Puebla Day + 3 Of invalids, heroines and a room of one’s own


On this cool, sunny January morning at Inspiralta, Katty, the Mexican cleaning lady is scrubbing the apartment clean as if her life depended on it. In fact, it’s mine that does, and I am grateful to her every day.

Katty must be in her 40s or so, slim, wiry and strong, with a face that’s survived much sunshine and hard work. Her eyes, berry-black like Mrs Tiggywinkle’s, betray amusement when she sees me emerge from my bedroom for breakfast, my mouth and nose covered by a blue surgical mask, like a refugee from the bubonic plague.

My nurse Joy tells me I must wear the mask even indoors if the outside world has come in, just in case Katty bears more than her infectious smile when she arrives early each day.

I eat my porridge dutifully, with little real appetite, as Katty cleans my room. Thanks to her, I have the luxury (but this week apparently a medical necessity) of fresh sheets every day.

Today’s sheets are cheerful; bright purple flowers strewn around a white polyester expanse. They don’t quite match the roaring tiger-head synthetic blanket that is rolled as a bedspread on top, and crackles with static electricity rather than roars when I lie down.

But the tiger and I have made our peace, and I’m rather fond of him now. Though from his slightly musky smell, I’m not sure he washes every day. I must ask. Big cats may be averse to water, and in this one’s case, the acrylic sheep-wool facsimile on his other side might take at least a year or so to dry.

Katty leaves. Then Joy goes out to do nurs-y things at the supermarket and stock up on food suitable for an invalid with a compromised immune system, wearing her blue mask to protect her from any germs, and by implication me.


And suddenly, apart from the banshee wailing of the wind on the north side of this ten- storey tower block, the flat is empty and still, apart from me. I’m not allowed out at all as my white blood cell count plummets.

So I am confined to barracks today, or rather the 100 square metres or so (far bigger and more luxuriously appointed than my own draughty flat at home) of my apartment at Inspiralta for the forseeable, or until those new student stem cells hurry up and get to work.

Although I’d admit this to only a few, this languorous state of invalidity is not entirely unwelcome. There is nothing I can do about it, and I need do nothing at all. Perhaps for the first time in around 49 and three-quarter years. There is nowhere I need to be, and nothing I have to do, and nowhere that I am even allowed to go.

Forbidden to do the washing up. Or the Washing. Ironing. Cooking. Working. Walking. Tidying. Breathing in dust, pollen or soil. Eating out. Or anything useful at all.

But nobody has forbidden reading or writing. And lounging aimlessly is expressly bidden.

So I am lying, lolling languidly on the sofa on doctor’s orders. I re-discover to my surprise that it is something I can do extraordinarily well if I only try. Thank you doctor, and thank you nurse Joy.

I can finish ‘Old Filth’ by Jane Gardam in peace after Katty and Joy have left, because there is absolutely nothing else that I must do today apart from encourage my stem cells to grow.

As the stemmies are now (most likely) adolescent, I have happily thrown my usual sensible diet to the winds (some days quite literally), and have spent the day feeding the juvenile stem cells freshly-popped popcorn (good for the digestion, I’m told, and I like it too) and the very smallest glass bottle of full fat Coke as a treat. I am told it settles the stomach, and the stemmies may well like it too.

Today, I can allow myself, my oh-so-very-busy self in my real life (or at least what I still think of as my real life, though perhaps it is not any more, and will never be again), to relax into this lassitude.

The to do lists that scheduled everything to the minute, even sometimes the time we could have while filming and editing and broadcasting for a sandwich or a loo break, the interviews, research, household chores, travel, mortgage, taxes. All irrelevant now. Not necessary. Real life is on hold. I really am an invalid, and I’m allowed to relax.

And once I do cast all those cares away, this becomes a delicious day. Instead of thinking of all the things I can’t do (the sun is out – yes, I do want to come round and play – but sorry, mum – I mean Joy – says I can’t), I persuade myself of all the many benefits of staying in at my Puebla high-rise home.

Inspiralta artwork block A 


A room of one’s own and perfect peace. Just as Virginia Woolf said – all a woman needs to sit and write. Along with money. Well, I have numbers one and two. Number three we can  work on when I am well again.

As I lie on the brown corduroy sofa here, I think of Elizabeth Barratt Browning and her spaniel-eared Victorian curls, lying on her sofa penning love sonnets and “Aurora Leigh”, suffering a lung illness and a spinal injury, before she defies both her father and ill-health to run away to Italy with her romantic husband and fellow poet Robert Browning.

She is far from the only female literary invalid and heroine. So many books written already on “the female malady”, or “illness as metaphor”, woman enduring, battling, beating and sometimes succumbing all too young to physical ill-health, madness or death. All women who ended up, one way or another, in the twilight or the quiet curtained room of the Kingdom of the Sick. How much of that came from the tension between society’s expectations and their own desires? Or pure bad luck, and circumstance?

I give up pondering and return to my book, munching absent-mindedly on popcorn. A friend helpfully texts to point out to me that my stated desire while working as a geriatric nurse (in yesterday’s blog) in Germany to write and illustrate a medical guide-book to poo was already out of date, as the Bristol stool scale has existed since at least 1997.

But I thought of it first! Damn it, my downright laziness and lack of get-up-and-go a whole decade earlier meant that the world was deprived of my full-colour illustrated guide to 100 different types of poo. Instead, it got what I can only describe as a half-arsed scale, based on an extremely primitive faecal measure of a mere one to seven, when all of us (especially with MS, the elderly or after chemo and a stem cell transplant) know there really are far more.

All this would have been a very public service by me, to help the British discuss their bowel movements with doctors and nurses in the same free and easy way that the crappers of Germany, Austria, France, Italy and Spain have long enjoyed as their European birthright, like the Enlightenment. Perhaps the Brexiteers are right. We British really don’t belong in Europe, a conglomeration of countries that boast stool-viewing ledges in their loos. Maybe this is what Theresa May really means by a clean break.

After another sunny hour or two, I lay down the appropriately-named ‘Old Filth’ with satisfaction as Jane Gardam’s beautifully understated finale pulls together all the strands. It’s very good on memory, identity and desire, and belonging, and the irritations of encroaching age and infirmity on life.

I sit down at the dining room table and realise that as an invalid, for now at least, I have somehow returned in mind to the sickroom of my childhood.

Switzerland 1978 or 1979 

Perhaps that explains why all the references echoing around my brain this week seem to come from my favourite childhood or teenage books. All those decades of hard-fought and hard-won literary sophistication stripped back to the very beginning. Because in the beginning, there was the word.

And those words and those books are all still in there somewhere, trapped forever in my head as a golden seam of memory amid the ever-shifting grainy layers of other knowledge above and below.

The silence and the sofa and the gentle whirr of the fan beside me here in Mexico have somehow combined to set my brainwaves vibrating at just that frequency again, the exact same one as when I was seven or eight or nine, just beginning to realise the utter and infinite wonder of a whole world of books.

From the Egyptian legends to the Roman and Greek myths. Aesop’s fables. Anne of Green Gables. Children on the Oregon Trail. Anything by Ursula le Guin. Any Enid Blyton adventure or the Chalet School Girls. The Wind in the Willows. Watership Down. I read voraciously, indiscriminately and with utter, greedy delight. I would rather spend my pocket money on books than sweets, even the yellowy flying saucers that in a satisfying confectionary transubstantiation let sherbet fizz and melt on your tongue when wet. Or the chocolate and caramel curly-wurlys that went on never quite long enough, just enough to make you want another.

I was also addicted to comics, and my weekly pocket money went on as many comics as I could afford, as the school library provided for the more improving sort of books. I liked the Beano and Dennis the Menace and the Bash Street Kids, but Bella Barlow the talented tough English gymnast in the weekly comic Tammy was my greatest heroine of all.

This must have been around 1974, the time that Olga Korbut and Nadia Comaneci were making news at the Olympics with their grace and athletic bravery, my generation’s own two Simone Biles. That they were Soviet or eastern European didn’t matter: their guts and grace did. Olga was the “sparrow from Minsk” in Belorus.

Bella Barlow, her comic-book counterpart, was an orphan whose acrobatic talents were modelled on theirs. But the difference was that instead of pots of Soviet money, national encouragement and endless coaching, she was English, working class and poor, and living with her evil, feckless aunt and uncle. They are, in true Harry Potter style, horrid to her. Utter total villains.

They squander their money on bingo and booze, and Bella is forced to cook for them, and clean. She is starved of education, does all the housework and is even beaten up by her appalling relatives, though she never shops them to social services, for fear of worse. Bella’s aunt and uncle are far, far worse than Petunia and Vernon Dursley ever were to Harry, though I can’t remember their names. But being the determined heroine that she was, Bella always found solace in the one thing she loved: gymnastics.

With sheer determination, will power, kindness and a quiet stubbornness that finally wears down all obstacles and opposition, Bella the gymnast wins through. And somehow, at last, her ill-willed aunt and uncle see they can make money from her talent – and they let Bella compete, though not without many slips along the way.

And in an enormous stroke of pluck and luck (at last, for I could hardly bear any more hardship and tragedy week upon week after the first year or so) Bella saves a man’s life. He happens to be the Soviet ambassador (Tammy was nothing if not educational), so Bella was rewarded with a gymnastics scholarship to Russia.

More Inspiralta artwork 

Perfect. But oh woe. I thought Bella would end up living happily ever after and winning the 1976 Olympics. And maybe meeting Piotr the Soviet gymnast love of her life, and fomenting world peace between the Soviet Bloc and the west when they married and had Soviet-British babies, and helped solve this horrid Cold War that people spoke of that had something to do with the Olympics on TV.

But no. No sooner does this miracle happen, than Bella must suffer again. She makes a mortal enemy of a Moscow rival gymnast, and finally, in a terrible denoument, in which she seeks to help her enemy, Bella breaks her back and ends up in a wheelchair.

I have to tell you now – just in case you’re worried – that Bella did eventually rise again to practise on her beloved balance beam and bar, and revert to fantastic medal-wining form, long before Team GB was a twinkle in any Olympic marketeer’s eye.

But not of course until a terrible and lengthy battle back to health, with many setbacks in between, Bella dressed every week in her unchanging overalls and simple black t-shirt, a minimalist well before her time, though I suspect they were meant to denote her poverty and utter lack of clothes (or vanity).

Bella was my heroine because despite all the above, she was never embittered. She remained determined. She would push on against all odds. And just as importantly, she was never perfect, or goody-goody, unlike other irritating heroines in children’s books.

Bella had her faults. She sometimes lost faith in herself. She leapt in without thinking sometimes, quite often with dire results. But always with the best of motives. And there was always the perfect arabesque to be aimed for, or the spectacular impossible leap from the gymnast’s bar in the graceful illustrations on the flimsy cheap paper for the cost of a few pence. I don’t remember how many pence Tammy cost, but Bella was worth every single one. All I can remember is that a Mars Bar then cost 6p and I still had pocket money left on a Saturday to buy at least two comics a week, much to Mum’s dismay.

Beach near Holywood and Crawfordsburn

Yet I never kept a single one. We moved, and we moved house again. So there are no Tammys or Tammy & Junes to remind me of the brilliant drawings and stories that I can still see so clearly in my ageing, blurring mind’s eye. Though luckily my mind’s eye doesn’t suffer from the same blurring that my real left one does. It’s as clear as a Swiss mountain brook, and rather quieter.

I use that still unclouded eye to scan across my childhood bookshelf so many decades on – a dark brown wooden triple row of shelves that hasn’t existed for me in reality since my adolescent self decided to cast aside such childish things, a decision my 49 year old self regrets.

On the edge of that bookshelf is a sticker for Pink Floyd’s Dark Side of the Moon that would never quite come off. I was cross when a mischievous brother stuck it on, though now my nostalgic self wishes it all back again. And somehow my mental gaze stops again at What Katy Did and What Katy Did next, and What Katy Did at School.

Stockholm 1977 or 1978


Katy was a heroine with many of the same qualities as Bella, though ending with a rather different moral lesson. As I read the Katy series eagerly in the 1970s, I didn’t realise at the time that these were books written by Susan Coolidge in America in the 1870s, a full century before.

Her heroine – my heroine – is eternal. Katy Carr, a 12-year old American girl growing up in a small town in Ohio. Parents probably middle class. She wears a pinafore on the cover of the copy I had. But inside, Katy is tough. Feisty. A tomboy. A hoyden. Every bit as good as the boys at climbing trees and playing chase. Untidy. Just as my bedroom was when I was seven – never a tidy place unless Mum really, really nagged me. Katy argued with her siblings, just as did I, and later bitterly regretted any harsh words. And just like Katy’s, my clothes were usually stained with dirt after playing in the fields and on the forbidden building site next door with the other girls and boys.

Katy, in other words,  seemed to me to be just like me. She always meant to be prettier, cleaner and girlier, but somehow always ended up being tomboyish or just not as nice as she’d meant to.

Until – of course, inevitably – tragedy strikes. A terrible accident (why do or did girls who are tomboys always end up having terrible accidents that cripple them?) that turns Katy into an invalid. But it also metamorphosises her into the good, kind girl she always wanted to be.

Her illness, her broken back, her darkened room, made her a better, more patient girl, who listened more and spoke back less. Who looked out for others, who became the warm and loving heart of the house, even as she was no longer able to walk or run.

I read that sentence now and wonder why these were books that meant so much to me at the time. Although I understand entirely why I am thinking of Katy and Bella now. They got better again, after their dreadful but blessedly temporary dip in fortunes.

But why in the 1970s did both speak equally strongly to me about the unchanging virtues expected of a girl? How being loving, kind and nice (and clean) were more important virtues or skills than anything else (eg prowess at climbing trees, being clever, answering back, physical courage, being wittily horrid to your brothers etc).


Attempting to be a BBQ chef 1979

Impossible now to think of a girl today reading novels from 1917, and feeling that same kinship with a childhood a hundred years ago or the aspirations of womanhood being approximately the same.

In my one all short lifespan so far, so much has changed for girls that we take it much for granted that of course women work, and of course they deserve (legally and morally) equal pay. For my mother – who didn’t drive – and for her British contemporaries, who had to leave the service of the foreign office when they married until the 1970s (to ensure that there were enough jobs for the men who needed them more) today would be unrecognisable. The women, like my mum in her 1970s labour-saving kitchen, would still have had to ask a father or a husband to agree to opening a bank account in her name.

This summer, Mum would be 91 if she had lived. And the idea of me, at nearly 50, a spinster, unmarried, child-less or child-free, earning my own living, living on my own, with a room of my own, might perhaps still be to her quite shocking. And some days, to me too. I grew up in her world, and much of that first decade forms me still.

Women won the vote in Appenzell just a few years before I took this photo

Yet somehow between my early heroines, between Bella, George, Pippi, Nancy, Heidi and Katy, and my brothers and father too, I got the message that it was the striving and going out into the world that also counted for a lot. I’m not sure that in the end I took quite enough notice of the being good and kind bit. And as I grew older, my literary heroines grew up too, to Jo in Little Women and the American girl detective Nancy Drew, though I only found out about her when I went to the American school in Stockholm around the age of 9.

Those earlier years of Bella, though, remain special. Her stories and my precious, ever-expanding bookshelf somehow mingle with the violence of the news on TV during the Troubles, even living in the comfortable peace of Bangor, all so new to my seven year old self that they’re seared, engraved on my memory, perhaps in carbon, the toughest layer of them all.

They still blur together somehow, those years of being seven, eight and nine, into one long adventurous summer.  We’d arrived in Northern Ireland in the early 70s. On our first or second night at our hotel, the Europa in Belfast, the most bombed hotel in Europe, there was of course a bomb scare.

My parents were downstairs at dinner, and I was long since in bed asleep, dreaming of the ferry ride we’d had across the waters. Gretli, our Swiss au pair girl, had barely if ever left her gentle valley farm in Unterwasser. She can’t have been older than 18. She had no idea what to do when the siren wailed, but the notices on the wall told us clearly that in the event of a bomb, we were to leave the building. Preferably via the lift, rather than in small bodily pieces hurled out of the shattering glass, though that was never spelled out quite so graphically on the note.

The view from an Unterwasser farm 


Gretli walked me sleepily in my pyjamas and slippers down the stairs and out of the lobby door, allowing me to bring Muschi too, as my teddy was not to be left on his own.

Outside, it was raining heavily. A car stopped beside us. In the dark, we could just make out three men inside. One leaned out and in the broadest of Belfast accents, tapped his cigarette ash over the side, and asked if we girls wanted a ride, and some shelter from the rain?

My seven year old self had a nagging sense this wasn’t a good idea (don’t talk to strangers, and don’t get in their car, my mother always told me), but Gretli from the Swiss valleys, where no door was ever locked, thought it sounded an eminently sensible idea.

For the next half hour, we stayed blissfully warm and dry in the back of the car as the three middle aged men from Belfast whom we had never met before squeezed up and let us in, (in a country where Gretli barely spoke the language). They drove us around the car park until the all-clear was sounded, courteously drove us back to the entrance, deposited us in the dry, and we were finally reunited with my by now completely frantic parents.

Gretli stayed with us for many years after that, but common sense was not initially her greatest forte. That was her Gugelhopf, Christmas biscuits and Linzertorte, her sewing, her ability to knit dolls’ dresses and her immense sense of fun.

In that long hot and blissful summer of drought in 1976, where the sun never ceased to shine, my best friend and next door neighbour Anne Farlow and I play on our orange space hoppers. Or rather, hers is large and bright – painted with a happy face, as though it’s had a good trip on LSD.  Secretly, I’ve always been rather envious of it. But I tell myself that mine is special, too, even if really I prefer hers. Mine is a big red Womble, Orinoco I think, and he bounces high and hard.

The three-foot high red brick walls that surround our new-build houses become our “Bella Barlow the gymnast’s bars” for the season. Anne’s arabesques are more graceful than mine, and she never falls. She is surefooted as a tortoiseshell cat. Her back-bends and cartwheels are things of beauty, like fireworks ricocheting across the lawn, her wiry frame and skinny legs more suited to emulating Bella’s brilliance than my own rather more rotund frame.

I learned more from Anne as I grew up that summer than anyone else. Together, we drew architect’s plans for the buildings that we would create for the cities of the future. On quieter days, we’d draw and scale up the houses and the rooms that we wanted to live in when we grew up and had children of our own.

On sunny days we were gymnasts, or sometimes vandals on space hoppers. Occasionally, we joined the neighbouring children to play IRA and British soldiers. Though I felt I was always unfairly typecast because of my accent.

And it was Anne who patiently explained to me what I’d seen on the news, when I asked her why women with shaven heads were being paraded through the streets, with a voice-over that spoke of tarring and feathering. What on earth was that?

She explained, in words I could understand, that this was a form of punishment carried out by the IRA, mainly against women accused of having relationships with the RUC or even British soldiers. They’d have their heads shaved before being dragged to a lamppost, tied up and hot tar poured on their heads. Then, presumably in an agony of humiliation and pain, they’d have feathers dumped over them that would stick to the tar for several days to remind them and their community of their ‘crime’.

The bombings and shootings on the news were the constant punctuation to our days in the province. Random, sudden death seemed to happen somewhere known or near enough to us so often that we took it quite for granted that of course the soldiers searched you as you went into a shop, and naturally your dad would check under the car for a bomb every day, just in case.

I gathered from the TV and the radio that Stormont was somewhere important. And from my own experience that the big loud man called Ian Paisley, whom I had seen on the telly and bumped into quite literally by the side of one of those strange parades through the streets that involved bands and much shouting, towered scarily over every adult and was perfectly charming when I spilled my fizzy drink over him by mistake.

During the less eventful daytimes, Anne and I – and many other friends – attended Ballyholme Primary School, a wonderful place run by principal Derek Cummings and our form teacher, Avril Kernaghan. How do those names still spring so easily to mind, when so many other later ones have fled?

Their teaching ensured that we left primary school with our love of books intact, an ability to add up and subtract (which sadly atrophied in later years) and a healthy body, after walking to school and back on our own each day, with no need of Gretli or a parent to collect, so paradoxically safe was it in sunny Bangor for a child.

A Swiss idyll  

It was those years, it occurs to me with more clarity today, that showed me that a girl could be anything she wanted to be, do anything she set her mind on. Lithe, green-eyed, beautiful Anne continues to be driven, happy and successful to this very day, a polymath whose talents combine work and home and family, while my own monomania enabled me mainly to accommodate work, millions of words, and a copious amount of cigarettes.

The real Anne, along with Anne of Green Gables, Katy Carr and Bella Barlow and many other later friends in real life and in books, form a flow around me, the waters and oceans of friendship that have ebbed and flowed and smoothed the edges of my rough childhood self, polishing and burnishing me until I am like the smallest and smoothest of the seaside pebbles that I collected from the beach near the Inn at Crawfordsburn on one of those  gently rainy northern Irish days.

Popacatapetl January 17th 2017 

But as the day here turns to dusk, and Popacatapetl dons his majestic evening pomp, I wonder what it was in that childhood that made me want cover wars, to report news, to tell others what it was that people elsewhere did, however awful sometimes, and try to find out and explain why. Why hate can motivate us more than love. How unfairness rankles with the human race. Why difference drives us apart. And why remembering the past can be both good and bad.

Did living through the Troubles – if only for a while – make me want to go out into that big wide world to seek and find out why? And not to be turned back, or kept indoors as the spirit of the house, doing the endless housework and the tough, daily business of loving and caring for the family, as in What Katy Did. Or indeed my mother did.

Helmand 2007 or 2008 

And how is it, I ponder, that after these last 25 oh-so-busy years out in that world of trouble, chasing after all those stories in so many places that were not my own, I end up here, in the blank white of a quiet room listening to the whirr of the fan, as a semi- (and I hope temporary) invalid?

Is this cool plain room to be the rest of my book or merely a chapter in between? Is this the bit where Bella and Katy are laid low, their bodies but not their spirit broken, before they’re allowed to rise again in triumph?

With a British patrol in Kandahar province, Afghanistan

I just don’t know. But we all know that Virginia Woolf was right about the need for a room of one’s own to write. And peace and quiet.

And of course, no mobile phones, no internet, and absolutely no Facebook or Twitter. Though I have the feeling that were they still alive today, the Bloomsbury Set would have taken to Twitter like a dinnerpartyful of Islingtonians today. And Facebook too, or perhaps Two-facedbook.

I moved to Bloomsbury WC1 on the day that Osama Bin Laden blew up the Twin towers: September 11th 2001. We moved ostensibly because my then-boyfriend Peter wished to live near work. But for me, it was almost as much in the hope of chasing after a romantic ideal of all the literature and my favourite books created there.

“A woman must have money and a room of her own if she is to write fiction”. Virginia was right. Even to write fact, or the demi-fiction of memory. All anyone, man or woman, needs to write is a room of one’s own. And no interruptions from the man from Porlock or his modern equivalent, the internet repair man from MexTel who is here knocking at the door to mend my wi-fi.

I must put on my blue face-mask, and let the internet man in, before I return to the sofa to make my peace with neutropenia, as Joy starts to cook supper quietly in the background.

Because of course, that’s the other thing that Virginia didn’t really mention but that any writer really needs: a cleaner called Katty, or a housekeeper, a nurse called Joy, or a wife or perhaps just staff…

Inter-railing in Rome 1984 



Puebla Day + 2 of plumbing and neutrophils


The Puebla plumbing has been holding up well for the past two weeks. Although a noxious almost volcanic smell still greets me first thing every morning when I open the bathroom door, rather as it did in the BBC house in Kabul and indeed in Baghdad.

Thomas Crapper, Alexander Cummings and Sir Joseph Bazalgette, that secular trinity of the water closet and the public sewer, really should have travelled more widely to spread the word of bog.

Through all my travels, it has struck me forcibly and olefactorily that the real difference between the haves and the have-nots of this world is in the possession of working indoor plumbing.

Never mind the Big Mac index, what of the having to Crap in a Field, Lake or a River index? For us, slumming it on the occasional camping tour or music festival, the occasional outdoor relief is a bit of a treat, one that might even bring you closer to nature, as well as helping you avoid the overflowing toxic chemical loos.

And once you are lucky enough to be the proud possessor of indoor plumbing, the quality thereof is another key yet often unspoken marker of progress (in which Japan is currently world-beating on the bottom-cherishing front, or perhaps back.)

The BBC house in Albania, near the border with Kosovo, during the war in 1999 sported a very jaunty white porcelain lavatory bowl. I was delighted to note its existence on our arrival, as the loo at the hotel I had stayed in on the way in from Tirana kept me up all night with a strange boggy gurgling that never ceased.

It may have been an alien life form’s attempt to communicate its arrival in Albania, but it had chosen the wrong hotel guest to tell, and doubtless went back to its spaceship to report no intelligent life on planet earth, and that the plumbing was pretty patchy in parts.

The only problem at the new BBC house in Kukës that spring of 1999 was that when this particular BBC loo was flushed, the force drove everything upwards and towards the sitter, rather than away.

Likewise, an eccentric local plumber (or perhaps a very well-trained but sadistic local plumber) had somehow cross-connected the water supply for the shower with the electricity, so that every morning, the shower woke you up with an electric shock when you turned on the tap.

As most days were spent filming at the nearby refugee camp, where thousands of the Kosovo Albanian families driven out of their home were housed in bleak rows of tents amid the red faecal dust of Kukës, none of us living at the BBC house nearby felt we had much to complain about. We were warm, housed, clothed and fed. What were a few electric shocks upon waking? It made the inevitable Today programme early two way that much livelier.

I’d already forgiven the US Air Force on that same trip for almost killing us as we filmed on an Albanian hillside at exactly the time that NATO decided to put B-52 Stratofortress bombers into action to strike areas on the border with Kosovo. Unfortunately, the little stick figures that the pilot in the glorious blue skies above appeared to be aiming at were a bunch of journalists from the UK and US rather than Serbian troops.

Luckily, the pilot’s payload – perhaps of Mk 82 bombs weighing some 225 kilos each – ended up hitting the ground well below us, successfully and very expensively obliterating a good few of the late Stalinist dictator Enver Hoxha’s bizarre defensive bunkers.

The country Hoxha managed to all but bankrupt with his policies could boast more than 750,000 of these small concrete toadstools (for a population of around three million people, though nothing much in the way of shops or an actual economy).

The pilot’s direct hit on the toadstools looked like the military equivalent of nuking Noddyland. And it was, it turned out, an accident. Albania and Kosovo clearly looked very close on his map. Or maybe the pilot’s aerial satnav had been telling him to turn around when possible, and he just wouldn’t listen.

Nonetheless, as the plane circled in the skies to take anther look at what was below (and clearly the hastily-scrawled BBC sign in marker pen on my helmet might not have been legible from that distance), I spent a good half hour cowering underneath the then ITN correspondent Bill Neely, always a good man in a tight spot.

Here at Inspiralita, there are no electric shocks from the shower, nor any B52s, and even Donald Trump has not yet built his fabled wall with Mexico. Perhaps he could instead put US labour to work spearheading a global plumbing revolution instead. Now that would be an international legacy to be proud of. It could even have its own slogan: Dump With Trump.

To deal with the smell, I keep my bathroom window open all night, just in case that helps, but somehow the miasma of gas simply rises all day and through the night from the four floors below before it ends up with me on the fifth. And perhaps in its spare time (I almost find myself hoping so), it wanders up to plague the 6th and 7th and 8th floors as well.


I’ve got accustomed to the smell now, and it doesn’t bother me too much, apart from on the chemo nausea days, which I think are now behind me. And there have been no further floods or plumbing disasters for which I’m grateful, as my white blood cell count falls precipitously every day, as expected.

Thanks to all the stem cell stimulating done by the drug filgrastim, a week or so ago I apparently boasted a white blood cell count of something approaching 49,000 white blood cells. Rather more than the usual average of 4,500-10,000 white blood cells per microlitre. Now my white blood cells (the lymphocytes) have been depleted to just 2,000.

Likewise, my platelet count is down from 191,000 to 128,000. And my haemoglobin – the molecule in red blood cells that carries oxygen from the lungs to the tissues and returns carbon dioxide back again to the lungs – has gone down from 14.3 to 12.6.

As the kindly biochemist took my blood this morning, I wondered what the tiny red blood cells inside the ruby drops filling his vial must look like, imagining them like miniscule red doughnuts without the hole, or wine gums with a little dip in the middle of each where the manufacturers have had to economise post-Brexit to keep the prices down.

When my white blood cells start to go below 1,000 there’ll be a higher than normal risk of infection for me, as my immune system will be very low indeed.

And the new haematopoietic stem cells released from my bone marrow via my blood and transplanted back to me, which must now (I assume) be buzzing their way around my system, perhaps just don’t know quite yet the different jobs each of them will have to learn to be properly qualified as new white blood cells.

These stem cells are the crème de la crème of cells, though, I’m told. Chosen as the brightest and the best. They can become anything they want in the white blood cell world.

I imagine them a little like earnest medical students, dressed in white coats, following their godlike Professor around the wards of my veins to look more closely at the trail of physical devastation left by their predecessors in my immune system, as they try to find out what it is they should be doing to make me well again.

First do no harm, the Consultant teaches them with a smile, as he takes them further down the crowded, rather narrow corridor.

“And here,” the Consultant – now a Professor White Blood Cell – will tell the eager young stem cells, their notepads at the ready, as he stops at a particularly messy junction, “you can see where the last lot made a real hash of it, attacking her immune system. You, on the other hand, will know not to do that. Won’t you,” and he gives a stern glare over his spectacles.

Silent nods, as the young cells shuffle along to the next ward, trying to decide whether they’d like to become a neutrophil, the immediate response cell that forms 55 – 70% of our white blood cells, and helps to fight bacterial infections. That’s quite a glamorous job, and you probably get to pick up a lot of chicks as you rush to the scene to clear up the latest bacterial strike dressed in your snazzy white uniform.

Mind you, it’s not much of a long-term prospect, and no time to enjoy your date, as each neutrophil lives for less than a day. So you’d have to think up some pretty fast chat-up lines before the bone marrow churns out your replacement. A bit like being a supermodel in the internet age, or leader of UKIP.

And perhaps not quite as glamorous. The neutrophils are the ones that go to attack the bacteria at the site of a wound, their corpses left behind on an infected wound as pus.

Perhaps, then, the Consultant professor says, the very best of our stem cell students might like to specialise as the 20 – 30 per cent of white blood cells that are lymphocytes (our B and T cells, and our NK natural killer cells) to make antibodies to fight infections. It probably attracts better pay, and maybe the hours are more predictable, though the consequences if you muck up the job can be quite severe.

Some of those may want to travel to the thymus and mature into T cells, while others (most likely the introverts) will decide to stay quietly in the bone marrow and develop into B cells.

The Consultant professor carries on further in the same vein, pushing past a gaggle of blood cell management consultants, paid a lot more than he is, doing time and motion surveys as they try to figure out how best they can shave another 10 per cent from this year’s vein budget without the medical staff or patients bleeding too much.

He looks at them with irritation, says nothing, and continues. “The bigger and more extrovert stem cells amongst you might want to think about becoming a monocyte,” the Consultant Professor might suggest.

When certain germs enter the body, they quickly rush to the site for attack – again, a good and decent job if only you can make sure you’re attacking the right thing. Usually they’re the fatter cells that make up some 2 – 8% of the circulating white blood cells, and can work to engulf large particles and pathogens.

It’s almost the end of the ward round in the vein. The stem cell students who haven’t yet heard a job that interests them prick up their ears as the Professor continues.

“So…If you’re a stem cell with an interest in allergies, then becoming a basophil is for you. It’s a specialised job for less than 1% of circulating WBCs. They accumulate in damaged tissue and release histamine, which dilates blood vessels, and heparin, which prevents blood clotting, so a vital and sometimes overlooked role,” he finishes with satisfaction, as it’s almost time for lunch followed by an afternoon at his private Harley Street clinic.

It’s the only way he can afford to pay off his second ex-wife, the young stem cell he should never have married, but her curvaceous lymphocyte looks and sense of humoral immunity were irresistible from their very first date.

And then he remembers. “Last but not least, if you don’t pass the exams tonight for all the above, and you are perhaps feeling a little more juvenile, you – young stem cell at the back, are you listening?” he growls, “You could always think about being an eosinophil, making up just 2 to 4 per cent of the WBC, because then you can have all the fun of excreting toxic compounds against parasites that are too large to engulf. So probably more one for the boys.”

And the stem cells peel off to their next class. As you can see, blood has begun to obsess me a little, just as global plumbing or the lack of it did throughout my years of travelling for work, although I can’t guarantee that any (let alone all) of the above is medically correct, rather than the produce of an over-active imagination kept in quarantine for the second day.

I am, after all a patient with access to Dr Google, and not a medical student, though I am pretty sure about that bit about the Harley Street Clinic and the second wife.

Me, Popocatapetl and Joy 

Blood has always mattered. We used to talk of ‘bad blood’ that ran in a family. My cousin, too, has MS. Do we have bad blood? Or simply blood and an immune system that can’t cope with a specific type of attack, thanks to a combination of genes, exposure and environment? My T or B cells were certainly not lazier than most – the opposite. They have been very busy indeed attacking me. And how about noble blood? At night, I watch The Crown on Netflix – or at least did before the internet went down tonight – and wonder at the magic of monarchy, sustained and passed on by blood, but in some earlier generations cursed and killed too young by that same substance.

But what about this miraculous stem cell treatment – blood that can cure? How can a stem cell transplant potentially do so much to help so many auto-immune diseases, when we still apparently think of MS chiefly as a disorder of the immune system involving the central nervous system, rather less as one of the blood – though more and more auto-immune disease is being treated successfully with aHSCT, with fewer side effects or risk of death than in the earlier years.

I don’t know if it’s working for me yet, as I slide gently into neutropenia, that low number of neutrophils in the blood that can make you more prone to infection. My main concern since my first and now my last bout of chemo, is not the Mexican plumbing but my own. Those of gentle stomach eating their breakfast, please look away now.

The problem after chemo here seems much more likely to be constipation than anything else. And it’s a problem that many with MS are inclined towards anyway, as the digestion slows with the disease.

With enormous relish on the very first day of chemo, my nurse Joy produces an evil-tasting liquid called Metamusil, made of psyllium husks. At first it looks like a simple orange powder in the bottom of glass, into which Joy pours cold water. So on that first day, I was caught out. I dallied and ate my porridge slowly. And by the time I got around to drinking the Metamusil, it had morphed and swelled into a glass full of large, unruly and  exceptionally evil orange jellyfish. It was undrinkable.

On the second day, I knew to swallow the concoction straight away. But even Metamusil was not enough to combat the constipating power of chemotherapy and the neutropenic diet of ‘safe food’ delivered today.

And now, I am stuck in the flat – unlike last week, when Joy and I were able to wander the supermarket for hours looking for prunes, figs, walnuts, dates, almonds, kiwi fruit, more porridge, pineapple, brown rice, even popcorn – anything with a husk or roughage that might encourage some action downstairs.

Days passed. More chemo, and more nausea – my digestive tract was working overtime at the top, getting rid of almost everything I ate on chemo days. But downstairs, despite eating pretty normally on all the other days, came nothing.

It reminded me all too much of another trip almost exactly a decade ago, when feeling a little jaded in the stomach area after three years of living in Paris, and in need of something to pick me up and perhaps cleanse me from the inside out, I was persuaded by my best friend James to go to the Maharishi Ayurveda spa at Bad Ems in Germany.


Cleverly, he showed me a glossy brochure with a photo of a luxurious hotel, with fluffy towels and robes, and with all the right words for a woman of 39, teetering on the tired edge of 40: revitalising, rejuvenating, reinvigorating. It also mentioned a detox. Hmm. I was not so sure about a detox.

I liked to tox, and I think that for much of my younger life, my liver and kidneys did an absolutely admirable job, considering the challenges. But James’s soft, siren Scottish tones tempted me on. Apparently, the Maharishi Ayurveda spa offered daily full-body massages, with hot oil dribbled over the entire body, rubbed in by two people simultaneously. OK, I was now persuaded.

We both booked straightaway, though I realised as I paid in euros, a currency I still hadn’t quite got my head around by 2006, that I could also have bought a new bicycle for my daily Paris commute with the same money and got fitter that way instead. And had a bicycle to show for it. But we live and learn.

The name Maharishi rang a vague bell, but I could not think why. I looked again at the brochure, and noticed that it had a picture of the man himself – the Maharishi Mahesh Yogi – an Indian with a serene, other-worldly expression and a long white beard.

I began to suspect that all might not be quite what I expected when the health check questionnaire arrived from the spa a few days later. It seemed utterly and solely fixated on matters of a deeply personal nature – namely my digestion, and more specifically, the exit. How often did I go? What did it look like? Colour? Consistency?


I had already discovered several years before that many (most often elderly) Germans were obsessed with all things produced from the posterior when I worked as an auxiliary geriatric nurse in Munich in my early 20s, so it didn’t entirely come as a surprise.

That was back in the mists of 1986 or 1987 or even 1988, I think, as my memory is terrible on dates without my old diaries to which to refer. On the ward round on day one, at 5am, I discovered to my horror why German toilets had ledges: so that each individual production could be examined in detail.

“Nurse, nurse!” would come the cry from Frau Lindner or Herr Ackermann in the morning, as I tried to distribute the bread rolls. Clutching me with a bony hand, they’d drag me into their bathroom, usually still warm with that special morning miasma.

“Come and look at what I’ve produced! Do you think it looks normal?” and an anxious look. Most of the time, I could reassure them that, 75 patients later on the ward round, it was indeed and absolutely entirely normal.


By the end of my several-month stint at the Bavarian Red Cross Home Kieferngarten, I did think that there should be a book or a chart to help the aspiring junior nurse on the faecal matter front, and even contemplated writing and illustrating one myself. But then I got side-tracked into journalism, and writing of a very slightly different nature.

The job at Kieferngarten was the very last one in my life (I think) that I allowed my darling Dad to broker for me. He was working at the International Red Cross in London by then, and has always had a wicked sense of humour. When he promised he’d help me get another job to improve my German (he’s also an optimist), I little suspected it would be geriatric nurse.

Dad in 1985, a very good year 

Flash forward to 2006 and the spa at Bad Ems. It was a rainy, bleak January crawling into February, that grim time of the year when everyone really does need something to cheer them up. Like a detox, or a new immune system. So despite some qualms, James and I arrived at the solid 18th Century spa building in Bad Ems, on the banks of the River Lahn, that constituted the Mahareshi’s ayurvedic emporium.

In her spotlessly white consulting room, the German doctor gripped me firmly by the arm and fixed me with a steely eye. The decaying nuclear sarcophagus at the Chernobyl reactor, it seemed, had nothing on the toxins I was harbouring.

This was no ordinary diagnosis but an ayurvedic diagnosis, taken from the pulse and consisting of a vocabulary entirely new to me.

“Your doshas are out of alignment,” she said. “Your kapha is excessive, and as you’re a mixture of pitta and vata, we’re going to need to do a lot of work on rebalancing your doshas.”

She wrote down my treatments, and I could tell that rebalancing my doshas was going to cost me. A lot of dosha.

Yet as the ten days or so rolled by, there was something almost blissful at Bad Ems about surrendering oneself entirely to people in white coats who claimed to know better.

I’d been feeling truly appalling for some time, but the only western diagnosis I could get was clinically isolated syndrome (which I knew could lead to MS, so I didn’t Dr Google it just in case that made it more likely) or chronic fatigue syndrome. The latter seemed about right, as I was permanently exhausted. No amount of sleep seemed to help. So perhaps the Mahareshi’s expensive treatment might just work?

This, after all, was holistic. Their cure for the ills of my flesh was to eat only vegetarian food. No smoking, of course, which I was just about managing. And no meat, no tea, no coffee, no milk, no sugar and above all, no alcohol. Oh, and no sex.

After a few days of all that detoxing I could not even imagine having the energy or desire, even as my dosh depleted and my doshas were (apparently) restored, though I still had no idea how they could tell.

Detox? What detox? 

The ayurvedic treatment plan at Bad Ems was a gradual one. It appeared to consist of several days of deprivation, followed by two days of rice soup, then – several massages later – an explosive grand finale of enemas.

Cocooned indoors, in rooms that smelt of sumptuous oils and scented candles, where soothing Indian music wafted down the corridors, I allowed myself to be slowly seduced by the ayurvedic. Every day, in a warm white dressing gown, I was led down solid marble steps to a gleaming white treatment area.

There, behind doors that creaked heavily shut, two young, long-haired women in white cotton dresses awaited me each afternoon. Silently, they would lead me to a white room, to a wooden bench, where, for hours at a time, soundlessly and wordlessly, they would pour hot oil onto me and gently massage it from head to toe.

The ritual was always the same as the honeyed, spicy sesame smell of the oil mingled with the candles. And whole hours passed in seconds. It was like a dream sequence from the best of any Haruki Murakami novel. It seemed unreal and yet it happened. And barely a word was said.

Only occasionally would the women speak, but when they did, they had the faraway look and the gentle voices of the saved. As my mind drifted, it dawned on me where I had heard of the Maharishi before – in a newspaper piece about the Beatles and their Indian guru… that same serene, white-bearded man.

And then I remembered a general election campaign in Britain a few years back. Maharishi posters featuring a public promise that his devotees would save the world with an act of what the world had been waiting for… yogic flying. So on the appointed day, the sceptical British media turned out to witness this mass levitation.

And after much fanfare, the devotees of the Maharishi turned out for something that resembled not flying but a yogic bounce. In the lotus position. It looked eye-wateringly painful, but it definitely was not flying.

But their pain was nothing to mine when I got the final bill at the end of the week or so of massage and starvation. It turned out to be perhaps the ideal holiday for a hedonistic sadomasochist. The bill was even more eye-watering than the enemas, although they were the one thing that did prove slightly less traumatic than expected.

But as I left the spa with James, via Frankfurt airport, where he would carry on back to Luxembourg while I returned to Paris, I had to admit that I did feel a little better. I was more relaxed. So zen as I checked in that I may even have had the beginnings of that enigmatic Maharishi smile.

I mused on it all as I absent-mindedly sat down at the airport cafe to order a cappuccino with plenty of sugar to go with my frankfurter and coke. And they were so good that I ordered another. And another. And by the time I got on my flight home I was feeling quite normal again.

Tonight, as I ponder neutropenia and my next quiet day in Mexico, wearing my blue face-mask if leaving the flat for the clinic here, I sit with less dosha than ever.

And patchy internet. For some unfathomable reason, the tiny fibre-optic lifeline that connects me to the outside world has gone tonight, with no explanation, leaving me unable to upload photos. Or perhaps this blog, unless I connect to some expensive data roaming.

Just before the internet clicked off with a tiny death rattle tonight, Clinica Ruiz kindly sent me my official receipt for treatment here. This time, compared with Bad Ems, I do think every single solitary peso will be worth it (or $54,500 in US dollars) if their stem cell transplant halts my MS.

And even more so if Joy’s Metamusil can help me tonight as I go to commune once again in hope with the Puebla plumbing.


Puebla Day +1 Success and Failure


This morning, I floss my teeth with vigour as I look out at the volcano, wreathed in a misty smog. If there were a prize for being middle-class, and if this daily ritual of flossing, each tooth surrounded, cossetted individually with purifying dental tape, could ward off sickness, I would win.

A sign at my dentist always makes me laugh. “You don’t have to floss all your teeth. Just the ones you want to keep.” Yet for all my knowledge, and my flossing and my striving, I still got sick, with an illness that spread slowly through my veins and my body until it reached my brain.

I am hoping that scrupulous hygiene this week can ward off any bugs during neutropenia, perhaps one of the riskiest parts of this whole process – when your neutrophils, the white blood cells that fight off attacks, are so low that your body is at its most open to infection from things that your body would normally laugh off.

A doctor who saw me before I left London (not my own sympathetic but part-time GP) was unconvinced when I tried to explain why I was going to Mexico for HSCT, and what I hoped to achieve.

“Stop catastrophizing,” she says, when I explain that I want to stop this disease in its tracks before it is too late.

Then: “You won’t end up in a wheelchair,” she tells me with blithe medical confidence, around one minute in.

But how does she know? I don’t.

And I do know that I am already walking with a stick, because otherwise I fall over in the street. And this doctor knows nothing of me, or the 49 years that make up my life, after a quick scan of the patchy notes on a screen.

The figures suggest that after 25 years of MS, my odds of continuing mobility without a stem cell transplant are not so good. So I can tell within the first few minutes of our allotted ten that this GP and I will not be lifelong friends.

“And isn’t this HSCT treatment a little extreme? It could kill you,” she continued blithely, in ignorance of any actual figures or clue as to what a stem cell transplant for MS entails.

“Now, I must ask you,” as she cocks her head winningly to one side – “what exactly are you doing for your own health?”

I sit silently and look at her, visions of mini Bikini Atoll nuclear explosions in this quiet surgery room playing through my head in black and white. What I really wanted to scream was this:

“I am going to Mexico for a stem cell transplant. Spending tens of thousands of pounds that I don’t have in the bank. Volunteering to have chemo, and be sick as a dog. Worrying my family and friends by going abroad. Having my blood and immune system changed radically and for life in a foreign country by doctors and nurses whose language I don’t speak or understand, muchas gracias, because our health system here won’t offer this to me, despite my years of paying taxes and national insurance since my early twenties, although God knows, I’ve tried.”

But I didn’t. Instead, I said in a tone that tried to dampen down any bitter sarcasm, that I had been drinking green tea, eating my five fruit and vegetables a day and attending yoga classes for the past ten years, as was my birthright as part of the British urban female middle class.

And given up alcohol altogether, and smoking. I was, and had been for several years now, officially a fun-free zone. And I still had MS, which no amount of flossing, vegetables, yoga or green tea had managed to budge, although perhaps they did help fend off greater disability awhile.

The doctor’s eyes lit up. Tick! That’s what it says on the NHS box: advice on lifestyle communicated, written promptly onto the waiting computer screen. The doctor nodded with satisfaction, said she would discuss my case with colleagues, and called for the next patient.

Today, I am a patient now quarantined at the apartment at Inspiralta since my stem cells were returned to me. And after the flossing this morning came the wrapping.

Joy, my nurse, has been gently nagging me about the shower. The one I didn’t want to have while the alien was inside my chest. I promise that I did have a flannel wipe each day that it was in (I am not beyond hope yet) but the thought of dislodging or angering the sleeping serpent PICC line with a shock of water was too grim.

So today, to protect the bandage that’s now in place to shield the tiny scar that remains on my chest, Joy found a plastic bag, which she cut up, and began to plaster gently over the white gauze square. Slowly, and with fierce concentration, she tenderly wrapped up my shoulder and taped on the clear plastic, and finally looked at her work and saw that it was good, knowing she’d wrapped me up as efficiently as any parcel to post me on towards the land of the clean.

As I shower, enjoying the velvety plish of the water on my skin, I hope that beneath, inside my veins, the tiny stem cells now exploring their way through their new home are finding everything to their satisfaction as they start to move in. These young ones are making me tired today. I feel a little like an elderly new mother, exhausted after the joy and the rapid seesaw of emotions of giving birth. I am keenest of all on the idea of sleep and rest, as the raw physical toll of the past few days has made itself felt on the body and the mind.

The stem cells return 

But I can’t help but laugh as I wash, being careful not to get my shoulder too wet. Joy’s eager wrapping had put me in mind of the joyful Berlin summer of 1995, the year that that the plans by the artist Christo and his now late wife Jeanne-Claude finally came to fruition, and they completed their meticulous wrapping of the Reichstag, the German Parliament building, in the reunited German capital.


At first, like many Berliners, I was sceptical and slightly querulous. Moving back to Berlin in 1993, I had taken on the very nature of my adopted city with pride, in my first post abroad as a BBC reporter. The corporation’s German business reporter, no less, which would have come as something of a surprise to my family’s old friend, the wonderfully-named German banker Kurt Kasch.

He had employed me as an intern at the Deutsche Bank during an earlier life in Berlin, back in 1984, when my father was based there as a diplomat and a widower, and I was a teenager fresh out of boarding school.


I had just finished my A levels, and was eager – in theory – to learn proper German and the dark arts of banking and finance. Or at least my Dad was very keen for me to do so. Where better than here in West Berlin, just down the road from where we lived in splendour in Ulmenallee, in the 1890s architectural solidity of the Prussian bourgeoisie.

But at 17, I was not so eager to start work at 7am. Nor able to arrive at work, it seemed, without a crashing hangover after yet another interesting evening in a darkened bar or club in one of the edgier areas downtown. Officially, I was at my best friend in Berlin Cathy Wigmore’s house. And officially, she was at mine.

Turning 17 with Cathy 

It didn’t help my nascent career in banking. For every afternoon at 4pm at my bank branch in the British Sector of Berlin, on Theodor-Heuss-Platz, after I’d served and changed pounds into deutschmarks for another British soldier or his family, the cry would go up: “Storno!”

Annul or cancel that transaction. “Frau Wyatt, please come here…”

In those pre-computer times, I always got the exchange rate the wrong way around, usually in the customer’s favour. Even kindly Herr Jelinek, the paternal white-haired cashier, was getting rather tired of this, and could only cover up for me for so long.

So the bank found the ideal bureaucratic solution. They sent me to head office, on Otto-Suhr-Allee, gave me a typewriter and a telephone, and absolutely nothing to do.

Or at least nothing that I can remember now. Sitting in the peaceful little annexe outside Kurt Kasch’s office, I wrote reams of bad poetry, limericks and short stories, and an annotated list numbering the appeal and the downsides of every boy I knew. The list was growing satisfactorily, after my seven long years at an all girls convent boarding school. Ten names in all by then, rated by (apparent) intelligence, looks, ability to flirt and at the end – with a hopeful query – has car?

Photography 1985 before the internet

I found the list while clearing out my flat the other week. I think I’d kept it to be shared and giggled over with the mischievous Cathy when we were all grown up, and she the responsible working mother of three young children in our later years. I hope I did show it to her one last time before she died too young of cancer in June 2015. She never did reach 50. But even in death, she still lights up my memory as the girl with the greatest spark of life I have ever known.


Cathy 1986

On some days that winter at the Deutsche Bank, I even tried in a desultory fashion to master German grammar, judging from my notebooks from the time. But it continued to evade me, just as Manfred von Richthofen, the Red Baron in his Fokker tri-plane in the First World War, long outwitted even the skills of the most dogged pilots of the nascent RAF.

The RAF was still based in the Berlin of the 1980s, part of the four power agreement, mostly at RAF Gatow, while Cathy’s dashing father Wing Commander Bruce did something terribly important to do with Air.

Cathy 1985

Everyone we knew in the Berlin of those blissful Cold War days did something awfully important to stop the Soviets invading. Including my and Cathy’s dad. Even the young subalterns at Spandau barracks and elsewhere did their bit, standing ready every day to defend, albeit on some days it was a slightly more hungover slouch.

East Berlin seen from West Berlin 1985


From the 14th/20th Kings Royal Hussars to the Queen’s Own Hussars exercising and endlessly servicing their tanks, or the junior officers of the Devon and Dorsets cleaning and shining their Sam Browne belts and their weapons, all appeared ready and eager to fight if the Reds did try something funny over the Berlin Wall. As long as the young men weren’t at that point singing their lusty lungs out in the Irish Harp downtown, always a popular venue with the Brits.

The subalterns’ merits as defenders of our freedom, and potential attackers of our virtue (aka possible boyfriends), were our main concerns that year. They were debated often and eagerly by Cathy and myself, both former convent girls, sometimes with advice from her older brother Andy, then a worldly 18-year-old sorting LPs at the British Forces Broadcasting Service library. My father always said he’d end up either very rich or in prison, or maybe even both.

Back at the bank, I may have tried to translate some German bank documents once or twice at the behest of my new boss, but soon even that dribble of documents dried up. I had gone too far.

Inevitably one day, Kurt Kasch called me in to his office and looked me straight in the eye. “Frau Wyatt, it is clear that banking is not for you,” he said. “I’m afraid we cannot keep you here at the Deutsche Bank.”

For me, the bank was over. My cheeks burned red with shame. I’d let my father down, as well as my then new, soon to be stepmother, Wendy, now affectionately known as WSM, short for Wicked Step-Mother, whom I’d been so determined to impress.

And yet, inside my heart like a furnace, a rebellious pilot flame of joy lit up and exploded with glee. Finally, I was free! Free at last after three or four months ruled by the ghastly tick tock of the clock, doing something I was no good at, in an office as silent and final as the grave, when ahead of me could lie a glorious adolescent Berlin summer full of exciting possibility.

I’d secretly been scouting other jobs that I might be able to do, as I had a sneaking suspicion that the end might be nigh for me at the Deutsche Bank. It became obvious the day that I was unexpectedly taken (as a very special treat) to visit the Berlin Stock Exchange to find out how it worked. I still remember it in all its glory, but what sticks in my mind the most are the loos. So hung-over was I that day that I spent much of it there, failing to impress my latest boss.

Berlin Wall graffiti seen from West Berlin 1985

That spring in Berlin, I’d been much taken with the idea of radio. On the airwaves across all four military sectors of the city, the radio stations competed for friends and listeners and influence across East and West, with Elvis and Levi’s blue jeans far more potent weapons against Communism than any tank. In West Berlin, a friend of mine Stephanie worked as an intern at AFN, the American Forces Network in the Gruenewald near the US PX postal exchange and shops in the American Sector of Berlin.

Stephanie didn’t have to go to work very early, nor ever seem to do that much at all, which appealed to the adolescent me. Best of all, there was an endless supply of exotica in the AFN kitchen, such as the hot-dogs and popcorn ready to be reheated in a magical machine. They called it a microwave oven.


It was thanks to the magic of Wendy, my WSM-to-be, that my father’s explosion of rage was not worse that day when I went home to tell him of my sacking by the Deutsche Bank.

Work in radio instead? RADIO? And a splutter, the click of another cigarette lit, and the exasperated shaking of the paternal head behind a Times newspaper as he sat in his favourite chair.

Radio? That’s not a career, he muttered.

But the pictures are better on the radio…

But patiently, slowly, Wendy persuaded him that perhaps it might not be so bad after all. And that perhaps adding up or rather subtracting money at a bank was not really my thing, though clearly many later global bankers had flourished with similar skills to mine.

And reader, a mere week or so later, I did go to AFN as an intern. And they were wonderful. I didn’t do much there, but I helped research and collate the local news and the weather. And do voiceovers for summer specials, and sometimes even a little voiced introduction ahead of the DJ’s spiel. In more advanced months, I was allowed to spin the spools on a videotape editing machine to cut out the ads from a wondrous informative thing called the CNN news feed before it could be rebroadcast on US Forces TV.

New Romantic. It was the fashion then.


All in all, 1985 was a very good year. Out of my greatest humiliation at the bank, I’d found a job I loved. Even if it paid peanuts, and I had to supplement my income by working as the world’s most inefficient gardener for the British Military Government, and later as an employment clerk, sorting endless life-sappingly pointless files noting down every time corporal x took a course, or he and his family moved to housing block y. For me, Cathy, Andy and Stephanie to be young in Berlin in that year was very heaven.

Fast forward on that videotape machine to the Berlin of a decade later, the year I turned 28, and Christo’s wrapping of the Reichstag: a building that had stood for German democracy, in success and deepest failure. Built in 1894, burned in 1933, and almost destroyed in 1945, by Russian forces in the Battle for Berlin, their graffiti (mainly ‘Igor woz ‘ere’ in Cyrillic) later kept visibly on the walls by Norman Foster as he built it afresh for the new reunited German democracy, the building’s power – formidable though it still was – seemed old and spent in 1995.

Nonetheless, that April and May, we filmed and recorded the preparations for the BBC and clambered onto the Reichstag roof, in its then flatter iteration, to watch as burly Berliner work-men threw tough silvery hessian fabric over each and every nook.

Suddenly, one day, like Christmas morning in June, Berliners were invited to admire what had happened in their midst. Instead of a dour, gruff Teutonic slab, a magical silver waterfall of a building stood on that same site: the Wrapped Reichstag. We were indeed rapt, and the city came to celebrate and play for two magical weeks, on the then open land so close to the scars of No Man’s Land left by the snaking trail of the Berlin Wall.

Wrapped Reichstag Berlin 1995

Once again but quite differently, joyously, the Reichstag was fragile, its garb impermanent. A palimpsest of wonder; layer upon layer it gave its new meanings afresh. It was the perfect metaphor for Germany itself as East and West reunited: still in the process of becoming, not quite sure what it yet might be or mean for the Europe and the Germany of our times. We’re still finding out today.

The silvery fabric, shaped by the blue ropes that wrapped this idiosyncratic gift from Christo to the nation, somehow revealed the very essence of the Reichstag beneath, while shrouding it in magic every day, at sunrise and at sunset, each reflected in its playful lustrous wrapping. And we knew in those weeks that we’d never really looked at it properly before, or seen it truly, before Christo revealed it to us anew.


I feel a little like that today about my own wrapped body, though the plastic for the shower has now come off. I have no idea what this body will become, because it’s still in the process of becoming, of being shaped anew.

The stem cell workmen and women of my inner veins are only just beginning. And in the next few weeks and months, they’ll still be fragile, adolescent, unsure of who they are and what they want to do in life.

And even later on, my body will still bear the scars on my brain that MS has caused it through the years. Though perhaps like the ever-changing ground around the Berlin Wall, it may in the decades to come be harder to see those marks or feel the damage done.


It’s sunset now in Puebla. Today I had meant to tell the story of Popocatapetl, and the legend of his life and loves, as sent to me by a friend. But I got distracted, as a toddler does,  by all the wrapping. And now it’s getting late, and like Scheherazade in the One Thousand and One Nights, I must sleep. The volcano can wait until another day.

Like the Reichstag of 1995, I have been well-wrapped today, albeit with less spectacular results. I am at least clean, but my glands are swollen, and I’m tired. Soon I may slip into neutropenia and a more somnolent week. So I must go now, for I have to keep flossing my teeth.

Puebla Day 0: A rebirth

Sunset over Popacatapetl on stem cell transplant day


Tonight, I stood on the roof terrace and watched the most spectacular sunset I have ever seen, as the Mexican sun turned silver clouds into pure gold, and the sky deepened to the darkest purple over a sleeping Popocatapetl.

And I wept. Wept with an impossible-to-quell happiness that welled up suddenly from somewhere so deep inside me that I couldn’t tell you where it began nor whether it might ever end.  My heart was so full of joy that it simply overflowed, and I had not a single tissue to hand.

The real Joy, my nurse, stood quietly next to me, looking out at the volcano, either too tactful, or too entranced with the view herself to notice.


The sunset over Puebla and the mountains that cradle this city reminded me vividly of a painting at the Tate Gallery that mesmerized me as a child. It was called “The Plains of Heaven”, painted by John Martin in 1851 – 1853 (though I also loved “His Great Day of Wrath”, apocalyptic enough to thrill any child’s grisly heart).

I could stand in front of The Plains of Heaven for hours, imagining the warmth of that  azure lake, and the craggy mountain paths, wondering what might lie beyond in this heavenly place, just a little further out of frame.

Though Martin’s work was later dismissed as populism, it was precisely the melodrama and the endless possibilities of losing yourself in those vistas that attracted me. Rather like choosing to watch a film by Douglas Sirk or Pedro Almodovar, where half the pleasure is in bringing your hanky in advance because you know you’ll be in tears by the end.

For me as a child, there was a sense that you could – if you wanted to enough – walk into John Martin’s painting, and go anywhere in that heavenly plain once you had managed to pass quickly and politely by the soppy swan-maidens, and push further into the silent solitude of the mountains beyond.

It was the same sense that I had when I first read the Chronicles of Narnia, by C S Lewis, when I was seven. His stories confirmed everything I’d ever imagined of a whole other land that must be out there, peopled by kindly speaking lions, helpful fauns and generous dwarves, not to mention the chance to prove yourself a heroine like Lucy, or indeed a coward like Edmund, when tested to your limits – if only you could first find exactly the right wardrobe door to walk through into the magic kingdom.

Tonight, out of the blue, that was exactly how I felt. Suddenly, a door had been opened, and there stood Narnia in front of me. Not the winter version, but the Narnia after Aslan sacrificed himself, melting the eternal snows and unleashing an unexpected summer, in a kingdom of the healthy where all may be well again one day.

Heaven, perhaps, but on this earth, here and now. Because today I was granted a second chance of life.


Whether you credit the genius and generosity of God or of science or mankind, I received my stem cells back just after 1 o’clock today in an unremarkable small blue and white room on the ground floor of Clinica Ruiz, to the soupy accompaniment of middle of the road rock playing gently in the background.


I was feeling rather more Hallelujah Chorus from Handel’s Messiah, but apparently not even $55,000 USD can buy you the appropriate soundtrack to your stem cell transplant, though I may yet suggest it.

Music notwithstanding, every single drop of that vigorous ruby fluid coming back home into my veins felt like a miracle.


Only the inconvenience of being hooked up to the immovable plastic tubes by the PICC line still firmly entrenched in my chest managed to stop me hugging Martin Ojeda, the smiling biochemist in charge of this rebirth, as he quickly and expertly connected up one very extraordinary ordinary medical plastic bag containing my new life and health: 191 million stem cells dawdling their way one by one back into my veins, filling them like welcome drops of rain on parched land.


At that moment, I thought of my wonderful late colleague Brian Hanrahan, who died of cancer far too young six years ago. Reporting on the Falklands War in 1982, he couldn’t reveal how many fighter jets the British had. So he said he’d counted them all out and he’d counted them all back in. A brilliant, elegant way to get around the military censors, and make clear those pilots were all safe.

I didn’t count my stem cells back in, but I did savour every second, because what was also filling my veins in that simple room was hope.


Then the young neatly-bearded haematologist, Manuel Priesca, who works with the earnestness and skill of a high priest of the blood, combined with enviably toned muscles, came in to take away the PICC line, a moment of relief after four days of living with this alien attached. I know many others endure a PICC line for far longer, but I’m squeamish.

Would it hurt? I asked nervously. Yes, said Joy, watching protectively from the end of the bed. But only a little. And not for very long. And she was right. It did hurt – a little – but not much, and only for a matter of minutes, not more.

But it was the weirdest feeling. First I could sense and hear the snip of the three stitches coming out of my chest. No pain yet. Brace. And then the novel sensation of around 20cm of thin tubing being pulled gently out of my chest from the vein just near my heart.

I couldn’t bear to look, but I could feel every single centimetre slithering out, like a tiny helpful serpent leaving my body after its four-day sojourn there. I did wonder briefly whether the Mexican feathered serpent god Quetzalcoatl might be watching nearby.

Then, just as suddenly, it was done. The moment I had waited for and worried about for so many months was over. I walked back into the waiting room, the last of the five stem cell sisters to be reborn, and a cheer went up from our group, as it did for each of us as our new stem-selves emerged.

And with the return of those stem cells came a sudden quiet sense of gratitude such as I have rarely felt before. It took me tonight after that sunset to a quiet, empty chapel to give thanks with all my heart.

A whole heavenly vista of life’s possibilities has opened up again, after years of dwindling horizons in a life diminished by a fog that never lifted, and an ever-deepening heaviness that hung like chains around each limb.


At this stage, I still don’t know if this stem cell transplant will work to halt the progression of my MS. Nobody does – until it either does or it doesn’t, up to two years or so down the line.

But already I can feel the fog within my brain is lifting. I am less stiff. And my legs feel less heavy tonight. I positively strode to the apartment from Tony’s van, barely needing to use my cane for balance, and although one eye is still blurry, the other is not.

Those changes had already begun after the fourth and final chemo session, so I have a feeling that my chances after HSCT are good.

According to the published figures by Clinica Ruiz, half of those who have had a stem cell transplant for MS here in Puebla have halted the progression of their disease. That would be miracle enough for me.

For another quarter of the MS patients here, the results have been wondrous, reversing most if not all of their symptoms, in what some might well term a cure. And for the other quarter, it has cost a month of their lives and tens of thousands of dollars to apparently little effect.

Even if that latter proves the case for me, at least I shall have tried.

As yet, nobody really knows why it works for some and not for others, though the medical research so far from Dr Richard Burt in Chicago and others suggests that the earlier HSCT is done after a diagnosis of MS the better, and the younger the patient (and the more inflammatory and aggressive their disease) the better their outcome is likely to be.

People with relapsing remitting MS and primary progressive MS may have the best outcomes, though some classed as secondary progressive can also do well.


Early on in my own quest for this treatment last year, one neurologist pooh-pooed the whole idea of a stem cell transplant for MS with all the sweeping authority of a prophet  who had just strolled down from Mount Sinai.

“It’s all a con,” he said, indignant on behalf of the MS patients he seemed to believe were being tricked by wicked haematologists at home and abroad.

“It’s the placebo effect. People just think they’re getting better, but it’s probably mainly to do with the extra physio the patients do afterwards.”

Bollocks. After months of research, it seemed to me that Mount Sinai was wrong, and that the haematologists were right. And to his credit, after several months of research, even Mount Sinai changed his mind, and admitted there might be something to HSCT after all.

I met so many (you know who you are) who’d already had or supported partners having HSCT, as pioneers from Moscow to Mexico, Chicago and the Philippines, to Kings College London and Sheffield.

I was encouraged by what I heard and read, from the expertise of the many who tend so generously and ceaselessly to the HSCT pages on Facebook, providing answers to the many doubts and fears.


This could still go wrong for me. I’m well aware of that. Many risks do still lie ahead, from the lengthy flight home, to sepsis, pulmonary embolism, DVT, depression, or a simple cold or food poisoning that’s far more serious for an immature immune system that’s still figuring out what to do.

Six months of semi-quarantine, avoiding raw food, restaurants, crowds, swimming and soil, all the things that could prove toxic, are still to come.

And those months won’t be easy, as the mind and soul worry: is HSCT working or is it not?

I am aware, too, that a secondary auto-immune disease could result from the transplant itself. And from the graph produced by Professor Paulo Muraro, the stem cell guru and clinical reader in Neuro-immunology at Imperial College, showing that every month post-transplant brings with it a new and different risk for the growing cells, from the scarily-named Cytomegalovirus CMV to plain old (destructive) Epstein-Barr.

There are many risks ahead. But life itself is risk. And I feel more alive today than I have done in many years.

For me, by far the greater risk was declining slowly every day, feeling my voice, my limbs and my brain grow more leaden with every passing hour, shrouded and silenced by the fog.

I believe that the doctors who say it’s too soon to do HSCT when you’re already walking with a cane and each day begins and ends with crushing fatigue (“but you look so well!”) are wrong.

And I can literally never repay the generosity of family, friends and colleagues who made and continue to make this journey possible with your unstinting love and support. Thank you.

I wonder still why so much energy among the experts in the UK goes into dismissing or questioning HSCT.

Why don’t we roll all our energies into more research and funding, to discover exactly how and why HSCT does work for MS (to varying degrees) for some 75% of those who have it – for at least the first five to seven years – and in many cases far longer, perhaps for life.

The theoretical mortality rate is now down to 0.8%. And while the risks associated with it afterwards are higher, so far here at Clinica Ruiz, not a single international HSCT patient with MS has lost their life as a result – more than 250 international MS patients on.

The same goes for the almost 600 patients treated by Dr Federenko in Moscow, not to mention the ever-growing numbers in London, Sheffield, Chicago, Stockholm, Heidelberg and elsewhere.

And so, with gratitude and joy, to bed, taking my newborn stem cells for the sleep that they deserve, in the hope that the oncoming sluggish days of neutropenia will pass uneventfully for us all, before our new cells awake and get to work. Good night.



Puebla Day -1 The Last Chemo


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.



Puebla Day -2 Stem cell harvest day


When I think about the harvest, my mind always goes back to Unterwasser, the Swiss village perched on the side of the Alps in the canton of Appenzell. As children, we holidayed there over many summers, my two older brothers and I, and Mum and Dad.

I was always car-sick on the drive on the way there – long before budget airlines had been invented. We motored all the way from the UK to Appenzell in the maroon Austin Princess, over three long days, the car only overheating occasionally. Our frequent breaks by roadsides in the UK and through the length and breadth of France were mainly to allow me to be sick on the edge of the fields of blood red poppies that grew wild everywhere in high summer. It has taken around forty years for me to stop associating the taste of French mineral water and the smell of poppy fields with being sick, though I have finally succeeded.

It was only as an adult that it occurred to me quite what a trial it must have been for Mum and Dad, and for my brothers, to have to sit in a car with a small child being sick every hour or so at the worst times or a mere once a day at best.

My car-sickness wasn’t helped by the fact that Dad smoked. Incessantly. The mere sound of him lighting up at the steering wheel was enough to make me retch. As a child, I hated smoking with a passion. Until around the age of 15 when I started to do it myself. Dad sounded weary rather than properly cross when the nuns at my convent boarding school rang him to say that I’d been caught smoking in my room at the age of 16. That was a tent pound fine, so I needed to borrow the money – and had to tell him why. “Don’t do it again,” he sighed, knowing full well that I would.

But when we finally arrived in Unterwasser, and the car laden with children and luggage had managed to groan its way up the steep, winding road, it always felt like coming home. Our mother was Swiss, so it was in every sense a homecoming. Everyone there spoke the language that she did – Swiss German – the language that others found so strange, so guttural, that was my mother tongue. It was the language of home, so it always felt comfortable and familiar to be around others who understood. And just as crucially, the Swiss understood the importance of good cheese – Appenzeller smelly foot cheese, as we called it, and proper sausages – cervela. Holidays in Unterwasser were bliss.


We stayed at the wooden chalet Haus Waldburger every year, and knew the neighbours – a farming family – well. When we ran in to the house and opened the wooden shutters to let in the light, a delicious smell of wood and hay permeated every single room, as if each one, in the hours of the night and quite on its own, had brewed its special scent of Switzerland for us, and us alone. Every night, I’d go to bed, hugging myself with glee to be living in a real life version of Heidi. I even had a dirndl that I grew out of far too quickly.

I can’t remember how long we stayed. Perhaps it was weeks, or perhaps it was months. But in my unreliable memory, the days seemed to stretch out endlessly in one long sunny blue sky over the Chuebode, the cow meadows. Though I know for a fact that is untrue, as there were many days when the mists failed to rise over the mountains in the mornings, and hung sullenly over us, as we spent sodden fractious days indoors squabbling over Ludo, Monopoly and charades. My oldest brother Sam, the most competitive one, was always determined to win. My middle brother, known as Tid, was the peace-maker, who tried to intervene if things started to get rough. For example, if Sam was losing. Sam usually won. I think he still does, though he cheats less these days, as he tried to set a good example at Monopoly to his youngest daughter.


Sometimes I liked the wet days best, as it meant that nobody would want me to walk up a mountain with my much shorter legs. I was always struggling to catch up, and grateful to my father for his frequent cigarette breaks that meant he would have to sit on a bench and puff for 5 minutes at a time, giving me the chance to catch up.

He opened his packet of purple Silk Cut as though inside lay nirvana, and smoked each and every cigarette with relish at every chance he could. Mum would sometimes give him a little glare, but she tolerated his smoking, even if there was occasionally an exasperated sigh.  Smoking was so much a part of Dad then and throughout my childhood that I am still caught by surprise sometimes to see him today, at the age of 85, with no cigarette in  hand. He finally gave up in his fifties, when a doctor told him that otherwise he would die rather sooner than he might wish.


I would have been perhaps 5 years old that first summer in Unterwasser, and in photos from our later holidays, I can see that I must have been 7 years old with my brothers aged 13 and 14. One August, the lazy days of walking, playing and betting on snail racing (my snail always lost – some just aren’t built for the race) came to an end when the farmer next door, Herr Forrer, asked us to help with the harvest.

It was the most exciting thing all holiday, apart from getting stuck on the chairlifts in a thunderstorm, a day we survived in the era before mobile phones by shouting loudly for several hours until someone heard us and winched the chairlifts back down. Luckily, the lightning that was shivering around the mountains had avoided the large metal rods that we dangled from so precariously.

Harvesting involved using large dangerous pronged implements meant for grown-ups, an immediate plus for us children. And we watched, fascinated, as the hay from the meadows was cut and then sorted and then eventually rolled up into neat Swiss bundles. It smelt of pastures and tiny flowers, and that comforting aroma of cows and the warmth of the sun.

That smell for me is inextricably bound up with my mother. Whenever I think of her, I think of those pastures, and the smell of the hay. Though we didn’t really know it then, she was already quite ill. She had only four summers left on this earth. But of that we were blissfully unaware. Yet her illness was like the clouds that would descend on the mountains sometimes in the mid-afternoon, harbingers of a storm. Sometimes it failed to arrive, but at other times, at night, the storm would rattle the rafters and shake the whole house.


That last summer in Unterwasser, Mum spent much of her time in bed. She had kidney disease, which got worse as she grew older. Her face was kind, with chiselled cheekbones, big expressive brown eyes and shapely black eyebrows. Her hair, as I remember it, was always short. When she was younger, it was an Audrey Hepburn pixie crop. By her forties, it had morphed into the more formal sort of hairdo that the Queen still favours. But it suited Mum. She had a natural quiet dignity, and gracefully put up with us as children gently teasing her over the Swiss accent she never lost, as we grew into our proper British accents. And there were words that she – and still to this day, I – could not pronounce in the proper English fashion. I still add an umlaut to the word lunch, and could not tell you why, except that was the way that my mother said it, each and every day of the eleven years I loved her. And the word shoulder has a T, not a D. At least it always does in my vocabulary, and I think it did in hers too.

By then, though, Mum’s face was already chiselled with two thick lines of pain between her eyes, eyes that on some days seemed to be filled with pain, and the knowledge that all would not be so well in the years to come. She never talked about her illness. It was just there, in the glass of sodium bicarbonate she drank at mealtimes – breakfast, lünch and supper. And we knew that on some days, when she went to bed in the afternoon during our boarding school holidays, we shouldn’t disturb her or make too much noise. And most particularly, that Tid must not play his violin, nor me my flute, unless expressly asked to do so. Though that was probably a service to music, as much as deference to our mother’s ill-health.

Mum must have been in her forties then, slightly younger than I am now, and her health was failing fast. But in the long summer evenings in Unterwasser, when the harvest was done and the games had all been played, we’d rush to her room to tell her how much hay we’d raked, and who had been the best at it. Sam, of course, though Tid was the cheese-eating champion. He still is. He had, one summer there, even bought a beautifully carved Appenzeller pipe, which he smoked proudly with appalling black tobacco. When she caught him offering it to the seven-year old me, it was one of the few times I remember Mum being properly angry with us. I never smoked it again. But however ill she was, Mum always wanted to hear everything about our day, and relished our excitement at the harvest. We worried about her, but rarely asked too much. Ill-health was something adults did and discussed and fretted over, not us, though we knew in a buried section of our minds that she was slowly, daily, unwillingly slipping ever further over the border into the kingdom of the sick.

I found myself today drifting back to Unterwasser in my thoughts today as I sat in the apheresis room at Clinica Ruiz, having my stem cells harvested. The room is cold and functional, though the brown leather chairs offer an enthusiastic embrace. The room felt very cold at 0930 this morning after the sunshine outside. We’d been told not to eat or drink after 0700, so – slightly hungry and thirsty – we waited patiently to be hooked up to the machinery that would take and give back our blood through the PICC lines inserted into our chests the day before – each machine sorting and taking away our stem cells as it whirred mechanically through its task for three hours or so.

The transparent plastic bag that contained my harvest was slung low on the side of the machine. It had my name and a barcode on it, and I found myself unexpectedly delighted to be the possessor of a barcode at last. I had arrived! Perhaps I could scan myself with my mobile phone? I couldn’t try it, as the whirring lines of blood, too-ing and fro-ing busily from my left hand side to the machine on my right prevented too much movement.


And perhaps the other thing that had sent me back into my childhood reverie was the nappy we each wore, just in case. Joy, my nurse, had so aptly for her name, taken some relish in helping me choose the best nappies when she broke the news to me that there was one day in this process that I would need to wear one, because getting up or walking around would be impossible for three full hours or perhaps more.

Tena, it turned out, were the best for a traditionally built woman such as myself in increasingly stout middle age. So with a free pink plastic package for my inaugural nappy, that read ‘All you need is love’ (it tactfully didn’t mention good absorption), I woke up this morning to put on my nappy, an experience that probably did take me back some 46 years or so, though I am sure that the nappies back then were smaller.

To add to the delights of the day, when I woke up the shoulder where the PICC line had been inserted the day before felt as though my kindly brown-eyed surgeon had in fact – while I was asleep – leapt upon it, danced upon it, hammered it with the biggest hammer he could find, before leaving off to tap dance on the other one just for good measure. I’m sure he didn’t. There hadn’t been enough time. But still, it was in agony this morning.

So Joy offered me a painkiller, which I accepted eagerly. That was before I discovered her coming towards me with a small needle and a nurse-ly gleam in her eye. Nurses do like to be useful to their patients, and here was another chance. “It goes into the bottom,” she said, gesturing at my expanse of upper thigh below its waist of shame. Ah. So it does. And it was bliss. A small prick in the bottom, and soon I felt a lot better. It doesn’t often happen that way, but today it did. I remember going on a detox holiday in Germany several years ago now, to try to rid myself of what I hadn’t realised were the symptoms of MS, but thought were simply down to long hours at work and relentless years of travel. The detox was good but when it comes down to it, if you are in pain, it’s good to tox. And to retox. The drugs here are legion – some six a day on some days, and I take them all with pleasure, after a life spending rejecting aspirin as sissy, and headaches nothing that another glass of bubbly or cigarette won’t improve.

Though perhaps if I hadn’t toxed quite so hard throughout my life, I wouldn’t be sitting here in a nappy in a cold room in Mexico, having my life’s blood drawn out of me, and my tiny, well-behaved (I hope) immature cells taken out, in the hope that they will behave better in their own upcoming life when they are reborn on Saturday than I have done for most of my 49 and three quarter years on earth. I have now given up smoking, and drinking alcohol, and live a life of blameless virtue. But my God it can be dull.

When my new stem cells turn one year old next year, I shall be 50. Just two years or so younger than Mum when she died of liver cancer in that sunny Swedish summer, in a hospital near where we lived that year, a hospital that is now one of the leading places in Europe for stem cell transplants for MS.

I looked into the hospital on the internet while I researched stem cell transplant treatments in Europe and elsewhere. The picture of its forbidding red brick exterior was so familiar that the intervening four decades fell away, and I was a child again, on my way to visit Mum at the Karolinska hospital during those long hot days in 1978. She was having chemotherapy, and vomited frequently and profusely in what my memory tells me was sometimes purple, sometimes green and sometimes blue. By then, she couldn’t speak much at all, and lay there, her lovely face not far from a death mask, her eyes closed, the skin now stretched over her glorious cheekbones, and her mouth tightening in pain. Only the rise and fall of her chest suggesting she was still alive. Then, wordlessly, Mum would  reach out and take my hand or Dad’s, or one of my brothers, just to reassure us, and we’d squeeze hers to let her know we were there.

On the way to and from the hospital, it was Tid who often took me on the Stockholm underground, which we christened the Tunnelbanana, though I think it was a Tunelbana. On every trip, he’d stopping to buy me an almond-covered chocolate ice-cream, a taste I still associate with my Mum. Though in a good way. I still love the taste of a mini-Magnum straight out of the freezer. Even after chemo.

One day, perhaps that August – I don’t remember and I never have remembered the date, because I don’t want a day every year that I need to be sad on – Dad came into my bedroom to wake me up. He sat down on the side of the bed, and I knew something was badly wrong. But I had no idea what.

“Mum died last night,” he told me. “I’m sorry.” And I didn’t know what to do or what to think. I was 11, and though I knew that Mum was ill, she’d often been ill before, and it had never ended like this. Somehow my 11-year old mind had completely failed to engage with the idea of death. It was something that simply wouldn’t happen to us. But it did.

The flat was silent that day, and the sun shone on regardless through my window as I gazed out through the blinds. The sky even dared to be blue. I don’t remember anything else at all, apart from snuggling deeper into my duvet and holding very tight to my battered sheepskin teddy bear, Muschi, whom I’d named (I discovered later on) rather unfortunately after the German word for pussy, in the Donald Trump usage, rather than the pet. Muschi, as he always did, gave wordless, bear-like comfort. He knew what I was going through, and he understood. He couldn’t make it better, he didn’t tell me comforting lies like the adults did, that life would get better and that this too would pass, but he could make it a little less bad.

I didn’t bring Muschi with me to Mexico. He’s older now, and less fond of travel. He sits very happily in a drawer at home with his companion Georgina, a yellow teddy I made for him when I was seven, in the belief that no teddy should have to live alone. They never did have children together, which disappointed me until around the age of 12 when I began to understand why, but they seem content to pass their years together, only occasionally coming out for a bath, which neither of them seems much to enjoy.

Today, we patients and carers (husbands and Joy, ten of us in all) sat outside on a terrace at the clinic on the first floor, sheltering under sun umbrellas from the glare of the midday heat, after our stem cell harvest was done. One hour passed, and then another. We made desultory conversation, as we waited to find out if we had produced enough stem cells to go through to chemo this afternoon.

Nobody seemed worried, though perhaps inside each of us was that gnawing ‘what if?’ But we smiled, and talked, and ate a little. Finally, around 4pm, the results were in, and Dr Guillermo Ruiz arrived to read them out to us all, with all the pomp and circumstance of an old-fashioned courtier emerging from the royal bed-chamber to announce the birth of the son and heir.

None of us had laid any bets on our stem cell count (rather a missed opportunity, I thought, but there are fewer bookies here. Though my brothers and I had always managed perfectly well to bet on our snail races in Unterwasser without the help of any bookmaker). Regardless, our results were good. We all passed our most important exam at Clinica Ruiz.

I didn’t come first – but my 191 million stem cells were more than double what was needed, a million per kilo of weight. Thank God. And filgrastim. And the doctors. Marion, the youngest of us here at a mere 30 years, came top, with an unfeasible amount of stem cells that I pray will see her back to health for a full and long life. As I wish for all of us.

We had all produced enough stem cells to go on to more chemo this afternoon, and most crucially of all, to received our stem cells back on Saturday. So soon. But just like Christmas for a child, not soon enough. Two more sleeps until stem cell transplant day.

The hospital in Sweden that could not save my mother is now saving many other lives with this treatment for cancer and MS. Sweden offers world-beating HSCT. I just could not face going there, to the Karolinska hospital, however good. When I chose to come here, it was partly because Mexico for me is free of those memories, good or bad. Here underneath the volcano, I can just be. Exist. Be treated, perhaps be healed. And concentrate on the millions of tiny stem cells that I shall treat so well when they are given back to me.

If you were given a second chance at life, what would you do with it? Do you do things differently? Do you learn from what you’ve lost and from what you’ve always longed to do, if only you were well?

Does illness teach? Is there a message there? Or is it random happenstance, in an uncaring universe where the sun still inexplicably rises the day after your mother dies? I still don’t know. Religion offers some consolations to the sick, even more than to the well. Although  some of my friends took to calling me Job when a gum abcess over Christmas nearly scuppered my chance to come here, taking five different dentists to cure. I did wonder at that point whether God or the universe was trying to tell me something, and might send a plague of frogs, or a strike by British airways cabin crew on the day of my flight, a cruelty the Old Testament had not foreseen, and which in the end we were spared.

But I liked my life before I was sick. Perhaps with a few tweaks, but I am blessed with a wonderful rambunctious sprawling family, a fantastic job and wonderful friends. All the key things in life were, and are, there.

Yet I notice now that MS has changed me, year by year for a quarter of a century or so, just as kidney and then liver failure changed my mother’s life. Your vistas narrow, just as your future narrows, so gradually that you don’t even realise the theft. The broad horizons of the Alps, the widening expanse of sky beyond, all diminish to the pillow on your bed, and eventually perhaps the sliver of sky through the window as it slowly darkens from afternoon into night.

But I want the miracle. I want to be Lazarus, not Job. I want to rise again from my bed. I, and perhaps the others here, are not prepared to accept that gathering darkness yet. I want more bright summers, with my family, and my nieces and nephews and the beautiful  great-niece born just before Christmas whom I haven’t yet met.

I’d like to make her acquaintance in good health, and be able to be there for her and the rest of my family in a way that I haven’t been for many years. MS has leached away at time for fun, and time for family and friends, reducing my days into blocks of work and sleep. Fun became something I could no longer afford much time for between the necessities of a job I loved, and my incessant need for sleep. I could sleep for 16 hours at a time, the fatigue pole-axing me some days shortly after getting up. I have sleep-walked through much of my life already. I’d like to be awake for the rest.

As we go to bed tonight, with another round of chemo in store at 0900, and the volcano Popacatapetl shrouded in the darkness of his dreams, I want to dream of Unterwasser once again. I want to see Mum again, and remember her as she was in the best summer there, laughing in the middle of a meadow in her brown and orange dress (it was the 1970s, and the height of fashion at the time).

In my memory and perhaps in my dreams, she was giggling as we tried to push Dad up the mountain, as he protested and reached for his cigarettes. And as we walked, we laughed and bickered and smelled the sweet hay of the harvest all around us and had that blissful youthful certainty that all was well, knowing nothing of the years to come.


Puebla Day -3 Journey through the underworld

img_7812Puebla Day -3

Hot, clear, cleansing water. On tap. One of the greatest luxuries we have, a morning rebirth every day, sloughing off the cobwebs of the night – a watery re-awakening into the morning sun. It is the luxury we take most for granted. Showering this morning at 0700, I stopped to relish every second. Knowing it was the last shower for a few days that would be easy, enjoyable, and not filled with concern over accidentally getting my upcoming PICC line wet.

First, I anointed my hair with the citrus shampoo purloined from a hotel in Cairo in August 2013, when we went to cover the demonstrations against President Sisi by the Muslim Brotherhood. After the heat of the day had abated – I think it must have been during Ramadan that year – we travelled in the cool of the evening to film the sit-ins at Rabaa and Nahda, talking to families there as the Egyptian security forces prepared to raid them on August 14th. Cairo was a city divided and on edge that summer.

But late every night, when the filming was done and our reports had been filed, I still remember the bliss of the shower in the hotel on the island in the centre of Cairo. I remember too the unspoken relief we each savoured when we returned to the hotel safely every night after filming at demonstrations that were rapidly turning into a brutal contest of wills between protesters and the government. With the water cascading down, the cleansing droplets caressing every inch of me, sloughing off the dust and demonstrations of the day, I could finally shut my eyes and just be, living in that moment of corporeal bliss, all thoughts and analysis suspended in this watery heaven.

When I shut my eyes in this morning’s shower, holding on to the handrail to steady myself, I thought of another shower. The best one I’ve ever had in my 49 and three quarter years on this earth. It was in Kuwait in 2003, again in May, I think, although my memory is unreliable on dates. I do remember it was at sunset on the day we ended our embed covering the invasion of Iraq.

For several weeks, my colleagues and I had lived and worked in a British military camp in the desert known as the FPIC. The Forward Press Information Centre. The only two words in that acryonym that bore any resemblance to the reality were press and centre. There were a lot of journalists; most, the hardy veterans of many wars across many continents.

And, perhaps surprisingly for some, a lot of them were women. Rachel and Sarah Corp from ITN and Channel 4 – two feisty sisters who feared nothing. Our camerawoman, Julie Ritson – the best woman to have by your side in any tricky situation, anywhere from Basra, to Helmand or even Chechnya and Vladivostock.

And my BBC correspondent colleagues: Hilary Andersson, a generous soul as well as a ferocious seeker of the truth behind every story, whose dry sense of humour never failed to make me smile. Not forgetting Kylie Morris, whose Aussie sunshine smile and fund of jokes never stopped.

Of information, there was little. And forward? Well, perhaps we were a little closer to Basra than some of the other embeds, but the idea that this was any hub of information proved far from the reality. Official information was patchy, occasional and usually only half the story, if that. Reading between the lines became a skill we practised ruthlessly every day, several times a day. Our minders – most of them reservist volunteers – were enthusiastic, kind-hearted and did their best to wrangle this unruly cadre of correspondents and others into some kind of organised corps, who’d report what they were told. They failed on a daily basis, but the battle of wits was fun.

It was the first war I’d covered in which mobile phones could be used. As we drove into Iraq as a media convoy behind American and British troops, my great aunt rang me on my mobile. “Hello dear, how are you?” “I’m fine, Mairi. But we’re just invading Iraq. Can I call you back once we’re finished?”

Then there was the border guard who didn’t want to let us out of Kuwait. I think our paperwork was not in proper order, and if you are a border guard, these things count. After a brief stop, to persuade him there would be less paperwork if he simple let us through, we continued to our sandy new home in the desert.

For several weeks, my BBC colleague Hilary Andersson and I split our reporting duties, so that at least one of us could leave the camp each day to find out a little more about what was really happening ‘on the ground’. But all we could know for certain was what we’d seen with our own eyes and could verify. And some days, that was precious little.

People talk of the fog of war. We tasted the dust of war: sandstorms so ferocious that they reduced our visibility to a matter of inches, and turned the desert around us into a howling yellowy-orange void. Our small tents would be battered and filled with fine grains of that sand that got into every crevice.


One day, as Iraqi forces bombarded a position near us, I was sitting in the sunshine in one of the open-top wooden latrines, trousers around my ankles, pondering what the day might bring.

Suddenly, a bang in the distance, and the cry of “gas, gas, gas” went up – the signal to put on our masks, in case the shells landing wherever they pleased contained biological or chemical weapons.

I was paralysed with a moment’s indecision. Should I pull my trousers up first and preserve my dignity, or reach for the gas mask that hung from my belt and save my life? It seems an easy decision in hindsight, but at the time it was not. Dignity is heavily ingrained – and what would my mother think if I’d run through the camp half-dressed?

But sense prevailed. Gas mask first, then trousers. And a heart-shattering run to the relative safety of the bunker that we’d helped to build the week before.

Sitting panting from my exertion, the adrenalin beginning to subside now I was safely in the bunker, or so I thought, I could feel my eyes welling up. My nose began to run. Involuntary tears streamed down my face. Had I been gassed? No, everyone else looked just fine. Perhaps I’d been closer to the explosion? No, everyone else still looked fine – if a little silly in our camouflage tops and black gas masks, for all the world like a Berlin S & M party that had somehow got lost in the desert.

For a few panic-stricken moments, I thought that I had been gassed and might just die. And then, just as suddenly, I realised with a chemical surge of relief throughout my body that some tiny particles of tear gas – used in our training – had still been lodged in my mask. My heart rate began to slow, and all I could do was laugh, shaking silently at my own stupidity in not properly cleaning out my mask.

There were many other days, and many other stories from the desert in those weeks: the hopes that the people of Basra had pinned on British troops in the early days. The souring of their warm initial welcome. The dead young Iraqi man whose body lay just outside our camp one morning, that even the gentle afternoon heat could not revive, his name and story unknown. The day that Basra fell or was liberated, and we got lost in the desert because our (British) military driver couldn’t read a map, and instead drove straight towards an insurgent checkpoint as we shouted at him to turn back.


But of all the things that stay the most vividly with me to today, it is the bliss of the shower in that Kuwait hotel room after weeks of grime and dirt – a carnal bliss that I can still feel if I close my eyes.

As the endless hot clean water cascaded down, the sand that had lodged in every crevice of my being gradually started to loosen and slide towards the shower floor, until the smooth white enamel resembled a mini-desert of its own, sand lapping against the sides of the cubicle in drifts.

For ten or even fifteen minutes I stood beneath the water, sloughing off both the war and the sand. Never before and never since has the simple act of washing felt so good. We had had our solar showers in the desert – hot water bottles hung up high, that dribbled their precious liquid over your shoulders in miserly drops, but did little to actually clean. This was the first time I had been truly clean for so many days that I’d lost count. And as I reluctantly emerged and turned off the tap, I sat on my bed in a white fluffy towel for thirty full long minutes, my body and brain numb with gratitude and bliss. I was alive and in one piece. And best of all, I was alive and clean.

That gratitude, for all the things we usually take for granted, came back to me today. This morning’s shower was the last for a few good days that was uncomplicated, blissful and a pure physical delight, with no PICC line attached to my chest.

My worries about its insertion were not necessary. The doctor, Juan Miguel, I think I heard him say through the comfortable haze of drugs provided by Erik the anaesthetist, was quick and adept. His warm brown eyes above his surgical mask inspired confidence and trust. I didn’t even feel the line go in, perhaps a mere twenty minutes after he drew a confident black dot just beneath my collar-bone to show me where it would be.

Efficient kindly porters had practised the knack of rolling their patients from one bed, across a metal barrier, with someone to catch and settle you gently on the other side into the area before surgery. Behind his own blue surgical mask, Gustavo introduced himself as he helped wheel me into the operating theatre, the white lights passing above me as I lay on my trolley. If this was passing through from our everyday world to the underworld of anaesthesia, it was a blissfully painless ride, and the Hospital Puebla a very welcoming place (with valet parking only costing a few pesos, as was made clear at the entrance).

In Greek mythology, when your soul passes from this world and reaches the River Styx, the boatman Charon would give you a ride to the underworld. But that ride was not free. If your family had not buried you with a coin to pay the boatman, you might find yourself stuck.

Luckily, my borrowed coins had been sent on to Mexico some weeks in advance, so all was well. In my addled, anaesthetised mind, as the lights of the operating theatre dimmed and vivid visions took their place, I crossed over into a twilight world of dreams, as Greek myths filled my thoughts.

For those who received their ride in Charon’s boat, there was little to do on the other side apart from wait to be reborn. A new body would await. And these souls would not remember their previous life, nor its pains and hardships. They would simply start again, as a new-born infant back in the real world above.

A few dreaming hours later, I woke up with a start in hospital room 203, painted the colour of sunshine. My shoulders hurt, although the PICC line created no pain at all. I felt sick, and dehydrated from the hours spent with no water and no food, and reached greedily for a snack. Bad idea. A pang of nausea hit my stomach, and a migraine began its ominous drumbeat in my head. Water first and then food.

And then a brief drive back to the flat in the January sun, and back to my refuge – my bed, solid in the swelling sea of nausea, to watch the sun set over Popocatapetl, burnishing the clouds. A flock of what might be swallows formed a cavalcade, nodding to me with a fly-past by my window, a swarming together through the air in the miracle of flight.


In three days time, we punctured patients here shall be reborn. First, though, will come tomorrow’s stem cell harvest. Another shot of filgrastim tonight to stimulate the tiny cells to grow. A long morning’s harvest lies ahead, the millions of stem cells encouraged out through the PICC line so carefully inserted today. Perhaps Demeter, the Greek goddess of the harvest, will be watching us here in this grain-filled, fertile land. And then another round of chemo, and on Friday yet another, before Saturday brings rebirth.

My shoulders still hurt, and my fingers are aching tonight. The light has gone outside, and Popacatapetl sleeps in darkness, and soon so shall I, if I can settle with the PICC line emerging rudely from my breastbone.

But in just a few days’ time, we hope we shall all return from the darkness and the twilight kingdom of the sick. And when and if we are better again, in a few months or a few years, will we still remember and be grateful for this journey through the underworld, as we step back into the light?


Puebla Day -4 A sky blue Volkswagen


Joy, the kind young nurse who looks after me here in Puebla, eyes me with sympathy or perhaps something akin to pity while discussing which car she’d like to own. One day, she says, she’d like to have a sky blue Volkswagen. What car do I drive at home?, she asks.

I admit that I don’t drive. Not any more. I live in London, so there is no need. There are buses and tubes, when they’re not on strike, and I like to walk as far as I can every day. She looks a little disappointed because Joy is a car enthusiast, who can discuss the finer mechanical points of a VW with the best of them.

She is a particular fan of Volkswagens, not least because they’re made in Puebla – only home of the VW beetle factory. It’s one reason why the streets are dotted with the world’s most beautiful car in every colour of the rainbow, and some colours I’d never even seen before – such as the Astroturf beetle near our flat.

What I don’t mention to Joy, perhaps out of a strange and inexplicable sense of shame, is that when your eyes blur on bad days thanks to the optic nerve damage done by MS, and your brain can no longer accurately calculate proximity to other vehicles or the spacing between the lines on the road because of the lesions that have crashed into your brain’s spatial reckoning areas (rather than thanks to being a woman) it’s no longer a great idea to drive.

The DVLC agrees, though I haven’t yet got round to telling them that I have MS. There doesn’t seem much point. I haven’t driven in the UK since 2007, although I loved driving in the 15 years that I was based in Berlin, Paris, and Moscow reporting for the BBC.

Though perhaps not on my very first night in Moscow when I got lost, and ended up following a road-sign to Minsk (the capital of Belarus) by accident while trying to find a side street off the main Moscow ring-road, the MKAD.

For around 45 minutes I could see no way to come off the motorway, or to do a U-turn. I had to fight off a rising tide of panic as the orange sodium glare of Moscow receded in my rear-view mirror. Not least because I knew it was a 12-hour drive to Minsk, in a country where I didn’t speak much of the language, and the traffic police had already seemed pretty unsympathetic when they stopped me to demand a bribe as I drove into work that very same morning.

This was in the days before satnav or proper mobile phones, so Charles, the friend I was supposed to meet a mere five minutes away from the BBC office, was rather puzzled when I eventually arrived at his flat in an agitated state almost two hours late. He consoled me that it would be easy to drive back home again. I just had to avoid that motorway and stick to the back roads.

When I got back to my parked car after supper, someone had smashed in the window, and stolen the radio. It was hard to disentangle the icicles from the shards of the windscreen as I eased myself into the front seat of the now icy Volvo to drive it back home that night, paying yet another police bribe on the way – for the crime of having a broken windscreen at a time that no garage would have been open to mend it. Welcome to Moscow in December 2000.

It occurs to me today as I sit and talk to Joy in the sunshine at a café near our flat just how much of my independence MS has eaten away, so slowly and subtly that sometimes even I had failed to notice. When I stopped driving in 2007, I pretended to myself that it was because there was no point having a car when living in London. In reality, I was worried about my blurring eyesight, though I rarely admitted that even to myself. I did go for several eye tests, but was always told my eyes were fine, and sometimes even that I had 20/20 vision. Just not all the time. So that still didn’t explain the blurring.

Several eye specialists later, from Moscow to Paris and London, nothing had explained it. My eyes were just fine and according to the more gallant elderly gentlemen opticians, they looked just beautiful (thank you, but why are they blurring?). Until the definitive diagnosis of MS finally came in November 2015, none of it made any sense. I just became a person who didn’t drive. No explanation needed. And I took to my trusty bicycle instead. Much better for the environment, after all. Not a disability, but a courteous nod to the planet.

Then, five years ago, in 2011, I stopped cycling when my balance started to go and I found myself toppling into the busy traffic along High Holborn. I didn’t even analyse it, even as I walked home with battered pride and a slightly scratched bike. I just thought that age and wobbliness was finally catching up with me, and decided that walking was better for me anyway. Fewer car fumes, and no more aggression from taxi drivers or impatient bus drivers. It was much better for the environment too. Save the planet and walk instead. Think of all the scrap metal you’re no longer creating by not needing a new bike every 10 years.

But last May, 2016, walking suddenly became a problem. Which for a biped is not a good thing. I had learned to walk without falling over around 1970, and been fairly successful at it ever since, apart from some spectacular late nights drinking vodka with the factory owners we filmed with in Moscow, Valdivostock or Naryanmar. So this was a genuine reversal of fortune, not to mention evolution. Crossing Parliament Square, on the way to meet friends one evening after a busy day at work, I fell over in the street, slap bang in the middle of a pedestrian crossing.

As I slowly realised what had happened so quickly, I couldn’t even say why it had. My feet or my balance just gave way with no warning. I lay there with my face flat on the gravelly tarmac unable to move for a minute or so, at eye level with a busy ant making its way rather more successfully across the road. Though I noted it had the advantage of more legs than me. And ones that worked.

The traffic light turned green, and I saw – looking at my immovable, tangled legs as though they belonged to some other strange creature that I didn’t quite recognise – that my tights had laddered, and one shoe was halfway across the street. Like a toddler, I wanted to howl with the shock and indignity of it.

Or perhaps more like Kafka’s Gregor Samsa, I wondered what I had turned into as I lay on my side, unable to summon any force in my legs to get up again. Had I metamorphosised into a beetle? The small black kind, rather than Joy’s sky blue VW, its legs frantically seeking solid ground as a small child throws it onto its back just for the cruel pleasure of seeing whether it can right itself again?

An off-duty BBC colleague happened to be walking behind me. No, I was not a beetle, thank God, but still a human being. Albeit not so successfully biped at that moment. Nick  picked me up with some concern, cradling me delicately with one arm like a cracked piece of Dresden porcelain that might fall off its shelf again at any moment, and dusted me off as I sat down outside the Supreme Court and tried to regain my lost dignity.

My knees were bleeding, and the gravel had stuck to the coagulating scab, but I was determined to go for that drink with my friends. I could worry about what had happened later on, once back at home and in the safety of my bed.

The next morning, the bed no longer seemed so safe after all. I woke up with double vision, looking at the lampshade above my bed and seeing two or even three of them. I closed my eyes again. And opened them. Still two lampshades. I knew there was only one. And I had drunk no alcohol the night before. Was I going mad? Perhaps. Maybe this time I really was a beetle? Shut eyes, open again and hope. No. Two and a half lampshades now. Look down at legs. Two. Not a beetle. Phew.

It took a good, or rather a bad ten minutes before I finally realised that I was having the worst MS relapse yet. And that was the first time in twenty four long years of wondering what was wrong with me that I really howled with grief and indignation for all that I knew I was losing. My independence. My sight. My ability to walk. All the things I had taken so happily for granted for so long, since around the age of three. As we all do – when we have them.

I was perhaps – at least – not losing my mind, but I was definitely losing my senses, and many of the essential things that made my life worth living, I realised with appalling clarity in the midst of my semi-blindness.

For six long weeks I could no longer see properly, nor read. Normally, I’ll read thousands of words each day. I love them. I don’t mind if they are in a book, a magazine or a newspaper, or even on the back of a Cornflakes package or the packaging on the lavatory paper. Words are wonderful, endlessly interesting, malleable, transformative; they create as well as describe our reality. And crucially, they are what I do for a living, wrangling them and trying to make them work for me, and for whatever I may be reporting on. Words are fascinating in English, German, French and Russian, their every nuance creating a fresh reality. But in that bitterest of Mays, words were no longer my friend. They blurred and twisted away from me in agony, each letter shrinking away from me whenever i tried to coax them back and make sense of them again.

Nor could I watch television. My brain simply could not compute the moving images. NCIS was normally always able to offer a reliably comforting grisly murder after a long day at work. But now watching Grissom’s car was like being on a rollercoaster, a chase leaving me retching with nausea on the sofa. Any movement on the screen made me feel sick and dizzy. I was a television journalist who could no longer watch the television. And a radio journalist who could no longer listen to the radio. Any noise rattled through my addled brain like a tropical thunderstorm on a tin roof, with none of the comfort that implies. The voices were shrill, echoing around my head, like a nightmare from Orwell’s Room 101. The room in which your worst fear becomes your torture. My own worst fears, apart from suffering a long, slow and painful death from standing on an IED, which I had seen happen to others, were not being able to see. Or swallow properly. Walking I could probably live without, thanks to the joys of Ocado and the internet. But no Radio 4 or World Service Radio was definitely torture.

On the bright side, if I lay very, very still, I could just about function. I could still breathe. And I could still drink water and eat mushy food. Something I thought I had progressed beyond in around 1969, but never mind. Swallowing had become difficult, and needed a conscious effort. Sometimes even breathing seemed tricky, though I thought perhaps that was just my very vivid imagination. The weight dropped off me, but for once in my life I was not grateful.

Weirdest of all, I could no longer listen even to music, my usual consolation when sick. No matter whether pop or classical, Prince, David Bowie, Rickie Lee Jones or Mozart or Brahms, music made me cry within seconds of switching it on. In the past I had sometimes thrown things at my radio in fury during the Today programme, but Classic FM and Radio 3 had never reduced me to helpless, irrational sobs before. Not even when they last changed the schedules on R3.

It was as though a layer of protection had been scraped from my nerves, leaving me as vulnerable as a new-born. Even my happy music made me cry. It wasn’t because I was depressed. I wasn’t. I was bewildered, worried and increasingly cross about my predicament, but with no hint of depression. I have a happy go lucky, optimistic  temperament, which is not down to any great virtue or zen on my part. It’s just the way I’m built. I still woke up every day and felt grateful to be breathing, and to have survived another night, even if that damned lampshade had multiplied again in the night.

It was simply that whichever part of my brain governed emotional responses had also had a meltdown, resulting in emotional lability, apparently a not uncommon symptom of MS. Perhaps it was another new and sadistic lesion that meant the nerves conducting my emotional responses were not working as they should, like a fraying electric cable slowly gnawed away by mice. Not hugely useful in a news journalist, accustomed to trying to apply a stoic response to death, flood, famine and disaster, and find the right words to describe them. A constantly weeping journalist is of little use to man nor beast.

So I turned the radio off, and lay in silence in the darkness for what felt like a long, long time.

Not least because by then I could not really walk, or not outside the flat, as my sense of balance had completely gone. And for weeks, the dizziness inside my head refused to subside. May is the cruellest month, T S Eliot, not April.

I realised that same first morning that my sense of taste had also completely disappeared. For several weeks beforehand, as the unseen lesion on my brain stem grew, I had noticed that food tasted increasingly bland with every passing day. Even water tasted metallic, bitter, unpalatable. I threw each fresh glass away in disgust and poured another, more puzzled every time. I dismissed the increasingly  strange taste as my imagination or middle age, or some strange contamination of the water system by mould or fungal growth. Must get a plumber in to check the kitchen tap, I wrote on my to do list.

It wasn’t necessary. The plumbing was entirely innocent. The wiring on my brain stem was not. So I went to that professional electrician of the brain, my neurologist, a few days later. He seemed to wake up and sound almost mildly interested by my loss of taste, and explained that it was probably a lesion on the brain stem. Apparently not a good place to have one, as it governs all your most basic functions. The brain stem is the part of the base of the brain that connects to the spinal cord, controlling – or not – the messages between the brain and the rest of the body. It also controls your basic body functions: breathing, swallowing, heart rate, blood pressure, consciousness, and whether you are awake or sleepy. Thank you Dr Google.

So would I be able to see normally again soon? I asked the human doctor in front of me. Probably, came the laconic reply. If I was lucky. Neurologists and electricians clearly have much in common.

I went back to my desk to consult Dr Google once again, sitting frantically typing in ‘blindness +MS + duration’ the next day and covering one eye so that I could see the results, at least partially. Dr Google is always there, and always has time for you. Even if he doesn’t always give you the right information. At least you’ll get something.

It was then that I discovered that many people with MS, writing on various MS blogs across the world, had had their double vision resolve over weeks or months. Though not all. Thank you Dr Google and all you MS bloggers. I think you saved my sanity. So I went back to bed, shut my eyes and hoped and waited and sometimes prayed. And drank water, and tried gingerly switching the radio on again every morning, just in case, though the voices still sounded like fishwives screaming at each other across a seaside marketplace, and any music much like an over-enthusiastic steel band positioned just beneath my pillow. But maybe it was just Sarah Montague and John Humphrys on a particularly disputatious pre-Brexit debate.

As May ripened into June and then July, slowly, almost imperceptibly, my vision began to resolve. It went from triple at the worst of times to mere double vision at the best, to one and a half vision at the best of all. By wearing a black pirate-style eye-patch to block off the input from one eye, I discovered I could walk again, even if only to the shop downstairs. Though not without small children on the street running to their mothers for comfort as I passed, shouting ‘mummy, mummy, is that woman a pirate?’

I had to resist the temptation to issue a terrible scowl and seek out a stuffed Norwegian blue parrot for one shoulder. I already had a walking stick that could pass for a decent sword. And that was when I decided that I really had to tell work that I was no longer feeling terribly well.

But all of this has been a very long digression from the subject I’ve been putting off tonight, which is the insertion of a line into a vein somewhere near my heart tomorrow morning through a bloody great big needle in my chest. Or at least I think that’s the medical term for it.

I am a complete coward when it comes to all things medical, and this – though not this alone – is what made me hesitate for several months about having a stem cell transplant after I first heard of them.

Thanks to Dr Google, the hypochondriac’s friend and the very knowledgeable http://emedicine.medscape.com/article/80336-overview I, or rather they, can tell you that:

“First described in 1952, central venous catheterization, or central line placement, is a time-honored and tested technique of quickly accessing the major venous system. Its benefits over peripheral access include greater longevity without infection, line security in situ, avoidance of phlebitis, larger lumens, multiple lumens for rapid administration of combinations of drugs, a route for nutritional support, fluid administration, and central venous pressure monitoring.

 Overall complication rates range up to 15%, [1, 2, 3, 4] with mechanical complications reported in 5-19% of patients, [5, 6, 7] infectious complications in 5-26%, [1, 2, 4] and thrombotic complications in 2-26%. [1] These complications are all potentially life-threatening and, invariably, consume significant resources to treat.

Placement of a central vein catheter is a common procedure, and house staff require substantial training and supervision to become facile with this technique. A physician should have a thorough foreknowledge of the procedure and its complications before placing a central vein catheter.

 Compared with femoral site access, internal jugular or subclavian access was associated with a lower risk of catheter-related bloodstream infections (CRBSIs) in earlier studies, but subsequent studies (since 2008) found no significant differences in the rate of CRBSIs between these three sites. [8]

 The subclavian approach remains the most commonly used blind approach for subclavian vein cannulation. Its advantages include consistent landmarks, increased patient comfort, and lower potential for infection or arterial injury compared with other sites of access.

 The advent of bedside ultrasonography has changed the overall technique of the placement of central venous catheters in both the internal jugular vein and the femoral vein. However, the use of this modality for subclavian routes has been infrequently studied, though there are some reports suggesting that it is feasible and safe….

 The physician’s experience and comfort level with the procedure, however, are the main determinants as to the success of the line placement in cases with no other patient-related factors that may increase the incidence of complications.”

As I sit here at my very shiny black Mexican dinner table, with Joy asleep in the other room dreaming of a sky blue Volkswagen, I can just about get over the ‘life-threatening complications’ line with some nifty refusing to think about it.

But the bit that really gets me is the part about the physician. There is absolutely nothing I can do about him or her, the human about to apply local anaesthetic and a great big needle to my still un-punctured skin in the morning. Apart from hope that the doctor performing the line insertion has not argued with his or her wife or husband tonight, is not out enjoying a last tequila beyond his or her usual bedtime, and that he or she arrives at the hospital tomorrow on tip-top form. And that for the five of us in my group who are going to have the procedure this sunny Wednesday morning in Mexico, he or she inserts each and every line with the steadiest of hands and the steeliest of nerves. I hope that the Hospital Puebla is a kindly place that nonetheless exerts a strict discipline on all its staff: early to bed, and rise with vigour, enthusiasm and élan. But not too much. Just enough to steer that great big needle into my tiny vein.

The blessing here in Mexico is that the line stays in for a mere four to six days, until our stem cells are harvested and returned to us. Elsewhere, patients can have them inserted for weeks at a time while living at home, waiting for an NHS bed to become free. More convenient for the hospital, perhaps, but a lot less convenient for the patient living, eating, washing and sleeping with a piece of plastic sticking out of their chest, just waiting to pick up an infection. Not to mention preventing you being able to turn over in your sleep as you dream of what car might be best to drive when you do get well again, and what colour it might perhaps be. Red? A bit racy for middle age. And then as you turn over, the unconscious mind starts to ponder the grim reality. Where in London might you possibly even dare to hope for a parking space for a car on the streets in 2017, with Camden Council now such an avowed enemy of the colourful combustion engine?

Still, thinking about the possibility of a car again is a welcome distraction from the great big needle. Up on the roof terrace tonight, watching another spectacular Mexican sunset over a dusky blue Popocatapetl quietly belching smoke (and he’s definitely a he in the local stories – he sits there doing nothing but grumbling and smoking), we who were in need of a distraction gathered once again for a cup of tea, or even a beer – we who are about to be punctured.

For all of us MS patients at the Clinica Ruiz, I suspect, it’s clear why we are here. I might not like the thought of a catheter inserted into my chest tomorrow, but I like the thought of another relapse even less. And this is the only way to allow the stem cell harvest – apheresis – to take place on Day -2, Thursday this week.

One fellow patient says that when he told another MS patient back at home of his plans for a stem cell transplant in Mexico, she asked rather indignantly why he didn’t just accept his chronic illness and get on with it instead.

But why should he? Why should any of us? Not while there is hope. Hope of a healthier life, and one without that storm-filled MS cloud hanging over us, and the terrifying “what ifs” of the next relapse, and the one after that.

We don’t tell patients with cancer to ‘accept their illness’ until it’s clear that nothing more can be done. We tell them to have chemotherapy and try to get better. We don’t give up on them, and tell them to accept their cancer as it slowly eats away at their innards. We did once, because we had to, but not any more.

So why is MS any different today, in this glorious 21st century of medical advances, and doctors who can coax new life out of your very bones? MS may not be immediately lethal, but it does kill us and the very essence of who we are: very slowly, day by day, nerve by nerve, and cell by cell.

And it must be possible to get better. Or at least to get no worse. This may well be a lifelong chronic condition. But there has to be a way to halt the progress of this disease, and make sure it doesn’t get any worse while I am still able to work, walk, talk, laugh and love. And HSCT is the best hope of that so far that Dr Google has been able to offer me in my nightly wanderings through the worldwide medical treasure trove of the internet.

I know that this treatment comes with a risk, but so does living. And this is one small risk (I hope) on that winding route that I hope leads back to the kingdom of the healthy.

Or at least, perhaps to the start of the road back to the kingdom of the “not quite so prone to falling over in the street outside Parliament”, for which I am almost certain there is a long and unpronounceable Mexican word.

Maybe drivingacarorridingabikeagainoneday or notfallingoversomuchanymorepetl?


Cholula, Day -5

A lot of stories but no certainties


Outside on the dusty street, the January sunshine gently warms my face and arms, soothing the deepening ache in my bones. But the minute we walk into the narrow arched tunnels below the Great Pyramid of Cholula, the temperature plummets. Suddenly it is cold and silent. To each side, dark tunnels run to who knew where or what. The main tunnel is lit from above, its full length visible as we walk cautiously, yard by yard, in single file.

The light casts an eerie artificial glare onto the modern intruders who step slowly, carefully, through the chill.

Like a medieval crypt, the tunnel we walk through smells musty, hinting at decades of gently-growing mould. It was only later that I discover that the eight kilometres or so of tunnels were built just last century, as archaeologists sought to unlock the secrets of the world’s biggest and perhaps least-known pyramid – its base four times the size of the great pyramid of Giza.

Almost nothing remains inside these narrow pathways, neither the finds carried away to museums nor the bones of the dead sacrificed to the gods on the many altars above ground.

Several centuries later, although it can only have been ten minutes or so, the nine of us – the patients and their husband, mother or carer – emerge from the vaulted tunnels back into the sunlight on the other side of the pyramid.

Tony, our young driver and guide, tells us that the original pyramid stood some 450 metres wide and 66 metres tall. Yet only fragments of the structure itself can be seen today. Over the course of a thousand years or more, the peoples who lived here before the Spanish conquest built the temples and sites of human sacrifice stone by heavy stone, starting three centuries before the birth of Christ, their task still unfinished nine centuries afterwards.

A gentle Mexican breeze plays through the trees as we walk cautiously across the paths curling around the excavated remains of the pyramid itself. No scent was left behind by the civilizations that created this place, although its scattered physical remains are spectacular.

It became known as Acholollan, a place of refuge, and later as Tlachihualtepetl – the man-made mountain, or so Wikipedia tells me. Today, the pyramid itself, or more accurately pyramid piled upon pyramid, is almost entirely submerged beneath an enormous grassy hill, with scrubby trees and cacti lining a path to the summit.

There at the very top of the slope perches the Church of Our Lady of Remedies, Iglesia de Nuestra Señora de los Remediosa, built in 1574 by the Spanish to mark their earlier Christian conquest of this land. Clearly, we have come to the right place for a cure.

Today, Cholula is proud to boast 365 Christian churches, one for each day of the week. Their bells chime faintly across the hill as we walk onwards, calling today’s faithful to prayer, rather than human sacrifice. But long before the Spanish came and massacred many of the city of Cholula’s inhabitants, the farmers and traders who lived and worked here amid the mountains had constructed their many temples to appease their own feathered serpent god Quetzalcoatl, Aztec God of Wind and Wisdom, who demanded human offerings.

We walk in silence for much of the way across this sacred site. A little of the chill of the tunnels can’t quite be banished from my arms. Beneath one enormous sacrificial altar, now simply a stone glowing harmlessly in the sun, a plaque tells us that the priests asked villagers to bring six- and seven-year-old children to be sacrificed to the gods to ensure that the rains would produce a good harvest.

The deformed and decapitated skulls of those tiny sacrifices were unearthed over the last century, as archaeologists from around the world sought to decode the history of this mysterious place. I wonder for a moment whether the children knew what would happen as they were brought here. Whether it was day or night when they came. Whether they were hungry, or cold. Perhaps they’d been taken to watch earlier human sacrifices and knew what was to come. Did their parents tell them it would be an honour to die for the harvest, so their people could be fed? Did they know how it would end for them?

Hmm, not a bad way to promote discipline among the younger children, notes one of our group drily, interrupting my reverie. We laugh, and it feels as though a spell has been broken.

Is this all true? I ask Tony. “There are lots of stories here, but no certainties,” he says, giving a quick smile beneath his gold-rimmed sunglasses.

Tony is kind, and helps those of us who are struggling to walk the distances around the pyramid. He has endless patience, and always offers us a hand up so that we can clamber back into the little van he uses to take us to and from the clinic most days.

For a brief hour or two, it has been easy for us to forget that we are here for medical treatment, as we lose ourselves in the distant past. Easier, here outside in the sunshine, feeling the flick of a grasshopper jumping busily beneath my feet, not to focus on the fact that these are the last days before the next critical phase of our treatment.

Our own stem cells will be harvested on Thursday January 12th. I wonder what gods we should be propitiating ahead of that harvest, and what we can do to please them. Clearly, child sacrifice is no longer an option, but in our superstitious human hearts and spirits, it would be good to know that the gods or God were smiling on us here in Puebla this week.

Inside my bones, even as we walk in the cold beneath the pyramid, and then the heat outside, I can feel the ache of my new stem cells growing, creating new patterns of pain deep inside the marrow, from my legs to my hips to my knees and even my collarbone. What new birth does not involve pain, I console myself.

Like the tunnels underground, or the sinister hidden glory of the temples above, there is a fathomless mystery happening invisibly inside each of us, as the cells that will form our new immune systems are encouraged to grow with the twice daily injections of filgrastim. Each is administered with gentle care in a quiet morning and evening ritual by the doctors and nurses, those high priests of medicine in their white coats, bearers of the needles, infusions and pills for which we have made our pilgrimage here to Mexico.

Day by day, hour by hour, the miracle of modern medical knowledge is coaxing our own stem cells out of the soft fatty tissue that fills the hollows of our bones, magicking them out of the very essence of ourselves. Our better selves, we hope, that may by some still unknown alchemy become a new immune system resurrected from the old: body and blood working as one again.

And on Saturday January 14th, these hot-housed new-born cells will be transfused back into our eager waiting veins. If all goes well, and there is a bountiful harvest of a million stem cells per kilogram of weight, the young immature cells that have not yet been corrupted by disease, or the complex interaction of genes and circumstance, should emerge to become the new blood cells that will fight disease. And if God or the gods are willing, they will in future protect our bodies from the invading colonisers – the bacteria, viruses and fungi that launch their daily attack on our unwary bodies.

But will they? Yesterday, on Sunday morning, I sat in the peace of the Catholic chapel near our apartment, saying a prayer to our Christian God. I dared to ask for a blessing of this new immune system as it emerges from the darkness of our flesh and bones. I even dared to ask for a second chance – of a healthy, happy life. But do we anger the gods or God with our ceaseless human wishes? I wondered, even as I said that prayer. Have I not had enough good life already, more than forty-nine years on this amazing, bountiful earth? Am I greedy in wanting more? The statue of the Virgin Mary carried on gazing adoringly down on her baby Jesus, and the nun in the chapel gave a dry cough as she tidied the silent pews.

Today, we drive slowly through the 3pm rush-from-lunch-hour traffic back into Puebla, to a Mexican restaurant that serves the local speciality, Mole Poblano: chicken in a chocolate and chile sauce. Like the Great Pyramid of Cholula, it is the quite remarkable result of the mixing of many civilisations, and perhaps something of an acquired taste.

“The Aztecs and Mayans may have invented chocolate, but the Spanish added the milk,” Tony says proudly as we eat and drink, tired after our trek.

The Mole Poblano that the waiter brings with a flourish today turns out to be an ocean-liner of chicken swimming in a thick sea of sauce made from chocolate, chile, peanuts, almonds, bananas and even tomatoes, producing a spicy and unexpected cacophony of flavours.

For a brief moment, it is clear that the Aztec peoples whose lives were changed forever in 1519 when the Spanish came to conquer their lands are still there – buried deep in the dishes on our table, in the rich honeyed flavours that we taste and the aromas that drift across the table as we sit and talk of the week and the treatment still to come.

Slightly wobbly after the day’s exertions, we leave the restaurant quietly and emerge into the January sun. In the distance, the hazy blue of the volcano Popocatapetl smoulders gently on the horizon, a trail of smoke curling up into the heavens.

Tony drives carefully through the busy roads back to our apartment block, taking care of his fragile human cargo, as all around us the city of Puebla bustles about its daily business, oblivious to the miracle happening right now inside our veins.

Whether that feathered serpent, the Aztec god of wind and wisdom still watches over his cities beneath the volcanoes, I do not know. Nor do I really know for sure whether our Christian God, the merciful God of the resurrection and the transformation of the body and the blood, is watching over all of us today. All I know is that as we journey onwards in this ancient land of sacrifice, we are yet another step closer to what we hope will be a plentiful harvest of healing new blood.

A delicate situation but not a state of war

HSCT diary day -7


The wind is howling around the fifth floor of the apartment at Inspiralta, mingling with the shrill wail of the police sirens, and the sun streams in from the south. The volcano is quiet. This morning, our apartment administrator Paco sent us a wonderfully understated email suggesting that the 20 or so stem cell transplant patients at Clinica Ruiz this month stay at home today as the situation in Puebla is ‘delicate but not a state of war’.


I had to laugh. States of war are exactly the sort of thing I am not remotely interested in at the moment. I came to Mexico for my health, not to find somewhere that may even be contemplating sliding towards any kind of state of war.


Not that Puebla is. Delicate is a good word for the situation right now. There has apparently been a little light looting of perhaps 10 or even 12 supermarkets over the past few days in the north of the city (probably didn’t feel that light if you were the shop-owner), and an awful lot of public discontent about the overnight rise in petrol prices by nearly 20%, as the Mexican government prepares to stop subsidising fuel and let the market dictate the petrol price from March onwards. It is not proving popular in a country where nearly half the population lives in poverty.


But all of that seems far away, even though it’s happening in the same city, and the same country, perhaps even a few miles up the road. Ill-health is a no-man’s land, where the growing pains in my bones (my new stem cells?) are of far more immediate interest than anything that is happening in the news or even outside my door.


Any ill-health takes you to a country of private introspection and – often – isolation, a kingdom of dysfunction that is yours and yours alone, where the only things that matter are inside. Everything you once took for granted – walking, talking, doing both at once – eating, drinking, speaking – can no longer be taken as read. They become an effort. Knowing where the nearest loo is becomes a necessity.


You rarely even realise at what stage you passed across the border to this kingdom, or noticed the border guards waving you politely through. Until suddenly, one day you realise it may be too late to turn back to the country of the well.


And – as you start to panic slightly – you realise that even if you did have a map back to the kingdom of the healthy, you can’t see the path any more in the twilight.


You trod it day by day, cigarette by cigarette, drink by drink, late night by late night, using all your energy for work or family or play. Yet without really noticing, your eyes grew dimmer by the day, as the nerves were nibbled away, and your legs grew heavier each hour as you walked onwards, oblivious, up that path.


Yet for so long, that growing weariness just seemed part of normal life. Perhaps it was age? Perhaps it was normal. Maybe everyone feels like this? You coped, you compensated. You stopped going out so much, but you still wanted to be part of your family, your workplace, your friends’ lives.


In other words you lived, and enjoyed. And paid little heed to the place you were walking to day by day, without noticing the cost of entry to this new and hostile land, the kingdom of the sick. A war-zone, where the real enemy is inside. It’s in you, inside your body, and now you have to find a way out.


Maybe HSCT is the way back. Perhaps the chemotherapy and the new stem cells that are so painfully making themselves felt inside my bones will instinctively know the way back. Perhaps the map is inside me all along; the route back to better health, or at least a halt to the ever quickening march towards disability.


I don’t know, but I and all the others here certainly hope so. And all we can do is focus on getting through each day. How do my fingers feel – are they numb again today as they touch the keyboard? Yes, they’re numb again, yet they weren’t on the days I had chemo. Why? Are my toes numb again? Only a little, and my feet feel better than usual. But then I’m not trying to walk to work and back, just to prove to my body that I can still do 10,000 steps a day, however long it takes. Why is my head aching? And the sharp pain down my back, perhaps sciatica, buzzing and tingling again?


I am registered with several MS sites, and another one pings in with helpful suggestions about drugs that may do little but will certainly cost lots. But at the moment, I have no interest in finding out what drugs might help with walking, nor in reading about just how ghastly living with MS is (and what products might help). I know. I’d just like my own body, with the help of Clinica Ruiz, chemotherapy and my own stem cells, which I hope are brewing nicely, to sort itself out into something more like normality, and for my immune system to stop eating away at my nerves.


It’s time to go to the rooftop to look at the sunset, and enjoy the sight of the volcano Popocatapetl as it re-emerges from behind the daylight haze. And maybe listen to a symphony of sirens as we sit and chat.

The best thing here is not just the treatment but the people – the other patients, many of whom are blogging their own journeys. All of whom offer a moral support and a camaraderie that I shall miss when we leave. They, we, are all in this no man’s land, waiting to see if the smog clears and the path back to health becomes visible and viable for us once more.

And perhaps then – one day, after HSCT – we can stop living beneath the volcano in this no man’s land, and travel away from the unpredictable eruptions of MS that are sometimes small, and sometimes deadly, in this kingdom of the sick. I hope the path is becoming clearer now as the fog perhaps begins to lift.