I should have remembered that this was Friday the 13th. I am not superstitious, but the day began inauspiciously with a close inspection of my Mexican lavatory bowl. I’d lain in bed, trying to put off the moment when the rising nausea could no longer be fought. Since 4am, I’d been trying to get comfortable despite the PICC line sticking out like an obscene misplaced thumb from left hand side of my chest, which meant that I could only lie on my back or curl up over my right shoulder. Sleep was fragmented, elusive, and interspersed with broken dreams of the nuns at boarding school patrolling the corridor, looking for contraband books, booze and cigarettes.
Here, the nuns would have no trouble at all finding an entire dealership of drugs, all laid out neatly on the shiny black dining room table. It groans under the weight of pantoprazole, acyclovir, itraconozole, trimetroprim, ondasetron and dexamethasone, all meant to protect the increasingly fragile body and immune system during chemotherapy.
And most crucially during neutropenia, the period after the stem cell transplant when your body has an abnormally low level of neutrophils. That can last from anything from two to ten days while the stem cells start to work their magic and – hopefully quickly – figure out what it is they’re going to be when they grow up: a brand new functioning immune system, raring to take on and beat all those bacteria, viruses and fungi. But not your own myelin sheath around the nerves.
Neutrophils are essential: they’re manufactured in the bone marrow, and are a common type of white blood cell that help fight off infections, particularly those caused by bacteria. The Mayo Clinic website tells me that people with chemotherapy-related neutropenia are particularly prone to infections while they wait for their cell counts to recover.
For the past two weeks, I’ve been discovering how the chemo drug – a dose of cyclophosphamide calculated to your body weight – carries on working through the body even after the chemo sessions. The sensation of having chemo is odd but not too bad; you’re hooked up to a drip, and at first the clear liquid is cold as it passes into your arm or your chest via the PICC. Then it warms up as it hits your veins. And then, for me, not long after, came the nausea.
The infusion of anti-nausea drugs did little to challenge the rising tide. My stomach began to pitch and roll as if on the high seas, exerting an ever-upwards pressure that soon became irresistible, just as it did while filming on board the frigate HMS Iron Duke as defence correspondent, when I disgraced myself by throwing up profusely in the captain’s cabin for most of the visit, running wordlessly to the loo just as the First Sea Lord began to explain something crucial about the ship, though I am sure the greenness of my face was a giveaway. I should not have breakfasted so well before the helicopter flight on board, though I blame the engine room for having no windows to steady my gaze onto the sea.
Today, as then, despite ginger tea, queasy drops, and an anti-nausea wristband, nothing could stop the sickness once the pitching and rolling had begun.
Despite the anti-nausea drugs, and the chemicals to protect the stomach, at least one in five in every chemo group may suffer from nausea and sickness. And of our five, that would be me. Glad to be of service to the group.
The effects of the chemo so far have been endlessly varied and to me, fascinating. I don’t yet understand the science behind it, but the healing poison that was gently streamed into our veins this morning via the PICC line is definitely having an effect.
The first chemo session left me looking like a chipmunk, with swollen, tender glands around my throat, a feeling all too familiar from mumps as a child, and when the Epstein-Barr virus laid me low with glandular fever as a teenager, just before my A levels. Episodes of chronic fatigue after that were always prefaced by a chipmunk jawline, an early warning to get more early nights and avoid alcohol.
And then on Thursday this week came a blurring of my eyes, eyes already semi-blurred by optic neuritis as the nerves were attacked over the years. My lips started to go numb by today’s last and final five hours of chemo, and tonight, I notice that while my stomach is finally calming after a day of volcanic eruptions (thank you Joy, for those little black plastic bags during the van ride home, and thank you Anne and Philip for the ginger snaps), my bladder has become more sensitive, and a little irritable, though not half as irritable as I was when Tony the driver took those sharp turns onto the motorway bridge after a few rapid little brakes, just for good measure.
But the battle with nausea in the chemo room was stilled for a few minutes by a phone-call from Kabul, from my friend and colleague Mahfouz. Worried by my posts on Facebook, he took to FaceTime to make sure that all was OK. We worked together for many years in Afghanistan, and he is one of the loveliest people I know. I often think of him and his family, even though we aren’t as often in touch now that my stints of bureau cover are over. The last time I was there, we reported on several bomb and IED attacks, but also the (sometimes) happier stories of young students in Kabul and their hopes and aspirations for the future.
So how was he, I asked? He’d just become a father for the first time, he said, to a beautiful baby girl. His wife was still in hospital, but all was well. No name chosen yet, but his delight was palpable across the miles. The political situation, though, was not so good. Kabul has not become an oasis of peace, as so many of us once hoped, and the city itself is a difficult, uncertain place to live, perhaps harder now than it was before.
The old BBC house has been given up, and our staff are moving. I felt a small pang of regret. The house at Wazir Akhbar Khan was a haven of tranquillity amid a mad war. It should have featured in Evelyn Waugh’s “Scoop”, with its sense of timelessness, and the many parties in the garden for new year or birthdays at which ambassadors swapped easy confidences with journalists and spooks from across the city. I’m told that one year, the Taliban spokesman showed up, but left after nobody noticed him.
Mahfouz’s call reminded me of those long-cherished Afghan traditions of hospitality and friendship. He is one of several Afghan friends who are loyal to a fault, and protect family and friends with a fierce and passionate vigour. I realise how very lucky I am to have such friends and colleagues around the world. We’re not always in touch, but Facebook at least allows us a glimpse into each other’s lives. Most often the good things or the funny ones, but the milestones are there, waiting to be seen and savoured.
I know I need to write this blog now because if I wait too much longer, it might be too late, and I may no longer remember my own milestones. Slowly, gradually, bit by bit, over the course of years, I have been losing crucial parts of my brain. I hope MS won’t affect my memory permanently, as it is already affecting my sense of self, but who knows? The neurologist who told me bluntly in November 2015 that I definitively had MS said in an avuncular way that it could be worse. And I could see from the other patients waiting in the endlessly refilling corridor outside his consulting room in their motorised wheelchairs that yes, it could.
But the thought that the myelin that sheathes my nerves is slowly being eaten away by my own immune system has been enough to jolt me into the realization that life is finite. That being able to type or to write may be finite. That the words I remember making sense of so painstakingly after tea at the dining room table when I was five, living in Ottowa, and learning to read, might not be so permanently etched inside my brain as I had once believed.
I still remember opening my red and blue copy of the Cat in the Hat, trying to read each word aloud, my finger tracing slowly across each word on the page. Not to mention arguing with my teacher the next day about how to pronounce the word ‘the’. She’d told us that a T was a TEE and H was a HUH, and an E was an EE. So how could t-h-e be a THUH, and not a T-HUH- HEE? Eventually, and against my better judgement, I was persuaded. I’ve always questioned the received wisdom, not always sensibly, and Dr Seuss kept me reading avidly until I discovered to my immense relief at the end of the book that Thing 1 and Thing 2 had cleared up the mess they made in the house just in time. I’m sure that’s why my parents bought it for me – a book with a strong moral message about tidying one’s bedroom.
But how much the MS has stolen from me since, I do not know. No brain scan can tell you, and the incremental slide downhill gives you little indication of where or if it might stop. Walking to work takes 45 or 50 minutes now, not 25 or 30. Thinking takes longer, and multi-tasking (for this former doyenne of the to do list and multi-tasking at home and at work) has become nigh on impossible.
On the morning that I left London for Mexico, a mere two weeks ago, another glass slipped from my hand and shattered on the kitchen floor as I tried to pick it up. I had to resist the urge to howl in frustration. No Thing 1 or Thing 2 to clear up the mess now.
Yet I know I have been lucky. Mine may be running out, or it may be about to change. But whatever happens next, I have been exceptionally lucky throughout my life. I was born into one family, an accidental child, but was found by another family that wanted and took me in, and loved me boundlessly, infinitely, and always told the three of us that we were special, chosen children.
And at the age of 24, I finally solved the mystery that always hummed quietly in the background of my thoughts when I looked at my face or my knobbly knees, or the way that my nails grew. I didn’t know anyone who looked like me. So where did I come from? Who was my natural mother, and where was she now? And why did she give me up when I was six weeks old?
All I knew for certain was that my father and my mother had adopted me a few months after I was born, at St Anthony’s Home for Unmarried Mothers in Sydney, in 1967. The patron saint of lost things. The nuns who carried out his wishes found me a good home in every sense. In my mind’s eye, I can see the black and white photo, peeling slightly at the edges, stuck into an old family album that shows my two older brothers, Simon and Antony, peering proudly over the pram in the Australian sunshine on the day they came to collect me and take me home to live with them.
Simon is seven, and has an elfin face with a cheeky grin, so dark-haired and dark-eyed that kindly Australians sometimes used to congratulate the family on adopting an Aborigine child. Simon, always known as Sam, was born in Hampshire, so it seemed improbable, unless his parents’ Walkabout had been an exceptionally long one.
Antony, known as Tid, who today stands at six foot two, was then a skinny tiddler of six years old, and stands over the pram with a proud, proprietorial air. A mere two years later, they’d both be sent to a Catholic boys’ boarding school in the north of England, and quickly lose the chubby sweetness of that photograph.
The pram itself is festooned with ribbons. All you can see of the baby inside are two small shut eyes and a few wisps of strawberry blonde hair. In another picture, my mother cradles me gently in her arms, swaddled in a woollen blanket, the broad gap between her two front teeth visible as she smiles proudly for my father’s camera.
Mum’s hair was still jet black then, not the steely grey I remember in later years. It was June or perhaps July in 1967, and they’d travelled from their home in Canberra to Sydney to collect me from the home for unmarried mothers. My teenage natural mother had by then been sent on her way to do her penance elsewhere. All she had bequeathed me at that stage was her Catholicism, big blue eyes, a lusty pair of lungs, and an insatiable curiosity about the world around me.
Years later, my brothers would tease me about their bitter disappointment that morning. They had expected to arrive at the home and choose the baby brother or sister that they wanted. Instead, they got the next baby that came along, as Sam put it with raised eyebrows and an exaggerated sigh, so they had to make the best of it. As the youngest, I’d retort that I hadn’t had any choice in the matter of my siblings at all, and would just have to put up with what I’d got.
In the next set of photos, my father – posted to Australia as a British diplomat – is baring his white, skinny English legs at a family picnic, and making a silly face, as he always does in photos. My new mother, Annemarie, who met my Dad when she nursed him back to health at a sanatorium outside Bern, is looking uncertainly at the camera with solemn brown eyes. Mum was 41 that year, and Dad perhaps 36. They look happy, contented, and in the prime of their life. If she had lived longer, perhaps I would not have gone in search of my natural mother, that absent presence on each birthday as I grew up.
Even if we didn’t talk about it often, I suspect we siblings were always a little curious about our origins. Ten years on, another photo. It’s a family Christmas, the Polaroid tones faded into almost sepia colours. We’re all sitting around the dining room table, in our best clothes and in theory on our best behaviour.
It must have been 1977 because mum is still alive, smiling shyly this time, and wearing her long maroon dress, the one with the white swirls on it, and her black shiny necklace, like marbles around her neck. She never liked having her photo taken, or being the centre of attention. It was her last Christmas, although none of us knew it. In the background, you can just see the book on the Queen’s Silver Jubilee that Mum, a staunch royalist, had been reading.
We’d just moved to Sweden after several years in Bangor in Northern Ireland, a place I had loved, especially my primary school, Ballyholme. Despite the constant background presence of the Troubles, I missed my lush green emerald isle of warm hearts, soft rains and hard accents during those first years in the cold foreignness of a Stockholm winter.
That December, the snow lay thick on the ground, the hill behind our flat in a big red-brick block on Sandhamnsgatan lit up with candles glowing in the snow to spell out ‘God Jul’ – happy Christmas in Swedish. It was hygge before we Brits knew of hygge, and the essential was to be warm and cosy indoors to ward off the winter darkness that loomed long in the skies.
On the table, a plastic tablecloth – a 1970s jumble of brown, green and orange – is laden with a feast of duck with mash and green beans, to be followed by my father’s favourite, rice pudding. It was his parental privilege to be given the warm skin that formed on top of the rice, encrusted with a generous layer of cinnamon, though Sam and Tid complained bitterly about this patriarchal privilege.
It was Christmas Eve, and pitch dark outside, despite the snow on the ground. Inside it was warm and bright, the fireplace lit with fat, cheerful candles as we sang carols and greedily opened our presents before supper, as we’d done since we were little. This year we had a proper tall Christmas tree, festooned with angels and frosted silver baubles, not the Small Fat Bush that I wept over in disappointment at the age of five in Canada. On the gramophone, the needle crackled as Dad put on his favourite Frank Sinatra song and lit another Silk Cut as Mum passed him an ashtray with a small sigh, blowing away the ashes that he trailed in his wake throughout our childhood.
‘When I was 17, it was a very good year’ sang Frankie, a harp plinking as the violins soared. Dad poured himself a gin and tonic, and Mum a Dubonnet, a drink that shone a mysterious, exotic red. She had put on her favourite lipstick in honour of the evening, and blue eyeshadow, and smelled comfortingly of cooking and Carven’s Ma Griffe.
Mum loved Christmas, and we’d spent days together that holiday baking the Swiss biscuits that we’d eat without pause for the next few weeks; Zimtsternchen – stars laced with cinnamon and bedecked with white icing – and creamy yellow crescent moons glowing with egg yolk. The creamy vanilla and chocolate Gugelhopf was always best when eaten straight out of the oven, its jelly-shape perfection a source of wonder. Though eating the dough as we baked was always the best bit, and licking the spoons before they were washed.
Even today, Tid and his wife Jacque still make the best Linzertorte – a lattice of nut-laden cinnamon pastry slats over redcurrant jam, the firm but crumbly pastry criss-crossed and brushed with egg white on top of the sweet preserve, the cake that was Mum’s speciality, brought hot from the oven to be ladled out with love.
That Christmas in Sweden, Sam and Tid must have been in their teens by now, Sam, broad-shouldered and to me, grown-up at 17, sporting improbable ‘70s Burt Reynolds sideburns, and boasting a beautiful brunette girlfriend called Penny. She was only six or so years older than me, but to my ten-year old self, seemed a beacon of sophistication, with her meticulously plucked eyebrows, warm brown eyes outlined in black eyeliner and endless coltish legs in a fashionable mini-skirt.
In the photo, Tid wears a jumper that mum knitted for him, and a ridiculously long Dr Who scarf that he’d knitted himself, crouching slightly as if embarrassed by his sudden adolescent height, towering over the rest of us already. Behind their adolescent poses, and my childish attempt at nonchalance, you can see our eyes shining with excitement as we’d race each other to open the final presents beneath the tree, strewing biscuit crumbs and crumpled wrapping paper in our wake.
I don’t know who started the conversation as we sat down to eat, but the table fell silent as Tid or perhaps Sam asked about our natural parents. Who were they? What did Mum and Dad know about them? Where did we come from?
There was a startled pause. My natural mother was Polish by origin before she moved to Australia, they said. Tid’s family had come from Scotland. Sam’s from England. A veritable United Nations of children. And then suddenly, we could see that mum had begun to cry, silently, tears streaming down her face. We changed the subject and didn’t ask again.
It was twelve years later, late in 1990, that I embarked on a journey back to Australia to try to trace my natural mother, and in doing so, found a whole other wonderful family who have enriched my life alongside my own family far more than I could ever have hoped or expected. But that is another story for another day.
That birthday in Sydney, in April 1967, was my first. Tomorrow will be my second.
Tonight, the stem cells that will be given back to me in Mexico on January 14th 2017 are sitting in a plastic bag in a fridge at Clinica Ruiz. I am hoping that the fridge is free of any electricity surge, such as the ones that dims and then brightens the lights here in a constant symphony of irritation in the dining room at Inspiralta, before I switch them off and go to bed to prepare my body for its rebirth.
I am sure that my stem cells are safe. I just hope that they sleep well tonight, and dream of their new life to be, summoning up the energy to be awoken and reborn in the morning to create their new best selves inside my veins, surging with new life and new health.
5 thoughts on “Puebla Day -1 The Last Chemo”
I simply don’t know how you manage to write such a wonderful blog given what you are enduring with your treatment.
Regarding the seasickness you have my complete sympathy having made the crossing between Penzance and the Isles of Scilly several times over the years. This is an area of water narrowing as it goes into the Western Approaches as well as becoming shallower coming onto the continental shelf. Here the sea is like the Lord and moves in mysterious ways.
I wish you well through the next critical phase of your treatment; you are in my thoughts.
With Best Wishes,
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Your blog has become the highlight of our morning, accompanied by a cup of coffee. So good to hear where you are at and snippets of your interesting and fascinating life.
I remember during chemo, Caroline came to see me one day and she said you look strange – my head was swollen and bright red, like a michelin man. It turns out I had fluid retention, which is hardly surprising given the amount of fluids that slowly drip into me day and night to keep me hydrated and protect my organs. They gave me frusemide and then the flood gates opened, I was peeing constantly for about half an hour.
It’s a bizarre thing Chemo, you have all the symptoms of being ill without actually being ill, it’s hard to put it in words – you’re the expert at that !
I remember when the had put the Hickman line in, I asked the nurse “Are you sure that this is right, aren’t you pumping chemo straight into my heart”. I was in such a confused state, it’s a big thing to put your life into the hands of others.
Anyway, good luck with today.
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Caroline, I can’t imagine how you are able to write such wonderful and poetic prose in between bouts of contemplating the bottom of the toilet bowl- but then, you’ve never been someone to do things by halves. Your positivity is brilliant. I hope you have plans for turning all this into a book – it’s so well written. Keep keeping positive – lots of love from frosty Yorkshire, where we’re spending the weekend,
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Love your updates! Beautiful, interesting and informative. You are so brave. Sending healing thoughts your way 🙂
Caroline you are simply the best wordsmith invented.
I follow your journey totally immersed because you have a unique ability to connect deeply to your feelings.
And love the layers you add to make it sing with reflection.
Keep well. Keep writing.
Sending you masses of healing energy💫💫💫
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