Puebla Day -4 A sky blue Volkswagen

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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?

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15 thoughts on “Puebla Day -4 A sky blue Volkswagen

  1. Dear Caroline,
    1)
    I am learning so much about MS from your blog, thank you.
    2)
    All that words stuff has paid off, you write beautifully.
    3)
    You will be in my thoughts as you go through your treatment, specially the next few days.

    Good Luck.

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  2. Hi, Caroline. It’s Mark here, Caroline’s husband.
    I so look forward to reading your blog, so eloquently written. It had me in tears when you said about the TV and radio being difficult to watch and listen to – it brought back memories of how frustrating that was. At times of illness they normally provide a safe haven and a chance to escape the harsh reality of life – it’s so cruel this MS takes away that one pleasure.

    But that is just memories now, fortunately.
    I wish you all the best in your journey, you’ve made the right choice to say goodbye to MS.
    Mark

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    1. Dear Mark (and Caroline) – am so so glad that HSCT worked for you as it did, and it was lovely to meet you up in Sheffield! It’s definitely not an easy path to take, but think the potential rewards are so enormous that the tough bits are worth it. I owe Caroline an email, so more from me on another day when I’m not feeling quite so PICC-lineish!! All the very best to both of you. Cx

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  3. Until I read this part of your blog I was beginning to doubt my reasons for even thinking about having this procedure done when I am so mildly affected, but you have reminded me of the reason – the uncertainty of the future and what this nasty disease may have in store for me. Thank you 🙂
    I wish you all the best with the insertion, stay strong! x

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  4. What a great read! It walked me through every emotion you described. It is sad how many people pass on HSCT because they are scared. I’m glad I didn’t accept my diagnosis. I’m glad I went to doctor google 😄
    DMD’s put you at risk too and you have to be on them for life with only a small percentage of chance to slow progression. Good luck with your picc line insertion 🙂

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  5. Dearest Caroline Internet off here for two days so just caught this latest amazing brilliant blog. By now I know that you got through the catheter insertion with your insurmountable fortitude so I am praying for a TOP harvest . God bless and protect you y que Nuestra Señora de los Remedios te cuide . xx

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  6. This is an amazing story of your journey.
    I wish you lots of luck,the hospital staff are just as professional and kind as those in the clinic -you will be fine

    Like

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