My Best Women and I stand on a wet bridge in Paris, under the shadow of a damply dripping Notre Dame, late last Saturday night. We have 18 years of friendship behind us, topped off by 36 glorious hours in mesmerising Paris. 18 years and 36 hours of ballast against those insistent hoof beats of time.
The bridge we stand on is glittering with padlocks. Each lock is inscribed with a set of lovers’ initials; locked on to the side of the bridge, keys thrown deep into the Seine below. It is the most romantic and beautiful thing I have seen in a long time; thousands of people trying to lock love into the here and now with hope and metal hardware. I know that these love-locks are causing the eminence grises of Parisian local government trouble as they threaten to collapse ancient bridges (though I don’t think we ladies helped with our combined weight after a nose-to-tail eating experience on the Left Bank). But I also know how the lovers feel. Had it not been the dead of night, and raining heavily, I too would have searched out the overpriced lock-vendor and bought hundreds of the bloody things. A lock for Billy and our 2×2 nuclear family. A lock for my parents, my sister and I, the Gross family. A lock for the Best Women, my coven. A lock for the Irish Muntir. Luckily for the Pont des Arts, the lock vendors were avoiding the deluge at home. Besides, I don’t need to shore up my many loves with a padlock; they know, and I know, that we are beyond that.
Anyway. I owe you an update on the Nuisance and its’ attendant winged chariot. I have had all my most recent scan results. Mixed news; the bloody Nuisance is growing in my bones (pelvis), but just about holding stable in its other resting places (colon, liver). It’s not spread anywhere else yet. So despite my ever rising tumour markers, Uber-Doc at the Marsden thinks there is a little bit more juice left in this chemo before the cancer becomes completely resistant to it. Which is good because it’s (a) tolerable (though my fat face, thin hair and weight gain say otherwise). With this chemo, I can usually read a bed-time story 12 out of 14 nights), and (b) this chemo is the last approved line of defence against the Nuisance. When it’s done, the next and final stop is Phase 1 clinical trials, which may well prove as useful in Nuisance halting as a bunch of the Prince of Wales’ homeopathic remedies. There will be no guarantees, and far too much uncertainty for my ordered little brain in this period to come.
The thing I am struggling with, still, is time. There probably isn’t much more than a few months left in the chemo. The winged chariot is speeding up, and I won’t now have the blissful treatment-free interlude I’d hoped for in the Autumn. Chemo, for as long as we can spin it out, then lab-rat territory.
With this worse-than-I’d-longed-for, better-than-I’d-feared set of results comes a new set of plans for the next few months. I am used, now, to my plans getting knocked off course. But really, this summer the only important thing is the Knights; and Billy and I making the most of their first long summer holiday. It may be our last together. We have some great plans (and I have a book to finish). So, dear ones, you may find the inner circle closing in on itself for the next wee while. That doesn’t, of course, mean we don’t love and welcome your support (and especially your news, letters, emails and the glorious packages). But my energies will be focused on the inner circle.
So, until I see you next: remember that love locks us all together. No need for a trip to B&Q for a padlock to weigh down the Bridge of Sighs, Westminster Bridge, or the Bristol Suspension Bridge. Just tell those to whom you are locked that you carry their hearts, and they carry yours, forever.
There was a point just before Christmas when I wasn’t sure I would get to see the Magnolias come out this year. They came early, and I caressed their waxy petals like talismans. Since then, everything has gone too fast. The garden is overflowing, rain, sunshine and a mild winter has brought everything out in hyper-speed. The tulips were red and luxuriant, destroyed too quickly by exuberant games of football. The clematis, always a reminder of the mid-May birth of the Knights, came and went in a week. Now the tall, purple alliums are over, and the peonies are fatly spilling over the bright green astroturf. I want to press pause on the garden, the spring, the summer and everything that comes with it. Not just because I am scared I might not see it again (though that I am), but because I want to bathe in its beauty, revel in how good it feels to be part of it.
This point; between Easter and Midsummers’ day – is my favourite time of the whole year. And this year, it has tasted especially sweet.
I walked through Legoland on the Knight’s birthday, soaked to the skin from freezing rain and a drenching from Pirate Falls. I was holding my lovely niece’s hand as we ran damply to the Star Wars exhibit, the rest of family ahead and behind. Happiness ran through me like electricity. Here I was, holding the hand of a dear blonde girl who can’t get enough of talking to (at) me, surrounded by family I love, in a place which makes us all oddly happy. I was there to watch my boys turn five, and not just there, palely suffering, but really THERE.
In Dorset I swam in the sea with my Best Woman and her mother. It was early evening, bright sunshine and cold, cold sea. We walked back across the sand to see Ian, Billy and four delighted boys nestling in the sand dunes, their faces smeared with ketchup and the chocolatey-marshmallow of Tunnock’s Tea Cakes. Earlier that day, alongside my parents and our exuberant puppy-dogs, I walked more miles than I have since conquering the Mourne Mountains last Autumn.
I have rocked my work wardrobe and once again been to meetings in the shadow of Westminster Abbey. Who would have thought I would miss the cut and thrust around a plastic table so much? I won’t ever be Executive Gross again but my brain still seems agile and seeks action.
I have found a lovely home for my book. It looks like it will actually be published next year (with or without the author hawking it around Waterstones like she’s JK Rowling). Writing is my therapy, my solace and my indulgence, fuelled by secret stashes of Macaroons and Crunchie bars. How could I not love spending an afternoon high on sugar writing to my boys and all of you?
Last weekend, Billy, the Knights and I went Glamping. My first tent experience in 15 years. Oscar was concerned about this decision: Why can’t we stay at home? What if there are spiders? Well, there were spiders. And a certain dampness to the tent walls. And a dawn chorus of birds and sheep at 3am. But how good it was for us all to live outside for 48 hours; how good it was for me to watch the Knights make friends with a trio of big girls, to attempt to fly our kite in the huge East Anglian skies, to bury one another in the sands of Wells’ beach, to eat honeycomb ice cream.
This is all to say, life is good. More than good, it is blissful. But I know this interregnum won’t last. My tumour markers have started to bob up and down again, I fear mainly up. This is probably a sign that the merciless Nuisance is becoming resistant to the chemotherapy. Funnily enough, I have been expecting this for the last month. I’ve felt the winged chariot at my back. There have been too many single magpies at the side of the road to salute. I feel my luck running out.
So the next stage in this journey begins. More scans next week. Then some doctor time. I don’t know what will happen. Maybe a return to my old friends, the Foxes, to see if they still have any Nuisance-crushing powers left. Maybe straight into the uncertain territory of clinical trials. I don’t know what I dread more; horrible foxy toxins or the journey into the unknown of experimental treatments, where the silver bullet seems just around the corner for every other cancer than mine.
So, my sojourn in technicolour Oz is over, and the precipice looms again. I know this path. There are no sign posts to direct us, nothing that can stop me hurtling downward if that is what the Nuisance decides. But like Will and Lyra’s journey to the underworld in The Amber Spyglass, I don’t travel alone. Billy and I walk hand in hand, and we are surrounded by love and loved ones who keep us striding purposefully along. Despite the Magpies, I won’t stop making life happen all around us. There will be a party to celebrate my 36th Birthday. There will be HOLIDAYS with sun to sit in and blue swimming pools to swim in. The Oiseaux and I are planning a Parisian jaunt. I’ve just been given some GORGEOUS gold Jimmy Choo shoes. There is always something to rejoice in. So though I think it’s probably a touch inappropriate for a family blog, I shall end with Andrew Marvell’s risqué rebuke to time:
Let us roll all our strength and all
Our sweetness up into one ball,
And tear our pleasures with rough strife
Thorough the iron gates of life:
Thus, though we cannot make our sun
Stand still, yet we will make him run.
Last week, my Best Woman had the pleasure of sitting with me during chemo and watching as my face turned from pink to green to grey, and the retching started. Still more heroically, she then shepherded me back to Cambridge by train so that Billy could get some work done. I trust the Best Woman with anything and everything in my life. But still, in my post-chemo bleurgh I longed for Billy, even for a two hour journey.
It made me reflect on our partnership, and though Billy will hate this, to want to write about it. When we met we were feckless 24 year olds. Walking back from dinner last weekend I briefly saw our younger selves careering down the street to a party, laughing, carrier bags of booze in hand. I wondered with a mixture of nostalgia and sadness where those days went. For me at least, the desire to party all night dissipated somewhere along with the nappies and the jobs and the move to cosy, quiet Cambridge. In the place of weekend walks on the South Bank and nights out at strange bars and wild house parties held (incongruously) in Golders Green, we began to juggle babies, went on sleepless holidays with other families and spent a lot of time in cold playgrounds. We’ve had 10 years together now, split between happy irresponsibility and even happier responsibility. The truth is I don’t miss the early days of courtship. We were still feeling one another out, working out how much of ourselves to reveal, to pour into this partnership. They were heady, exciting times. But I felt excruciatingly vulnerable as I sat on the 159 bus, about 6 weeks into our relationship, thinking that this was the man I definitely wanted to marry. Eventually, something shifted, before the babies, around the time it became clear that a wild night out was to a cinema which permitted booze. We settled into a partnership which felt mutual, equal. Our lives were entwined out of choice, but there was enough space between for us both to flourish. Billy became my family, the person I turned to before anyone else, for everything. Of course, there were fuck off moments, usually in the middle of the night as we passed each other in the corridor, each trying to quiet a howling baby, bitterly jealous of the amount of sleep we imagined the other to be getting. But through this time, we were bending towards one another. Billy learnt through the medium of the repetitive nag that clothes do not spontaneously fly from floor to washing machine, and there is no such thing as a bin angel. I discovered that although I was Boss Lady at work, Billy did not respond well to my approach to managing employees. The Knights glue us together. Having weathered the battlefield of the early years, we run a tight ship. We know how we fare when the vomit starts to fly, when the toys are thrown out of the pram, when the dog shit needs picking up. My roles are chief bed-snuggler, reader of stories, poo and vomit clearance machine, provider of food and clean clothes. Billy is moderator, enforcer, teacher of maths and the person who throws the Knights up in the air and shows them the world of star wars and video games (Ballet Shoes just can’t compete).
What does illness do to a partnership? We are still finding that out. Of course, our roles have changed. The lady who once leaned in is now reclining on the sofa, and that makes for a different kind of home-life and a different kind of Kate. Outwardly, I know we look less like equals. I appear the dependent, the one who gets driven around, cooked for and generally molly-coddled. I am allowed lie-ins and get taken on nice outings. In any and all clinical settings, if Billy isn’t there I would prefer a light sedation to being alone. He is my talisman against the smells, the sounds, the vomit and the endless potential for bad news to arrive without warning. On the days we get scan results, you can see us sitting side by side reading Victor Frankl, occasionally squeezing sweaty palms. But this is only a decade in. How would our power-ballad partnership fare after 20, 30, or 50 years? I sometimes allow myself a day-dream about being old together and then I feel a sharp jab of anger that someone else might get to see his face get old and lined, his hair grey, his pace slow. But of course, the spaces between us could have grown into a chasm. I might never have accepted that this was a man who preferred home to a nice muddy walk and would never buy me tasteful jewellery. Billy might have become exasperated by my intellectual laziness and total unwillingness to engage with his latest science fads. So I try not to sentimentalise the future we won’t have too much.
But my dependence isn’t the whole picture. Whilst I’m here, I’m here. We are still two, not one. We sit in the sun, enjoying togetherness but letting those crisp heavenly winds dance in the space between us. We argue and I grump around like a surly teenager (not because of being ill. Just because sometimes I like A Good Sulk). We negotiate on a daily basis what I can and can’t do, because my worst days are when I can’t manage the most basic of household tasks, and therefore feel like an utterly non-contributory member of the human race. Can I take the boys to school? Can I cook dinner? Can I unload the dishwasher and clean the floor? On my best days the negotiations are different: I’ll take the boys swimming whilst you go to the gym. I’ll make waffles for breakfast. I’ll hoover the new astroturf (yes, really. Baxter did some serious damage to the muddy patch of grass we call our garden). The list of what is and isn’t possible goes up and down; but Billy understands what I need to do to feel human. And I understand what he needs too, in a way that no-one else does. In the way you only really get when you sleep next to someone and understand their strange rhythms, little moods, odd foibles. For those who haven’t worked it out, Billy’s bare necessities are exercise, intellectual stimulation, family and man-time in the pub. Oh, and twisters. But I suspect all of us who love Billy want him to share more of what’s going on in his head. But that doesn’t come naturally, not the way it does to someone like me who will spill it all out at the drop of a hat. I am in awe of the friends who arrive to take him out, having strategized on the train how they will make him talk this week. They have tactics I don’t (perhaps eventually resorting to Rumsfeldian interrogation techniques, but for now, booze and Y chromosomes). But whilst I am here, I am here, and I am the comforter as well as the comforted. The dependency between us passes two ways, like the electrons and protons in an electric current.
Of course, I wonder what will happen when things finally change and I become only the comforted, the dependant. I wonder what will happen Afterwards, when Billy is on his own on the sofa after bedtime, having dealt with endless questions from the Knights as to my whereabouts, or whether he is going to die too. I wonder what that loneliness will feel like and how he will manage it. I wish more than anything I could be there to help him through it, rather than be the cause of it all. But I know, and he does, that what we have had is worth the pain he will feel. Like me he agrees with Tennyson’s great cliché that it is better to have loved and lost than never to have loved at all. And to go back to CS Lewis (the great writer of love and grief, as well as other worlds): “To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
*Khalil Gibram, innit http://en.wikiquote.org/wiki/The_Prophet
P.s. I am told that it might be helpful to provide an actual update on my health. Goodness me, I thought you read this blog for poems and my pearls of wisdom, not actual news. Well, I’m 8 cycles of chemo in – I’ll probably have at least 12. I still have my treatment every 2 weeks down at the Royal Marsden. The chemo is basically tolerable, better than the last lot at least. And I’m not bald, though the steroids (and perhaps also the chocolate and macaroons) are making me fat. I’m being scanned all the bloody time, but for now the chemo is doing the business and holding the Nuisance at bay. Though that won’t last forever by any means, it’s good enough for now.
Kate said I should write a guest blog. Blogging is not something I know much about but I said I would, when the moment came.
This Sunday we will have three generations of mothers at our house. There’s Kate’s Grandear who had her hundredth birthday in February and is mother to Kate’s Dad. There’s Billy’s mother, over from Ireland, and me. There’s Kate, mother to Oscar and Isaac. So it’s a good time to write about being a mother.
The last few months I’ve watched Kate engaged in a great deal of advance mothering, doing all she can to smooth Oscar and Isaac’s path through life by remote control. She has thought carefully about all the things she would have done with them as they got older. As a result she’s recording the Narnia canon on her iPad so they can still listen to her reading the books aloud, one day. This week it’s been The Horse and his Boy (I hope we make it to The Last Battle). There is a bookshelf planned, too, for the boys’ bedroom, with her favourite books arranged shelf by shelf in age bands. She continues to write a book based around her blogs and new essays, so that Oscar and Isaac will know who she was and how much she loved them.
Billy is filling a digital archive with photos and film and family memories. And then there’s a Trust fund to be set up so that kind donors can make it possible for family and friends to take Oscar and Isaac to the far-away places that have been important to Kate. She wants them to grow up to be citizens of the world, like she is. She would have taken them to India, to Hampi and Rajasthan. To Vietnam where she travelled with her sister, and the Middle East where she grew up. To Africa, and especially Rwanda and Sierra Leone. To America, where she and Billy always wanted to take the boys to live for a while. And maybe even to study abroad, to expand their horizons further still.
This advance mothering feels like planning a kind of treasure hunt for the boys to follow, with each clue telling them more about their mother. Kate is explaining herself to her children, and in so doing giving them an explanation of themselves. Actually, they are luckier than most. So many of us don’t ever have that explanation, because our parents age and we are always too busy and don’t have time to ask. I remember my father dying, at nearly eighty. He had a small collection of books in his bedroom, bookended on a side table. I knew they defined him in some way, but I didn’t ask why until it was too late.
More practically, Kate has written an instruction manual telling us, amongst other things, how to manage the boys’ everyday lives – school lunches, playdates, clothes, washing, when they’ll need their eyes tested.
What is it, then, mothering? You protect (when you can). You comfort (when you are there – disembodied comfort is difficult). You pass on who you are, and what you’ve learned.
Mothering changes as your children grow older. It starts with a visceral connectedness. It’s the closest to our evolutionary past we’ll ever come. John Bowlby wrote beautifully about the biological attachment system, the force-field linking child and mother. Mother at the centre, predators not far away, child straying no further than a twenty yard radius before being pulled back by invisible strings. The urge to protect and comfort is all-consuming.
It doesn’t stay so fierce. In the early years of primary school, another circle forms around our children and they begin (ever so slowly) to drift off. Friends, mates, the big wide world. When I was a primary teacher I taught six to seven year olds and somewhere part-way through the year they stopped inadvertently calling me mummy.
So you relax a bit, unless the children are ill or in trouble. They reach adolescence and define new selves. They spend so long looking in the mirror that they temporarily stop seeing other people. They bring home a series of Massively Unsuitable Boyfriends. There is a long period when they actually become pretty boring. I seem to remember just wondering when Kate would grow up and start liking sensible, civilised things instead of getting muddy at Glastonbury and wearing dreadful shoes and eating mould from the fridge.
As a mother you are still, always of course, only as happy as your unhappiest child, but the further they drift the less likely you are to know about the day-by-day ups, downs and heartaches. You worry, but only about what you know, which is unlikely to include the full scale of experimentation with illicit substances or the hazards of bungee jumping and riding Indian buses on gap years.
There is a period of detachment, when contact is intermittent and mainly focused on the possibility of cash subsidies. They forget your birthday. Sometimes, you almost forget theirs. We parents are there in emergencies but, as in all long term relationships, some of the magic has gone.
But then the children finally do grow up, become less myopic and get interesting again because there is a growing common ground. You like the same things. You share the same history. What mothering feels like then is a deep friendship that neither of you ever want to lose.
And so we come to loss, or the prospect of loss. I should say a bit about what that feels like.
Here’s one mother worry. As well as being Kate’s mother, I’m also Jo’s. She’s one of two. They are close, Jo and Kate. Jo never asked to be an only child; it wasn’t foreseen. I’m afraid she’ll feel lonely if Kate isn’t there.
I sometimes think about how it will be, Afterwards, for all of us. To know how that feels at worst (which really really isn’t often), look at this film of Martha Wainwright singing Proserpina. https://www.youtube.com/watch?v=FZFxQSgWinc.
You should only look, though, if you want a good wallow. And you have to know the story of Proserpina first.
Proserpina, or Persephone, was the daughter of the goddess Demeter. Persephone was beautiful, and young, and wise. One day she was dancing in the sunshine of a flower-filled meadow. She was seen by Hades, god of the Underworld, who wanted her for his own. He stole her away to his kingdom, to live forever in the darkness of the land of the dead.
Persephone longed for the sunshine, and wept. She turned her face to the wall and refused to eat or drink.
Meanwhile, her mother Demeter sought for her everywhere. Finally she went to her brother Zeus and asked him to help find Persephone. From the top of Mount Olympus Zeus was able to see where Persephone was. He ordered Hades to return her to the land of the living.
Hades said he would only give Persephone back if she had not eaten or drunk a single thing from the Underworld. She had touched little, but she had eaten six pomegranate seeds. So it was agreed that Persephone could spend six months a year above ground with her mother, but she would have to spend the other six months in the Underworld.
And that is how it has been ever since, according to the story. Each spring, like grain, Persephone comes up out of the earth, and dances in the meadow. In the winter she returns to the dark. Her mother weeps again.
The song Proserpina was written by Martha Wainright’s mother, Kate McGarrigle, not long before she died of cancer at the age of sixty-four. So when she sings, Martha is not grieving for a child, but for her mother.
And so it goes – mother to daughter, daughter to mother. Mothers and sons. The story of Persephone takes us to the heart of loss that is inevitable. It also conveys the way Kate and we in her inner circle live at the moment: the long dreary winter of chemotherapy with the hope of spring and summer to come, even if not for ever.
But wouldn’t it be wonderful if it did by chance become always summer and never winter? We might just find ourselves fearfully over-prepared (it’s a family trait): memory boxes and Narnia recordings at the ready but not needed, a Trust Fund suspended, a bench in Cambridge’s Botanic Gardens installed but awaiting its inscription. Pandora’s story (… all that remained in the box was the winged creature called Hope) is another great Greek myth.
And truly, it isn’t all bad. Since The Nuisance elbowed its way into our lives, we have become a much closer family. We have bridged the distances that grow between parents and their adult children and know and admire Kate and Jo much more than we ever would have otherwise. On Saturday we were out in our garden in the sun collecting frogspawn in jars with Oscar and Isaac. Their tree house is being built here this week, and on Thursday I’ll be going to Mothering Day roast dinner with the boys at their school – cultivating my role as what Oscar (noticing I was often there when Kate couldn’t be) once kindly called ‘the spare’.
We have so much fun. There’s still a warm fire to sit by, the garden we are creating, the view of the lake. The trinity of fire, earth and water that soothes, because it is also grounded in our evolutionary history.
‘There is a crack, there is a crack, in everything – it’s how the light gets in.’ Leonard Cohen.
There will still be three generations of mothers round a table on Sunday, and we’ll be laughing.
Our postman is knackered. The poor man has had a lot on his plate recently. I think he may request a new, quieter round, perhaps one where he sees my be-spectacled face and tea-stained dressing gown slightly less often. I, on the other hand, am in heaven. Not literally (not yet), but in writing-paper, parcel and ink heaven. From around the world, from inner spiral and outer circles, post has arrived. Letters have been laughed over. Parcels opened. Cards have been wept on. And now, the letters need to be shared, because if there was ever correspondence deserving of a wider audience, this is it.
My letters of note have begun to fall into distinct categories.
First, we have letters of the past. I love to hear from you, my erstwhile class-mates, co-workers, boyfriends, beer-drinkers. I wonder if you are creeping out of the woodwork with the sole purpose of brightening my mornings. I am becoming increasingly like my centenarian Grandmother, in a blissful reverie of youth, facilitated by your letters and (O! horror!) photos. I have been reminded of my fourteen-year old self. Apparently I was kind, and my hair was shiny. I remember putting a lot of effort into my shiny hair, and very little into being kind, so someone from school remembering me as not all bad is a great relief. I have been transported back to the sixth form, which I spent wearing the clothes of a middle-aged woman (why, when I actually had the body for it, did I not wear actual hot-off-the-streets fashion?) I must have been the only teenage raver wearing Jigsaw and Hobbs as I dabbled in class-A drugs and hard house. University seems less distant, though it was nearer twenty years ago than ten, because so many faces are still around me now – though now with far better hair. But still, so many wise, interesting people who are no longer in my daily life, but who have written to tell me about theirs. To tell me of manifold career changes, of children, of things that have happened that they wished hadn’t, and things that have happened that they always wanted. They have reminded me of the outwardly confident, inwardly terrified eighteen year-old who turned up Hopkins’ towery city all those years ago. The girl who wore brightly coloured g-strings (though I suspect false-memory syndrome from this particular correspondent; the g-string wearer was actually the cool girl the room below me rocking a leopard skin coat, with a talent for darts and a perfect memory for song-lyrics); the Kate who was won over by all these fascinating new people who would talk about Shakespeare as well as unrequited love; the Kate who developed a suspicious new interest in Rugby (players) but hadn’t the sense to realise that eating chips with cheese and salad cream every night might lead to some extra pounds here and there.
We have the letters of uncertainty. I asked you, more than a year ago, to share with me how to live when you don’t know what will happen next, when your world has been shaken apart and the pieces haven’t settled, and maybe never will. The stories you have told have taught me so much. There is the story of my Palestinian-Jordanian friend whose family are spread across a Middle East that is fracturing (all over again) as I write. Amman. Jordan. The West Bank. Gaza. Syria. Uncertainty, fear, loss and suffering as geo-politics as well as family politics. The stories I have been told from South Sudan since fighting began there in December. My friends’ dramatic escapes from Juba. The fact that only white and rich people got on the planes out. The million people who have fled their homes, the towns and villages destroyed, in this – the newest country in the world – on the cusp of tearing itself apart. The stories of families who find joy and happiness even though life doesn’t pan out the way they expected; the letter from my beautiful, blind, disabled, master-skiing, Schubert-sonata-playing, loving cousin Patrick which I shall treasure forever. The note from a friend who lost his unborn baby just before Christmas, who shows courage which can only come from being part of the most wonderful family himself.
Then, we have the miracle letters. There are prayers, lots of these, accompanied by angels, holy oil and the Virgin Mary (thank you, my beloved Muintir, for the waves of love from Belfast). And there are secular prayers. Stories of miraculous recoveries. My favourite is about a young, fit guy who fell into a coma after suffering completely unexpected heart and lung failure. He spent 6 weeks in this coma, with his family and friends (flying in from around the world) keeping vigil by his bedside. The doctors repeatedly told his family he wouldn’t make it. But somehow he did, and now he’s completely well. Even his medics were prepared to describe it as a miracle, which is not a term any self-respecting doc I know bandies around lightly. Listen; I’m not expecting to reverse the course of nature here. But who doesn’t love a story about someone who defeats the odds?
There are letters which make me glow. I think I actually might emit some kind of phosphorescent light when I read them. These letters tell me that what I write matters, that this little voice which has started to roar is listened to, that people actually READ what I have to say and find me (yes me) inspirational. I can hardly believe my luck: remember, my earliest career choice was Poet Laureate. Being told my words mean something to people is about the highest praise I could receive. Please continue. But be warned: too much and I will start believing your hype. I shall develop some kind of Messiah complex, meditate silently in the sun, refuse visitors and cake and expect you all to follow my wise teachings via this rather didactic little book I am writing (yes I am. It’s all about MEEEEE, obviously).
Finally, there are the letters which provide solace. My ever-wise mum asked you for stories of children who had lost parents; happy stories, where the children turn out All Right. We have received many of these (how I wish there weren’t so many). These letters are really not mine to share, but I have to. Please forgive me, correspondents, I don’t follow the rules anymore. First, this from a beautiful girl faced with a potential new step-mum who said she would never try to replace her mother: “I had to hide my confusion and laughter, it was like someone telling me that you could replace fire with wind. As far as I was aware, the position of biologically giving birth to me, nursing me and giving me my eyes, sense of humour and apple figure wasn’t up for grabs. I smiled back and thought “you wish”. No-one could ever tell me they loved me like she did, and no-one ever really needed to again, because it was my grounding, my bedrock. Just because I wasn’t told it every hour again, didn’t mean I didn’t feel it encircle me.” And this, from a wise and funny man I wish I knew better. “Many people wonder how their children will handle milestones if they are not around. I hope that I can shed some light on this, as I have gone through nearly every major milestone with just my mum. Graduation, birthdays, weddings, births, monster truck shows – the big events. And here’s the thing. It’s hard, but there’s a bittersweet aspect to every milestone. You can take stock and you have a moment in your own heart where quietly, on your own, you can simply reflect. You learn to try and soak up everything that you can because you, more than most people, know that things don’t last. I have always tried to make time and drink it all in, and to make sure others are drinking it in with me. I like to stop and make sure that it’s in my mind forever”.
The sun is shining on me today in Cambridge. Someone has sent me macaroons, and I have a box of your letters at my feet (also, by the way, the real Letters of Note which is truly wonderful). Billy and the boys will treasure what you have sent us forever. Correspondents, we salute you.
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.