Puebla Day -2 Stem cell harvest day

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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.

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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.

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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.

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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.

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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.

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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.

ENDS

7 thoughts on “Puebla Day -2 Stem cell harvest day

  1. Wonderful read, thank you. As fellow MS’er, I want to thank you so much for doing this fabulous blog, it will help so many people not only understand the condition, but also increase awareness of the possibilities for treatment.
    May I ask why the stem cells are dated ‘best before 23.12.2016??

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    1. Thank you! The BB date on the stem cells also made me laugh. A) it was wrong and B) I really didn’t know they had a sell by or use by date. I suspect that the machine that prints the labels has the wrong date, but that nobody cares as long as the patient’s name is right. Because Clinica Ruiz harvest and give back your stem cells here within a week, they’re not frozen, which is unusual in stem cell transplants. And as they’re kept on the premises (though a small number of everyone’s cells are first sent off for checks at the Mexican national blood donor register to make sure you don’t have any major communicable diseases) I suppose it doesn’t matter if the date is a little off, as long as the stem cells are not! 🙂

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