Monday 28 November 2011

Faith.

It’s been difficult to know how to get going with this post. After the awful bombshell of the last, and everything that’s had to come with it over the past fortnight, it’s been pretty impossible to figure out how best to construct an update on everything I ought to be filling you in on: something that has, daftly, been keeping me awake at night as much as the reality of the situation itself.

In short, I suppose, it’s been a hell the like of which I simply can’t do justice; surely – surely? – the worst two weeks that my family will ever have to endure. And yet all, of course, in the beautiful, bittersweet context of the birth of my nephew Corey James. Within the space of a cruelly confusing 24 hours, it was like being handed both an angel and a devil, each as convincing and important as the other, with arguments to be heard and dues to be paid.

My family, in their unending brilliance, have shielded the grief of my newest diagnosis from Corey with considerable skill, never allowing him to be party to tears or heartbreak; always ensuring that he doesn’t even so much as sniff the anguish into which he’s been born. Jamie and Leanne have, in particular, done all they can to simply do what must be done: being eager parents, dedicating everything they’ve got to raising their incredible son while maintaining a steadfast refusal to acknowledge darker thoughts of The Bullshit.

My folks have, as always, been the very picture of devotion: not just perfect parents, but perfect grandparents, mates, organisers, confidantes and sounding-boards, spreading themselves so thinly between Derby and London and workplaces inbetween that they’re practically tarmaced across the M40. My best friends, too, have had to get used to a new way of doing things: with me so lost that I’m incapable of providing any kind of direction, they’ve formed a forcefield of amity around P and I, giving us the requisite space to find our way through each mapless minute with the stern caveat that nothing cannot be dropped in order for them to be here at a moment’s notice. And as for P and I? Well, who’s to know what we’ve been doing.

Actually, I know full well what P’s been doing: he’s become a carer, and I have hated seeing it happening to him: adjusting his hard-fought and expertly played career in order to work from home, having to construct every day around tending to an ill wife, looking after the food, the finances, the washing, the admin, the health visits, the mobility improvements, the wheelchair ordering, the prescriptions, the incessant numbing din of my shit taste in telly. It’s taken its toll, of course (if ever work dries up, we could each do a marvellous sideline in pimping anti-anxiety drugs) but – in the highest compliment I can pay to my husband – what it hasn’t taken a toll on is the simple gloriousness of just us. Because though P is now carer where I am now patient, we are still we; we are still one; no less secure and firm and unbreakable and permanent as we have been for the decade in which we have now been together. And the fact that something as unshakably pure as that can remain at a time where I have never felt less like myself is, right now, the only thing in which I can find hope.

For while P has been coping through caring, I’ve barely even remembered to exist. Or, to put it in much more Lisa-centric terms, I haven’t opened my post, I haven’t really tweeted, I haven’t sung, I haven’t written, I haven’t listened to 6 Music, I’ve missed birthdays, I haven’t self-tanned, I haven’t kept up to speed with trashy news, I have friends in need who I haven’t been able to support, I haven’t baked my Christmas cake, I haven’t replied to text messages, and until last night I hadn’t even watched a single episode of The West Wing in two weeks. All the things that would ordinarily prove to me that life is ticking over, that everything is still okay, have simply not been happening. I have, however, in a fit of desperation, done my Christmas shopping online – but, judging on a tiny flat filled with giant boxes the contents of which I neither cannot remember nor bring myself to open seems to suggest, it’s not been an entirely successful mission.

Where once I’d have been the flag-waving leader on our tour of cancer, bossing the arse off everyone with The Way In Which This Is Going To Be Dealt, with the latest bombshell I just haven’t found my mojo. I had a brief kick-ass moment upon facing down my first new cycle of chemo, but that soon booted me up the ass when cockiness became excruciating pain and I ended up back in hospital for my second, and there’s been the odd bit of Facebook-wall fighting-talk but, let’s be honest, that’s been more for your benefit than mine. And, yes, shock and heartbreak and devastation and all that have more than played their parts but, when it really comes down to it, I think the biggest of all the emotional hurdles to negotiate right now is simple confusion. Everything, all of a sudden, is just very, very confusing. Rather like being handed a giant, indecipherable matrix of algebra and being told ‘solve that, mofo, or you’re fucked’.

Perhaps the most confusing thing of all for me to get my head around, though, has been the reaction to my news. At present, for example, I’m sitting on several hundred unanswered emails from unfeasibly kind people wishing me well – many of whom I know, many of whom I don’t, and none of whom I can possibly manage the justice of replying to without it being the last thing I ever do. Please know that my telling you this isn’t meant as a brag or a whine or a swank (in truth, I don’t know what it is; I can’t work out how – or even if – to compute it); it’s simply the most extreme means I have with which to explain the puzzling nature of my situation. It’s insane. And, again, it’s hella confusing. Because please, tell me: how do you reason with such angelic, overpowering forces for good in the face of the despicable evil that’s brought it all about?

From the hugely touching messages (and, I found myself surprised to read, the overwhelmingly faith-and-religion-referencing words) that you’ve written to me, apparently you’ve been asking yourselves the same question. And, in an even more confusing turn of events, for a lot longer than I have. See, I’ve always been pretty self-satisfied when it comes to faith stuff. But you, it seems, have spent years dedicating enquiring minds to searching for the right comforts and conclusions, seemingly while I’ve been sitting on the sofa picking Tunnock’s Teacakes crumbs from out of my bra. I’m grateful, I think, to finally be party to the conversation… but where the hell was I in the meantime? Why did nobody tell me this was happening?

I don’t remember a time when I’ve ever firmly believed in God, choosing instead to accept an agnostic conviction that there’s very little that can’t be explained by science. I don’t even remember a time when I’ve questioned my faith in any way; I guess it’s just always been something that, like the allure of Brad Pitt or the gap between Sarah Jessica Parker’s legs, I never imagined I’d be able to understand and, well, haven’t really tried. Throw my first bout with The Bullshit into the mix, then, and ha! Why should I even need to try? Because, purlease, who could possibly deign to know more about the ridiculousness of faith than I? Spiritual beliefs were my bitch, and damn the person who thought they could tell me better. Yeah, damn them and their rickety convictions, unable to draw a clear enough line between black and white, getting confused by faith-shaking bumps in the road when – pah! – what in the name of any so-called God could be any more life-altering than that which I’d already endured? Come on – what?

Well, we’re looking at what. Because, right now, I’d love to be able to be so cocksure with my beliefs as I was three and a half years ago. I’d love to tell you that there’s nothing that can’t be explained away by science. I’d love to declare that gene patterns are the end of all lines of enquiry, I’d love to state that there’s no how nor why in this having happened to me, and I’d love to console you that there’s nothing but coincidence in the cruel timing in which all of this has had to come about. But most of all – oh, yeah – I’d just love to have breast cancer right now. I’d just fucking love that to be my problem. Because right now I’m not just sitting on several hundred unanswered emails atop a tuffet of confusion, but from the uncomfortable position of having had a big old bite taken out of my arse.

On occasion over the last couple of weeks, I’ve brought up the subject of what, in light of my new diagnosis, I ought now to believe in with those who are best placed to understand my confusion: namely P, and my parents. Given that nobody knows me better than they, they’re not freaked out by the panicked faith-frenzy that’s come from my direction; nor the anger that’s come from science not always having the answer; nor even the necessity for me to read out passages of emails from people who’ve felt the need to say certain things in light of the shaky timescale of my prognosis. None of these can have been easy for any of them to hear but, as is customary with the way in which we cope, we’ve done it together. We’ve acknowledged that there are people (many, incidentally, from whom I haven’t heard for years) who are preparing to deal with what may by communicating things they might otherwise not have had the chance to say to me. We’ve concluded that being told such things is a true privilege, and we’ve respected that it’s a rare opportunity that isn’t presented to everyone. The confusing bit for me, however, is that I’m just not on the same page. I’m simply not thinking like that. I’m not there. I’m not ready to make final plans or write last words or hurriedly finish off half-written books; I’ve got a radio to sing along to and birthdays to remember and a West Wing box-set to watch.

Which is why, for the good of my health and my mind, I must remain unwaveringly true to the things in which I do still believe. Because, faith-shaking as this chaos of a fortnight has been, though so much has been taken already, so much more remains. Yes, a significant spread to the bones and brain might mean one thing in terms of survival statistics, but it means quite another in terms of options to try in the meantime. Hence, as my kick-ass mojo hopefully makes a slow and steady return, I think it’s important that I search not for answers to reasonless questions, but instead retreat back into my trusty, expectant, biscuit-crumbed, Lisa-standard headspace, where life is simple and Coronation Street is on series link, and where the things in which I believe – conventional or otherwise – are not to be messed with.

What I suspect I’ve never previously given faith credit for is something I hope I’ve come to appreciate over the last couple of weeks: how genuinely lovely it must be to have rock-hard beliefs in which to find comfort at times like these. And, I’ve got to say, bloody good on any of you who’ve been able to do as much. But bloody good on me, too. Because although the words ‘but where’s MY comfort?’ have lately found themselves pouring from my tearful face over and over again, the truth is that it’s been there throughout. It might not be God-shaped; it might not even be faith-shaped – in fact I dare say it might often be more Tunnock’s Teacake shaped – but that doesn’t make it any less present, or any less of something in which I believe.

See, what I believe in is people. I believe in the people I don’t know who’ve been so kind as to wish me well. I believe in the people who have got back in touch after so many years to say that they’re thinking of me. I believe in the people who have faithfully promised to look after the things that I hold dear. I believe in the people who’ve not known how – or even whether – to approach me, and I believe in the people who really don’t mind that I haven’t opened their post or remembered their birthday or replied to their texts or picked up their calls. But most of all, I believe in the people who’ve seen me through this most unbearable, fractious, horribly confusing disarray of a couple of weeks. Those people know who they are, but what they perhaps don’t know is that they are Gods themselves – and they haven’t just turned this non-believer into a devout fanatic; they’ve genuinely saved her, too.

Sunday 13 November 2011

The worry.

It started with the worry. Not that worry is something that’s become new to me since The Bullshit came along, of course – I’m a born worrier. I even was as a kid.

My Dad’s always had the kind of job in which he’s been required to travel which, when I was little, tended to mean extra presents whenever he returned from somewhere far more exotic and interesting than Derby. My favourite of all the gifts from far-away lands, however, was my worry dolls. I can’t tell you exactly where they came from (what can I say, geography’s never been my strong point) but I didn’t just adore and cherish them to the point that they’re still kept in my bedroom drawer; I used them too. And, lately, with far more worries on my plate than I adequately know how to deal with, I’ve been thinking a lot about them.

The idea of the worry dolls was thus: each night, before I went to bed, I’d take out one tiny, inch-long doll per worry, hold it between my thumb and forefinger and whisper to it my fear which, while I slept, it would work on while lying on my bedside table, making my worry better by the time I woke up. God knows what I told them – perhaps that I was worried about my schoolwork, that the boy I had a crush on was looking like he’d taken a shine to someone else, or that Mum would find out that I’d secretly started shaving my legs – but that’s not the point. The point is, the worry dolls worked. Not in a way that magically dealt with my concerns, making me suddenly ace my exams and become the buck-toothed object of affection in Year 7, but rather in a way that gave me a strategy with which to deal with worry; finding a place for it that was separate from everything else while still acknowledging its importance.

Fast-forward to today and that strategy has changed: my worry dolls have become a therapist. Several therapists, if the truth be known, each of which is there to deal with a different aspect of my current shituation, giving me the space, time and opportunity to offload my altogether more grown-up concerns in an appropriate manner. Last Monday’s session – in which my tendency to worry to quite unnatural levels was the main topic of conversation – was one of the most revealing yet. My initial worry about the brain MRI for which I’d been referred had, it seemed, mutated into a much bigger worry about what might come next.

‘Talk me through it, exactly as it happens in your mind,’ said Mrs Marbles.
‘You’re going to cart me off when you hear this,’ I said.
‘Far from it,’ she assured.
‘Well, you asked for it,’ I said, before walking her through my frustration at having to wait so long for an MRI, my fear of finding out my results so close to Jamie and Leanne’s due date, how afraid I was of hearing about an incurable spread to my brain on the same day that their baby was born, how I feared having to break the news to my family amidst what should have been unspoiled joy, how I was worried that a brain tumour would cut my likelihood of living years to a likelihood of months, how P would cope after I’d gone, how I was so anxious about the admin that would follow my death that I’d begun scribbling down all of my email address and password combinations in case P needed them, and how even that seemed such scant help that I’d talked myself into a suffocating panic attack by imagining a scenario in which our wireless router needed resetting and I hadn’t left P with instructions of how to do it, and…
‘Okay, I think that’s enough,’ she said, stopping me.
‘I told you,’ I said. ‘It’s incessant.’
‘And it’s in your nature,’ she observed, ‘to plan ahead with your worry. But you have to realise that none of this is anything you have any control over… except perhaps your scan.’

Which – following a conversation in which she talked P and I through a technique of stopping worry in its tracks and instead containing it for a scheduled time in which we could problem-solve the things over which we had control – is how I came to make the phonecall that brought my scan forward. Because at least then, I reasoned, in the unlikely event that there was bad news to hear, it wouldn’t come at the same time as my nephew’s birth, given that his due date wasn’t for another two weeks.

But, of course, it did.

It’s going to be some time (perhaps even never?) before I decide how to best to put into context what happened next. My first reaction was that only the world’s most evil, most cruel twist of fate would see to it that I was told that I no longer had years, but more likely months to live mere hours after I became an auntie. But then – upon speeding from one hospital to another to meet Corey James, my nephew and new best friend – I gave eternal thanks to the universe for gifting my family with the most precious, most beautiful reason for all of us to keep going.

Discovering that I have a rare, extensive and incurable tumour in the meninges of my brain was the most terrifying, most harsh, most upsetting, and most horrendously sickening moment of my life. But discovering that I have a nephew – a perfectly gorgeous little boy who I love so much and who, at mere days old, loves me right back – was the most beautiful. Without him, I dare not even try to imagine what kind of unbearable hell any of us would have found ourselves in over the last three days. Even with his angelic presence, this weekend has been impossible to get through. I’m not sure how we’ve done it. I’m not even sure if we’ve done it.

Ordinarily, I’d have a cohesive, smart-arsed, tie-it-all-up-nicely way to finish this post. But today, I haven’t got either the ideas or the inclination… I can’t write; I can’t think; I can’t talk; I can’t even be. Ordinarily, I’d have sent a funny, reassuring, long-thought-through email to break this news. But today, I can’t find the jokes or the consolations. I can’t even find the effort. Ordinarily, I’d have shown everyone the way we’re going to do this; offered comfort to those who needed it; reacted in a way that’d have given us all a clue how this is going to go. But today, I can’t do any of those things. 

Today, I’m not letting you know how I am; I’m just letting you know. I’m letting you know that my cancer has spread to my brain; I’m letting you know that that it’s had a far from desirable effect on my prognosis; I’m letting you know that I’m due to be starting a new treatment this week that will hopefully shrink the tumour enough to postpone its effects for as long as possible; and I’m letting you know that I am – as are my family – devastated to the point of not knowing how to carry on. But I am going to carry on. We are going to carry on. For you, Corey James. Because, regardless of the unspeakable shit that’s been thrown in her direction, the most important thing for your Auntie Lisa to worry about right now is staying around long enough to make you feel as loved as she does.

Saturday 12 November 2011

He's here!

My nephew, Corey James McFarlane, arrived on 10 November at 13.09, embarrassingly early and completely gorgeous (just like his dad).
I like to think my influence has already been exerted...

Thursday 3 November 2011

Every third Wednesday.

I spent the entirety of Tuesday writing a post which, at 10pm after a particularly laboured day, I decided was rubbish and therefore deleted. It’s no big deal; just one of those things that happens sometimes. Anyone who writes must accept that some days it just doesn’t work out right, and be prepared to be brutal with the backspace button. I think the problem with Tuesday’s crap post, however, was that I was writing it out of an obligation to blog rather than an impulse.

I don’t think it’s a major revelation to state that the best posts are borne of the latter; those which come from the heart or the gut or an itch to get something said. And while the mantra of blogging ought to be quality over quantity, those of us who blog must occasionally succumb to a pressure to post which is a) entirely of our own making and b) stupid. And Tuesday was just one of those days.

The way I ought to look upon my blog is as a place to write when I’ve got something interesting or important to say; a place to communicate en masse whenever there’s news; a place to deposit some honesty when I’m feeling inspired. And, most days, I do see it that way. Some days, though, I get it all wrong and, rather than looking upon my blog as all of the above, I instead see it as a place to let people know I’m still here; a place to satisfy the folk who are asking where the next update is coming from; a place to fill the awkwardly quiet gaps when, actually, there just isn’t a whole lot going on.

Other days, though, there’s more to it than that and, as well as all of the above, I wind up wasting several hours dancing around a subject, never actually writing what I really want to write for fear of upsetting someone or offending someone or, as was the case on Tuesday, coming across in a way in which I don’t ideally want to be seen.

I shouldn’t have thought about it as much as I have but, given that I’m a sensitive little sod, a comment left on my last post – in which someone mentioned that they thought I had ‘resigned myself to dying in the near future’ – has upset me rather more than I might have let on; both in my response to it and the way I’ve discussed it with my family. Given how completely, unspeakably wrong that person is, I ought to have just brushed off the remark with a ‘pah’ and a ‘don’t be daft’ and a roll of the eyes. Because – as anyone who knows me will tell you as vociferously as I – there isn’t a speck of truth in that observation. I’ve got 2012 holidays booked, a Super Sweet 40th to plan, a soon-to-be-born nephew to lead astray. And yet, erroneous as the comment is, it’s got under my skin… because now it’s affecting the way I write.

All of a sudden, I’m questioning the thoughts I impulsively want to publish; worrying about admitting to perfectly natural signs of weakness; holding back on writing about my utterly reasonable fears of what The Bullshit’s doing… and all because I’m anxious that, if one person has brought themselves to that incorrect conclusion, more of you might think the same, too. Hence Tuesday’s unpublished post wasn’t just crap, but dishonest. It was 1,500 words of me trying to persuade you that I’m constantly bright and breezy; that I’m dealing with the reality of incurable cancer in a way that’d make you proud; that my new diagnosis may be heartbreaking, but it’s not going to get in the way of me having a marvellously carefree time. And it was the most unconvincing thing I’ve ever written.

Anyone who read my last post will no doubt have already noticed how at odds the tone of this is with the tone of that. In the last, I was all bossy and kick-ass, while today I fear I’m coming across more meek and apologetic. And that, in a nutshell, is the biggest problem when blogging about a subject like living with cancer: the way you feel differs wildly – not just from post to post, but hour to hour; text message to text message. (Yesterday I sent one telling someone what a tough week I’ve had, then mere minutes later, sent another to somebody else filled with exclamation marks and in-jokes.) I simply don’t believe those people who purport to be breezing and positive-thinking and carrot-juicing their way through secondary cancer, preaching the holier-than-thou act about being grateful to the universe for giving them the illness-shaped opportunity to realise just how precious life is. Just cock off, will you? Yes, of course it’s perfectly possible to enjoy lovely times despite your shitty predicament and, by ’eck, there are plenty of things in this mess of a situation in which to find laughter – but don’t tell me for one moment that the fear of what incurable cancer really means doesn’t occasionally grab you by the throat and shake the tears out of you to such a point that you collapse dejectedly into a wet pile of peg-ready washing.

Because – and let’s get real here – in actual fact, all of this is a big old hopeless confusion of not quite knowing how you’re going to feel from one minute to the next: of one moment feeling like you’re hanging on by a pathetically frail thread; the next feeling like you could go twelve rounds with the Tyson family and emerge both unbeaten and with perfect nails. Imagine that being your life. Imagine that being how each day feels. In fact, just imagine trying to keep a Twitter account going in the midst of that mess. It’s ruddy impossible. Not to mention downright exhausting.

The perfect metaphor for this multiple-personality existence is every third Wednesday, when P and I head to the hospital for a full day of cancer-related fun: first a consultation and check-up by a senior oncologist (often the Curly Professor), followed by the age-old charade of trying to extract blood from veins which have already had to endure so much that they’ve either carked it or emigrated to Canada, after which there’s a wait for results of platelet counts and white-blood-cell shiz before my next round of chemotherapy can be made up and packed into a take-home box like the world’s most unappetizing chow mein, then finally the administration of my IV drip of zoledronic acid – a treatment designed to strengthen my pitiably fragile bones, rather like a Ronseal for skeletons. This routine generally lasts from around 10.15am to 4.30pm and is both pulse-freezingly boring thanks to all the waiting around and mind-bustingly difficult to negotiate thanks to the ludicrous amount of new, life-altering information to take in.

This Wednesday, for example, we discovered that a) the tumour-marker levels in my blood had raised, when we’d hoped for the opposite, b) the continued manageability of my pain remains a good sign and that c) due to the unusual nature of my headaches and migraines, I’m being sent for a MRI to determine whether I might have metastatic tumours in my brain. And, in the gaps between, P and I were taken out for an amazing tapas lunch by my lovely publishing agents, discovered that some dear friends of ours are going to have a baby girl, and snogged the faces off each other in the waiting room. This, ladies and gentlemen, is what my life looks like.

But, in writing honestly about that, I don’t want anyone to think that I’m being defeatist or pessimistic or alarmist. When I tell you that I’m bitterly disappointed that my tumour marker is up, I don’t want you to conclude that I’m being unhopeful. When I tell you that I’ve looked into the symptoms of secondary brain tumours and worried myself silly about the similarity to my own experience, I don’t want you to suppose that my outlook is fatalistic. And when I tell you that, when I went to my Uncle’s funeral this week it freaked the bejeezus out of me because there’s a chance I might be next, I don’t want you to assume that I’ve resigned myself to dying in the near future.

Because let me say this once and for all: none of this – none. of. this. – means that that’s the way I’m thinking. As difficult and as heartbreaking and as beautiful and as hopeless and as daft and as schizophrenic as all of this is, the very last thing I will do – even if I find myself in a position where there isn’t the slightest shred of hope – is resign myself to dying. Because, jeez, even if I do find out that that is the case, I won’t be resigned, but going down in a blaze of super-extravagant, hilariously-memorable, creatively-sweary, over-hyphenated glory. For now, though, the reality – and the way in which I must impulsively finish this blog post – is to say that, heck no, I haven’t resigned myself to dying in the near future. I’m just really bloody frightened of it. And fuck you if you think I didn’t ought to say so.