Caroline Wyatt’s most important trip
When she finally became too ill to do her job – reporting from war zones for the BBC – Caroline Wyatt had to face up to the multiple sclerosis she had long tried to ignore. When the NHS turned her down for radical treatment, she had one other option…
February 25 2017, 12:01am, The Times
I am writing this on the plane to Mexico. It is New Year’s Eve, the right time to be flying halfway around the world in the hope of a rebirth. This year, 2016, has been the worst of my life, but 2017 just might prove the best.
Outside, the sunset is creeping over the clouds. Inside, my eldest brother, Simon, sits next to me, ready to deliver me to the Clínica Ruiz in Puebla, Mexico, a private medical clinic that specialises in stem-cell transplant treatment for multiple sclerosis.
How, I wonder, have I got to the stage of flying to a country that I barely know, to ask doctors and nurses working in a language that I don’t speak to give me chemotherapy to burn out the malfunctioning immune system within my veins and fill them anew with my own fresh stem cells, in the hope of stopping my MS?
The answer is simple. I am desperate.
For the past two or three years, I have woken up each day as if in a nightmare from which I can’t escape.
What remained of my strength still got me as far as work, but only just. The half-hour walk gradually turned into 45 minutes, then became an hour on the worst days, when moving my legs felt like trying to lift two concrete bollards. Sometimes, I wasn’t sure that my legs or my brain were worth transporting anywhere at all, so exhausted was I when I finally got there.
The connection between my brain and my body was malfunctioning badly as my own immune system gnawed away at the myelin sheath surrounding my nerves, mistaking it for an intruder.
It had gone from a background irritation to a serious disability
That meant that my MS had gone from being a background irritation that I could just about live with, to a serious disability that meant I would sleep for 16 hours at a time at weekends, trying to recover from the working week.
But I was stubborn. I would not let MS take away the job that I loved. I changed roles in 2014 from covering defence and war to covering religion, a job that had traditionally involved a less hectic schedule. Yet often, it seemed there was little difference.
The very month that I changed jobs, in August 2014, I travelled to northern Iraq to cover the plight of the Yazidi, forced from their homes by Islamic State.
For two weeks, our small team worked 18-hour days. I was sick with sunstroke and a migraine that would not go away, but even then, the story was – as it always had been – the only thing that mattered. My own health could always wait until I got home.
The view from Caroline Wyatt’s roof terrace in Mexico with the volcano Popocatépetl in the backgroundCourtesy of Caroline Wyatt
Until suddenly, it couldn’t wait any more. My personal apocalypse dawned in the spring of last year. On a trip to Israel I could barely find the energy to function in the desert heat, and lay for once wide awake in bed at night wondering how much longer I would be able to work. The drugs that I was by then taking for MS did little to help. The trip was part of my work as BBC religious affairs correspondent, but it proved to be almost my last in that role.
Not long after my 49th birthday last year, I woke up with the worst MS relapse of my life – worse than the one in Moscow in 2002 that saw me collapse at the feet of the puzzled but patient British ambassador.
Despite the many relapses, it took almost 25 years to be diagnosed definitively with MS, in November 2015. The disease is a slippery bugger that can be hard to pin down, and the symptoms can resemble many other illnesses, such as chronic fatigue or indeed hypochondria, to which I suspect at least some of my GPs had ascribed my symptoms.
This final reckoning came on the evening of May 11, 2016, when I fell over in the street in London and could not get up again.
Next morning, the symptoms were unmistakable.
I looked up from my pillow and saw two blue lampshades on the ceiling above me, where there should be only one. I shut my eyes and looked again. Still two. And again. Two. I had double vision, a common symptom in an MS relapse.
I tried to get out of bed, but there was no strength in my limbs. My brain willed them to move, but they didn’t. Couldn’t. I wept as I tried again to sit up on the side of my bed and failed.
The clinic was in Mexico. Friends shared their fears that I might be kidnapped
I howled with grief for all that I had lost, and all that I feared I was about to lose: perhaps my job, almost certainly my independence and, above all, my future.
I had finally, after many years of a quite successful strategy of almost total denial that I was in any way properly ill, realised that life could not go on as it was.
The regime of work and sleep was no longer sustainable: my body and my brain were breaking down, despite the MS drug I was by now injecting into my reluctant flesh three days a week.
That realisation had begun to dawn in April, when a kindly NHS nurse told me that, at our next appointment, she would teach me to self-catheterise, as MS began to gnaw away at vital functions such as bladder and bowel control and swallowing.
But then I saw my colleague Fergus Walsh’s Panorama programme.
It showed the stem-cell transplant treatment being carried out at the Royal Hallamshire Hospital in Sheffield by neurologist Professor Basil Sharrack and haematologist Dr John Snowden – the British arm of a global medical trial overseen by the stem-cell daddy of them all, Dr Richard Burt in Chicago.
The stem-cell transplant would mean having several rounds of chemotherapy to knock out the misbehaving T and B-cells within the adaptive immune system, then harvesting my own stem cells after encouraging them from within the bone marrow, followed by more chemotherapy.
Finally, the stem cells would be transplanted back into my veins, where – if all went well – they would form a new immune system, without the faults of the old.
The team at Sheffield agreed to see me and, with hope in my heart, I began having tests there in June to see if I was suitable.
I didn’t qualify under the strict trial criteria, but hoped they might still be able to offer me treatment. Surely I must be a good candidate?
My 85-year-old dad travelled with me to Sheffield on the train. I could no longer drive, because my brain had been unable to distinguish distances for some ten years. It’s the reason I stumbled on stairs, while the constant dizziness in my head meant I could no longer rely on my sense of balance.
Dad sat patiently reading his newspaper as, behind the curtain, nurses inserted a fine needle into the base of my spine for the lumbar puncture that would show for sure that I had MS.
The MRI brain scan had already shown fresh lesions in key parts of my poor, faltering brain. One on the brain stem explained why I had lost my sense of taste, and was having problems swallowing.
But in November, in a kind but regretful email from the hospital, I found out that I wasn’t a good candidate after all. No inflammation could be seen around the lesions on my MRI scan, a marker that the doctors at Sheffield needed to be sure that my MS was still active and inflammatory and so might respond well to haematopoietic stem cell transplantation (HSCT).
It certainly felt to me as though my MS was the only active thing about my brain and body, as I lay in bed that day, unable to work full-time any more.
I could no longer read novels, because the words fled from me, tittering as they scattered nonsensically. I could no longer watch TV, because the images moved too fast and jerkily for my kaleidoscope brain to make sense of them, leaving me feeling sick and disorientated. Nor could I listen to music, because the layers of my nerves felt so thin that any melody made me weep uncontrollably.
I decided (as I stared up at what had thankfully become just the one light fitting on the ceiling above my bed) that I would pursue a stem-cell transplant elsewhere. It was my only hope of regaining a future that didn’t involve a catheter and remaining in the safety of my bed for the next 30 years or so.
I had learnt from several HSCT groups on Facebook that the treatment was being offered privately in Moscow and Mexico by clinics expert in conducting stem-cell transplants for MS. It wasn’t available privately in the UK at that stage because I didn’t fit the criteria demanded by the NHS, although it is now.
One autumn day I went to meet Mindy Watt, who’d had a stem-cell transplant in Moscow, and was roughly the same age as me, with a similar history of MS. She now spends her time – unpaid – helping others on Facebook, offering advice and wisdom to those wishing to have HSCT. Over lunch at St Pancras station, she explained the process and how it had helped her regain her ability to walk, her life and her mind. I left convinced that a stem-cell transplant was the only thing that might give me hope of recovery.
I just needed to raise some £55,000 for the treatment, and work out which clinic might be best. Close family, friends and even colleagues offered to help immediately. One friend started discreet crowd-funding to ensure that I would have a further £6,000 for the specialist cancer drug rituximab on my return. While the Mexico clinic recommends top-ups of the drug every two months after HSCT, the NHS does not prescribe it for MS.
I had never managed to put aside that much money, never thinking that I would need it for medical care because I believed I could always rely on the NHS.
Stem-cell transplants are only gradually gaining acceptance within the wider medical community in the UK for use in autoimmune disease, despite the fact they have been carried out for MS since 1996.
In Chicago, Dr Richard Burt, one of the main pioneers of HSCT for autoimmune disease, has halted the progression of MS in some 80 per cent of patients for at least five years. HSCT can even reverse the damage done by MS for some, although I was well aware that I could also be among the 20 per cent or so who don’t respond to HSCT at all.
In November 2016, I applied to Clínica Ruiz in Puebla, Mexico, despite the concerns of some of my family and friends. A few emailed me with news items about killings in Mexico, and helpfully shared their fears that I might be kidnapped and force-fed cocaine.
The clinic emailed me back within a day to say I had a date for HSCT in June 2017. Was I doing the right thing? Several doctors had cautioned me against doing something so radical, advising me to try more drugs first to see if they worked.
But I didn’t have the time to risk further relapses. I knew that I had to do something drastic fast, or face a rapid decline that might leave me unable to walk, work, love, laugh or enjoy life in the coming years.
Might I die as a result of this treatment, as one GP had warned me? Unlikely. The theoretical mortality rate of HSCT in Europe is down to well below 1 per cent. And while the risks after a stem-cell transplant of contracting another autoimmune disease or the reawakening of other viruses do exist, so far not a single one of the hundreds of international HSCT patients with MS at Clínica Ruiz has lost their life as a result of the treatment. The same goes for the 600 or so MS patients treated by Dr Federenko in Moscow, not to mention the ever growing numbers treated in London, Sheffield, Chicago, Israel, Sweden, Germany, Italy, Spain, the Philippines, Canada and elsewhere.
This is no longer an experimental treatment. Again and again, centres of clinical excellence around the world have shown that HSCT works, even if the National Institute for Health and Care Excellence (Nice) and the NHS are slow to be convinced.
Then, out of the blue in December, I received an email asking whether I would like to take up a place at Clínica Ruiz on January 1. Another patient had cancelled.
Which was how I found myself on a plane to Mexico on New Year’s Eve with my brother Simon, clutching a more recent MRI scan that did show inflammation, which I’d paid to have done privately, and a fistful of dollars and pesos.
I’d sent that latest scan on to Sheffield, where they very generously offered to reconsider my case. But it was the day before Christmas, and I’d already paid Clínica Ruiz and made up my mind to go to Mexico.
The flight there felt oddly like a work trip. The past 23 years of my working life had consisted mostly of getting on planes, carrying dollars, a few clothes and some recording equipment, with little idea what the next few weeks would hold.
But each trip for work – whether as defence correspondent or a foreign correspondent based in Moscow, Paris or Berlin – was a privilege and an adventure, sometimes a dangerous adventure. I’d accompany British forces on patrol in Helmand, where one wrong step could lead any of us to an improvised explosive device laid by the Taliban.
Landing in Mexico, I felt a different kind of fear of the unknown. What would chemotherapy be like? How would I respond to having a thin plastic CVC (central venous catheter) line inserted into a vein in my chest to help harvest my stem cells and put them back in again?
My fears began to ease when Angel, the driver from the clinic, and Yoselim (known as Joy), the Mexican nurse who would be looking after me for the month, stood waiting at the airport to drive us to Puebla, a city some two and a half hours southeast of the urban sprawl of Mexico City.
Joy had a kind face and a gentle manner; Angel was happy to answer all our questions.
I was the only one in our group to be sick, constantly, for every single day of chemo
Nobody had cocaine, kidnapping or organ theft on their mind, and when Simon helped me and Joy move into our apartment the next day at Inspiralta, in the south of Puebla, I felt immediately at home. From my bed, I could see the volcano Popocatépetl against the horizon, a small puff of smoke emerging into the bright sky.
The next day was a blur of medical tests, to make sure that the 20 or so international patients were fit for the treatment, and had no cancers or heart disease lurking undiagnosed. We were divided up into groups of five patients, plus five carers – the exact number of people who could fit into the minibuses that would take us to and from the clinic each day.
Our group all passed the tests, and a few days later, my merry band of five patients from England, Kenya, Norway and the US all began chemotherapy, sitting chatting, texting or watching films as the sweet poison dripped into our veins.
I was the only one in our group to be sick, constantly, for every single day of chemo, with Joy leaving the flat with small black plastic bags for our journeys to and from the clinic.
Soon, it was time to have the CVC line put in at a local private hospital, and I awoke groggily to find that it wasn’t that bad after all.
And then, on the 15th day, it was time for the stem cells that had been harvested and popped into a fridge overnight to be put back into my veins again, via that line in my chest so close to my heart.
That night, I stood on the roof terrace of my apartment block and watched the most spectacular sunset I have ever seen, as the sky deepened to a dark purple over Popocatépetl.
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 would 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 at the volcano, either too tactful or too entranced with the view to notice.
That day, I knew I had been granted a second chance of life. And whether you credit the genius and generosity of God or nature, science or mankind, I had received back my own new stem cells just after 1pm in a very unremarkable small white room on the ground floor of the Clínica Ruiz, to the accompaniment of middle-of-the-road rock playing gently in the background. Not even £55,000 can buy you the appropriate soundtrack for your stem-cell transplant. And every single second of that vigorous ruby fluid coming back home into my eager veins felt like a miracle.
Only the inconvenience of being hooked up to the immovable plastic tubes by the CVC line still firmly entrenched in my chest stopped me hugging Martin Ojeda, the smiling biochemist in charge of my rebirth, as he 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, filling my veins like drops of rain on a parched land.
I savoured every single second, because what was filling my veins and my heart in that room was also hope.
Then the young bearded haematologist, Dr Manuel Priesca, who worked with the skill of a high priest of blood and had the toned muscles of a demigod, came in to take away the CVC line.
My stem cells were filling my veins like drops of rain on a parched land
It was the weirdest sensation: first I could sense and hear the snip of the stitches coming out of my chest. No pain. And then I couldn’t bear to look, but I could feel the 20cm or so of thin tubing being pulled very gently out of my chest from the vein just near my heart – every single centimetre slithering out, like a tiny helpful serpent wriggling its way out of my body after its 4-day sojourn.
Then, just as suddenly, it was done. The moment I had worried about for so many months was over. I walked back into the waiting room at the clinic, the last of our group’s five “stem-cell sisters” to be reborn.
A cheer went up from Ann, Leila, Charlotte and Marion, as it had for each of us as our new stem-selves emerged.
And with the return of those stem cells came a sense of gratitude such as I have rarely felt before. It took me that night after the remarkable sunset to a quiet Catholic chapel to give thanks with all my heart and soul.
A whole vista of possibilities opened up again for me that day, after many years in which my horizon had become ever smaller as my life and my future were diminished by the fatigue and fog that never lifted.
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 down the line.
Dr Guillermo Ruiz-Argüelles, the senior haematologist at Clínica Ruiz, says that between 15 and 20 per cent of his patients feel an immediate benefit, while most will respond within 9 to 12 months, with improvements possible for up to 2 years. So for me, that response should become more obvious sometime between October and December, if I am careful during my convalescence and suffer no setbacks.
Yet already I can feel that the fog within my brain is lifting. I am less stiff when I wake up in the morning. My eyes hurt less. And now that I am at home, convalescing, my unyielding body feels a little more responsive to my brain’s commands each day, although the tinnitus that has plagued my waking hours since last June is still there, hissing away like an unwatched TV in the early hours.
I have done little but sleep in my first weeks back home, and eat the chicken soup and beef stew that my dad and my beloved wicked stepmother Wendy (WSM for short) bring to my door like sacrifices for some idle Mexican god.
They wave from the stairs, and I wave back from my door, from behind the blue surgical mask that will magically keep the germs away until my new immune system matures. Or so I hope.
This second week, I shall start to stretch each limb slowly every day on my sky-blue yoga mat, looking out not at Popacatépetl, but at the grey London skyline.
Is that numb arm a sign that the MS is back? Is that a tingle down the thigh?
I shall teach my limbs to work again as they should, feeling my way gradually, much like a baby does. I shall reach out to show my feet that my toes can curl again, and test holding things to show my fingers that they can grip firmly once more. And one day, I shall replace all the glasses and plates that I have smashed because I couldn’t keep hold of them. Once again, my arms and hands seem to know where they are in space; the problems of proprioception are almost gone.
Today, I even went for my first slightly unsteady walk outside, still wearing my blue surgical mask lest any passer-by cough their cold or flu or norovirus at my newborn immune system, and wielding my cane, just in case of dizziness.
It will be another few months before I can see friends again, and six before I can go out normally, or eat food prepared by other hands in a restaurant. And perhaps four months before the duckling down fluff that barely coats my bald head turns back into hair.
Yet already, my legs feel less heavy. The dead weight pulling them down has magically lifted, and my arms, although weak, no longer have useless, numb yet painful fingers at the end of each hand that cannot do up buttons or hold a pencil to write.
I notice as I type today that my left eye no longer blurs so much.
But whatever happens to me, at least I shall have tried. Nobody really knows yet why a stem-cell transplant works so well for some and not for others, although the medical research suggests that the earlier HSCT is carried out 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 tend to have the best outcomes, although some patients classed as secondary progressive can also do well.
This treatment could still go wrong for me.
My new blood must be monitored carefully for several months. HSCT can increase the risk of heart or thyroid problems, a secondary autoimmune disease and depression, not to mention damage to the mouth and digestive tract. Catching a simple cold, flu or food poisoning is far more serious for an immature immune system, while sepsis can kill fast after a stem-cell transplant.
Months of convalescence and quarantine lie ahead: six months of avoiding raw food, cafés, cinemas, crowds, swimming, pollen and soil, and no travelling on planes, trains or buses for at least three months.
All are things that could prove toxic to my infant cells. Including, I note to my delight, open-plan offices, where hundreds if not thousands of people converge every day, merrily bringing with them all their bacteria, fungi and viruses from home or their child’s school, touching desks and telephones and keyboards and breathing out germs without a second thought. I often uncovered what might one day have become new antibiotics growing in the mugs that some of my colleagues left to fester on their desks.
So perhaps I may work from home to begin with, on the stem-cell documentary I am making for Radio 4 that will look into the science and examine how far along the road the NHS is towards accepting HSCT as a standard treatment for MS.
I’m still due to attend my NHS “Learning to be a better disabled person” class. They don’t actually call it that. The official title is something like, “Learning to live with increasing disability”. I am hoping to be able to attend if only to say that it is no longer always necessary to live with increasing disability with MS.
HSCT may well offer others that same hope that I now have coursing through my veins.
The coming months of convalescence will not be easy, as the mind and body worry and niggle. Is that numb arm a sign that the MS is back? Is that a tingle down the thigh? Is that brain fog going to clear?
Yet I’ve rarely felt so alive.
Because living with MS was killing me slowly, day by day, silently stealing away my brain and my nerves, everything that made me “me”. More recently, it had begun to nibble away at my soul. It had even started to take away my voice, the voice that I had taken for granted in my job, hoarsening and coarsening it until it could no longer be relied upon.
MS was starting to silence me.
Life is a risk. And for me, HSCT was a risk worth taking.
And so, with joy, to bed, taking my one-month-old stem cells for the sleep that they deserve. This new immune system will be cherished like the newborn that it is. I am relishing this second chance of life.