(This is an article Kate wrote for the Times last week, which was printed today. She asked me to publish it to the blog as our time with her is now very short. Billy – 11th Dec ’14)
The ghost of Christmas Future will hang around our table this year. As we decorate the tree, open our presents and sit down for lunch, I will not be the only one imagining what these same rituals will be like next December when I am no longer there. This is my last Christmas; 2015 is the last New Year I will see in. I am 36, my twin boys are not-yet-six, and I am dying from advanced colon cancer.
I have had this disease for over two years, but now I am drawing in like the December nights, knocking on the door of what Philip Gould called the death zone – the great winding down we all will face when we have weeks, not more, left to live. We found out last month that cancer was reproducing wildly in my colon, abdomen, lungs, liver and bone - ever the over-achiever, my disease has taken the opportunity of a break from chemotherapy to run riot. So, I have exited the world of Oncology, a known space of sage Professors and carousels of bright young Registrars seeking to nuke my disease with an aggressive phalanx of drugs. I enter the calmer, quieter world of Palliative Care; regular visits from the nurses at my local hospice, ever increasing doses of morphine in an effort to quell these terrifying new-found pains that travel my body. In this new world my quest is for liveable days, pleasant and comfortable hours and moments of snatched happiness.
When I was asked to write this article about Christmas I hesitated. I hesitated because I am terrified that I won’t make it even that far, and writing down my hopes seems like tempting fate. Look at Linda Bellingham. She decided to stop her chemotherapy to give her a glorious “last” with her family, but she didn’t make it. And I am desperate to be well enough to open stockings and sing O Little Town of Bethlehem one more time, and desperate not to mar festive seasons to come with the grim anniversary of mummy’s demise. But, like all things that come with this dreadful disease I have named my Nuisance, I am not in control. I do not get to decide what speed this final part of my journey takes. Force Majeure could strike at any moment: I could pick up a chesty cough from the school playground which would do me in. The tumours could tighten their stranglehold on my liver well before it gets its last taste of Christmas sherry. Cancer is cruellest to the control freak like me. It strips away pleasures, one by one, finally stripping away my ability to plan anything other than the day ahead.
Come what may, Christmas won’t quite be Christmas this year for our family. Faced with this combination of hope and uncertainty, my family learn from Larkin: we know there is nowhere we can live but days. We can’t postpone our happiness until tomorrow because we don’t know what tomorrow will bring. We have to make the most of now. The 25th December is too far away to bank on, so I am denied my usual months of pre-Christmas list-making. But today, oh today I can be sure of. Today I will meet my best friend’s newborn baby. Today I will sit with my children and stuff our tasteful wooden advent calendar with gaudy sweets. Today I will walk with my Dad along the banks of the river Cam as the damp December mist enfolds us. And soon, so soon, it will be time to get the Christmas decorations out and marvel over the brightly coloured objects we haven’t seen for a year. Primary-coloured, heavy clay bells strung on ribbons, fashioned by clumsy toddler hands. Baubles covered with baby handprints. The armless Angel we cherish, amputee or not, secure in her perch at the top of the tree.
We can’t bank on anything. But that doesn’t mean we stop hoping for it. With a break in the pain, I can get out of my bed and my planning gene kicks in, as irrepressible as hope. What do I want this Christmas? I want to do the simple things again. Christmas is about precious rituals carved out over the years; learned from my parents as I grew up, now taking on a new shape in my own family. On Christmas Eve, I want my husband, the boys and I to go to cinema to see Paddington, have a crudely un-festive lunch of burgers and then go and sit in the shadow of Isaac Newton’s statue at the Trinity College crib service. I want to be able to get up at 6am to the shout of “is it morning yet?” and “Father Christmas has come! He’s come!” I want to toast my 100 year old Gran and smile as I see generations of one family around the table suffering our annual ration of Brussel sprouts. I want to see in 2015 in the wilds of Suffolk with my best friends and their kids, and a massive rib of beef. These are more than plans. They are iconic rituals which have gestated over the years. Repetition has scored the grooves deeply into our lives. I know these things we do will not die with me.
Let’s say I do get that far, let’s side with hope and say I make it to the toasts and the turkey and the carnage of present opening. I wonder how we will cope with the presence of Christmas Future at the feast. I am sure two rambunctious five year old boys will help keep him under control. And we are a pragmatic lot, our family, so I suspect we will welcome him in with some black humour and offer him a mince pie. An unwanted but acknowledged guest, better at the table than knocking menacingly at the window. Better we welcome him in and recognise that whilst my time-horizon is now as truncated as a toddlers, for those sitting next to me the idea of a long afterwards when our family is three, not four, is ever present in their minds.
I wonder if we will struggle more with the burden of lastness and the expectations of perfection it brings. There are few things I distrust more than the bucket list; I find any potentially wonderful experience easily ruined by the weight of expectation. I can celebrate this year being the final Christmas Dinner I eat - I never liked turkey much anyway. But if this is the last time I will open stockings with my children at the crack of dawn, then I will want it to be perfect. And, of course, it won’t be. Even if by some miracle I am fit (tish) and well (enough), like every family we will have our festive niggles. My darling, consumerist, selfish little boys will cherish the plastic Minecraft figures I bought them under duress more than my hand-crafted, memory laden gifts I have prepared for them. I will expend precious energy shouting at them when they refuse to wear a “smart” shirt and trousers for the big day. They will see more of the Mini-Ipads which Father Christmas has been asked for than my precious face. My husband will hate the jumper I buy him, as he does every year. The dog will steal a leg of turkey. My parents will have a terse exchange over the gravy, and only I will want to watch Downton Abbey.
Christmas always brings with it these stupidly high expectations, whether it is the last ever or whether you have years more celebrating ahead. We have expectations of perfect families, well-behaved children, thoughtful gifts lovingly received, peace and harmony replacing squabbles and nagging. If we are not careful, reality will ruin Christmas. Not just for our family, what with all this fate-tempting writing and my sky-high hopes, but for all of us. So I like to remind myself that a real Christmas includes the bad stuff too. Not just the gingerbread house, but the arguments over who will get to eat the sweet-filled roof. Not just the carol service, but the cold, wet wait at the bus-stop afterwards. Not just generations of family under one roof, but snidey bickering, competitive gift-giving and marital disharmony. And for us, this year, not energetic mummy running the show, but mummy lying on the sofa. Mummy sleeping through present opening. Mummy reaching for her ‘special Calpol’ to ease the pain. Dad taking too many photos of mum. A little cry on each others’ shoulder at the end of the day.
The Christmas idyll is never an idyll, for any of us. So my promise this year is to enjoy all of it. These days that lead up to it, not just the main event. The grumpiness, anger and frustration with my best beloveds that are a reminder that I am alive and red blood still pumps through my veins. I am pale imitation of the energetic parent I once was, but there is still pleasure to be gained from Christmas as a spectator sport. Though my Christmases past are blissful memories, I do not need to live there. The present is no idyll, but it’s what we have. And I intend to enjoy it. May you all do the same.
I have been putting off writing this mainly on the basis that I hoped to have generated more witty and hilarious tales about my must-have new autumn accessory (AbdoBum™) to horrify and entertain you with. But the old Wing’d Chariot keeps beating relentlessly at my back and it seems my new abdominal friend has become old news, so I’d better get on with a medical update.
Chemotherapy has been brutal for me, as it is for everyone. But 20 cycles of the Foxes have given me an extended golden period, 10 months of it – time to see the crocuses, tulips, clematis, and now the leaves turning again from golden to red and the mists come down. I had my perfect summer. I’ve finished my book. And I always knew the time eked out through chemo was limited. We lived under a wary, fragile truce. The eventual winner was always clear: chemo works by nuking cancer cells. It gets what it can, but it doesn’t get everything. The strongest, wiliest and most devastating Nuisance-proliferating cells survive. And eventually, they are all that is left, their weaker brethren defeated. A new Nuisance Master race has been born, out of the basic Darwinian laws of evolution. It seems that my own Nuisance cells have now reached this critical mass. The chemo isn’t containing them anymore; instead they are reproducing wildly in my liver, colon, bones and even my lungs. In some ways I am unsurprised and perhaps even a little proud of their intense productivity. Of course my cancer cells were always going to be highly-efficient little multi-taskers, reaching for the oncological stars, breaking records. How could they not be over-achievers? They are part of me, after all.
So, since I came back from my summer holidays, I’ve been in more and more pain in more and more places. I’ve spent far too long in hospital. I’ve been operated on. During all that, the little blighters have been leaning in big time, working around the clock to maximise their efficacy; so much so that chemo is now redundant and we are into new and unchartered waters. There isn’t another option up the Doctors’ sleeve, my chemotherapy days are pretty much exhausted. Instead, there are these things called clinical trials. The sort I am looking at would pump as yet completely untested drugs into me to see if they just might slow the Nuisance’s inexorable growth like some kind of a Christmas miracle. Let’s be clear, the chances of one of these new drugs hitting the bull’s eye are very, very slim. It is more likely that we are in end game now. This might be the moment I fall apart. But I hope not; I hope to hold it together. I’m shooting for my usual mix of dignity, elegance and hilarious wit. Watch this space.
Because you are well schooled in the ways of the Spiral, and because you are all dear, dear people, you will want to know what you can do to help as we move into this strange new territory. The truth is, for the moment we are keeping things tight. I’m being well entertained by Billy, the boys, my family and the best women. That is all I need – other than the thud of post arriving on the mat, the opening of a crisp envelope, and sitting in the warm glow of your words. Keep writing, please. It really does help. You have probably noticed the replies drying up: sorry about that. It doesn’t mean I love you any the less, just that I am feeling rather beyond chit chat and thank-yous. The flowers and other reminders of our beautiful wild world which you send are much appreciated, too. Hold back on the sweeties, because I’m not allowed to eat very much but might be driven into a sugar-frenzy if too many Crunchie bars were within my eyesight. If you want guidance on what to say, do or send you could do worse than ask the advice of my Oiseaux who are, as ever, encircling me in luxury goods, directional lounge wear and plastic divertissements for the boys.
And remember, there is always someone else in the spiral who needs support, probably much more than me.
What else? Well, my book is coming out in January. It’s called Late Fragments and IT IS ON AMAZON AND IT HAS MY WORDS IN ACTUAL PRINT. Soon I will transform my blog into a whirl of promotional activity, which will be dead classy and not feature any pictures of me looking wistful in headscarves. Because it isn’t that sort of book. You might stumble across me in print before then – I’m writing a bit for the Times, some little articles for which we had to do family photo-shoots which Isaac worked like a Kardashian and Oscar sulked through. And now I’ve finished the book… back to the blog, I promise.
I have to end with the AbdoBum, to reward those of you who have soldiered on, desperate to know what Autumn trend I am working. All the pain and sickness I’d been having revealed that my digestive system was basically unable to cope with the spreading Nuisance. We were on the brink of a major plumbing failure. So, I had a little operation to give me a colostomy, which Jenny has christened the AbdoBum, and Katy names my TummyRose. Needless to say the boys are fascinated by my new super-power of pooing from my stomach. I am oddly mesmerised by the medieval disembowelment I have been subjected to (that is quite literally what it is and looks like). Billy has not been permitted to view the thing yet. I am busily racking up a store of what social media would call FML moments to regale you with (nadir thus far: colostomy bag leaking poo en route to school, Oscar vomiting on the street at the sight, new sheepskin coat ruined). I’m pretty sure there is a hashtag for that somewhere…
The world was too distressing for Today listeners this summer; apparently, they switched off in their droves. I grant you, the big out there looks pretty grim. Planes full of people like us are shot down by rockets, or mysteriously disappear from the skies. The Middle East convulses with pain, yet again. Millions sit in camps, fleeing from masked terrorists. Suddenly medieval beheading seems to be the mode of execution du jour; repulsing and leaving us wondering what will happen to us as we walk down our local high street. And three countries very close to my heart are wracked with a plague of blood and shit and vomit, threatening a decade of progress made since West Africa emerged from those awful wars of child soldiers and sparkly rocks.
I wasn’t one of those people who switched off. I didn’t need to: news doesn’t penetrate La France Profonde. All summer, I was quietly and happily myopic, distracted only by whether the attractive white cows were in the top field or not. And now I am back here I seem to be able to listen to Yazidi women howl as they kill their own daughters rather than watched them be raped – and I barely blink an eye. My tumours are insulating me from the world. The quotidian tragedy that is my own life consumes me. Pain is an anaesthetic, and there has been pain; my golden summer has disappeared into grisly autumn. I write this from hospital, where the smell of alcohol wipes and the endless bleep-bleeping of drips adds yet another barrier between me and the world. I turn inward on my body as it starts to really fail me.
But this is not who I am. I am someone who is moved by things; the torture chambers at Madame Tussauds were too much for my childhood sensibilities. News isn’t news, it is the lives of people I know; some in my dreams, and some in reality. Hey, I’m no saint. I’m selfish to the core, and all too often choose to feel *caring* only when it suits me: at work, where I tell myself that public service changes people’s lives, but not on our street where I shy away from the ranting woman cared for (or not) by the community. Empathy enough for those I see when I choose to turn on the TV, or the amputee children on the street when I travelled to Africa, but not for the woman opposite me who cries whilst she has chemotherapy. I have set my store on being someone who is involved with the world, who bears witness. But the truth is it’s always been hard. I am a woman of the Chorus from Eliot’s Murder in the Cathedral, the type of common man who shuts the door and sit by the fire. Prepared to do her bit, but perhaps afraid to stand up and be counted when it counts the most.
Seven years we have lived quietly,
Succeeded in avoiding notice,
Living and partly living.
There have been oppression and luxury,
There have been poverty and license,
There has been minor injustice.
Yet we have gone on living,
Living and partly living.
But, at least from my place by the fire I am thinking about these things. I wonder if compassion has to be practised. It is a muscle in our body, there from birth in all of us except the most psychopathic monsters. But it needs to be exercised; I can’t let it sit flabby and loose like my tattered abdominals and just expect it to suddenly power-lift weights. No, this muscle needs a regular work out. It needs to be forced to pay attention to other people’s suffering. To listen to the radio and not forget what I have heard when I switch it off. Not to avoid the woman on my street as she froths at the mouth and tries to speak to me. To talk to the homeless man selling the Big Issue outside the Grand Arcade as if he were the shop assistant at Space NK. To feel grateful that I have a comfortable, free hospital bed, unlike the scores who are dying on the steps of overcrowded hospitals in Monrovia, Freetown, Conakry.
I have to exercise this muscle because what happens in the wicked world out there is “woven like a pattern of living worms” into my guts, just as it was for the women of Canterbury. Or, to use a less repulsive image, No man is an island entire of itself. Every man is a piece of the continent, a part of the main. But it feels harder now than it ever has done. I look for your help to keep me connected to the main, not to let myself and my family float off into our own little world. Even as I turn in on myself I must turn outward; because that is who I am, and the woman I want my sons to know.
P.s. If anyone is thinking of running any marathons in the near future I couldn’t think of a better cause than Medicins Sans Frontiers whose staff are doing incredibly brave things in West Africa (and elsewhere), or StreetChild who are working in Sierra Leone and Liberia, including with the many, many new orphans of the Ebola crisis.
Today it is grey, but the last few months have been filled with sunshine – metaphorically and literally. Last summer was stolen from me by endless chemo and my own fears of just getting on with stuff, no matter what the Doctors said. This summer I turned all that on its head. We had the summer of a lifetime, the kind that would stick in your mind whether you are 5, 35, or 65.
We sat in the sun everywhere we could, bringing it with us when the heavens didn’t oblige. Ibiza was hot, full of glamorous Spanish women in thongs, the place where Oscar finally learnt to swim without arm bands and where Isaac won his spirit name “nut-brown, white-butt”. EuroDisney was full of surly French teenagers serving Barbe a Papa at glacially slow rates, hurling angry glances my way, as if to suggest I was all that stood between them and hot teenage pashing behind Sleeping Beauty’s castle. But even they couldn’t ruin my happy place; that blissful pink fairytale, the perfect ‘ole USA Main Street, the endless sweeties, the way Disney has embraced every lucrative children’s franchise ever created.. Mickey Mouse Star Wars? Bring it on. Then, down South to my spiritual home and no doubt final resting place, the house that Dad built on the edge of the Gorge D’Aveyron. There, I cooked one meal in nearly a month, and spent my time swinging in the hammock, supervising daily weapons training and swimming for the Knights, and devising dragon-themed treasure hunts. Oliver Cromwell was spotted, but thankfully not by me or Oscar. To us, he remains a terrifying chimera, something to be swept aside by ice creams, éclairs and soggy French donuts.
This is all to say thank you to everyone who made such a wonderful summer happen; especially my family. Mum was transformed into Dobby the House elf, cooking and cleaning up after me, my scummy offspring and our various hangers on. Dad dutifully made, repaired, sanded down and painted the ever Knight’s ever-growing cache of weaponary (this year boasting a prehistoric axe). Jo and Jussi were outdoor Rangers, teaching the Knights to make a wigwam, light their own fire, and roast marshmallows. Billy was (as ever) my steadfast prince, enabling me to carry on chemotherapy through all this by learning all that he could from the angels of the Marsden Medical Day Unit. This, despite succumbing to a terrible man-malady which laid him lower than me for the end of our vacances (pity him a little, because he didn’t get much sympathy from me).
Now the leaves are falling, the mornings are darker and crisper. Real life begins again. And I’m ready for it. I had a bunch of scans last week and despite dire predictions from New Registrar #368, the Nuisance is stable in my soft tissue and spreading only in my bones; specifically my very painful right butt cheek. So, the plan for now is 4 more cycles of chemo, taking us to mid-November, some butt-directed radiotherapy, and then another scan. In between times, I am planning holidays to Ireland and the South of France (for a dear friend’s wedding ceremony on the beach, which promises to be both très Kardashian and somehow rather Shamanic). An autumn directional wardrobe calls me, though I have decided that the Chubby fur coat I long for so much can only be worn by those who aren’t actually chubby (my fatness and waning hairline will be the subject of a far more whingey blog). Plus: what on earth to wear to meet the Queen next month? Fascinators prohibited: all advice welcome. As I finally finish My Book, there will be time for more writing, of the esoteric rather than prosaic form. Watch this space. Amidst chemo, there will be school pick-ups, play dates, and parties. There will be at least one major piece of home renovation. And of course, there will be gloomy days, exhausted, sicky days, and plenty of time when I won’t want to open the front door. Bear with me.
So, the rollercoaster continues. Don’t worry if I go silent again for a while. As per the title of one memorable cancer memoir: Until Further Notice, I am Alive.
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.