Tuesday 27 September 2011

Virtual insanity.

For the past two nights, I’ve taken part in a ‘writing collaborative’. And, without wanting to toot my own horn too much here, they’ve been pretty big deals. I mean, Jack Black invited me to the first one. In I walked to the pristine white, hangar-like lecture theatre, all pigeon-chested and Smythson-notebook-cocky, ready to blind the likes of Steven Spielberg, Richard Branson, Stephen Fry and Kristen Wiig with my world-changing ideas for – as Jack had so carefully briefed me – ‘A Great New Thing’.

In fact, so great had I considered my Great New Thing ideas – for businesses, for movies, for books – to be, that I’d barely even worn a slick of mascara to the get-together, for fear of my genius concepts being overshadowed by my outfit (jeans and Radiohead t-shirt) or styling (birds-nest hair and wonky glasses). It was only upon finding my Great New Thing game-changers on the receiving end of hundreds of barely stifled titters and pitying eye-rolls, however, that I began to realise my pecking-order in this enormous room of writers: I was barely fit to shine their similes.

So why, then, had I been asked to attend in the first place? I mean, yeah, I make an amazing brew, but was that really it? Perhaps they just needed an easy target to mock, or had some kind of work-experience quota to fill. Whatever the case, my personal invitation was beginning to bother me – just why the hell would Jack Black invite me to something like that? Well, I’ll tell you why Jack Black would invite me to something like that: because I’m on an inordinate amount of morphine.

And also because, the moment my eyes are closed, I appear to be existing in a freakish parallel universe in which all that’s important is leaving behind a serious, high-profile – and seriously high-profile – mark on the world. I mean, sheesh – the other afternoon I interrupted Pete’s nap by nattering away about the necessity for an immediate weapons amnesty, ferfuckssake.

Back to my morphine-induced alternative reality, however, and among its most freakish features is its ability to pick up where it left off – or, at least, vaguely where it left off – several hours between sleeps. Hence last night I found myself at another ‘writing collaborative’, albeit on a much smaller scale, in a library’s basement room with only Jack Black, Sean Lock and that woman who did the judging on Show Me The Funny – who, for the purposes of proper identification, we shall call Kate Copstick.

Kate Copstick’s idea for a Great New Thing was to produce a book called How To Live (I do hope my dreamtime colleagues have better ideas in real life) – a book which wouldn’t just write about all the many ways and means in which one might, as she put it, ‘live well’, but would display them, almost like a magical scrapbook: hence, pleasing textures would be there to feel, gorgeous pictures would be there to see, beautiful noises would be there to hear, and wonderful feelings would be there to, well, feel.

‘Does anyone actually need a book for that, though?’ I’d asked. ‘Isn’t that just, y’know, life?’
‘No. It’s the experience of life,’ was her patronising answer. (I’m very sorry about this fictitious exchange, by the way, Kate Copstick. Why it was you in my dream and not, I don’t know, Meryl Streep or Zac Efron or Wile E Coyote, I have absolutely no idea. I actually happen to think that you’re a rather lovely human being and that, were we to meet in a Jack-Black-arranged ‘writing collaborative’ in the basement of a central London library, we might perhaps get on rather well.)
‘Precisely,’ I’d said, ignoring Jack’s sideways death-stares by continuing to argue back. ‘So nobody needs a book telling them how to live it.’
‘Well I think we’ve already established that your ideas are worth shit,’ said Kate, having a little giggle with Sean Lock about my pitiful performance at last night’s meeting to establish the nature of the Great New Thing.

And then, calm as anything, I allowed my real and virtual worlds to collide. ‘Actually, Kate Copstick,’ I said, hands on hips, ‘I think you’ll find that, on this particular subject, I am the WORLD FUCKING AUTHORITY.’
Kate Copstick looked like she wasn’t normally argued with in such a manner.
‘Because as it happens,’ I continued, ‘in the last few days, I have discovered that, in fact, if ANYONE knows how to live, it’s ME. For I have, at the age of 32, with the revelation of widespread secondary cancer in my bones, discovered that my days of living the glorious life which you are so keen to replicate in book form are, I’m afraid, rather limited.’
Well that sure took the wind out of Kate Copstick’s sails. Sean Lock’s, too: in fact, to such a point that he instantly disappeared. Kate looked to Jack, Jack looked to me, I looked to Kate. And, with a sudden ‘aah’ of realisation, Kate looked right back at me.
‘Ah, okay, I get it,’ she said. ‘I get it!’
Jack nodded.
‘The Great New Thing…’ Kate said to Jack. ‘She’ll be doing it.’

Now, there are a lot of things that these dreams could mean. They might mean that, after three years and three months of writing this blog, I have finally – finally – marched over the do-not-cross line of sanity. They might mean that morphine is a more powerful drug than even this long-time user gave it credit for. They might mean that, proud as I am of my achievements to date, they’re a mere drop in the ocean; they might mean that, however old I get, I’ll never escape feeling like a teenage dork; or they might mean that I’ve developed an unexpected crush on Jack Black. I’m more inclined to conclude, however, that my dreams point to two things: firstly, that – as is perhaps perfectly natural upon being told you have a disease that cannot be cured – I am concerned about the legacy of work I’ll leave behind. But secondly – and more importantly – that no amount of subliminal messages in freaky morphine dreams can tell me How To Live, thank you very much.

But that’s for another time. And so, as is customary, let’s address the first thing first: my legacy. Having written so long about the alternative reality (which, to be perfectly honest, is far more interesting than what’s going on in my pyjamas right now) I ought to spend some time here giving you the real-world picture: the one that, I am afraid, is even more difficult to read than a drug-induced hallucinatory argument with Kate Copstick. My last post revealed to you that for some time I’ve been in a fair bit of pain; pain which was – only naturally – attributed to my back-break of 16 months ago but which has, in fact, revealed itself to be a secondary cancer spread to my bones: one which cannot be cured, but can, as we are now beginning to attempt, to be managed for some time yet.

With my first diagnosis, then, there was an internal dialogue that went: ‘Oh shit I’m going to die’ / ‘Oh get over yourself of course you’re not going to die’. This time, however, was more ‘Oh shit I’m going to die’ / ‘Oh SHIT I really AM going to die’. And so, if you’ll forgive my bluntness, there’s an acceptance that comes with it now; that has to come with it; that I want to come with it. (Hence let’s cull the ‘you’ll beat this thing just like you did before!’ messages, please, lest I be forced to retort with ‘er yeah, but I won’t, will I?’) Thus, where once I was scrapping to stay alive in order to have a long future, now I’m scrapping to stay alive in order to have an immediate future – and, daft as it might seem, a past. Previously I wondered what I was going to do, now I’m wondering what I’m going to have done. And right now, that’s learning to be content with being remembered as ‘the one who wrote about cancer’. If indeed, it’s not cocky to assume that I’ll be remembered at all.

But back to the immediate reality. The time between my last post and this has seen an often frightening schedule of scans and tests and consultations with all manner of different specialists (oncologists, secondary breast cancer nurses, pain consultants, palliative experts, relaxation therapists, you name it) all designed to keep my pain – AKA, the stuff of cruciatus curses – to a level which we’ll be able to manage indefinitely. My course of treatment has since been decided as well, and I am hereby on a three-weekly cycle of chemotherapy designed to keep my cancer at bay, which I’m taking in tablet form (two weeks on, one week off) and which will, I promise you, be nothing like that which I experienced for my primary cancer. As well as that, I’m having a ‘bone juice’ called pamidronate aimed at keeping my bones as strong as possible, administered by IV drip every third Wednesday in the Royal Marsden’s day unit, along with continued morphine and calcium and various other pain killers and gut-protectors and shiz. These things will, as far as anyone is able to say at present, continue forever. To which, of course, Peter and I had to ask the most difficult of questions: ‘what are we to assume by “forever”?’

I’ll preface what comes next with there being no hard-and-fast rules where life expectancy is concerned, and there being no way to predict what might happen in the meantime… but of course you’re not listening to that, are you? So instead I’ll tell you exactly what we were told: that an average prognosis of someone in my position is around the four-and-a-half-year mark. I’ll also tell you that fronting up to my diagnosis in that way (and when I say ‘me’ I of course mean Pete, Mum, Dad, Jamie, Leanne…) hurt us all like hell and that I therefore simply cannot allow us to do that any more. We’re not going to think of it like that. AND NEITHER ARE YOU. We’re just going to carry on as normal, aren’t we, blogging and piss-taking and shopping and holiday-planning and telly-watching and singing and snoring and laughing and loving and being as daft as we are every other normal day. AREN’T WE? Good.

Which brings me, quite neatly, onto my second point, about the ‘living well’ stuff. Because, in first wondering why the morphine-dream Jack Black asked me along to his ‘writing collaborative’, and then in wondering why he agreed with Kate Copstick’s realisation that I’d be responsible for the ‘Great New Thing’, whatever it may be, I can only see one answer. Because I’m the right girl for the role.

See, maybe the Great New Thing isn’t a business or a movie or a book or anything like that: maybe the Great New Thing is, quite simply, the process of looking at your life and realising, with enormous gratitude and stratospheric jamminess, that there’s absolutely nothing you’d change about it – not the way you’ve done it so far; not the way it’s going to be lived from now on; not even the legacy you’ll leave behind. So maybe I’m the girl for the job because I just don’t need the advice of Hollywood writers nor worldwide super-achievers nor multi-millionaires nor bolshy comedy critics. Because, when it comes to that magical business of How To Live, by ’eck, I challenge anyone to do it better than I have.

Friday 23 September 2011

The post I never wanted to write.

Early on Tuesday morning, I lied to my Twitter followers. ‘Hello,’ I tweeted. ‘I’m going away for a few days.’ But, in fact, I wasn’t planning a week off, nor was I packing my sun hat for yet another of my Judith Chalmers jaunts. In fact, I’d just been told that I have cancer. Yes, have. We’re back to that bastard present tense.

And so, since some of you may have noticed in the interim that Ive been rather abruptly and conspicuously absent from my usual online hangouts, you might even perhaps have concluded, as is often the case when Im not boring the arse off you with status updates about my telly habits and tweets about my toilet habits, that something is up. And alas, Im afraid you'd be right, you clever buggers. 

There is no easy way to explain what must come next, so I’m just going to launch it at you as necessarily abruptly as it was launched at me mere moments before that fib of a tweet. So here it is: my cancer has returned. Not as a localised recurrence, but a distant spread. Its now grade 4 (as we know, there is no grade 5) which is also known as a secondary cancer or, to be blunt, a cancer which cannot be cured.

The spread is to my bones: not just in my back, as was first my suspicion, but everywhere, in the form of dot-like tumours (worst in my spine, hips, shoulders, ribs, clavicles, sternum). All of which explains the increasing pain Ive been in recently whose severity I have, for longer than I care to admit, been denying to those around me – most of all me. (It’s funny – I always used to wonder as a kid whether I had a superpower of some sort, and had an inkling that it might be a superhuman pain threshold... turns out an oncologist has since confirmed just that, albeit in a somewhat less superhero-ey manner. Henceforth expect to see my undies on the outside of my leggings.)

To repeat what I said above, this cannot be cured, but it CAN be managed. So heres some good news. In terms of my prognosis, we’re not talking months, but years: hopefully lots of them. (My ultimate goal, bizarre as it may sound, is to outlive Sgt Pepper.) And here’s some more good news: there is NO spread to my organs. Hence Im told that there are plenty of things we can do to keep my pain to a bare minimum, to keep the dots at bay, and to ensure me a very good quality of life. Those things began on Monday/Tuesday this week when, after a several-weeks-long battle to get taken seriously about the pain in my back, shoulders and head (yep, we’re back to that fucking Tupperware again), a final trip to my GP turned into yet another trip to A&E, which then turned into an emergency trip to my beloved Smiley Surgeon, who kicked enough ass to get me a skinful of morphine, a canister-full of ‘laughing’ gas and an ambulance trip to a ward at the Royal Marsden, from where I type this post.

The time inbetween, if you’ll excuse me glossing over the detail (this, alas, is no time for detail: I can barely even get my mind around the headlines) has been a terrifying whirlwind of scans, X-rays, tests, CTs, MRIs, bloods, checks, scary conversations, tears, and confirmed – and re-confirmed – diagnoses.

My schedule of treatment remains to be decided – the ever-reliable Curly Professor is charged with choosing the necessary course later this afternoon­ ­– but it will most likely include a number of methods designed to keep my secondary cancer at a manageable level for as long as the NHS is able. Such methods will include (again, forgive the childish terms for now; I’m still learning the language) a three-weekly intravenous infusion of ‘bone juice’ to transfer calcium from my blood to my bones (where it’s most needed), as well as new injections of hormone therapy, pain-reducing radiotherapy wherever necessary and – sharp intake of breath – a possible course of chemo which, I am assured (oh, who am I kidding – which I have insisted) must NOT be like my last experience. ‘You’re talking about quality of life?’ I said to one consultant. ‘Well this,’ I declared, tugging on a strand of shoulder-length hair, ‘is my quality of life. AND I’M KEEPING IT.’

I apologise, dear reader, for this shitness landing in your inbox/Twitter stream/Facebook page so unceremoniously. But frankly, it’s news that just needs to be out there now and this seems as good a method as any to do it. I further apologise for the lack of replies I’ve sent to your lovely declarations of support following my last post about my panic-attacks (oh, how I hate having been right about that worry); and I apologise yet further to all the people who have been hearing this devastating news throughout the course of the week, only to get in touch with immense offers of assistance and affirmations of love and hear nothing back from me. In time, I hope I will be able to reply to most – if not all – of you, with something that’s strung together a bit better than this barely cohesive stream of worrying words.

All of that said: I am, of course, happy to answer any questions you might have, whenever you might have them. I want to be as open and matter-of-fact and kick-ass about this as possible, and I want you to be too. This is, of course, utterly devastating, but Peter and my family and I want to do our utmost to see it as a relief (hey, it could have been worse); a privilege, almost; an opportunity to live as exceptional an existence as we can for as long as we are able. Which, in my language, pretty much translates to continuing to live the incredibly lovely and happy life I currently enjoy (just, yknow, without the regular angry emails to Sky/BT/British Gas).

Im sure theres plenty more youd like to know but, at this early stage, I would encourage you not to Google, please, and – if you must – instead refer to this info sheet from Breast Cancer Care, until such a time as I am able to be more specific.

What I need from you now – and yes, Im getting all cancer-bossy again: deal with it – is to please remain calm, to keep your seatbelts fastened, your senses of humour intact and, if you have the ability through a phone or an email account or a Twitter reply or a Facebook message, then please please just BE A MATE to my husband and my parents and my brother and my family and my friends. As shitty as my health outlook is at the moment, I’d still much rather be in my position than theirs, and it would thus make me immeasurably happy if you’d just, y’know, be there for them.

Because Im a lucky bugger (ha, yes: lucky me) with a helluva lot of mates both in person and online, there may be a number of responses to this post. I will, as ever, be hugely appreciative of them but, again, please forgive me for not replying. Im tired and Im emotional and Im on a dizzying treatment schedule and my first priority must remain keeping my pain at bay. But now Im back in the world of the strangely cathartic therapy that is blogging and social media, this will, again, become my preferred point of contact and I promise I’ll do my best to be available online as regularly as I ever am, whingeing just as much about X-Factor contestants as cancerous bones.

I’m sorry for bumming you out with all this, just as I’m sorry for lying to you in that tweet on Tuesday morning. I just needed to buy some time, is all: for the hospital admission, for the scans, for the treatment, for the management of pain, for the confirmation of my diagnosis, for my Peter, for my family, for my friends and, of course, for the inevitable return to the shit jokes and cacophony of expletives that must follow any cancer diagnosis. For the sentence which followed ‘I’m so sorry, you guys, but my cancer is back’ wasn’t a motivational message or an inspiring anecdote, or a go-easy-on-everyone nugget of wisdom, but instead a Lisa Lynch standard: ‘oh, and I’ve left skid marks in the loo and you’re just going to have to fucking well deal with them.’

Sunday 4 September 2011

How to be.

I’m reading Caitlin Moran’s How To Be A Woman at the moment. I’m only a handful of chapters in, but already it’s chimed with me in more ways than I care to admit. The book begins on her thirteenth birthday, a day she spends being chased by insult-and-gravel-hurling boys. Given that my own thirteenth birthday was spent on a plane from Florida and the only put-downs I ever had to handle as a kid were so embarrassingly ill thought-out they were the bullying equivalent of picking a fight and then hitting yourself in the face, it wasn’t so much Caitlin’s experience that I could relate to, but her subsequent recounting of the day.

‘I am, by and large,’ she says in the book, ‘boundlessly positive. I have all the joyful ebullience of an idiot.’ Hence her thirteenth-birthday diary entry didn’t recount the gravel or the playground-chase or the cries of ‘gyppo!’ and ‘boy!’, but the lovely things she’d had to eat that day, her excitement at getting a teenage ticket for the library, and how the man next door had asked whether her family would like some chairs he was throwing out. (‘We said YES!!!!’) And here’s her reason why: ‘I should put everything in, I think… but I don’t want my diary to pity me. As far as my diary will know, I had the philosophical upper hand there.’ Bingo.

It probably says a lot that it’s taken the words of a then thirteen-year-old girl to best communicate what I’m trying to say in this post, but there we have it. For I, another hopelessly cheerful woman for whom things have to be GREAT to be good, and for whom it’s not worth being seen or heard or read unless she can do so with a MASSIVE SMILE on her face, I completely understand the proclivity to edit out the shit stuff in favour of a happier story.

Take last Monday as an example – no, the example. Last Monday was Gardenbury, the garden party conceived in summer 2010 when my back-break put paid to our trip to Glastonbury. This was, therefore, the second year of the do, and it was lovely. It was lovely because the sun was out, it was lovely because many of our mates were there to share it, and it was lovely because – let’s be honest here – I throw a ruddy good party. Chiefly, though, it was lovely because I fucking well wanted it to be lovely, no matter what the weather, or the turnout, or – more importantly – the context.

This, then, is the point at which I must tell you that context: a context which is quite at odds with my above preference for writing about the shinier stuff, and a context which has my heart beating faster than I’d like, my brow creased into a stubborn frown, and my eyes involuntarily leaking tears at the prospect of revealing. A context which boils down, essentially, to this: I’m struggling.

And so, back to Monday. On Monday I was surrounded by friends, all of them seeing the me who mixes a great margarita and crafts a killer playlist and makes a superhuman effort to keep the kids entertained: in short, the me I want them to see. The me they didn’t see, however, was the one whose husband considerately ordered her to bed the moment they were alone in the flat; the one whose earlier bump on the head, when a bunch of stuff fell out of an overhead cupboard, was to become the tiny piece of plaster in the ceiling that gave way to a flooded flat upstairs; a catalyst for a sudden tidal wave of blind panic.

What followed next has been coming for a while. That said, I’m not quite sure what to blame it on. Perhaps it was in response to turning 32: the age at which I had always assumed I’d be a ‘sorted’ woman. Perhaps it was because work’s been a little quieter lately, what with the summer holidays and all. Perhaps it’s because I’ve passed the three-years-post-diagnosis mark. Perhaps it’s because P and I have, for the first time in ages, dared to think about our longer-term futures. Or perhaps it’s simply because I’ve had the space – or the inclination, or the time, or the loosening grip, or whatever the fuck – to let what’s been coming, well, come.

Ordinarily, I can handle my worries by keeping both calm and busy: I can talk myself round from panic attacks by repeating the mantra of reasonable thought that Mr Marbles taught me, and I can deal with my insomnia-inducing fear of never waking up by breathing deeply and taking a sleeping pill. But, for one reason or another, that bump on the head from some falling Tupperware (yes, Tupperware) did away with my ability to just deal, taking my concerns from a carefully managed, cleverly concealed nuisance to a full-on, in-your-face, alert-the-masses crisis, culminating in my birthday being spent in the surrounds of a stunning hotel in which I sobbed my way through the evening, convincing myself and my husband that my head-bump had, in fact, revealed another tumour… because, after all, Smiley Surgeon said himself that he’d be less concerned about a recurrence in my breasts than one elsewhere in my body: my bones, perhaps, or my lungs, or my back or, as was clearly now the case, my brain.

Or was that the culmination? Was it instead when I ended up in A&E the following day in a weepy consultation that concluded in a diagnosis of concussion? Was it when my folks caught me on the phone in a moment of tearful panic that revealed to them the frightening extent of my hitherto veiled dread, forcing my Dad into a three-hour motorway run at 11.30 on a Wednesday night to stay with me while P had to be away on the first of two work trips? Or was it this weekend when, with P away on the second trip, my family devised a not-so-secret rota of calling me every two hours to check on my mental state?

As much as I’d rather use this paragraph to make some crack about Tupperware having failed to seal in the stuff I’d hoped to keep air-tight, I fear a wiser – if not easier – thing to do is come clean about just how much this unspoken fear has been bothering me. Because, again, I don’t know why, but lately I’ve been reliving – in the most unscheduled, inconvenient, worrying way – the panic I experienced on the day after I was told the extent of my diagnosis; the panic in which I was utterly – and, yes, irrationally – convinced that I was going to die. (Ever watched the Noël episode of The West Wing? Well, that.) And, believe me, that unbearable, suffocating, all-consuming panic on that summer-solstice Saturday morning was, without question, the worst moment of my life. I’d happily take a thousand diagnoses over that moment of panic.

And so there’s your context.

The reason I hate to admit to all of that is that I thought – nay, hoped – that I – nay, we – were done with all of this. I don’t want to blog about this stuff any more. I don’t want the people I love to see me as ‘the problem one’. I don’t want to admit difficulties to folk who’ve had to put up with more than enough of my bullshit (or should that be Bullshit?) already, thank you very much. I don’t want to discuss this stuff at all – not with a therapist, not with you, not with my friends, and not with my family. I don’t want to deal with the shit that comes with it: the inevitable return to therapy, the invitation to worry about me, the head-tilts and the altered opinions and the eggshell-footprints and the bloody pity – that odious, futile, repulsive pity! I just don’t want to talk about it. I don’t want to talk about it one bit. But, damn it – I have to talk about it.

So since we’re very begrudgingly talking, then, you might as well know the rest of it. You might as well know that P and I have finally dared to think ahead – and found it not exciting, but ruddy terrifying. You might as well know that we are only now accepting – as though we’ve subconsciously appreciated that it must be dealt with at some point but have been putting it off for as long as possible – that we can’t have children. You might as well know that none of the above makes it any easier for us to decide what the hell we want from our lives. You might as well know that, yes, we have considered other options. You might as well know that, no, none of them are still any likelier to happen than either of us getting a mohawk. And you might as well know that our reasons are, despite this sudden outpouring of honesty, for us alone to know.

All of this might sound angry. And if it does, that’s because I am. You see, I kind of skipped the anger part. I did it for about a day but, that aside, if anyone’s ever said ‘it’s not fair’, I’ve met it with ‘no it ain’t, but we’ve got to get the hell on with it’. And I’ll get back to that answer again. For now, though, I’m pretty bloody cross. I’m cross that I can’t, as I had wrongly assumed, store away The Bullshit in a tiny box and get on with the rest of my life. I’m cross that no bugger thought to mention how one little diagnosis wasn’t just flagging up an immediate medical problem that must be dealt with, but was in fact changing the entire course of mine and P’s futures. I’m cross that my mental breakdown was spurred into action not by whisky or sex or cocaine but fucking Tupperware. I’m cross that I’m STILL writing about this shit, and fast becoming one of those humourless, bore-the-arse-off-you bloggers that continually whines on about some medical problem or other. Most of all, though – and this might seem rather daft in light of the bigger issues at hand – I’m cross that I can’t be happy, chirpy, carefree, smiley, boundlessly positive, hopelessly cheerful, Gardenbury Lisa all the time; presenting to the world the me I want to be.

But, as two particular conversations with very dear friends who’ve been on the receiving end of my sudden outpouring of crazy appear to suggest, the world doesn’t seem to mind too much. My friends are happy just to be of service, preferring any contact at all to my usual tactic of shutting myself away when things are less than perfect. My husband and family, though clearly concerned to the point of new phone tariffs, are relieved by the return to our ‘better out than in’ policy. The only thing left, then, is me.

Step one was on Friday, when I re-referred myself to Mr Marbles in the hope of rediscovering that mantra of reasonable thought. Step two is this, using my blog to put the final nail in the coffin of my charade. Step three, however? That’s anyone’s guess. Perhaps, though, it’s working out what I might have meant by 32 being the age at which I’d be a ‘sorted’ woman. Or, indeed, forgetting all about it. Because maybe that’s the problem? Maybe I’ve spent too long figuring out how to be that woman, when I’d be better off figuring out – through the mess of cheerful uncertainty and smiling panic – how to just be me.