it for roughly the last three hours. ‘But the other pain?’ she asked, before I duly complied, gesturing more seriously at the areas in question.

Returning with the morphine injection, my nurse explained that having it would require me spending a little longer in the recovery room. Had I heard my crooning cohort breaking into ‘there's a choice we’re makiiiiiing, we’re saving our own liiiiiives….’ prior to the needle being administered, I might have thought twice about my prolonged stay. But, alas, it was too late – and, with several more milligrams of the good stuff in my system, the episode continued to get weirder.

As with all the other patients in the room, the nurses would occasionally nip over to check on The Singing Spirit of Jacko in the opposite cubicle: the only time, it seemed, when they could get any non-vocal communication out of her. Although with such conversational nuggets as ‘you girls didn’t ought to wear so much of that make-up muck when you’re on shift’ and ‘don’t tell me to be quiet – my husband’s a drug dealer and he’s only got 40% of a brain’, I dare say they wish they hadn’t bothered. Someone who definitely wished he hadn’t bothered, though, was her surgeon who, upon popping into the room to let her know that her operation had gone well, was met with the words: ‘That’s wonderful, doctor. Now I must do something for you,’ followed by a swift rendition of Doctor My Eyes.
‘Well at least you can’t say she’s not in context,’ I thought to myself, now onto my second morphine injection, druggedly nodding my head along with ‘doctor my eyyyy-eeees and tell meeeee what is wrong…’
‘Erm… er, that’s lovely, thank you,’ the serenaded surgeon was saying, swiftly backing into the cubicle’s curtain, ‘but, um, I’m afraid I’m due back in… er yes, see you later, then.’

By my third injection, however, I wasn’t so much enjoying the craziness as frantically planning my own swift exit, stuck in a bizarre Sophie’s Choice between fleeing from the musical mentalist and getting the requisite morphine I needed to keep my pain at bay. Helping in no way was my position lying directly opposite the world’s slowest-moving clock, from where I was becoming worried about what P and my parents must be going through upstairs, given that they’d been told to expect me back at 3pm and it was now pushing 6. And all the while, the rest of us were being treated to an incessant singathon of tunes spanning the entirety of the Jackson career: everything from Never Can Say Goodbye to They Don’t Care About Us and all kinds in between, each with lyric-snippets bizarrely in-keeping with our recovery-room situation. Or, at least, they were until the moment at which I decided I needed a wee. Naturally, then, with my own curtain now drawn and my bare arse perched on the edge of a bedpan, this was the moment at which my melodic mate chose not to help me along by singing, say, Earth Song (‘what about raaaaain…’) or Will You Be There (‘hooooold meeeeeeee like the river Jorrrrrdaaaaan’) or even sodding Don’t Stop Til You Get Enough, but instead switch artists altogether. To Madonna.

Picture the scene, then, if you will: me, in going-nowhere agony, naked but for a pair of DVT socks and a now-untied NHS gown, gripping the sides of the bed, determined not to topple off my bedpan while desperately trying to force out a piss, with a nurse – a nurse I’d told I couldn’t possibly wait another second without wetting myself – willing me along from the other side of the curtain… and all to the sound of Like A Virgin.
I made it throooooough the wilderneeeeeeeess…’
‘Let me know when you’ve finished, Lisa, and I’ll empty the pan.’
Somehow I made it throooo-uuuugh…’
‘I’ve not even ruddy started yet,’ I snapped back, hurriedly trying to conjure up images of Madonna’s Cherish video with the mermaids and all the water.
Didn’t know how lost I was until I found youuu-oooh…’
‘Are you getting there?’ asked the nurse again.
I was beeeeeat…’
‘Guh. I can’t,’ I grunted.
Incompleeeete…’
‘I really need to,’ I explained, ‘but I think I’ve got performance anxiety.’
The nurse fractionally pulled back the curtain to peer at me and, raising an eyebrow as she nodded towards our crooning cohort, added: ‘Yup, but we both know someone who hasn’t...’ A quip which, mercifully, was enough to help me along with my water-based percussion.

See, the recovery room of a cancer hospital doesn’t, on the face of it, sound like the most fun of working environments. But coof, I bet they see some strange old sights in there. Because really, what’s normal in a recovery room? I mean, you hear all sorts, don’t you – people calling out their surgeon’s names, folk chatting ten to the dozen, patients crying or laughing or screaming obscenities… but, from what I could gather, none of them had previously been treated to a full-on set-list from the 1980s. And when you’ve spent your day replacing bloody dressings and emptying bowls of hard-fought urine, it’s got to be a relief to be able to add the odd amusing story to the mix too, right?

That, though, is a reality that works both ways – and so, just as I’m sure those nurses don’t want all their work stories to be bedpan-based, nor do I want all my fun stories to be hospital-based. But lately, with the balance of good days tipped disproportionately in the Marsden’s direction, that’s the way it’s been looking. I’ll take it, like (I mean, hell, I’d rather feel pain to a farcical soundtrack than nothing at all), but it’d be nice if, just once, the stories I could tell were based somewhere other than my hospital or my doctor’s or the edge of a sodding piss-pot.

It’s something P and I discussed yesterday, when we had a visit from one of our counsellors. It came at a fortuitous moment, following a particularly dark few post-chemo days of the usual physical shite along with the now-standard trio of chemical-depression days in which it becomes evermore impossible to grapple with the sheer bloody strain of it all. You see, back in the day, when I was on a set schedule of chemo (six cycles and you’re done) there was an end point; a finish line to make it to. But now I’m on chemo indefinitely, with no such celebratory end point – we’ve just got to keep on for as long as it’s working. Hence, on the days when it’s hard to find the fight through the fog, continuing with a life like that – a life like this – seems like the kind of colossal effort to which, daft as it might sound, there ought to be way more reward than simply sticking around for more of the same. And so yesterday’s counselling session, as I’m sure you can appreciate, was rather nicely timed. 

They’re largely informal appointments, thankfully, just as I think these things ought to be – both in deference to mine and P’s respective ages and the point I made above about none of this Bullshit stuff being as simplistic as to always be impossible or always be jovial… or, indeed, anything else in between. That’s not to say, however, that the sessions aren’t hugely helpful to us – heck, we’re as shocked as anyone what we’ve taken from them. I mean, upon initially being told that we’d be following a ‘mindfulness-based cognitive therapy approach’, both mine and P’s wank-alarms chimed in unison but, in fact, it’s a process that – we can’t help but confess – has helped us to become more accepting of our situation, and of the feelings that come with it. And, as someone who’s previously gone down the CBT route, I’m also rather chuffed that it’s an approach that comes with far less homework and far more, well, chatting.

And so yesterday, we chatted about my surgery and the not-so-soulful soundtrack that came along with it; about the fun ways in which we’ve tried to make the opening month of a shaky-looking year more bearable; how I’m freaking shitting myself about my brain-and-spine MRI on the 31st; how I want the (favourable, please) results out of the way so I can get planning a much-deserved spring break to New York; how I’m going to start poking in the eye the people who, even despite posts like my last, are still. just. flatly. refusing. not to fawn over/weep at/declare eternal love for/grieve me at every sodding opportunity (HELLO! I’M STILL FUCKING HERE!); how spending so much time at home has turned P into the kind of bloke who’s become dangerously attached to his slippers; how I could never have anticipated how purposeless I’d feel now that I’m unable to work; and how at least the new, weird-ass-looking, PowerPort-disguising bump in my chest might at least give me cool-points in Camden pubs where I can pretend it’s a microdermal piercing. (‘Yeah, AND I can insert needles into mine.’) 

It all ended, as the sessions with our brilliant Trinity Hospice counsellor tend to do, with daft talk about P and his new shed/who ate the most cheese over Christmas/devilish things to say to folk who stare at me when I’m in my wheelchair, topping off an enormously useful 40 minutes in which I’d both sobbed to the point of bloodshot eyes and laughed to the point of thigh-slapping – again, just as I think these things ought to be. Because that, alas, is the way life is, ain’t it? Sometimes tragic just comes with a side of funny.

Of course, it’d be simpler if it didn’t. It’d be simpler if our feelings really were as easy to separate as the impeccably kept filing cabinet in my Virgoan mind would like to think. And it’d be a whole lot simpler for me personally if it weren’t for the wrongness of my hospital days also being my good days, the injustice of my iller moments coinciding with family-times, and the unfairness of my emotions never falling firmly into one camp or the other. I suppose right now I just can’t get past how frustratingly imbalanced life is on the fun-scale, is all, and there isn’t a star in the sky I don’t find myself childishly wishing on in the hope that the balance could be tipped just a little bit more in the other direction. But, as even the performing patient – or, I dare say, Michael Jackson himself – couldn’t fail to argue, it just ain’t as black or white as that. But sheesh, it’d be really bloody nice if, somehow, I could make that change. (‘S’gonna feel real gooooood, gonna make a difference, gonna make it riiii-iiiiight…’)

Monday, 9 January 2012

Promises.

I’m not the hugest fan of January. It’s not all bad, I s’pose: telly gets better, there’s the FA Cup to rekindle a bit of sporting excitement, plus a crapload of new toiletries to try out… but, those things aside, it’s just never had a lot going for it from my perspective. I have my explanations – the taking-down of everything twinkly and romantic that made Christmas; the tentative peering around the corner of a new year and the hopes and fears of what it might bring; the seasonal-standard added pounds about which seemingly every magazine cover, supermarket promotion and television advert is hell-bent on making you feel shamefully disgusted – but chief of all reasons, I think, is that it’s the time of the year in which it’s hardest not to be hard on yourself.

Perhaps it’s just because, with the disappearance of the Christmas Project, there’s a new and discernible gap in the list of things to occupy our minds. And perhaps the subsequent result is allowing each tiny, put-it-off-til-after-the-decorations-are-packed-away concern to gradually become a disproportionately bigger anxiety, turning the inevitable introspection of the new calendar year into a whole new excuse to analyse and reanalyse and, aw what the heck, go back and analyse some more. And so, for someone for whom self-examination is less hobby than habit, it can turn January – and its accompanying obsession with resolution-making – into the kind of contemplative catastrophe that’ll drive you sobbing into the self-help section.

It’s on more than one occasion, then, that I’ve had a quietly challenging opening week to the new year, but none I can remember has been quite so difficult as the one that’s just passed. It was perfectly predictable, of course, what with a round of chemo mere days in (now altered, thanks to a new schedule, to require two trips to the hospital on consecutive days), and the subsequent shitness that came with it; shitness which, I think, P and I are fast learning to manage on the physical front, but still struggling with on the emotional front. And so, when you foolishly throw into that debilitating (albeit temporary) depression a nutty necessity to make pledges about what you’d like to do differently in the coming year – and then not just find yourself satisfied at having drawn up a list, but actively squirreling away on Resolution #1 beneath a slanket at 5am on January 4th… well, you’re just asking for trouble, ain’tcha?

But what, you might ask, could be such an urgent resolution that it must be completed under such pressing circumstances? Surely it’d have to be something exciting or ambitious or positive or, at the very least, key to the success of the ensuing few months? Well, hm. Not exactly. Not unless you count entitling a document ‘The Last Will and Testament of Lisa Lynch’ as a particularly exhilarating assignment. So, yes. No bloody wonder the first week of 2012 has been something on the tricky side – as much for my husband as it has for me.

All that said, despite the pressure under which we both put ourselves at this time of year, it’s got to be said that, when we’re serious about a resolution, P and I are pretty darn good at getting it done. Hence when last year we vowed to rid ourselves of debt by the end of 2011, we doggedly knuckled down, tightened the purse strings and had it done it by April. Not to be outdone, then, I figured that – with my post-chemo steroids keeping me not just moodily moon-faced and fumingly fluid-retentive but also wide awake at many an unsociable hour – I might as well make the most of my crabby sleeplessness by turning irritability into action, saving P a job and me a nagging session by commencing the document that neither of us wanted to begin.

So yes, I – we – have now made a will. And while I was at it, I also made a living will: an advance directive outlining the ways in which I’d like to be treated (or, y’know, not treated) in the event that my illness causes me to be unable to capably make decisions or experience an acceptable quality of life. Outlined too are my preferences for how and where I’d like to be for The End, as well as my wishes for what happens afterwards. (Hm, and a very happy new year to you too.) But morbid as that may appear (though let’s level with each other here: it’s also morbidly good sense), my defence is that completing these documents was simply the last thing that needed doing on my get-your-house-in-order list. Well, that and swapping our car for something more accessible and with a more wheelchair-friendly boot, but that’s Resolution #2 and already well on the way to being completed.

There’s rather more to all of this, though, than just my penchant for completing a to-do list. Because much as the will-writing, car-changing, instruction-making things must be done, they’re actually just a bit of a means to an end; a way of drawing a line through pressing concerns in order for me to move onto a far bigger resolution altogether… one which must – for the sake of my health, my sanity and my relationships – be dispatched equally as calculatedly and deliberately. Because this year, dear reader, something’s got to change. And fast.

It goes without saying that making up much of my past few months of 2011 were (as I think has now become the accepted technical term) the bollocking motherfucker of cuntshitting days sent from Satan himself. This, however, is a reality I have come to accept. I accept that it is incredibly, insufferably sad that I have terminal cancer. I accept that it is equally devastating for those I love as it is for me. I accept that my world has been forced to change in ways that I’d rather it hadn’t. I accept that the treatment to prolong my life won’t always make me feel especially well, but that it’s what must be done. I accept that I probably won’t be able to make it to another Glastonbury; I accept that I probably won’t reach my 40th birthday; and I accept that you’ll probably be terribly sad when I have gone because I’m just so damn ruddy awesome.

But what I refuse to accept is a reality that – since the news about the secondary spread to my bones and brain – has been becoming not just patently obvious but increasingly fucking difficult to stomach: that simply because the ‘terminal’ label has now been plastered across my poor little cancer-ridden head, I must henceforth be treated as the kind of vulnerably piteous write-off who might cark it right into your lap at any moment. I’d apologise for the crass exaggeration but sometimes, I’m afraid, that really is how it feels… as though each Facebook-wall-posted ‘xoxo’ is more head-tilted than the last; as though nary a sentence can pass without one ‘sweetheart’ or ‘darling’ or ‘gorgeous’ too many; as though no compliment is valid unless it proclaims how brave or inspiring or remarkable I am; as though each hug or kiss or wave goodbye might be the final one; as though no text message could possibly go by without me being told how much I’m loved/thought about/prayed for.

And yes, yes, I know. It’s lovely. It’s genuinely, genuinely lovely. But you know what else? I don’t need to hear it. And not just because it’s yet another reminder of the shituation as it stands. But also because, more to the sodding point, it a) really doesn’t need to be said, b) really doesn’t make me feel any better and c) really can’t be all we’ve got to talk about… can it?

Much of a whinge as this must be coming across, the fault, I fear, is all mine. After all, you can’t expect to spend your life (hell, even make a living) writing about The Bullshit only for everyone else to shut the fuck up about it. I have, however, begun to worry whether keeping a blog has simply stopped working for me. There’s no arguing about the fact that, during the course of Alright Tit’s life, it’s become rather a different beast from which it was conceived. Where once there were pithy posts, now there is prolonged prose; where once it was a means of keeping focused, now it’s a means of keeping writing; where once it was a compulsion, now it’s more considered. What’s never changed, however, is how enjoyable I’ve found it, what an incredible catharsis it’s proved, or its effectiveness as a method of keeping everyone posted. Or perhaps I’m wrong on the latter point?

See, I’ve always seen my blog as a place in which I can talk about all the cancer stuff to save boring the arse off people about it elsewhere; somewhere I can pour all the answers to all the questions anyone might possibly have in order for us to move onto more worthwhile conversations, like BeyoncĂ©’s baby or Coronation Street or lipstick. But, actually, it doesn’t really work like that any more. Because, demonstrably, with the change in my prognosis (or perhaps with the change in the way I blog, I don’t know) has come a change in the way people now react to me.

Take my Facebook page, for instance. Immediately after posting about the discovery of The Bullshit’s spread to my bones, I received 36 friend requests, all from people who’d read my news, found themselves shocked and, in many cases, wanted to leave a kind word on my wall. Add a brain tumour and that ‘months-and-not-years’ talk into the mix and my daft little corner of the social-media world had never seen so much of a buzz; a buzz about which I was – no, I remain – at once flattered and baffled and overwhelmed. And so what happened next, I suspect, is that I rather fell into the trap of assuming that, given both the seriousness of what had come to pass and the presence of a new and surprisingly concerned audience, all anybody could possibly want to hear from me – be it through tweets or status updates or whatever – were Bullshit bulletins… which, I imagine, did the exact opposite of rescuing people from having their arses bored off.

The resulting outcome, however (understandably, perhaps, during a time when my schedule had never been more cancer-crammed) was that The Bullshit then became king, turning me into its pity-party of a court jester; its foolishly omnipresent, sympathy-garnering voice. But accepting as I am of the privileged position from which I can rat out the realities of cancer, what I flatly refuse to accept is becoming a poster girl for the pitiable.

The thing is, shitty a state of affairs in which I find myself, I don’t recall anyone having called time on my game just yet. And though I appreciate that we’re a little way past me getting what I want, there are still things I want, thank you very much. I want to blog because I love blogging, not to set an example to some imagined cancer community of which I’ve never considered myself a part. I want to be free to tweet or Facebook-post about whatever’s going on in my life without it looking like I’m doing it to harvest concern. I want to get texts and phonecalls and emails filled with gossip instead of worry, and I want to write lists of new-year pledges (#3: finish writing my next book, #4: no, actually finish writing my next book, #5: somehow become Zooey Deschanel) because it’s no different to what I’d normally do – and not because I’m concerned I’m running out of time.

What I want more than all of that, though, is for you to make a resolution for me. See, I don’t believe I’m going anywhere just yet. I don’t believe that every move I make or text I send or kiss I offer might be my last. And nor do I want you to believe it either. So how’s this for a new-year agreement: instead of wasting 2012 mourning a loss that hasn’t yet come to pass, let’s instead just spend it enjoying the loveliness that is the meantime, shall we? And in return, when it comes to the self-scrutiny of January 2013, I’ll go a little easier on myself. Deal?