I moved my chair into the sun
I sat in the sun
the way hunger is moved when called fasting. Jane Hirschfield
What can you say to someone who is dying? How can you help a family standing on a precipice of grief? How do you gift the girl with terminal cancer? I suspect that amidst the shock, sadness, and festive over-indulgence some of you will have spent time wondering what on earth you can do that is helpful to us. We are buoyed by the love we have felt from you in trying to answer that question. I can imagine precisely how difficult I would find it to know what the hell to do in your shoes. As for me, rather than mutely receive floral tributes, or fade away in dignified and remote splendour, I thought it was about time to let the torrent of words whirring around my head since Christmas start to fill the pages. And on what better subject to start than the mercenary, practical, deadly serious topic of what you can really do to help.
So, here’s the first thing. It is always, always better to say something than nothing. I know it is hard to know what to say to us. If it was me, I would probably assume that anything I said would be so ham-fisted that silence was the less insulting option. But we aren’t looking for words of great wisdom or succour (though goodness me, some of you have managed that). What matters that you acknowledge that this is happening, and show your willingness to walk this road with us. It won’t always be easy, but it certainly won’t always be doom and gloom. And yes, it’s better in a letter (you can have that one gratis, Royal Mail). But electronica works too. Whether hand written or typed the best missives are short, full of love, news and come with a breezy “no need to reply”. I love to read what you write to me, but I must confess a certain weariness with responding because it requires an acknowledgement of how I
am (it gets tedious to keep writing “doing OK, actually, in the circumstances”) – so don’t be offended if you don’t hear back. But friends, avoid the facebook one-liner “Hi Kate! How are you feeling?” You will not be rewarded. Responses will also not be forthcoming to those committing the cardinal sin of offering me no news about YOU. On my bleakest chemo days I have a low bar for amusement: surely your lives are more interesting than Relocation, Relocation, Relocation? So make an effort, people, whether you entertain, amuse, reminisce or inform.
Second, I must be clear that the looming grave has not lessened my desire for wordly goods (no ascetic Anglo-Saxon Wanderer am I). Everything I wrote about more than a year ago here still stands. My dearest mum has the flower rota going again. I feel resplendent sitting in luxury loungewear with a newly lit scented candle on the go. I predict my already deep vanity will increase in inverse proportion to the amount of hair I have: I may not believe in healing miracles, but I know the power of a good primer. I can still rock a directional wardrobe at home, on the way to school, or whilst walking the little black furball. Reading matter also remains welcome (box-sets sadly unnecessary for the couple who have seen it all). The knights have been ruined by Father Christmas, but as winter persists they – and we – will always be more than grateful for new plastic to add to the toy box (here is their frequently updated Amazon wish-list). Billy is currently dry for January but he is partial to a whiskey whilst I dry-heave next to him. I marvel at how nice stuff has the power to please. It shouldn’t be this way, right? I am an intelligent person who spends a not-inconsiderable amount of time pondering the meaning of life. And yet, nothing perks me up like a parcel. I muse that being frequently and luxuriously gifted (as I have been) is perhaps the silver lining to illness that dare not speak its name. My heart’s desire cannot be granted but that doesn’t mean I don’t desire stuff.
Third, life has to go on. We aren’t existing in a bubble of grief, because however bad things are, it’s not possible to live like that. We have our sad times and we cry about the future we won’t have together. And we have our joyful moments; when the dog eats a tube of wasabi or the boys play a game which doesn’t involve beating each other senseless. We have arguments about who takes the bins out, not just discussions about how I want our children raised. I don’t pretend we’ve found a new normal yet, but it’s coming, though I never could have imagined it would. In that vein, what we need are people who will go on living life with us. But we don’t need you to be different. We are still the same friends you have always had; and we love you for the people you have always been. Invite us for lunch. Take us on holiday. Go to the pub with Billy. Hang out with me and the boys after school. Come and stay with us. Tell us your happy news; up the duff? Hurrah. New job? Boom! You can even bollock on to me about your irritating jobs, children or husbands. I haven’t stopped being interested. I won’t stop rejoicing in your joys or commiserating when you develop a strange outcrop of old-woman chin hair. Just don’t put your special pity-hand on my sleeve or tilt your head à la Princess Di when we talk.
Alongside the fun stuff, there are practicalities foreseen and unforeseen for which we need your help. When I was first diagnosed, I didn’t want people I didn’t know to know I was ill. I feared being the sick, bald woman in the playground, the object of pity. Now I have no such false pride, and am beyond grateful to be living in a place where people stop and talk to me on our street, as well as part of a virtual community of dearest friends and family around the globe. Our needs will change (for sure, we’ll want food parcels at some point, but we’re ok now). So ask if you can help. And then ask again in 6 months. If you don’t hear from us, maybe just do it. The point is, the need isn’t static, and neither is what you are able to offer, because life will go on happening to you too. We know that sometimes it will be more, sometimes less; and sometimes we won’t need anything from you at all, just to be with one another quietly.
With any luck, this will be a long haul, and I shall be blathering on for years to come. So, some of you please save your cards, your emails, your visits and your presents. I know from experience that the hardest times are when the initial crisis has passed. When the rest of the world breathes again, and gets on with its own business – that is invariably when the night is darkest, and then we will need you more than ever. There will be more to say, in the fullness of time, about what you can do Afterwards*. For now, be reassured that my efforts to control this uncontrollable world will not end, and precise requirements will be provided (for I am nothing if not a Myers Briggs stereotype). But the point about it being a long haul is obviously even more true for Billy and the boys than it is for me now.
Finally, some thoughts on how to be with all this. I have been fruitlessly searching for an excellent article I saw last year in the Washington Post which provided the most brilliant description I have seen about how to help people through life’s inescapable, quotidian little tragedies. I have tried to recreate the picture which accompanied the article below.
As you try and decipher my writing, ask yourself honestly where you sit in my world. I think of it like a spiral. In the middle is me, the person with incurable cancer. In the next circle out is our little foursome of a family. Sort of in the same bracket, but sort of not, are the rest of the family – mine and Billy’s. Outside that, a handful of our dearest friends, god-parents to our children, best men and so on. Outside that – and this is a big, blurry, happy set of categories – others whom I love, but who are one degree removed: colleagues. Old friends from work, uni or school. Aunts and uncles. Outside that, people I know, but I’m not properly in touch with: former house-mates. Friend’s other halves. Billy’s colleagues. An old boss. Ex-boyfriends. School-gate mums. And so on, until you get to the world at large. Where you sit in these circles defines how you behave. Then, the rule is simple: you provide only support to those closer to the centre than you. And you expect support from those further out than you. So, to put it bluntly, you can only emotionally dump on people in circles further out than your own. I’m not averse to being wept on (it makes me feel special and a bit saintly) but in general, save your tears. Of course you are sad that I am dying, but most of the time I just don’t need to hear you snuffle snottily that you are so devastated that I am going to leave my children motherless. Hold it together, and weep on someone outside your circle. And think about what you can do – practically, emotionally or otherwise – to support someone closer to the epicentre. It doesn’t have to be me. It can be Billy, my Mum, my sister, my best friend. Anyway, this is a powerful and important rule and I suspect you will find applicable to almost any family crisis you find yourself involved in, whether you are rocked by the blast yourself or just dazed by distant aftershocks.
Right. That’s enough for now. I need to be off to re-angle my chair to catch the morning sun.
*I realise this era will need a name, like perhaps the Dark Ages. Anyway, we can come to that later.
I’ve been having these cataclysmic dreams about plane crashes. In one of them, Billy and I watch a plane fall out of the sky. In another, we are in the first class cabin watching through a glass cockpit as we plummet towards a brightly-lit cityscape, and I turn to Billy and say “don’t worry, the boys will be alright”.
My tumour markers started rising a month ago, and since then I’ve had scan after scan to work out what the Nuisance is up to. It now seems that my story isn’t going to have a happy ending. The cancer is back. It’s back like one of those horror movie villains you think you’ve killed, but who rises from the dead and scythes you down. Back in my colon, back in my liver, and now also in my bones. This, my friends, is it. The news you fear the most, the phone call you can’t bear to make, the words it hurts to write. For those of you not in the cancer-know (you lucky buggers), once it spreads to the bones it is pretty much incurable. You can live with it, sometimes for a long time, but once it’s got a hold on the bits of your body that make you tick, as mine has, we are talking a year or two if I’m lucky and months if I’m not. So, I return to my half-life in January. Back to chemo, and this time it’s the really baldifying one. So I expect I will die bald, which because I am nothing if not vain seems spectacularly cruel.
Despite my foreboding dreams, we weren’t expecting this. When we first got my blood results, knowing the Nuisance might be back was enough to send me to my knees and beg for this nightmare not to be starting again. But after a few days, I accommodated myself to the idea that for a time, and hopefully for a very long time, my cancer would be a chronic disease, and anyway might still be cured. I could bear periodic chemo, periodic operations, so long as they were just that: periods punctuating longer spells where the good life carried on. But then the news turned bad. And whilst I have felt since my diagnosis that I was on borrowed time, I am railing. Every fibre of my body shouts not yet, Not Yet. I find moments of peace, but there can be no accommodation with this reality.
But friends, don’t despair. I’m not going nuts, and neither is Billy. We are sad, heartbroken, desolate. For now, beyond words, though I expect to have more than enough to say come January.
And come what may, I know that there are people who love us near and far who will walk with us every step of the way.
But that is enough gloom. Right now, my Christmas tree is glinting at me and my family (briefly) resemble a John Lewis tableau. There is a muddy dog to stroke, his still-pungent farts threatening further turdy offerings under the tree. Soon, there will be festive arguments to adjudicate between the boys, and I will open my now traditional piece of unwanted electronic goods from Billy. We have our annual New Year’s holiday under huge East Anglian skies and I will let the freezing cold waves trickle over the tops of my wellies just because I can. All this goes to say that no life is pristine, and amidst the so-called perfect days there are always unexpected dog turds to be navigated, large and small. But in the same way, even the very worst days have moments of bliss if you can only appreciate them. Now there is a truth worth living by, for however long you have. Happy Christmas, everyone. And I mean it. Happy Christmas.
I always expected there to be another baby. From the moment the boys were born, in the back of my mind was the idea that someday they would have a sister. I attribute this expectation to a childhood fantasy, where I was actually the naughty little sister to two rambunctious, smart, cheeky older brothers. Twin brothers, as it happens. Leave aside the fact that the fantasy brothers’ names were Sebastian and Pierre (this being what the hunky male dancers in my ballet school stories were named). Leave aside the fact that Billy was never a huge proponent of the “more babies” approach to family life. Gloss over the lack of sufficient money, time or space for a large brood. Pretend that sod’s law wouldn’t have blessed me with twin boys again. There was a plan, and the plan was called Josie Boyle.
Josie would have been arriving into our world right about now. Right when the boys were settled at school, when Billy and I had got married, and when at least a few nights a week were unbroken by the wail of a little voice. Just before the Nuisance declared itself, my negotiations with Billy over Plan Josie had come to fruition. He was signed up. I had even begun to talk to Isaac and Oscar about the idea of a baby (Isaac was keen, Oscar thought she would cry all the time and break his toys. Wise little Oscar). And then Plan Josie, like all of my plans, was violently de-railed.
With the Nuisance came a surge of panicked guilt. How could I possibly have been so irresponsible as to have children? Suddenly the whole exercise of parenthood seemed fraught, and I couldn’t believe people did it so nonchalantly, every day, when they might just die at any moment. The idea of having more children whom I might leave motherless seemed feckless lunacy. Then my treatment started, and I discovered that chemotherapy would probably fry my reproductive system or push me into menopausal hot flushes before my time. The doctors said probably, not definitely. And they said I could freeze some eggs, but that would have slowed the whole chemo caboodle down. And anyway, even if I successfully knocked the Nuisance out of the park, I’d still have five long years before the all clear, by which time I’d be 40-odd. Goodness knows what would still be functioning down there by then. So, Plan Josie became Josie the baby ghost. A little girl who grows older only in a parallel world, the kind you find by accident at the back of a wardrobe, or through a crease in time. I think about her fondly, warmly, without tears. It is as if she is true and real, just somewhere else. She is little moon-faced Boyle child with brown hair and blue eyes, though obviously she would have inherited my love of stories. I see us in our other world visiting the Costume Museum in Bath together, exploring the collected novels of Jean Plaidy and comparing our most favourite historical heroines over a slice of Victoria sponge (mine: Elizabeth I. Hers: Hillary Clinton. Or more likely, Kate Middleton).
But though somewhere Josie and I are playing happily with my old Sindy house, when I return through the wormhole to this world I feel sad. Sad for all that should be but isn’t, and sadder still for the half-hope I still carry that someday she will exist, and for everything else that would mean for us.
I remind myself that I am one of the lucky ones, and that there will be people reading this who would kill for what I have. Half the fantasy: healthy and rambunctious twin boys who are the centre of my world (even if I might not be in their world for as long as I should be). There are people whose cancer treatment will mean that even if they survive, they will struggle to be able to have children – like this beautiful American blogger. There are people with diseases explained and unexplained who can’t conceive (on which, I can ardently recommend Hilary Mantel’s memoir and the stories she tells of her own lost little girl). There are people who can’t conceive, and those who conceive and miscarry, little balls of cells and hope dropping out of them over and over again. I don’t know how they have the strength to keep trying, to keep hoping that somehow the next time will be different. But they do, because sometimes all you can do is put one foot in front of the other and leave space in your life for the thing with feathers.
So whilst I mourn Josie and all she stands for, I remain grateful for what I have. Which brings me on to Baxter. Another element of the Life Plan was to grow old with a hound at my feet, some silky ears to stroke, a furry sibling for the children. Josie may be a dream, but I could still bring a little fur baby home. As I write he sleeps next to me, legs splayed and tummy bared, eyes twitching as he chases rabbits in some wild dream. He farts softly, yet pungently. Baxter is a vote for now. Never before have so many hopes and fears been vested in so runty a puppy! He is here because whilst the future is uncertain, the present has to be lived, and he makes our present better. I have been surprised by the strength of my feelings for him. I am passionately attached to his pathetic little form. I crumble inside when he cries at night, my maternal bones quiver with the ecstatic realisation that he NEEDS me. I stop myself from puppy-wearing (I’ve still got that sling somewhere, surely?) and I make sure Oscar and Isaac don’t feel overlooked by this new infatuation. I feel a new completeness at night when Billy, Baxter and I snuggle on the sofa for Homeland. But this happiness makes me uneasy. I feel sure I have tempted fate by selfishly bringing him into our world. What if I can’t be his human forever?
My words go up, my thoughts remain below. My best self tells me that all I have is now, and now is to be lived joyously. Compromising on life would be criminal. But my desire to carpe diem tussles endlessly with dark thoughts about the future, with a sadness that preoccupies me and takes so many forms, one of which is the absence of a small girl called Josie.
“We are half English and half Irish. This is my Irish half. Dad says it’s the fighting side” Oscar announced proudly to the family sitting behind us on our crowded Ryanair flight to Belfast last week. As the carrier of the boring old English bloodline, I often wonder what it means for my sons to be little Celts. Will they grow up feeling Irish? What does it mean to “feel” Irish anyway? When we drive down the Falls Road from Billy’s childhood home into town, we pass a mural depicting a spider’s web leading to the famous black door of 10 Downing Street: a warning to those who collude with the oppressor. Will Oscar and Isaac carry Yeats’ “fanatic heart” beating somewhere deep inside them, or will they bear their history as lightly as their father and his have? After all, perhaps it really no longer matters that their Irish Catholic father married a very establishment English girl. Perhaps they will simply be little Fenlanders, and by the time they want to call themselves anything they will be more interested in learning Mandarin than exploring their admixture of small island blood.
And still, and still. I find myself wanting my sons to know where they have come from, and wanting them to care. When I was first diagnosed I began a book for Oscar and Isaac, a collection of stories about the family who came before them. Picking it up again, it feels too maudlin to work on: there is something rather beyond-the-grave about my authorial voice. In rude health (for now at least), I don’t feel the need to write down the Really Important Things that I fear no-one else will tell my children. But there is something in the story of family which calls me back and back again. I wonder if what I am drawn back to is simply the notion that my children must be part of something bigger than themselves. In the limited experience of an English girl from a 2 by 2 nuclear family, being Irish is synonymous with being part of a big, noisy, multi-generational clan. I realise that my poor in-laws (and indeed the Irish nation) find themselves fetishized here. But what I have married into is a glorious novelty for me. Finally I can live out my Walton’s fantasies (“Good night Oscar! Good night Isaac! Good night John Boy!). As I return from our half term in County Down where the boys played with four aunts, three uncles, grandparents, cousins (of various removes), I wonder if perhaps this was why my parents supplemented our little family with dogs?
For the boys, being Irish means being part of a pack. It means having a gang of kids to chase around with. It means funny accents, being swung from the feet by Uncle Colin and fed contraband goodies by their smiley Aunties. It means Dad’s stories about how his best mate Paul Magee was stung by jeggy nettles climbing into The Base in the bottom of the garden, or how he and his feral little mates were caught in the crossfire of rubber bullets during one hot marching season. It means holidays spotting seals in Strangford Lough and swimming in the clear, arctic waters off the Antrim coast as we dodge the horizontal rain showers. It means a diet of exotic carbohydrates like soda bread and massive, hard white baps stuffed with Worcestershire sauce crisps. For me, the whole thing is a glimpse into a delightful foreign world, a world which makes me feel up-tight, straight-laced, and very, very English. In the presence of so much noise, I am often quiet in a way which is rare for me, content to sit on the sidelines and observe the everyday miracle of genetics as 20 round-faced Boyles gather in the same room (quietly observing is also easier than admitting I have no idea what they are on about, even after ten years).
So, perhaps identity is personal not political. Perhaps a half-English, half-Irish boy born in 2009 won’t want to learn Gaelic as a teenage protest; instead he will just be excited to hang out with his Muintir in Belfast on holiday. But even so, it matters to me that the boys don’t forget the recent history they are so lucky to have missed. If Billy had been born in 1958 or 1968 instead of 1978 (basically, if he’d been of the same generation as either of his elder brothers), then his Belfast would have been a very different, much more terrifying place. One of his elder sisters remembers a weekend trip to the library with her dad being punctuated by British soldiers storming the building and shooting. And Billy’s Dad had to leave a decent job because his commute to work was too dangerous, too many road blocks which increasingly had a tricolour or a union jack raised above them for it to be worthwhile, even though work was hard to come by and he had 6 children to think of. Even a bright, independent spark like Billy would have found it hard to make it to an English university (let alone Cambridge) over Queens. He wouldn’t have met a civil servant who walked in through the famous black door every day. And if he had met her, would the love story have been less Richard Curtis and more Romeo and Juliet? But the fact that Billy’s life has panned out the way it has is, I guess, something to be celebrated at an existential level. That things can change so much in a generation should be a source of hope even when we look at Syria or Northern Nigeria or Somalia and think that war between countrymen is intractable and hopeless.
Anyway. Enough pontificating: our new puppy is nipping at my ankle and preparing to poo on the rug. I conclude that we are who we are, because of ourselves and because of those who have come before us, “a horde of ghosts – like a Chinese nest of boxes – oaks that were acorns that were oaks”. And I conclude that what matters more than the politics is that the boys feel as grateful as I do to be part of our wonderful Boyle Muintir.
|A year ago today I was told I had cancer. By the end of that same day, October 12th 2012, I was in emergency surgery, my tummy cut open on the horizontal to carve out a big ol’ tumour which had burst out of my colon and begun its wicked migration around my body.It won’t surprise you that I have found myself approaching the 12th October 2013 with trepidation. Is it an anniversary to mourn or to celebrate? I still don’t know.
Some months ago, someone who never fails to make me think differently about things asked me what was the best thing about having cancer. When she said this, I collapsed a bit inside. It seemed so thoughtless. Cancer doesn’t give “best things”, or indeed much that is in any way welcome. Instead, it is easy for me to rattle off a list of what it has taken from me. First, the golden-girl future I always assumed I’d have. Never having quite reconciled myself to the fact that I wouldn’t actually be Prime Minister or UN Secretary General, suddenly an ever more exciting future making the world a better place disappeared. So too did my more immediate (and realistic) plans to take the family to live in California so that the boys could really bulk–up on Sunny D and Pop Tarts (and Billy and I could take Silicon Valley by storm – a poor man’s Sheryl and Dave, if you will). It wasn’t that I assumed I would die, or couldn’t imagine working again. It was just that I couldn’t imagine working the way I had done before. The place I’d assumed I’d get to required – at least for the perfectionist – 24/7 diligence, sacrifice of self (which is not the same as self-sacrifice) and a brutal commitment to my blackberry. The Nuisance took away the easy bickering of a relationship which had weathered a decade and two kids. At our age Billy and I should have been fighting over who took the bins out, not having heart to hearts over the kitchen table. The Nuisance took away the mother I had become, and who the boys were attached to, even if I wasn’t always impressed by her style. Flustered, grumpy, energetic, imaginative, shouty, careless, fun. Instead I became careful, soft, absent, lethargic and exerted no discipline whatsoever over Oscar and Isaac for weeks at a time. Who would, in my position? I only want them to remember Good Cop. The Nuisance stole the fictitious little Josie Boyle from our family and replaced her (in my mind, not literally) with a puppy, which has the advantage of not having to come from my largely defunct reproductive system. The Nuisance took the reciprocity from my relationships. By now I should be out of the phase where my parents prop me up and I, finally, should be doing some of the propping. But I’m not. The Gross-Boyles should be off round the country imposing ourselves on friends, and I should be offering the Oiseaux a shoulder to cry on and a helping hand when the baby is sick. But instead I have been the visited one, the crying one, the receiver of gifts for far too long.
This is a long list, and yet these are only the day-to-day things the Nuisance took from me. Ever selfish, these little losses are what grate most. Besides, whatever happens, the bigger loss which loomed (looms?) over our family is something I will never have to actually see. Lucky me.
But despite all this gloom, the truth is there is a best thing about having – or having had – cancer. What it has stolen is the normality I took for granted. But I have taken from it, too. For starters, there is a feeling of being alive, awake, which reasserts itself so strongly after illness that you can’t help but feel joy. Rather like your first time on ecstasy but with less pounding music and vomiting. Every time I ‘woke up’, whether from my fortnightly chemo or after my operations I experienced joy – perhaps even the sublime – in a way I haven’t quite before. The first time this happened was in the incongruous setting of Ward L4, on the 13th October 2012. I opened a window in the middle of the night and leant out to feel the cold autumn rain on my face, mingling with sharp, blissed-out tears. Then there is the way I feel about the people in my life. Billy and I have grown a love known only in power ballads, a depth of understanding and companionship which in any fair world would last us both a lifetime. My parents, always such dear friends to me, now closer physically as well as emotionally since their relocation to the flatlands. And friendships which survived on the leftover bits of time after real life was done have had a renaissance. Perhaps I imagine it, but the ties between my loved ones also seem closer. Naturally, Oscar and Isaac and their beloved Bon-Ma and Bon-Pa (for Oscar, AKA “the spares”). But do I also detect old friendships being picked up, more effort being made, more diems being carped within my dear urban family? I hope so. And whilst the world may have lost a future stateswomen, I have, at least, found my voice. And with my voice, an intellectual and spiritual hinterland which had been too long lost between the answering of emails and the wiping of tiny bottoms. I am woman, hear me roar.
I am not sure whether what is lost is greater than what has been found. Perhaps I should simply celebrate the fact that I can ask that question at all. Certainly, as I edge my way back into the world of work, I have felt a deep sadness at this seeming resumption of my old life. It makes me wonder whether, just perhaps, I might have got more out of the Nuisance than it has got from me?
Who am I kidding. I would still swap all this strange wonder the Nuisance has given me to exist in a world where I could be careless with life again. Of course I would.
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (Susan Sontag, Illness as a Metaphor)
As quickly as it all began my cancer treatment is, for the moment, over. 11 months, 2 operations and 12 cycles of cytotoxins, countless blood tests, 42 mornings injecting myself to boost my white blood counts, more than a month in hospital, all book-ended last week with a scan showing no sign of the Nuisance. So I move into a new category, from metastatic cancer patient to a NED: no evidence of disease.
When I was diagnosed last October, a (foolish) google search showed I had an 8% chance of surviving for 5 years. Now, I have a 50% chance of not just surviving till my kids are 9, but surviving without cancer. Well. Not in as the kingdom of the sick.
Writing these words feels amazing. I’ve woken up for the past few mornings with a smile, a warm glow as I feel my body gain strength as the toxins disappear. I even had some booze at the weekend, a sure sign I’m on the up.
Writing these words also feels like tempting fate. I’m being scanned every 3 months for the next few years, and the coin toss could come down against me at any time. The Nuisance could still be lurking inside, waiting to regroup, to adapt its tactics to confound the foxes. It’s a clever old bugger (so clever and old it even has a biography now – which, incidentally, is an incredible book). And as I presaged in my last post, living in this no man’s land is my new normal, and it’s going to take some getting used to. But damn, it feels good to have 3 whole months ahead of me using my good passport.
I’ve got a lot more to say, and a lot, lot more to write. So expect to hear from me. Other than that, I will be picking the boys up from their new school. I will be buying directional, autumnal clothes and wearing high heels. There will be dieting, and also fine dining. I shall do some work for AGI. Billy will mostly be eating my cooking, taking me to the cinema, and working very hard so we can afford lots of mini-breaks (he will also be running – you can sponsor him here for the Great Eastern Run in a few weeks time).
For once, I don’t mind autumn coming. We’ve got a lot of fun to have.
Cancer. We have to fight it. Destroy it. It has waged war on us and we have to respond by throwing everything we have at it. It's a battle of hearts and minds (so stay positive, folks!)
That this, the most commonplace cancer lexicon is bollocks, is well documented by me and many wiser cancer commentators. First and foremost, if it’s a battle and I lose, what does that say about me? I didn’t fight hard enough? What an insult. If it really was a battle, if it really was in my control then I would arm-up to the nines. I’d weaponize. I’d transform myself into a bad-ass cancer hunter and this skirmish would already be done and dusted, thanks. I am a formidable opponent and I don’t see a bunch of rogue cells having much of a chance against my super-powers, let alone the prayers of half of West Belfast. But the Nuisance is a disease and it will be controlled and vanquished by modern medicine, not by the love of my family, my will-power, God, or a fruitarian diet.
But I want to reclaim the battle metaphor. I’m nearly a year into my acquaintance with the Nuisance, and my war is not with the disease. It’s with the treatment, and it is with myself, for mastery over this strange new terrain which has become my life. Yes, obviously Cancer the disease sucks. It kills you, right? But the truth is most cancers don’t start doing the really bad, painful stuff till near the end (stealthy bugger that it is). In the meantime, treatments for cancer are generally worse than the disease itself. An unalloyed misery, torture in so many different ways (and I know I’m one of the lucky ones, so forgive my self-indulgence here). And the thing about the treatment? It’s elective. You CHOOSE to put yourself through it, to be opened up by a surgeon, to get hooked up to chemo, to be zapped by radiowaves, or to suffer the sleeplessness and hot flushes which seem to be de rigeur with drugs like Tamoxifen. Discomfort, misery and depression today equals life down the line, whether it’s a complete cure or a few more years or months with your beloveds. So it’s a price worth paying. But unless you’ve been through it personally, it’s hard to understand the many variegations of crap which cancer treatment offer. And they need chronicling, because it’s only by naming our foes that we battlers understand what a miracle it is that we are still standing in this war at all.
At the beginning, a diagnosis is received, statistics and prognosis for survival follow. The battle begins with the declaration of war, not cancer versus us, but for the patient who must decide whether to tool up for the fight. The first choices are made. Nerves are steeled; but at this stage it’s a journey into the unknown so the choice is a no brainer.
Treatment begins. Radiotherapy is not part of my personal battle plan. Neither is a transplant, nor hormone replacement drugs. I’m told all these offer their own, particular miseries. But I can tell you about chemotherapy. First, there are lots of different sorts of chemo. With some you just take tablets. With others (like mine) you get hooked up to a slow drip-drip of a pump you carry around for 48 hours. Some make you bald, others don’t. But whatever the Docs say, there isn’t a “good” chemo. There are just degrees of bleurgh. Chemotherapy is like a particularly inept vigilante marauding through the body on the hunt for cancer cells. He shoots, he kills! Oh no. More often than not what he has slaughtered is a perfectly healthy cell just going about its taste-creating, nausea-controlling, body-hydrating business. Chemo is all about this clumsy collateral damage and how to control it: hence the phalanx of steroids, anti-nausea pills and so on, each of which bring their own fun side-effects. But what I hadn’t reckoned with was the mental stuff. My foxy vigilante seems particularly adept at shooting down serotonin, so that 4 days in, chemotherapy replaces my soul with a shrivelled, black void sucking all the goodness from life. And my little grey cells seem to be equally often mistaken for carcinoma. So I am sucked into the foxy void with only This Morning for company: hardly a fair fight. If I could at least read! Half way through the fortnight, I emerge from this misery like clockwork. But with each cycle the physical and emotional scar tissue deepens. I elect to return, but only just.
Surgery at least provides variation. A chemo holiday! Hurrah! And unlike chemo, all surgeries are by no means equal. For me, bowel surgery was pretty much a breeze. Liver surgery seemed to bring a tedious new complication every week and it is only now, 5 months later, that I can say I feel recovered. But what all surgery has in common is pain. They cut you open, and it’s not surprising it hurts. But with the passage of time what I dread most isn’t that, it’s the shit they use to make the pain go away. The time spent submerged in dark, dark morphine hallucinations (mine featured Las Vegas show-girls and scenes of the Rwandan genocide. An unholy combination I could do without re-visiting). And pain educates the body to pain. It gives a taste of what may be to come if the battle has to continue.
The brain travels this path along with the body. The war is emotional as well as physical, as the self makes sense of each foray into the unknown. As we work out how much of this fearful battleground we can cope with. As we establish how on earth to live with a question mark hanging over the future. Not just whether we have one – most of the time the idea of not having a long-term is too big to grasp. But the uncertainty of next week, tomorrow, this afternoon – will I be up to spending the whole day with the kids? Can I cook dinner tonight? Should I get excited about forthcoming mini-break – or will that just make disappointment more crushing if I can’t go? The Nuisance demands a mastery of self which still floors me. Half of life is sunlight uplands, quotidian normality. And then suddenly the fear comes, my stealthy assailant. And I’m trapped by anxiety about what next. The battleground here is familiar to me, pre-nuisance, and I know to many others. But now it goes on, and on, and I have a feeling that the end of treatment will not bring a ceasefire. Instead a tedious stalemate, a tense no-mans-land to inhabit between my check-ups and scans.
The point of all this is not to moan (though there has been a fair bit of that, I grant you). Or to give myself a massive pat on the back for still being here (*gives self massive pat on the back anyway*).The point is to say that whilst I can’t determine my future, or what the nuisance decides to do next, I can determine how I face it. It’s a choice, and I choose to keep showing up for the fight, armoured up and shield ready.
Instead of going back to the city where I grew up, I go to Touris. My folks bought the place about 15 years ago. Back then, it was just a ramshackle barn set in a field half up the Midi-Pyrenean Causses, just outside a little town called St Antonin de Noble Val, overlooked only by a pair of buzzards and encircled by the white cliffs of the Aveyron gorge. By 2005 there was finally enough roof and solid floor to stay on, and Mum and Dad set me to work on flat pack and wall painting. Seeing what they had done with the place, I just about forgave them for selling the ancestral home in Bath. Billy and I have been to Touris every summer since then, with an assorted cast of friends, family and children. I had my 30th birthday there – heady, childless days of canoeing and Rosé by the pool. Mum celebrated her 60th sitting under the plum tree, and this year the folks rang in their 40th wedding anniversary there. Isaac took his first steps under the shade of the vines my Dad planted, and both boys discovered the delights of cold swimming pools on to hot, hot days. It is a house of forever memories for us. I didn’t think I would make it there this summer. I had written it August off as a chemo wasteland, my plans for a grand tour of Europe before the boys started school stymied by my platelets (who knew a platelet could stymie anything?)
But somehow we managed to escape the land of the ill and rescue summer for two whole weeks. I surrendered to the powers of my little white cells (like a maverick Hercule Poirot). They ruled, not me, but instead of sinking deeper into misery when they kept failing me and putting chemo back and back, we sped off on our Ryanair chariot to France. And so we had a late summer glut of long, hot, glorious days in the only place where the Nuisance doesn’t exist. We made dens and dams. We ate cheese and ice cream every day (I couldn’t look look less like a frail cancer patient if I tried. Quite, ahem, robust in my bathers). I swam for the first time in nearly a year and luxuriated in the sensation of cold water over my head and my limbs moving as a wanted them to. My strong legs took me to walk in high places and I saw more VIEW than I have for months (sorry Cambridgeshire, but your landscape just stultifies). Billy and I spent a night in an old hunting lodge with an enormous bed and white linen sheets. We climbed castle walls and repelled intruders. We even had a friendly house snake, whom Oscar named Oliver Cromwell (what a good Irish boy). I wasn’t someone with cancer. I was someone on holiday, getting a tan, rocking a coral pedicure. And it felt great.
I write for the people I love, and I write for me. I think of each blog as a small package of words, knitted together in the windows when I feel well. For others, a little gift in place of being the mother, partner, daughter, friend, sister, worker-bee, the person that I want to be, but can’t, right now. And this blog I dedicate to the lady-friends who have been the wind beneath my wings (hah!) for so long, and especially now.
Beaches is not my favourite film. The relationship between Bette Midler and the other one (let’s just call her wind¸ since she’s a largely forgettable plot device to showcase Bette’s glory) is such a depressing depiction of female friendship. All that attention-seeking, selfishness and martyrdom. Ick. You find a lot of that in contemporary novels, too. Poisonous relationships dressed up as friendship. Women being jealous, vindictive, man-stealing, nasty bullies to one another. Margaret Atwood must have had some real mean girls at her school to have inspired Cat’s Eye or The Robber Bride. In real life, though, I’ve found things are better than that, at least now I’m not 13. Back then, girl-girl friendships were indeed pretty gruesome things. I am still pained by the wound inflicted when Rosie went off with someone else. How cruelly I was cast aside on the long walk to school! I trailed behind them both for weeks like a sad Labrador. Mum used to say that we were ‘practising’ having adult relationships with one another, getting ready for love and all that (this observation, like most of her wisdom, was not welcomed by the mini-teen. I was the tragic heroine of my novella and my sorrows must not be belittled by her Psychologist’s explanations).
Exit the years of torment, and things improve. Friendships become less intense. I am nice to my friends, and they are nice to me. We grow up together, travel the world, experiment with ‘bold’ hairstyles, hold down crappy temping jobs, sleep with inappropriate men. Perhaps we are also better matched. At university I meet women I really get. Girls who had posters of William Shakespeare on their bedroom walls back home. Girls who know who Kant is, even if they pronounce his name cunt (the dangers of the autodidact). Girls who want something from the world and are unabashed in their efforts to get it. Then when I start work, there is a shortage of women who I want to be like when I grow up. The top of the civil service seems full of old men with dandruff, and politics only slightly better. But there are lots of women I want to be friends with. Whip smart, well dressed, brilliant women who I look at and think if this is the future, then we’re in good hands. Perhaps I’ve been just been lucky, but resplendent, remarkable women have kept on coming my way since then; thrown into my path as they shack up with my friends, or Billy’s; at work, whether in Africa, America or here; and at home.
Whilst other relationships might define us more – with our parents, partners, or children – for me female friendship has been the steady tick-tock of adult life, the oil in the engine, the ink in the pen, the wind in my sails: all those clichés and more. I’ve got men friends (well, a few), but my oiseaux are different, and, I’m afraid, just better overall. I find it hard to articulate why without sounding like I’ve drunk a bucket of warm white wine after work and am talking to my ver’bes’friend while she holds back my sick-covered hair. And that is precisely the kind of friendship I am not talking about. But I think conversation is at the heart of it, clichéd though it is. Women talking too much. Women talking about nothing. With my oiseaux, it is true that there is a lot of verbiage whether we are à deux or in a flock. And it is true that there are some themes which are rather ubiquitous, like a song we keep playing new versions of over the years. Our bodies, whether our thighs look like Newmarket sausages in leather(ette) leggings, how many percy pig sweeties have been consumed in the past 24 hour period, whether anyone can see the new-found hairs under our chinny-chin-chins. We peer into other people’s lives, and yes, we can still be mean girls when we do this. We talk about MEN, of course. Back in the day, is he into me? (Usually with an inverse relationship between how into you he was and how much you talked about him). Now, more mundane. How can I teach him to see dirt? Are farts MEANT to smell that bad? Whither the romantic mini-break of old? I find parents, and especially mothers, get a decent crack of the lady-chat whip. But I guess that is one big relationship to navigate. Children get a look in, too, but not till they are wanted or have arrived. To the outsider listening in, our world could appear limited, narrow, superficial. But listen more carefully. These discussions are just the bacon fat in the stew. They bring things together, keep the friendship well-lubricated, make everyday fodder tasty. But without the rest of the conversation that this intimacy permits – the big conversations about how to live – female friendship would be no more than dreadful pass-the-time chats had at the back of toddler groups.
Until recently, my fear had been that the really good times were over for these friendships. Thirtysomethings with children, jobs, and partners to attend to, we are no longer as available to one another as we used to be. While I wish we all lived in some kind of giant child-rearing commune, that isn’t the case. Friendships survive on scraps of time and emails, squeezed between the rest of life, and very often thousands of miles apart. We live off well-trodden stories, the space in our lives for making new memories mostly taken up by family and work, where the real drama happens. The odd dinner, more often a cup of tea wedged precariously over a babies’ head whilst we converse, but never, never enough time for the real stuff, or for new adventures together. I always hoped there would be time for that again, if only in the Home for Neglected Mothers of Sons where we would all end up in our dotage. But the Nuisance gives as well as takes – or perhaps it is more accurate to say that we take from it what we can, a collective FU to its insidious presence. Now I see more of my resplendent oiseaux around the world than I have for years. We have conversations which play in my mind for days afterwards. Interesting, funny, profound discussions about how to live, perhaps the sort only prompted by not knowing if you will. We make new memories; now in my back garden, but soon, we plan tentatively, AWAY in foreign places. I lean on them when I feel lonely and anxious about the future, and promise to do the same for them when they need it (because as one of them always says, paraphrasing Mike Tyson, “everyone has a plan until they get punched in the face”). This might not be how I planned my friendships to go, but it’s not so bad. So I’ll end with Yeats – though he probably wasn’t talking about the sisterhood, he’s dead right: “think where man’s glory most begins and ends, and say my glory was I had such friends”.
There is a particular smell to the rooms of English Dons. Rooms lined with books and obscure feminist curios, hard chairs for uncomfortable undergraduates and something softer for them. A musty, pompous smell of old coffee and obscure tracts. We were obviously going to snicker when, gathered in one such room, our tutor told us to invest in books whilst we were at University, because we were building our own “libraries for life”. Wot? Spend my student loan on books? When would I ever want to read the Faerie Queene again, seeing as I didn’t quite finish it first time round? But, like gardening and the National Trust, the rightness of what he said has come upon me with my advancing years. And now we live in a house of books. Even Billy’s efforts to exist only in the Cloud don’t extend this far. Our home is like the inside of my head. Full of words which have walked alongside me, lit my way and reminded me that my own life treads over experiences others have shared before me right back to the beginning of the beginning.
If there is a theme to my writing this blog, other than the obvious one, it is sharing some of these words. And if there is a theme to what those near and far have done for me since the Nuisance arrived, it is helping to fill up my life-library, giving me so many more.
Because you know me, you have sent me books. Neatly piled against the wall in my attic, waiting patiently to be read, because there is a bit of a queue for my attentions. Now, I love this. But there is a cautionary tale. There is someone dear to me (he shall remain nameless), who sent me three books back in the darkening days of November. When I thanked him, I asked him to explain to me why he had sent me those particular books. What was it about them that spoke to him? Why did he think I would like them? What would they bring me? The nameless one, being not as good at emails as picking books, didn’t reply. So those books sat at the bottom of the pile, unloved over the winter. It was only when another friend recommended Raymond Carver’s poetry that I realised Book One was his short stories. And someone else gave me Sloane Crosley and told me if I liked her, I should really read David Sedaris. Which was Book Two in original parcel. And book three? Oh, just Billy Collins a pithy American poet I hadn’t come across. So when I last saw my nameless friend, I explained this to him. And to you now. The best books you have sent aren’t just paper, but have come with pieces of you. A note which tells me this was your favourite book as a child because it scared you senseless. Or perhaps I might need some comforting, gentle reading and here is the Darling Buds of May, a book to turn to when you want happiness on a page. Or, now you have time on your hands, perhaps read this short biography of Deng Xiaoping because it will teach you all you need to know about the modern world. So each book has been a double treat. First, reading the thing itself. And second, thinking as I read it about the person who sent it and what it meant to them. Sometimes this has been a puzzle and I’ve wondered whether I knew the sender (or they me) at all. It’s very personal. There is something in offering a beloved book which is like offering a bit of your soul up for scrutiny. The really good stuff touches on some big themes about life and what it’s all about, and in the books you’ve been drawn to and sent me, I’ve sometimes seen glimpses of lives which perhaps aren’t as Facebook-perfect as they might outwardly appear. Which suits me just fine, because mine sure isn’t.
If there is a justification for the extravagance that is a three-year English degree, this is it. Good writing is “the human voice/And do we not find each other interesting?” . Reading is an experience by which we can connect ourselves to what we are, to a great web of life, the same grooves being scored over and over again across the world in different times and tongues. John Berger: “The poet places language beyond the reach of time; or, more accurately, the poet approaches language as if it were an assembly point, where time has no finality, where time itself is encompassed and constrained”. Life, death, love, loss, war, “god in the details”, men are like buses, they fuck us up our mum and dad, and so on. It’s all there.
We look for different things at different times. I have already written about the books I loved as a child. But there is nothing like the tormented adolescent discovering Shakespeare (though some people higher on the cool-o-meter than I say that music was big here, too). “Tomorrow, and tomorrow, and tomorrow/Creeps in this petty pace from day to day/To the last syllable of recorded time”. What does it mean? Who knows, but oh, when you are fifteen with glasses, lankly hennaed hair, a bit of puppy fat and far too much unrequited love, it suddenly means so much because LIFE IS SO HARD. Perhaps you are Prince Hamlet (or were meant to be? Your diaries suggest this may be the case). And the writings of African-American feminists raised on slavery, share-cropping and segregation somehow speak to the oppression of A-levels and middle-class life deep in west-country England like nothing else. And then university, work, proper relationships, and John Donne. Motherhood: more Sylvia Plath and Rachel Cusk (and some less mopey stuff too). I could go on. There has scarcely been a period of my life which hasn’t been accompanied by reading something which helped me make sense of it.
It is hardly surprising that since the Nuisance I’ve been reading what I can about the experience of illness. But here’s the thing. There ain’t much there. More accurately, there is less there than you would imagine given that it is a pretty universal experience. Unsurprisingly I’m not the first to spot this, and in fact Virginia Woolf wrote a whole essay about it:
Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go out, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals… it becomes strange indeed that illness has not taken its place with love and battle and jealousy as one of the prime themes of literature.
My theory is that either people are too sick to write and die, or they survive but it is so grim and boring that they can’t bear to write about it, (and no-one wants to read it, anyway. There’s not a lot of sales in sickness). Like childbirth, when over it is erased swiftly from memory: as Emily Dickinson said, “there is a pain so utter/it swallows substance up/then covers the abyss with trance/so memory can step/ around – across – upon it”. There are exceptions. First, what I think of as The Cancer Canon. I’ve rather gorily devoured these autobiographies, usually written by journalists or public figures, looking for some clue in their journeys as to how to conduct my own, or perhaps how mine will end. This is not an uplifting process. Their stories haven’t finished so well. But still, Ruth Picardie, John Diamond and Philip Gould stand out. Brave, interesting, funny and very, very sad memoirs which are written with a light touch, though the endings and after-words are torment. Then, the rest. This is a mixed bag. There is a decent anthology of writing about illness called The Soul of Medicine, though it has a bit too much about shamanic healing in it for my liking. I quite like Julia Darling’s collection Sudden Collapses in Public Places, and her poem about chemo is good. Hilary Mantel’s autobiography is incredible, writing about illness and how it shapes the self both inside and out (and it’s way shorter than her historical tomes). But really, Raymond Carver is the guy I’ve come to love. So here is What the Doctor Said. If you click on one link in this grossly hyper-linked blog, make it this one, because I love it so.
I’m a little way into this reading project, and I suspect I’ve only skimmed the surface. What I wanted, in writing this, was to ask for your help. Out there are people better read and better informed than me. So, send me your additions to the “N” for Nuisance section of my life-library. Not actual books, just “have you read?” messages. And feel free to keep sending me other things you’ve liked reading, I always love it. Thank you.