DBS Diary 12: Well, what did you expect?

Much of the talk among the scientific and medical communities centres on expectation management in DBS. What does that mean? I think it means more than anything keeping one’s feet on the ground. It’s very easy to believe when you listen to others who have had DBS that this is a cure. It isn’t and let’s be quite clear on that point. DBS will ameliorate some mainly motor symptoms to a degree that depends on where you are within that window.

Window? Yes, window. DBS is not universally helpful. If you are at too early stage in your Parkinson’s, you may not experience real benefit. If your symptoms are largely minor, you may not derive full value from DBS. Conversely, if your symptoms are well advanced and severe, again there may be too little functionality remaining to be improved by DBS. You need to be somewhere in that window – not too soon, not too late, not too trivial, not too severe. It takes the skill of a talented neurologist to assess your position within this window of opportunity. Some are not even offered DBS and leave the physician’s office fed up. Others are sometimes offered DBS unexpectedly, flapping about like fresh halibut over a choice they had not previously considered.

My initial assessment for DBS took place some while back and I was pleased to be found suitable. Then somebody sneezed in eastern China and the world changed. I’m treading carefully here. Some 150,000 people in this country lost their lives so I am a little wary of complaining here, against that backdrop. But the long and the short of it all is that by the time my number came up, more than a year had been lost to Old Father Time and I was beginning to see that window closing.

This is a bit of a roundabout way of saying that my expectations of the procedure were relatively low. I did not expect to be cured or to experience anything like a cure. Younger friends of mine who had taken the electric journey had spoken of liberation from the daily tyranny of drugs. All very exciting.

But I’m a man in my seventh decade and have learnt that life can be a bit of a disappointment at times. So my expectations were perhaps modest, in many ways mitigating loss rather than emphasising gain. When asked explicitly what my expectations were I must have left the surgeon wondering why I was bothering. I wanted to have less tremor, and a bit more sleep. But top of my wish list was to not lose my voice or slur it to the point of unintelligibility. I rely on voice recognition software to communicate with the world. I hardly ever type anything these days. And reading my handwriting is a challenge of Herculean magnitude. So if the computer cannot understand me I am in a little bit of a pickle. Because I still think I have lots to say. Many of you, particularly my children, may see it differently.

I had the operation a little over three weeks ago. So by now brain swelling will have diminished and the electrodes should be in their allotted locations stimulating away happily. In other words, any effects I see now should be representative of the general pattern. I should add at this point that we are using stimulations that amount to less than 20% of the total deliverable current.

So first things first. Does the computer still understand me? The answer is a strong affirmative and one which has largely caught me by surprise. Since coming out of hospital my speech has been clear and unambiguous. Not only that but the volume has been higher. Friends briefed to expect a slurred stumbling Jon have largely found the opposite. Most have commented favourably on the clarity of my speech compared with the mumbling that passed for speech in my pre-DBS days. Loud and clear is now the order of the day! Victory for the electricity.

What else? Sleep – I have now been home from the hospital for 16 days, sufficient duration to begin to draw some conclusions about the effect of DBS on sleep. This too has surprised me. As those who have read this column over the last few years are aware, I sleep very poorly, scraping together fragments of sleep where I can. Not now. I’m reluctant rather to talk about it for fear of jinxing its salutary effects. But nonetheless I seem to be sleeping at least an hour a night longer than I have previously. Even when broken I find it easy to go back to sleep. For insomniacs like myself this is uncharted water. And I love it. Two out of two for those happy little electrons.

Tremor? I’m saving the best till last. Picture the scene – I covered it in my first ever book about living with PD (“Slice of Life”) – . Grated Parmesan. Give me 30 seconds and I can turn a plate of spaghetti into a winter nativity scene. A bowl of soup becomes The Poseidon Adventure. And so on. Holding a teacup has the floor awash with Darjeeling within a second or two.

Not any more. My hands are rocksteady. I would probably even pass a lie detector test this. They move when I command them but not otherwise. And this means more than simply targeting an espresso to one’s mouth instead of face. I know tremor will one day return at some point long in the future I hope but for the moment I’m happy to wish it bon voyage. This newfound stability has of course robbed me of one of my little party tricks but this is a small price to pay.

Teacups are just part of it. If my hands are steady, I can read a book. And if I can read a book, I can read articles, commentaries, even my own books (and I’m ashamed to say that I do sometimes do exactly that). It has been more than five years since I was last able to hold reading matter steady enough that I could make sense of it. That’s a long time. I have so much catching up to do.

It’s not just reading. One of my passions is photography. For many years I have taken blurred, distorted images, like ghosts in the mist. Even compromising with laughable film speeds, clumsy camera grips, releases and tripods, the results have been pitiful. But not any more. My new steady hands are probably, and here’s the funny bit, better than they were before I was diagnosed. Of course, now that I can take crystal-clear, razor-sharp photographs I’m beginning to miss the misty ghosts. And there’s no excuse now. People used to make allowances for my rubbish photographs. Now there is no hiding. The whole world will know that I am crap at photography.

If we are talking still about expectation management, how can I fail to be happy. I said, going in, that these were what I hoped for. And I feel that the Christmas fairy has granted all three of my Christmas wishes.

DBS Diary 11: The day of surgery

Okay, this is out of sequence but I thought I would tell you roughly what I remember of the surgery for DBS. I don’t know whether you will find this reassuring or unsettling so I will throw in the usual scattering of caveats – if you don’t want to know the score look away now.

We are four in the ward. Adjacent to me is Mark, who has Multiple Sclerosis incidentally but, more specifically, has had a brain tumour removed. A gentle mild man with kindness and generosity of spirit where you might have expected him to rail against the injustice of life. A model patient. Not surprisingly the physiotherapists love him. Whatever they ask of him, he does. Determined to make progress and almost infinitely courageous. I salute him. Diagonally opposite me is Terry. An engineer by training, he has had DBS surgery exactly a week before me. I watch him closely for signs of improvement – a bit like skipping ahead in a novel. Lastly there is Joshua, a Nigerian with a tendency to grumpiness. When I discover that he has a spinal tumour which gives him almost constant pain, I try to be a little more accommodating. It turns out that he is also a painter (artist not decorator) and has painted some very stylish African scenes. Nor is he the only artist amongst us. Terry is a wood turner and makes beautiful bowls from maple, pear, ash. I make a mental note to speak to him in more detail. [I have since purchased a rather beautiful 18″ bowl in maple].

Surgery day begins at midnight when they withdraw all fluids. Not a major hardship except for the fact that hospital wards are, in my experience, rather overheated so your lips tend to dry out I am told. Speaking as someone whose skincare regime is, to say the least, cursory, I am unaccustomed to applying lip balms and so on.

I sleep poorly anyway and obviously the anxiety of impending surgery contributes to that. I finally fall asleep around four only to be woken by one of the nurses trying unsuccessfully to insert me into a pair of flight stockings. At some 84 kg (me not her), this is never going to happen. She summons Kingsley, a strong Kenyan this who completes the task with a flourish. I head to the shower to complete my ablutions, consisting of Hibiscrub top to bottom. Literally.

I can see the tagline – “Hibiscrub, because I’m worth it”.

A little after 8 o’clock the porter arrives to take me down for my operation. He chats briefly with the ward staff, even going so far as explaining the minutiae of my upcoming procedure. He seems very knowledgeable about modern neurosurgical practice. It finally dawns on me that he is not a porter but, in fact, the professor of neurosurgery. “Yes” says one of his registrars “he likes to pretend”.

In a strange sort of way it is reassuring. We chat at ease for several minutes. It turns out that he trained with Prof Peter Richardson who had the office four doors along from me when I worked in the anaesthetics department at “the London”. Small world. For those who would like to meet him, this is my neurosurgeon, doing a TED talk.

https://youtu.be/qqH2a3BcAFI

For those of you unfamiliar with a neurosurgical operating theatre (and I hope that’s most of you), the first thing that impresses you is the sheer number of people. About as many as would crew a Flying Fortress. It’s all bustle. I seem to remember around ten people busying themselves with pre-flight checks so to speak.

Brief introductions – I will never remember their names – and smiles. “I will just get into my pyjamas and we’ll get going” says Prof Z. Funny, I use theatre scrubs as pyjamas at home too.

It is one of the most dislocating aspects of general anaesthesia that one has no sense of the passage of time. I remember the anaesthetist implanting an arterial line because “Parkinson’s patients have autonomic instability and notoriously variable blood pressure”. My next recollection is of a nurse gently whispering sweet nothings to me in recovery. I reach up to my head and feel hair rather than stitches. Obviously they have shelved the procedure because of some as yet undisclosed problem. They have not even shaved me.

The nurse tells me sharply to leave the staples alone. I am confused. No time has passed yet the clock in theatre shows 4 PM. I have lost some eight hours along the way.

A porter takes me back to the ward. Evidently Prof Z has come through his career crisis and decided he prefers to be a neurosurgeon after all.

I remember making some feeble efforts to telephone the family but cannot even remember how to unlock the phone, so groggy am I. I probably make no sense at all… Don’t say it!

Just then the dinner trolley arrives. I struggle to remember what I have requested. Not that it would have mattered. Hospitals are not known for their catering and one beige slurry is much the same as any other. Many believe that hospital catering is there to discourage long-term bed occupancy. And in that role, it performs admirably.

By Friday I am much improved. As are my other fellow inmates. Sorry, patients. In one fell swoop, they are all discharged leaving me alone over the weekend.

This turns out to be one of the stranger experiences – a little like being in a holiday camp out of season. My table is piled high with newspapers and magazines. The Observer, the Guardian, the daily Mirror, and others. More reading than I can possibly need. Their choice of reading matter seems pointed. Time Out (particularly ironic since I cannot spend any time out, National Geographic Traveler (as if they hadn’t made their point already) and finally Countryside magazine (all of which is beginning to look deliberate).

Queen Square is deserted at the weekend. The usual bustle of taxis and ambulances is quiet. Like a ghost town. Obviously I failed to notice the zombie apocalypse.

By Monday I have negotiated my parole (sorry I mean discharge) and I am released into the tender mercies of Joe, the taxi driver to take me home. A man of few words but a penchant for speed and evidently in the process of making what appears to be an attempt on the world land speed record for a Mondeo. And to think that I was afraid of the surgery!

DBS Diary 10: First thoughts from the other side

I have a million things I want to say so I need to ration them, such has been the cascade of thoughts, ideas, notions and so on. Thoughts pile one on top of the other in an ejaculatory explosion of words. A good thing surely?

Well, not necessarily. So intense is the tsunami of euphoria that it is easy to be carried along bobbing like flotsam among the waves as brains long since unaccustomed to such tidal waves of emotion are swept away.

Herein lies the danger. As I start to feel the warm waves of euphoria washing over me I am soon on my. Euphoria is a siren, (no, not that sort of siren), a summoning of emotion, a conjuring of darker happiness from the amygdala, that deepest and most ancient part of the brain, source of decisions and emotions.

And this is the crux of the problem. Emotions and decisions make very poor bedfellows. Decisions made upon a crashing wave of emotion do not sit well with rational, logical decision-making.

Take it from me. I have been there. I have seen those brilliant ‘decisions’, forged in the foundry of happiness, those impulses, nameless drives and urges, inarticulate primal voicings, intoxicating siren calls all

DBS in those early euphoric moments is that narrow channel between Scilla and Charybdis, where a momentary navigational infelicity spells oblivion.

My neurologist, and a man I would trust with my life (as indeed I now do) made the point well to me. Be on high alert for unusual behaviour. Do not fall prey to the wrong kind of life saving decisions. Vacillation is, for once, better than decision. That’s all for now. But there will be more. Much more.

DBS diary 08: See you on the other side.

Around this time next week, if all goes well, I will have two electrodes implanted deep within my brain, positioned stereotactically into the subthalamic nucleus. One on each side. I’ve outlined other possibilities in previous blogs but now is the time to put those transient fears and largely unfounded misgivings to one side. Now is the time to focus on success, to clear my head of negatives. Like Owen Farrell lining up a penalty, his eyes burning with intensity as the visualises the path of the ball over the bar. It is my time to be a Zen master, to blot out all unwanted thoughts and to channel my energies into visualising that success.

So with that in mind, this will be the last blog before surgery next week. The last staging post before those broad sunlit uplands I’ve been promised. So let me.a few ‘i’s and cross a few ‘t’s.

My letters are written. And placed where they will be found if needed. And that in itself has been cathartic, a chance to put on paper my feelings and beliefs in my own words rather than in the clichés where sentiment normally skulks.

I’ve been asked many questions over the last few weeks. Some trivial, housekeeping almost, others almost philosophical. Let me answer some.

Am I afraid? That’s an easy question to answer but not one that can be nuanced easily. Yes I have some fear. I worked for many years in the anaesthetics department of one of the London hospitals so I know well enough how badly things can go when circumstances turn against you. But I also know that we do not celebrate the routine. The vast majority of successful procedures make no headlines. And the vast majority of procedures are successful. So am I afraid? I will probably have butterflies but I hope that’s as far as it goes.

Am I prepared? There are two ways of answering this. In the simple, pragmatic assessment – have I packed my toothbrush, razor et cetera – the answer is no. I’m still thinking of things each day that I might want and need in hospital. In the normal run of things one could ask friends and relatives to bring anything I’d forgotten. But in these current coronavirus times, visitors are forbidden. In any case my surgery is not taking place in my hometown. So visitors would be few anyway.

Am I mentally prepared then? I’ve had a lot of time to think about the future and what to expect. I’ve addressed all the possibilities, all the potential outcomes and consequences. Yes, I believe I am mentally prepared for the post DBS period. I don’t kid myself for one second that it will be plain sailing. I have seen enough of the inside of hospitals over the last several years to know that you are not left alone for very long. There are always assessments to be made, measurements to take, questions to answer. An endless parade of nurses, surgeons, anaesthetists, neurologists, phlebotomists, physiotherapists, psychologists, psychiatrists and who knows what else crowds around you. And medical students as well. and let’s not forget Gladys, who brings you that first cup of tea in the morning.

Why did I choose DBS? I don’t know that I really did choose it as such. In a way it chose me. I’ve had the condition 15 years and, for the most part the drugs been effective. As each year has passed, the doses have been increased, that mental accelerator pedal pressed a little bit harder, the brain running a little faster. You cannot achieve benefit without significant side-effects – you freeze, glued to the spot, when you want to move. And you thrash, arms windmill-flailing, when you need to be still. Eventually you reach that terrible point where you cannot walk without gyrating, grimacing and groaning. And by then you know it – you’ve run out of road. So you don’t really choose DBS. Eventually it’s your only real option.

Yes there are other experimental treatments. Let us not forget that DBS itself was considered experimental until as little as a decade ago. And to reiterate my oft repeated mantra “there has never been a better time to have Parkinson’s”. Treatments now are better than they were five years ago. In five years from now they will be better still. Neuronal growth factors, injected directly into the brain, although short on proof, have strong supporters and may yet, in one form another, prove successful. Neuroprotective agents may buy more time, delaying the point where you realise you’re out of road. Surgery by ultrasound or by gamma knife may replace the good old-fashioned scalpel and saw. This could even be the last generation of conventional DBS, with electrodes connected to wires and thence to batteries. In the future there may be other ways of tickling neurones. But for now, this is the best we have. So I’ll take that.

Am I excited? Yes, in a way I am. And I’m aware that the feeling is probably inappropriate. I want the operation to be over with. Somehow I see that as the endpoint whereas it is of course the beginning not the end. The end perhaps in as much as a goodbye to my previous shaking, stumbling self. But really the beginning of what I hope will be a better life.

Funnily enough I have been thinking a lot recently about Apollo 8, the first mission to go round the moon and return safely to earth. The mission control team had done all the calculations. They knew that the capsule would successfully enter lunar orbit and that it would re-emerge from the far side. Still, there was 30 minutes in which there was no communication from the spaceship and no way of knowing if it had been successful. A period of anxiety perhaps until Apollo 8 emerged from the far side to a mission control, shrieking and shouting with joy.

Just the same here. Wish me luck and I’ll see you on the other side.

The travel bug: 1. Past times

There is nothing quite like two years of virally imposed seclusion to rekindle an appetite for travel in even the most jaded traveller.

I love travel, whether it be for business or pleasure, for education or entertainment, for duty or for none. It’s all travel and, in its own way, a piece in that jigsaw of experience. It’s what makes me me and you you.

I loved family holidays, our kids splashing in the pool while we sat on the terrace, drinking Kir, screwing our eyes against the sunset. But I also cherish those solitary moments that nobody else can share or would wish to – when I stood by the Spangler Farmhouse where General Lewis Armistead died on July 5, 1863, along with nearly 200 other Union and Confederate soldiers. I could almost smell the gunpowder. I remember walking the length of the Zeppelinhaupttribüne in Nuremberg, unable to take that one step forward onto the dais, so strong was the aura of evil. I have felt goosebumps beneath the window of the Festspielhaus in Bayreuth, where Hitler waved to the crowds in 1940. Places sullied by evil but places nonetheless I had to visit.

Childhood holidays still come to mind in an instant – long drives in the Magnette and “are we there yet?” Minehead, Cornwall, sandcastles and starfish. Catching crabs in rock pools. The ozone smell of the beach and the sand between my toes. Dogeared postcards and sun-bleached ice cream stalls. Seaweed catching round my ankles as the tide washed over my feet.

I loved aeroplanes and going to the Finningley airshow with my dad when I was six, marvelling at the acrobatics of the aircraft so near to the crowd in a way that health and safety has long since precluded. We watched Victors and Valiants, Vanguards and Vulcans. I remember my rib cage rattling to the sound of the six Vulcan scramble that always finished the show. Magic.

I loved flying long-haul in 1966 and 1975 to stay with my aunts and uncles, all émigrés to America and Canada. Niagara Falls – “fortissimo at last” as Gustav Mahler famously remarked half a century before. My first experience of Baskin-Robbins and their 36 flavours. Rocky road, bubblegum, chocolate chip, rum and raisin – bounty beyond the imagination of the Donny boy who would queue listlessly for a sixpenny vanilla cone. Chipmunks, raccoons and bears, dazzling animal novelties to a Yorkshire boy used to ferrets. And candy floss for heaven sake – or cotton candy in the local vernacular. America simply blew my nine year old mind. And ever since, on the many trips to America I’ve been lucky enough to make, I’ve still been looking for that mythical lost America, where it was always summer.

Or our first European holiday , a thousand miles trek perhaps through Belgium and Germany, climbing in Austria on precipitous mountain roads, to a chocolate box hotel near Innsbruck. I remember Helga, a coltish blonde 13 year old from Mainz who made my 12 year old face blush when she smiled at me. She spoke no English and I spoke no German. We conversed in Latin incredibly. And her dad, one legged from a wound sustained in a panzer in the Ardennes. Or so we were told. He had medals. Father was sceptical.

The return journey was like the retreat from Moscow. After driving for nearly 14 hours we drew up beside the burnt out shell of a building in Liege to ask an old man for directions. He pointed to the still smouldering guesthouse and shrugged.

France has always been a favoured destination whether as part of my parents’ family or my own. Brittany, sadly now overrun by British holidaymakers was less well known in the 70s, was full of vignettes. I remember the best piece of lamb I have ever tasted in Cap Coz at the Hotel de Bretagne (I wonder how long it took them to come up with that name), almost rare and suffused with garlic. Melted in your mouth. And of course Mother telling us that every unfamiliar dish tasted like chicken. All credit to her for trying. It never did. Unless of course it was chicken. So programmed was my mother’s response that she would utter reassurances before she had fingered her Larousse as far as ‘poulet’. It did indeed taste like chicken. It was chicken. And father, seated at one end of a long zinc bar while his family played on the beach a few yards away. The smell of Gauloises and Pastis and the white noise of an ancient television in the corner erratically tuned to some unspecified Gallic sporting event. If we were particularly good as children we were allowed to read the Asterix books in the original language.

Although with hindsight it seems we travelled a lot, my perception was one of conservatism among my parents. When I married they were quick to extol the virtues of France and Germany as honeymoon destinations, deeply suspicious of my choice of Singapore, Malaysia and Bali. My father sternly told me to eat none of the food. Not even if it tastes like chicken I asked? My mother meanwhile shared the fruits of her learning with useful advice on how to deal with rattlesnakes – a sort of complex twisting and whip cracking sort of manoeuvre Certainly entirely different from my solution which was to run very fast in the opposite direction. I was pretty sure there were no rattlesnakes in Indonesia and told her so. That’s because it works, she said. She also explained how to deal with scorpions in the bed. It was a well-known problem I was told – scorpions love to join newlyweds in bed. Why they should pick on newlyweds was never adequately explained. Happy days.

So I think I caught the travel bug when I was a child. I’m surprised my mother didn’t have a protocol for that. She had ways of dealing with every other kind of bug.

DBS Diary 07: Hiccups…

A couple of weeks back I had my pre-med assessment for DBS. The usual stuff – ECG, height, weight and the usual bloodletting. I was issued with my Hibiscrub body wash along with detailed instructions. Trust me it’s never going to take over from Old Spice (or Lynx for you youngsters). Still, it does its job. All of which is to render me as nearly aseptic as possible going into theatres.

I offered to get my hair cut to regulation marine/skinhead length before the operation on the assumption that they were going to do that anyway in order to drill the holes necessary. Rather surprisingly they declined my offer on the grounds that it ran the risk of damaging the skin and thereby allowing infection. Apparently they prefer to just tease the scalp apart. That shouldn’t be too hard – my hair is relatively short anyway. More Bobby Charlton than Laurence Llewelyn Bowen.

Nor was I to shave my chest – I can honestly say that that one never occurred to me. Not now, not ever. My brain is, after all, in my head not my chest. I’m sure my surgeon knows that. But in fairness they have to do a bit of slicing there as well to insert the battery pack. I don’t know yet or have been told and forgotten whether I’m to have a long life battery pack or a rechargeable unit. Either way they are about the same size as a pack of 4 AAs. As I understand it, the non-rechargeables last about 5 years or so but then have to be replaced – which means slicing you open again. The rechargeables have a longer lifespan but you have to recharge them weekly on average.

I was sent on my way with instructions on quarantine. “Just don’t catch anything between now and then” I was told “otherwise we may have to rethink”. I saluted and promised to stay out of trouble. I know full well what that meant.

I wasn’t worried. I don’t catch colds or flu. My childhood was largely free of the kind of snuffles and low-grade infections of childhood. Can’t think when I last caught a cold. No worries.

I thought no more of it. Until Tuesday evening that is, when the unmistakable tickleof a sore throat began to emerge. And here’s the rub – because of the effects on blood clotting, you can’t reach for the ibuprofen and aspirin. Strictly forbidden. All of which left me with vitamin C and paracetamol, hardly heavyweights in the analgesic arsenal. Still, I thought, it’s probably just a feathery tickle.

By Wednesday, the experience was less one of feathers being gently played over my tonsils than of my thoat being addressed with an orbital sander. Explosive sneezing and the beginnings of a chesty cough completed the symphony of symptoms. If it stopped there I could have written it off as side-effects of the seasonal flu jab I had on Monday. It didn’t. And the more it evolved it became clear it was a chesty cold. Or trying to be one. I did a couple of lateral flow Covid tests just in case. Both negative.

By Thursday, I felt rough enough to stay in bed all day. Plenty of fluids, paracetamol, vitamin C and throat lozenges. Not exactly a balanced diet. But then I was hardly hungry. I emailed the hospital DBS nurses to get their thoughts. Pretty much as I might have anticipated, they emphasised that this was less than ideal preparation for an operation in a fortnight. It needed to be gone and soon. They set a deadline of Monday (it’s Friday now) for recovery or they would have to consider rescheduling.

Oh yes and the latest HbA1c value needs to be a lot lower than it was in July when last measured. It’s a double whammy. Failure on either count next week will mean an automatic ‘no go’ decision. Throw in the current exponential rise in Covid cases nationally with likely pressure on beds and there is a further tier of uncertainty.

How do I feel? Hard to say. I don’t want them to conduct the operation if I’m not fit enough for it or there is a much higher risk of Covid infection. Nor do I wish them to turn away some poor soul with Covid in order to do my op. That would be horribly unjust. But nor do I wish to be put on pause indefinitely. We should at least know by Monday.

My friends tell me I’m a worrier. They’re right of course, always have been. Too late to change my spots now!

Cerberus!

According to Greek legend, the name of the dog that guarded the entrance to the underworld was [a] Fido, [b] Rover, [c] Mr Shnuckums or [d] Cerberus?

If you answered ‘a” or ‘b’ you clearly have a healthy relationship with dogs but a woeful lack of knowledge of Greek mythology. More time listening to Mr Crawford in school assembly and less pulling Sally Moffat’s, pigtails would have been useful. If you answered ‘c’, well I don’t know what to say but you should probably consider pets other than dogs. No, the answer was of course ‘d’ Cerberus.

Cerberus guarded the underworld. And I have always wondered about Cerberus. Why exactly would you need a guard dog to prevent entry to the underworld? I’ve always thought of Hades as rather like post-Brexit Britain – nobody actually wants to come in. Indeed, staying out of Hades was the principal life objective of the ancient Greeks. Along with all that vaguely homoerotic Leonidas-and-his-300-Spartan-heroes stuff. Either way, whether you were rubbing oil into each other’s pecs or writing sonnets to Apollo, the idea was to stay out of Hades. I think it’s fair to say that Hades had very little in the way of voluntary clientele. And as far as I know there was no passing traffic. So Cerberus presumably served to keep people within Hades as much as without.

That takes a special kind of dog. Let’s face it, we are not talking miniature poodles here. No chihuahuas, Pekinese or dachshunds need apply. The job is way above their pay grade. No, this job calls for a very big dog – something that doesn’t fit with any of the Crufts breed standards. Something huge. Think great Dane or American mastiff. Then double its size. Something with the jaws of a pitbull and a slavering mouth filled with lots of enormous and very sharp teeth. Oh yes, before I forget, three heads. That’s right – count them. Three. And a matted fur of snakes. Throw in a short temper and you have it. Walkies.

The stuff of legends you might think. And yet we encounter the modern equivalent of Cerberus almost everyday. A creature so fearsome and intimidating that we quake at its mere mention. A creature unyielding in defence of its territory. I’m talking of course of the modern medical receptionist. A beast with one purpose in life – to prevent you from speaking to your doctor. Of course not all of them have three heads (except in rare rural communities) and the snakes are no longer a mandatory part of the uniform. Some may even, to the casual observer, seem comparatively normal. You wouldn’t even necessarily spot them in the street. But in their natural habitat, between you and the waiting room, behind a screen of glass or Perspex, they hold dominion, like a pride of lions.

Cerberus: “Yes?”
You: “Can I have an appointment with the doctor please?”
Cerberus: “Why?”
You: “Because I think I’m unwell.”
Cerberus: “Are you well or unwell?”
You: “I don’t know. I was hoping the doctor would tell me.”
Cerberus: “Well he’s very busy. What’s wrong with you?”
You: “I’d rather not say here.”
Cerberus: “I can’t decide if you’re unwell then”.
You: “Perhaps the doctor could decide what’s wrong with me?”
Cerberus: “He’s very busy. I told you.”
You: “Can I please just have appointment with the doctor?”
Cerberus: “Don’t take that tone with me!”
You: “What tone?”
Cerberus: “Like you have a right to see the doctor.”
You: “Isn’t that the case?”
Cerberus: “I’m just doing my job. If you don’t like it, you can go elsewhere.”
You: “I don’t want to go elsewhere. I just want to see a doctor.”
Cerberus: “Why?”
You: “We’ve discussed that.”

And so on, ad absurdam.

Pitting their own wits against your reluctance to publicly divulge the location of those sores, or the frequency and explosivity of your bowel movements, the medical receptionists are unassailable. None shall pass. A top-level medical receptionist can keep a waiting room empty on their own. A few louder than necessary questions about that rash has even the most strong willed fleeing.

What deranged model of healthcare seriously proposed that the receptionists could triage patients safely? And this is not necessarily a criticism of the receptionists per se but they should not be put in that position. How many patients have suffered unduly because their condition was not deemed important enough to warrant an appointment with the doctor? So many conditions present with similar signs and symptoms that they are indistinguishable to the unskilled eye.

This is not the medicine from my father’s day. For 40 years a GP in Doncaster, his receptionists ushered in the anxious and soothed the stressed. They did not ask impudent questions. They did not humiliate in the name of triage. That was not their job. My father saw them all. If they came to the surgery feeling unwell, they would be seen. Even without appointments. And if they could not come to the surgery, he would go to them. Think about that for a moment. When did you last have your doctor come to you?

But the last quarter century has somehow bred these monstrous self aggrandising creatures who take it upon themselves to block the channel to consultation. Or maybe I just don’t understand – perhaps receptionists are more highly qualified than doctors to make medical decisions. Maybe their three day telephone answering course gives them greater clinical insight than seven years at medical school. Perhaps they know instinctively that your recent bowel problems are just indigestion and not Crohn’s disease. The same with your shortness of breath – they know it’s hayfever and not lung cancer. I wonder how many doctors know what their receptionists are doing.

This is where I put in my usual caveat – you know the kind of thing. “It’s a small proportion of receptionists who give the rest a bad name”. That sort of thing.

We’ll never know because we’ll never get close enough to the doctor to find out.

DBS Diary 06: What if…?

This is probably a tricky subject for many. Not everybody likes even to acknowledge the possibility let alone make any kind of provision for such an eventuality. And it’s true that the odds are good. Whereas variable positive outcomes are commonplace, disastrous failures are rare. Depending on prior expectations, the results generally fall somewhere between mild disappointment through to outright ecstasy. And this is the territory in which the vast majority of prospective DBS patients will inhabit. When you ask most of those who have had DBS whether they would do it again, the answer generally is a resounding ‘yes’.

And, as someone about to undergo the procedure, that’s very encouraging.

But, in a spirit of full disclosure, let’s not forget that there is a tiny number of patients for whom failure is not simply a lack of significant benefit but a genuine life-threatening emergency.

When you consider the mechanics of it all, it’s not surprising that there are a proportion of such outcomes. A very very small proportion of the total undergoing the procedure but a finite number nonetheless. And that’s probably not surprising. Although very fine wires to the naked eye, electrodes are, in neuronal terms, enormous. A nerve cell body maybe 25 µm across, vascular lining cells of similar dimensions. Electrodes on the other hand, even of such delicacy as these, are at least an order of magnitude larger. As they push their way through the brain towards the subthalamic nucleus, brain cells are pushed aside like ice flows at the bow of an icebreaker. Some inevitably will be damaged or forced into a slightly different part of the neuronal real estate that is your brain. These are minor inconveniences, tiny tribulations and a small price to pay for the benefits to come. But every once in awhile the electrode will puncture a blood vessel and initiate a bleed.

A bleed in the brain is an entirely different kettle of fish from a nick while shaving or a scratch with a thorn. You cannot apply cotton-wool or dab antiseptic on the site of bleeding. Cauterising works on surface vessels but not deep down. The deeper you go beneath the brain surface, the less aid you can expect. It’s like a mountaineer climbing alone above 25,000 feet. You are on your own.

Once again I feel the need to reassure you, dear reader, that such eventualities are extremely rare. Certainly they should be factored into your own go/no-go decision but not fretted upon.

So with that in mind, how should one respond to that tiny but finite risk? Brush it aside in a moments thought with a derisive snort? Surround yourself with ‘you – have – a – greater – risk – of – being – struck – by – lightning’ friends? (Incidentally those odds are wrong – lightning is much less common). The same but with London buses as the denominator? Subject yourself to deep introspection and dwell on all possible results?

On the whole, most of the above are unhelpful. But then equally unhelpful is the head in the sand approach – you can’t change things so just roll with it. Fatalistic nonsense.

My approach falls I think somewhere between these different extremes. But if you are uncomfortable with this, just stop reading. And since I have broadly skirted round the subject to this point, let’s be clear what outcomes we are talking about. These are essentially a disabling stroke or, worst of all, death.

I like to think that I’m approaching this in the manner of a checklist, ticking off each item without dwelling on the likelihood. I don’t plan to describe every last detail here. But certain matters are obvious. My will is written and witnessed. Tick. I have already notified key people of my wishes with respect to my remains. Tick. And so on.

Most of it is straightforward. But the last part is more important. Specifically, there will be three letters written before I go into hospital, one to each of my children. Each will be personal to that child and will tell them all the things that I want them to know going forward. How much I love them, unconditionally and without limit. I will tell them how much joy they’ve brought me over the years. I will let them know how proud I am of them. And I will speak to them of being true to themselves, of standing strong and of looking after their siblings.

I will probably forget my toothbrush when going into hospital. That’s just me. But, trust me, I won’t forget those letters.

Fanfare for the uncommon man

You would have quickly warmed to Guy, an old friend and colleague, whose funeral I attended today. For those of you that knew Guy, here are some of my reflections on a side of him you may not have seen. For those who didn’t, let these serve as an introduction to a man I think you would have liked. An exceptional man. An uncommon man. Three of us – an anaesthetist, myself and a surgeon – delivered eulogies at today’s funeral. The following are my reflections as spoken:

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I probably knew Guy from a different perspective. Whereas many of you will know him as a clinical colleague, I knew Guy as a research scientist. A small difference you might think but perhaps a telling one.

I think there is a world of difference between science and medicine. Medicine trades in confidence, in certainties and in answers. That’s medicine. But it’s not science. The currency of science is doubt, introspection and questions. And to be good at one does not necessarily make you a skilled practitioner of the other. And yet the very best of medical science exists at that interface. Others can speak of Guy’s clinical acumen but I would like to say a few words of him as a scientist.

For a decade or so I ran a research laboratory in the Anaesthetics Unit at the London Hospital. Guy joined the group around 2001 to do research on the biochemistry of head injury – a clinical problem addressed in a scientific way. And for the several years that I knew him, he brought a clinical perspective to that science, staring down the microscope but always asking how  what he saw was relevant, how it would be meaningful to patients. And he asked the same of his clinical colleagues. How could his research in the laboratory be of most benefit?

But Guy was no dull dry academic. Guy brought enthusiasm to the research. I had one golden rule in my laboratory – that nobody was to ask me serious scientific questions until I’d had my first coffee of the morning. Only then was I available to discuss science. Guy had no time for  such constraints Many was the time he would greet me in the morning with two cups, a cafetiere of hot coffee and beaming smile. Who could resist?

Guy brought commitment to his work as well. On his desk in the laboratory was a small post-it note with a quotation. “Perfection is unattainable. But if you chase perfection, you can catch excellence”.  By V. Lombardi. I  asked him who Lombardi was, expecting perhaps a 17th-century Italian philosopher. He laughed. “No” he said, “head coach of the Green Bay Packers”.

Certainly I could speak of his kindness, of his humanity and generosity – very human characteristics and expressed in full in his own personality.  I could tell you stories about lions and tabby cats, of long drives over the North Yorkshire Moors, of getting lost in Paris, of his fondness for the Goon show. All part of Guy’s time in the laboratory. But I think when you come to sum up a life, it goes beyond their own actions. It extends into the actions and thoughts of others. Are there things that we do differently or   ways in which we think differently because we knew Guy? I think there are. And I think Guy lives on in those thoughts and actions.

To quote a line from Blade Runner, one of his favourite science-fiction films, “The light that burns twice as bright burns half as long”.

‘My Way’

One of the most popular songs played at funerals is, you will not be surprised to hear, ‘My Way’, that self-aggrandizing hymn of defiance, associated with and immortalised by Frank Sinatra. It never fails to raise a collective wry smile among the grieving on hearing that the normally retiring Mr Albert Thwaite did it his way. Leaving aside the thorny question of what his way was, it’s usually pretty clear that Mr Thwaite did not. Do it his way I mean. A life of kowtowing to some nameless council boss was not what Sinatra had in mind. So unless you count that unfortunate episode with the karaoke machine Ethel hired for cousin Gladys’s 21st birthday, Albert did not do it his way. And many who heard his treatment of the aforementioned song that day, fuelled by two glasses of Tesco Amontillado, are still reluctant to talk about it.

Albert’s rendering of the song that day remains etched in the memory of any who heard it. Not everyone recognised the song, so idiosyncratic was the performance. Many who did never thought of it the same way again. Somehow Albert managed to condense the anger of a lifetime of servitude into three minutes of jawdropping catharsis. In some ways that is what the song is about. Just not Albert’s apparently arbitrary and wandering choice of key and tempo. Listeners stared at their shoes as the song ended. After several seconds of tumbleweed, Ethel broke the embarrassed silence with a single handclap and invitation to guests to address the buffet.

Albert was buried in an old dark suit, it’s lining long since given over to moths. Nobody mentioned the song.
Least said this, thought Ethel.

Howard Hughes can legitimately claim to have done ‘it’ his way. Bill Gates and Steve Jobs the same. Their lights burn bright, their greatness unequivocal, their single-mindedness unassailable. Men who genuinely did do things their way. But what of the millions in between Albert and Bill, Steve or Howard?

Tomorrow I shall attend the funeral of a friend, a clinical anaesthetist and one of my former PhD students. Neither Albert Thwaite nor Howard Hughes. I’ve been asked to say a few words about the person I knew all those years ago. Others too from different parcels of his life. And above all it has made me aware of how compartmentalised our lives are. The messages of remembrance each provide another piece in the jigsaw. I can only speak of the time I knew Guy. He was a gentle man and a gentleman. The product of his upbringing and strong parental models. He was an only child and in many ways a private man. But at the same time he was gregarious and entertaining. Larger-than-life if you will. Not many knew that he enjoyed heavy rock music and among his final acts was the choice of music for his own funeral. Logically this would be the point where I draw the strands together and say that ‘My Way’ was among the choices.

Mercifully it wasn’t.

He chose ‘The Chain’ by Fleetwood Mac, reflecting his love of Grand Prix racing (the instrumental solo in the middle of the song associated forever with TV coverage of racing) and, little-known by others, the fact that he played the bass guitar himself.

Mr Blue Sky was another perfect choice. Patients loved him. His bedside manner was calm and encouraging, reassuring anxious patients, soothing jangled nerves of the preoperative patients. In many ways he was Mr Blue Sky.

And the final song? Growing up on the south coast, with its chalk scarps and green fields, it could only be one – White Cliffs of Dover sung of course by Vera Lynn. The perfect choice.

Guy would never have claimed to have done it ‘My Way’. He would have snorted at the absurdity. Guy knew, better than most, that life throws spanners into the best laid plans. He knew that life was about doing the best you could, where you could and how you could. He accepted no grand design, no masterplan from on high, just the simple pleasure of knowing that he had done his best. It wasn’t necessarily his way or anybody else’s. It was just the way. And that’s all that mattered.