Tuesday, 18 June 2013

Rory Morrison



Driving home on 11 June, I caught part of the 10 o'clock news on Radio 4 and heard the sad announcement of the death of Rory Morrison, news that many least wished to hear. 

As is public knowledge, Rory was diagnosed with Waldenström's Macroglobulinaemia in 2004. He bore both illness and the rigours of treatment with fortitude and good humour and will be terribly missed by all who knew him. As others have commented in the last few days, his skills as a newsreader, communicating both the weighty and the humorous with equal attention to detail and the clearest of diction, placed him at the heart of the nation, so that those who never met him individually have also felt a significant sense of loss. 

Rory was already my favourite BBC newsreader before I met him at a gathering for Waldenström's patients in early 2011.  Talking to him on that occasion helped me to prepare mentally for treatment that was in prospect later that year and which he had himself undergone some years previously. He was open, engaging, bright and modest and I liked him immensely. 

Since then I had seen him a few more times, the last being just a few weeks ago, and the character he had shown at our first encounter was still much in evidence. If you have heard the tributes of his colleagues on radio and in other media, you will have got the same measure of the man. Responding to death, we often parade the conventional pieties, but in Rory's case there can be no doubt that the warmth of the eulogies and reminiscences is justly deserved. The online discussion forum for WM patients has seen a number of people remembering with gratitude both Rory's kindness in personal conversation and the way in which he deployed his consummate professional skills and wonderful voice to present the International Patient Forum for WM in London in March 2012. 

Rory's death sadly points up that Waldenström's—usually thought of as an indolent, therefore relatively "safe", disease—can be anything but. Yes, the disease is generally mild and eminently treatable, but it is frequently quirky, casting a shadow over those affected by it, both patients and their loved ones, and sometimes giving rise to complications that are anything but gentle. Thinking on Rory's passing has strengthened my resolve to do everything possible, while breath remains, to publicise the existence of WM, lobby for the interests of patients, encourage research into the mechanisms of the disease and its complications, and secure better and more targeted treatments. 

It is a paradox of suffering that it can be accompanied by blessing. In my own tussle with WM, I have known the deep love and kindness of friends and family and have also met both patients and medical professionals who have shown remarkable compassion, determination and resilience in the face of a tough adversary. Rory Morrison was one such individual and it was a joy, as well as an honour, to have known him, even if all too briefly.

Saturday, 16 March 2013

Lack of Wisdom

It is said that the corrective for those who wallow around in nostalgia—as it can't quite be right to call it—for previous centuries, such as I indulged in somewhat in my last post, is a single word: dentistry. See, it has just worked for you, hasn't it?

When, in conversation, one offers this remedy for—admittedly mostly harmless—self-indulgence, one's interlocutor will often be seen to wince, as if recalling some procedure, whether recent or further back in the past, and imagining its being carried out with a pair of rusty pliers or a hand drill, at any rate without effective anaesthetic, save possibly for a generous slug of alcohol. But anaesthesia and refined implements seem, in some ways, peripheral boons of modern dental practice. To get to the heart of what distinguishes modern practice from that of the vast majority of earlier centuries one has to consider organisms beyond the reach of our unaided senses: bacteria.

A few weeks ago I was conscious of both discomfort and tenderness around my upper left wisdom tooth. It wasn't much and certainly it did not deserve to be called pain, but it was constant and irritating. I had, before the symptoms appeared, finally got around to registering with a new dentist for the first time in several years, our previous, excellent, one having retired. She had taught me about the best practices of oral hygiene and, in consequence, during the years in her care, I had needed few fillings—some of them merely replacing work done in childhood—and not a great deal of specialist cleaning and polishing.

These had been the best years of dental health to date and this dentist's thorough care had also seen both our children through some awkward moments, including orthodontics. Perhaps I had been living complacently off the legacy of those years; certainly I had latterly been concentrating my health efforts on combatting lymphoma—for whatever reason, including no doubt an element of base fear, I had not very actively been seeking out a new dentist. Almost coincidentally then with the arrival of the new disturbance mentioned above I had entrusted the wellbeing of my teeth to a practice operating out of an old bank building about 30 minutes' walk from home. 

When I started fishing around the niggling gum with my tongue and then, the next morning, with my finger, I was aware of a palpable spot. Doing what comes naturally I pressed it and it burst, yielding the simple sense of satisfaction familiar to many of us from awkward adolescence onwards. Why was I, then, surprised to find, on withdrawing finger from gob, that there was a mixture of blood and pus on it—not much, but this was an entirely new experience and enough to be unsettling

Rather surprisingly I managed to obtain an appointment next day with my GP, who looked at the now subdued eruption at the back of the gum and said that it looked like a spot that was on its way to healing. However she entered the crucial caveat that she was not a dentist and was glad to know that I had an appointment with one just a few weeks away. She prescribed a generous course of antibiotic, metronidazole, to be taken in the event that the spot reasserted itself along with discomfort. She also warned me against drinking alcohol while on the antibiotic, as that would make me feel very unwell, the pills being engineered to combat anaerobic bacteria, the nasties that do not cavort and multiply openly in the caverns of the mouth but which lurk in the secret places above the teeth , biding their time until an opportunity arises for them to feast and multiply, typically when a tooth, or part of it, dies (say as a result of caries) or there has been a breach of the gum's defences. 

The placebo effect of seeing a professional worked for a while and the spot endured, but in a milder, less assertive, form. As a result I waited until the appointment with the dentist before discussing the matter with anyone again, and just kept the unopened pack of antibiotics as a sort of talisman in my rucksack. 

Registering with a new practice means that one's first task before sitting down in that high-tech, tremendously comfortable but simultaneously unsettling, chair is to fill out a medical history questionnaire. Most questions I can still answer in the negative—about heart disease, kidney trouble or stomach ulcers, say—but sooner or later I would get to that spot on the paper where I would have to confess all: the rare lymphoma and its treatment. Fortunately, my understanding of the disease has developed to the point where I can be quite succinct about what it involves, while the questions posed themselves provided some handy hooks for concise communication. 

When I was finally ushered into the room with THAT chair with the BIG light and THOSE implements—the white plastic cup of pink mouthwash, that fount of respite from all the probing and prodding that would ensue, already on the side tray—there was another opportunity to explain something of WM to someone who had never heard of it before and this—no disrespect intended—was not a rookie practitioner. 

A rookie cop, or at least a fictional and dramatic representation of one.
One possible origin of the word is that it is a corruption of "recruit".

Wookie – quite different, although you can presumably find rookie Wookies

It really is odd how proud one can feel expounding the basics of this rare disease to someone to whom it is unfamiliar. The thought that came to me writing this was that maybe evangelists feel a similar rush of blood to the brain, a flood of energy to the organs of communication. It has been a strange perk of being significantly unwell, to be sure, this urge to spread the word. 

Introductions and my little tutorial over, it was time to "relax" in the chair and for the tools of examination—that small mirror on a stick and an array of pointy things—to be deployed. There was enumeration of my teeth and their accumulated quirks to the nurse standing nearby with her checklist and there were two x-rays, my jaws clamping on those supremely intrusive gagging cardboardy-feeling devices that confine the invading rays to one side of the mouth and prevent the resulting images being hopelessly mixed and unreadable. 

It was time to mention that troubling spot to my new dentist. She examined the gum, which now felt even more rested than when the GP had seen it, and she perused the hot-off-the-press X-ray images. It appeared that the infection might have been a superficial one, possibly introduced by a shard of bran lodged temporarily between tooth and gum, as the images showed no obvious sign of a deeper problem, such as necrosis of the tooth or an abscess. The dentist advised me to monitor the suspect tooth and gum and to return if there were any concerns. 

Walking out of the surgery I again felt that lightness of step that always follows reassurance but after about a week the spot reasserted itself. I prodded it (I know, I know...) and once more it subsided, but after several turns of this sad little cycle, it was clearly time to go back to the dentist, who was available without much delay.  On this occasion she had a more solemn air about her and, on hearing my symptoms, announced that there was most likely an abscess nestled above the tooth, which was now nervy when tapped with a probe. The route of travel was one-way: extraction, the foundations of wisdom teeth being too gnarly for a root filling. However, to make sure, she would take another X-ray— a bigger one this time, which would show things in more detail. The next room was little more than a large cupboard, just spacious enough to contain me and the X-ray machine, on to whose head-high plate I now positioned my chin. 

Back in the room with THAT chair the latest image revealed the problem: the tooth was indeed infected, its roots having a greyed-out, shadowy appearance that distinguished them from the more opaque pinnings of my other gnashers. In my now rather lowered mood, it was a positive relief to hear that the job could be done within the week by the oral surgeon who visited the practice every fortnight. For now, my task was to upgrade the metronidazole prescribed some weeks earlier from lucky-charm status to deployment mode and to take alongside it a course of amoxicillin that would subdue the aerobic bacteria at large in my mouth.

It was good that I had a lunch appointment to look forward to and a pleasant walk to get there, on a crisp winter day conducive to contemplative strolling. The chemist's, with its glass shopfront—gold lettering on a black background, reassuringly traditional—was just along the parade from the dentist's, so I was soon armed with the new antibiotic. 

Yay! More pill action!

Conversation with a friend in an extremely quiet and unrushed local restaurant steered my mind away from brooding on what the week ahead would bring. We spent quite a while talking about the ins-and-outs of a legal battle which my friend has, on grounds of principle and in the interests of the health of local democracy, taken an active role. If you have ever wondered how it is that our communities are saddled with so many horrible, or just mediocre, buildings, examination of the issues this tenacious friend has been grappling with would be highly instructive. Consider a heady mix of the following: local councillors making a major planning decision along party lines on matters away from their immediate locality; a major transport infrastructure company in partnership with developers and architects of no obvious distinction; a national sporting institution flexing its economic and political muscle; a race for the bottom by powerful interests in pursuit of short-term benefits and at the expense of the amenity of local residents and, arguably, the best interests of the travelling public; labyrinthine strategic planning edicts whose true meaning lies not in natural English but which can only be interpreted by sages; a legal judgment, issued after eye-watering expense, that ignores the word "and" at a crucial point in one of those same edicts. There are those who mock theology and worship democracy, but the processes and rulings of supposedly accountable organisations can be as arcane, opaque and crushing as the edicts of any empurpled priesthood. Democracy, like the fabled Emperor, sometimes walks around in the buff. 



After a week of palpable, if faint, apprehension, I made my way back to the dentist's that used to be a bank, my brother kindly giving me a lift and then retiring gently to a nearby café while I bowed to the inevitable. The wait to see the surgeon was only short, but I tried to take my mind off what lay ahead by leafing abstractedly through the pages of a local business directory that was on top of the pile of second-hand reading matter—jittery patients, for the distraction of—that lay on the table in the reception area. 

Summoned by the nurse, I was soon in one of THOSE chairs again, the wide screen on its moveable arm in front of me displaying this delightful scene:

Not a teaser from one of the Alien movies the large X-ray of my jaw and lower skull taken the previous week.
The culprit wisdom tooth is the last upper one on the right side of the image (my left).
The area around the roots is shadowy, unlikely the equivalent areas of the neighbouring teeth. This indicates  death in the roots, while the darker patch immediately above the roots is a small abscess. Oh dear...

The surgeon was full of reassurance—his calmness no doubt merely the apex of an iceberg of efficiency and experience—and, as a result, the reading on my personal trepidometer dropped by a few points. He explained what was on the screen in front of us and what might have led to this not-so-pretty pass. In the corner of my eye glinted the tools of his trade and I caught brief sight of something that, for a dental implement, was rather on the bulky side and resembled nutcrackers. I concluded that it was the business end of this item that would shortly be brought to bear on the offending molar. 

The first task was to swill chlorhexidine mouthwash around my mouth for a minute in order to reduce the bacterial population to acceptable levels for surgery. Hello Corsodyl, my old friend. I had lived with this harsh, taste-blunting, tooth-blackening stuff for some months when having chemo, so was used to it, if only as the lesser of two evils, the greater evil by far being the risk of oral infection that could lead to something more unmanageable.

Next came the anaesthetic: three jabs at points around the tooth. The last of these, as the surgeon explained, would cause me to lose the sense of my soft palate lifting when I swallowed and this lack of sensory feedback would deceive my conscious mind into thinking that I might choke and trigger the gagging reflex. This proved, at the time and now in retrospect, to be the most disquieting experience of the whole sequence of dental dramas. It was time to be objective and override the reflexes thrown up by what can be regarded—no doubt unfairly—as the lower parts of our nature: those primitive areas of our brains whose dogged dependability has supported our evolution and enables our current survival at times of danger. For a while it was an effort to control feelings of panic and tell myself that I could still swallow and was not going to choke on my own saliva. 

Once I was used to this new, mercifully temporary, reality, it was time for the tooth to go. With the surgeon's assurance that all I would now feel would be pressure, I lay back in the chair. He frustrated my efforts to catch sight of the bulky extracting implement by palming it like a conjuror as he brought it from the table to the doomed tooth. It felt as if some very efficient leverage was being applied to the tooth and there was none of the tugging of pliers in the sensations—muted as they were by lidocaine—that very briefly followed. There were cracking and crunching sounds in my head but, as dental interventions go, it was mercifully mild stuff. With two goes of this procedure the tooth was no longer a bodily fixture and was placed without a sound on the side table.

Then followed quite a bit of digging, poking and scraping around in the resulting hole, my mouth all the time being kept rather horribly dry with one of those small vacuum hoses that are part of the dental nurse's toolkit. As I marvelled at the ability of anyone, let alone someone highly trained and experienced and equipped with precision tools developed over several centuries, to carry out procedures in such a confined space without first removing my lower jaw, the surgeon made a single stitch across the wound with thread that would dissolve in a few weeks. This drew in the gum walls that had until a few minutes before surrounded the tooth, so that they would close towards each other and heal more neatly. 

When all was done, the surgeon showed me the no-longer-offending tooth, a couple of its roots being noticeably darker than their fellows and therefore necrotic. It looked so harmless…

Ta-daah!!

He also showed me a sad little red sac, which, sure enough, was what was left of the abscess that  had previously flourished unseen, if not entirely unfelt, in the hidden spaces above the dead tooth. Although it was emptied of its noxious payload and reduced to the size of a peppercorn, it was nevertheless shocking to realise that the abscess was an entity in its own right that had needed removal: not just a space that had needed draining, but something with micro-thin walls—a structure, for pity's sake. 

The surgeon advised me that I should, if need arose over the next ten days or so, wipe my nose rather than blow it, as air pressure while the wound was healing could force bacteria that should be confined to the mouth into the sinus above the wound and thence into the bloodstream, resulting in chronic, system-wide and possibly life-threatening infection. We would be back to the dark days of our ancestors, where otherwise healthy and active people could be brought down by inadequacies of oral and dental health, succumbing to catastrophic bacteraemia that we are able to keep at bay with regular brushing, flossing and a preposterously large range of toothpastes.

A particularly drastic method of tooth removal employed by our mediaeval forebears

Our whole lives are spent accommodating, as well as fighting off, the inconceivable multitude of microorganisms that swarm within our mortal frames, not to mention those that assail us from outside. Furthermore we now understand that some organisms are essential for our normal functioning, notably within our gut. It is hard to imagine another snippet of current biological knowledge more humbling than this. 

I am still getting used to the changed landscape in my mouth. The hole where the tooth was has sealed over, the stitching thread has gone and, I trust, the biodegradable gauze used to pack the wound has been, or is on its way to being, absorbed into my own fabric. Occasionally I bite the inside of my mouth on the left side as a result of the new alignment of teeth, but the overall result is good and life moves on. I have to acknowledge though that this battle of the bacteria may have been won, but that the little buggers will get me in the end—this version of me, at any rate…

The Revd John Polkinghorne, KBE, FRS (born 16 October 1930) is an English theoretical physicist, theologian, writer, and Anglican priest.
He wrote an interesting article about a possible understanding of the afterlife here: http://www.thirdwaymagazine.co.uk/editions/apr-2012-/features/physics-and--the-final-frontier.aspx
My old tutor, Simon Blackburn, does not agree:



Sunday, 17 February 2013

Spinal Trap


It must be something of a record; certainly it is a personal best. In the first week of December I entered four different hospital buildings spread across two different hospital trusts in two different cities. The news from these different venues is mostly good.

Before all that, please let me share some happy news that is not related (yes, yes, I know EVERYTHING's connected) to my medical history or that of my family. Monday 3 December saw the Lord Mayor of London—not the flaxen-bemopped polymathic pretender to the Tory throne but the 685th holder of a much more ancient office, holding ceremonial sway in London's original Square Mile—coming through a doorway which I have had some part in reconfiguring. Here are some pictures: 

The north entrance lobby of St Olave Hart Street before improvement works.
Like walking into a cupboard and just as inviting!
In the foreground is a mayoral sword stand dating from the 18th century.

Ta daa!
Glass panels mean that people can see in and those inside the church can see, er, out.
Huge improvement, and with new stone steps and a levelled floor within in the lobby, making it safer.
New glass doors to Hart Street complete the improvements.
The door handles bear a design dating back to the 17th century.

The Lord Mayor's purpose in visiting St Olave Hart Street was to swear in the new Alderman of the Ward of Tower, in which the mediaeval church is situated. The City of London is a strange and magical place in many ways and it is a mistake to equate it in a simple and direct sense with blundering bankers and overweening skyscrapers (although the latter are currently, quite literally, in the ascendant, even while the former can expect yet more brickbats in the months to come). Talking of overweening skyscrapers...

The Guild Church of St Margaret Pattens on Eastcheap.
The view is from Fenchurch Street and has now been lost because the building
that is now filling the crater in the foreground is...
This monstrosity, nicknamed "the Walkie-Talkie" that bulges at the top
and looms over Fenchurch Street and Eastcheap.
Pedestrians walking past it are smacked in the chops by a fierce wind.
Another ghastly edifice, currently rearing its bulk above Leadenhall Street.
This one is called "the Cheese Grater".
Sigh...
It was a cause of celebration for me and my employers that the new north entrance to St Olave's was ready in time for The Lord Mayor's visit. Until the week before, access to the church was only available through the churchyard on the south side and the interior of the church bore a fine film of dust from stone cutting and cement mixing and, instead of the tinsel, baubles and fairy lights now twinkling over the Christmas season, it was host to a display of warning notices and builders' barriers. Through the clear new glass doors and down the pristine York stone steps they came: first was the Ward Beadle, his three-cornered hat embellished with gold braid, bearing the Ward Mace crowned with a model in silver of the Tower of London; next the City Marshal in plumed hat ; the Sword and Mace of the City—the latter assembled over several centuries and including elements, I was told, from the 14th century; finally, with forthright stride, walked the Lord Mayor in his red robe and wearing a black, plumed tricorn hat almost as wide as his shoulders;  Once the civic party was assembled at the east end of the church, the Beadle called the gathering to order with the ancient French cry "Oyez! Oyez!"

The Beadle of the Ward of Tower enters St Olave's at a stately pace.
The plumed hat of the City Marshal is visible behind him.
The Lord Mayor of London at St Olave Hart Street on 3 December 2012.
See what I mean about the hat?
Boris Johnson.
Growing his own plumed hat from scratch...
The formal gathering lasted no more than 30 minutes but was one more link in a chain that stretches back into the distant past, linking us to ancestors long departed and reinforcing patterns of service, obligation and culture that protect us from the passing whims of politicians, which are themselves perhaps amplified versions of our own fancies. Gross over-simplification, I know, which on the one hand glosses over the personal ambitions of the holders of ancient offices and on the other ignores the large number of dedicated local and national politicians. What I am arguing for is, I suppose, the virtue of a long view and the holding of conflicting ideas in tension. Freedom without law is a form of bondage and invention without structure is chaos; law without freedom is repression, while structure without invention is boredom. 

Time maybe to turn to matters medical. On 4 December I had my regular haematological check-up, currently taking place every three months. As regular readers will know, my outpatient appointments take place in the whizzy new Macmillan Cancer Centre, a short stroll from the main hospital building of University College Hospital in Bloomsbury, one of those areas of Central London that has been the cradle of much medical pioneering as well as of other scholarship and research. 

The mobile sculpture/artwork thingy, apparently made of "found" plastic components, that hangs above
the central reception desk at the Macmillan Cancer Centre.
Love it!
Some of the jobs that before would have been carried out by the receptionists are now in the voiceless care of computers. Or is it one computer, housed in its own secure enclosure, perhaps not even in the building—a lurking Shelob of a computer minding its web of a network in basement darkness? Whatever the digital underpinnings, volunteers are on hand to guide patients and carers through the reception process, which begins with scanning one's bar-coded appointment letter at one of the screen terminals standing at each of the four corners of the main reception area. Having been identified by hospital number and date of birth, the patient’s next task is to watch out for his or her name on one of a number of screens suspended above the floor of the reception, because also displayed there will be their next destination within the building: in my case the basement, for the blood test that precedes every meeting with a haematologist—other than the purely social, you understand! With all this high-tech receptionism in place it is almost disconcerting to find that I next have to take a numbered paper ticket (from a roll of these lying on the counter, not from the sort of dispenser you will find in the larger sort of post office) and write the number of that ticket against my name on a list in order to secure the brief encounter with a phlebotomist that soon follows. Soon enough the right amount of blood is drawn from my arm into the requisite number of sample containers and sent for analysis, so that the results can then be added to my computerised patient record. 

In the short time it takes me to take the staircase to the ground floor, my name has already been placed by Shelob on one of the suspended screens with a request that I present myself at haematology reception on the fourth floor. I have not been sitting there long before an opportunity arises to have a conversation with the person sitting next to me, who is waiting to see a different doctor for a different blood cancer. We compare notes, symptoms and side effects and agree that we are not very keen on the bold design of the flooring. The jagged, colourful pattern is artist-designed, although—in its resemblance to an impression I once saw of the aura that precedes a migraine—it seems out of place in an environment where calm is not only desirable but actively sought by most of those present. Not sure whether to congratulate those who commissioned it on bold thinking or to take them to task for error of judgment, I will try and remember to grab a picture of it for a future blog post, so that you, the reader, can decide...

My appointment itself goes well, with the general picture emerging of a stable state of good health. Shelob has not yet got round to placing the results of this afternoon's blood test on the doctor's screen, but I learn from the letter that she writes to my GP subsequently and copies to me that my haemoglobin and white-cell counts are a bit down. The latter is most likely explained by the fact that I was recently fighting off a chest infection while the former reading, as the consultant reminds me when I email her about it, has "bobbled about a bit" since last year's treatment. There is nothing in the latest readings to disrupt the picture of normality currently emerging and I am reassured.

Medical trip 2 that same week was on Friday 7 December, when I made my way to another node of the University College London Hospitals Trust, this time in a part of London unfamiliar to me, north of Holborn (although Holborn itself was once my stomping ground when I was training as a solicitor in the late 70s and early 80s). I was taking my troubled back and jangling sciatic nerve to the National Hospital for Neurology and Neurosurgery in Queen Square, just around the corner from the most famous children's hospital in the world, Great Ormond Street. The map provided with the appointment letter was very clear and it was easy to find my way to the imposing late Victorian red brick building. It turned out though that the spinal surgeon was holding his clinic that day in the former London Homoeopathic Hospital, now the Royal London Hospital for Integrated Medicine. I was able to form a good impression of the surgeon as we found ourselves going up in the same lift, he bearing an open, approachable manner as well as that staple of modern urban life, a takeaway coffee. 

The interior of the hospital was well lit and pleasantly decorated and the reception clerk had a wonderful manner with all those he dealt with: warm, compassionate and conversational and with no trace of "computer says no" about him. I did not have to wait very long to see the surgeon but there was enough time to note something of the difference between a neurology outpatients clinic and the environment of haematology that has become my home from home since 2010. Surely our ailments and sufferings shape and mould us, whether over a long time or—as in the case of trauma—suddenly. Haematology patients are often significantly pale and and lacking in energy, whether from the effects of disease or treatment,  carrying with them the memory or anticipation of numerous needle punctures, their emotions and mental equilibrium tied to regular cell counts. In the neurology environment that Friday were people dealing with issues of movement, gait or posture, dropped feet or shaking limbs. I find it helps to bear the extreme as well as the mundane consequences of disease and abnormality if one looks at the human frame and constitution in mechanical terms: blocked pipes, severed connections, bent or broken structures. With such a focus comes the engineer's hope of fixing problems: a little turn of the spanner here; there a restored connection or a brand new part, whether large or small. The really intriguing thing however is the interaction between what we can, for the sake of argument, call “mind” and what we can, by analogy with our own contraptions, visualise as “machine”. Thinking of us solely in mechanistic terms will not do: just think, for example, whether you would rather be thought of, nihilistically, as a "meat puppet" or, tenderly, as a "soft machine". Isn't it altogether wonderful and baffling, yet at the same time absolutely natural to us as humans, to find ourselves swayed and affected by such different arrangements of letters on a page or the sounds of variant sequences of words dropped into our ear?

A Cylon "Centurion" from Battlestar Galactica.
Definitely a "hard Machine", this one, but then the Cylons evolved, didn't they, viewers?
Before too long it was time for my consultation with the surgeon I had met earlier in the lift. Warned by my medical-student son that a surgeon on such occasions would not automatically have access to the MRI-scan images of my spine, I had taken steps to obtain a CD of the pictures from my GP, who in turn had had to request them specifically from the private company contracted to the NHS to conduct scans in my local area. I have to say that it seems odd to me that those whose job it is to tinker directly with the sensitive inner frameworks and systems of a human body are not supplied with such images as a matter of course. I imagine that the companies owning and operating the scanners are suitably paid for their services, so what is a little CD in this grander scheme of things. When I worked in property a plan was the golden route into understanding boundaries, rights and liabilities affecting plots of land. Verbal descriptions are also crucial, but to stint on piccies seems bizarre.

The surgeon was grateful for the disc, which he put it into his computer and in the digital version of a jiffy pictures of my backbone appeared on screen for us both to see. Here is one:

MRI image of my spine.
The surgeon has kindly aligned the mouse pointer of his computer
with the deformity that is causing my current discomfort.
Just to the right of centre in this shot you can see the displacement of lumbar-5 over sacral-1,
with the disc bulging out slightly to press on the nerve.
Otherwise, my spine is pretty straight, thank you very much!
The surgeon had a lively, even enthusiastic, manner as he outlined the nature of the deformity and what might be done to alleviate the trouble it was (IS!) causing me in the way of pain, stiffness and, sometimes, mildly impaired mobility. To my great relief, on seeing the problem and lining it up alongside my history of lymphoma and the energetic chemo that had been deployed against it, he pronounced that he would not be considering subjecting me to surgery. As I felt clutching anxiety release its grip on my shoulders, he said he was optimistic that a combination of physiotherapy and anti-inflammatory injection would be suitable in my case, although the duration of relief given by the injection could vary between years and mere months. In order to decide on the right course of treatment he would right away send me for an X-ray and a CT scan. Armed with those on our next appointment he would be able better to chart the way ahead. 

I had taken to this man instantly. To his open and informal manner was added a lucidity of expression, as well as an interest in me as a person, my work and my family. If surgery had turned out to be necessary I would have trusted that into his hands. When I thanked him for his time and the clarity of the information he had given, he made the memorable point that a doctor who does not communicate is forfeiting his most valuable asset, the intelligent and engaged patient. Lest I misunderstood what he meant by "intelligent", he added that the principle applied to patients of all levels of education, and whether or not they had much prior experience of medical matters. Powerful and energising stuff this was, and as I left his office it felt as if the bones of my lower back were already beginning to find a better alignment.

Before leaving hospital building no. 3 and returning to building no. 2 a quick word with the amiable reception clerk secured my next appointment with the surgeon. Building 2 was, you will recall, the red brick Victorian structure referred to some few paragraphs above and usually known simply as "Queen Square”—easy-peasy monosyllables replacing learned polysyllables derived from Greek.

Once you have passed the large commemorative plaques which name and celebrate the great (and presumably wealthy) individuals who set up and endowed "Queen Square" in its original form and which are of a type often to be found adorning the entrances of hospital buildings that pre-date the National Health Service, you find that the original innards of the fine old place have largely been replaced by glass, steel and modern flooring, all bathed in the pin-sharp clarity of halogen lighting. In this case all these replacements seem well conceived and executed, but what was more important than all the modern shininess was a similar personal warmth shown by the staff to that which had been so evident in the building I had just left. There was the cheerful receptionist who escorted me personally to the x-ray section, not wanting me to lose my way in unfamiliar surroundings; the radiographer who calmly explained the poses (for what else can I call them?) that I should hold in order to provide the surgeon with images of how my back was functioning (or, rather, wasn't); the CT technician with the neck tattoo who did not allow the efficient carrying out of his professional tasks to obscure either his humour or his genuine concern for my safety as I got on and off the scanner table.

At the moment I passed through the implacably smooth high-tech greyness and revolving lights of a CT scanner for the third time in my life I reflected on how far medical understanding, technologies and techniques had developed since the days of the two Tudor physicians I know anything about: William Turner and his son, Peter, both of them buried at St Olave's and whose combined lives spanned the period from 1508 to 1614. William was learned and indeed pioneering in close observation of the natural world and in the use of plant-based remedies and the therapeutic merits and demerits of wines, while Peter leaned more towards the chemical compounds deployed by Paracelsus and advocated the use of arsenic pendants ("plague-cakes") to avert the evils of the plague. Theirs was a world where the health of body and mind were maintained by balancing the "humours”—those classical entities associated with dryness and moisture, hot and cold, earth, air, fire and water—which survive into our age-millennia later-in the names given to four basic temperaments: sanguine and phlegmatic, choleric and melancholic.

In such a world, in 1612, the desperate royal physicians striving to save the young Prince Henry, the elder son of King James I (aka James VI of Scotland), from a ghastly death from what is now believed to have been typhoid fever, applied dead pigeons to the shaven head of their teenage patient and a split cockerel to his no doubt restless feet. The remedies were of no effect, which is why our nation has not so far had a King Henry IX and why the Throne,  instead of passing to someone groomed from his earliest years in the arts of kingship and in all manner of cultured, sporting and warlike pursuits, instead passed to his sickly younger brother Charles, in whom were allied a certain personal likeability and a catastrophic lack of suitability for guiding his people through particularly turbulent times-an inadequacy which led to the English Civil War and the shocking political expedient of his own death on the executioner's block. At its heart, this is a story of one young man's fatal illness, but just look at how the ripples spread in our human pool. The mind is identical with the individual brain? Somehow I don't think so.

The high-tech investigations done, it was time to leave the building.
My ruminations on the history of medicine and the role of plants in it were bolstered by the sight of plants in this plaque identifying the hospital that I saw on my way towards the exit.
In our techie world we do well to remember our roots.
Finding myself back on the streets of Holborn and the weather having improved in the several hours I had spent shuttling between hospitals, I decided to revisit old haunts and to pick up the Underground at Temple Station, which would mean walking through Lincoln's Inn Fields, that great square housing both Farrer & Co, the Queen's lawyers, and that monument to architectural experiment and eccentricity, Sir John Soane's Museum. From the square my walk took me into Lincoln's Inn, whose collegiate architecture from the 18th and 19th centuries exudes an atmosphere—no doubt partly deceptive—of calm, measured study, reminiscent of the quiet quadrangles of our ancient universities. The impression is reinforced by the hand-painted boards at the entrance to each set of chambers: black lettering on a white background in a style that has not changed for two centuries at least-bearing the names of the learned barristers within; here and there letters after the names and titles identifying those members of chambers who have reached judicial office. The building in which I trained as a solicitor is still there but has had a name change and is no longer occupied by the firm I worked for between 1979 and 1984. The firm itself has grown substantially since then, having merged with larger concerns—who swallowed whom? It has kept its name (dropping the dated "& Co." that marked it as a creature of the 19th century) and expanded its reputation beyond acting for substantial individuals, landed interests and charities to swim happily with the big boys in the corporate shark pool.

I walked out of the Inn and down the alley called Star Yard where you can still find an ornate Victorian metal urinal enclosure; although its entrances are blocked, preventing use of the structure for its original purpose, you can still marvel at its quaintness and rarity. I paused for a few moments by the window of Ede & Ravenscroft, makers of wigs, robes and shirts for the sort of lawyers who have to dress for the part. While admiring the craft that had gone into the making of a pristine wig, now on display atop its oval case, but which would one day perch on the learned bonce of some unknown barrister, I wondered—not for the first time and not alone in raising this question—how it is that styles of dress from the 18th century had been settled on for so long as the last word in how lawyers should appear in court. Once again, hallowed modes of ceremonial dress make an appearance in this blog post.

I emerged into Carey Street, which runs along the back of the Royal Courts of Justice—the name of the street being formerly synonymous with the state of bankruptcy—intending to make my way to the Tube via another barristers' enclave, the Temple. First though I took a short detour along the street of financial misfortune in search of the old narrow pub that faces south towards the Courts, frequented no doubt over the last couple of centuries by a mixture of those celebrating victories in court, those drowning their sorrows after defeat and those nerving themselves to do battle before the judges in their stronghold across the road. The Seven Stars is still there, looking neater now and having moved towards the upper limits of my price range after the gastronomic revolution that has swept these islands in the 30-plus years since I used to bolster my own wavering courage with a swift half.

The Seven Stars pub in Carey Street behind the Royal Courts of Justice.
In the window was this dapper festive cat.
Resuming my progress south to the Tube I entered the Temple through its discreet northern entrance on Fleet Street, my heart lifting once again to be within the boundaries of the City of London, whose proud dragon stands on its haunches in the middle of the road, itself named after one of the many, now diverted and buried, rivers of London.

17 Fleet Street, one of the few buildings in the City pre-dating the Great Fire of 1666.
The entrance to the Temple from the north is through the archway beneath the half-timbering.
Once inside the Temple, I looked into a recess in the wall to my right and noticed, as if for the first time, that the quaint-looking lamps inside it were powered by gas. So, at least this part of the legal enclave had taken to its bosom the technology of the 19th century. All this progress was too much for me, so I turned east and took refuge in the reassuring embrace of The Temple Church, its west end being originally a Norman round church, inside which are to be found tomb effigies of ancient knights, weathered over the centuries and rudely damaged in the aerial bombing of World War II. Drawn further eastwards into the newer (ha!) parts of the building by the sounds of a fine choir rehearsing music for Christmas, I found memorials of the Jacobean period, their painted effigies showing their subjects in poses of devotion or surrender to God.

Putting theology aside for a moment (although, I must confess, I cannot), many of the churches of London, and of course elsewhere, are truly remarkable in being buildings—or, at least, locations—that have been in continuous use for centuries: not only "use" in the mundane sense, either, but employment for the specifically spiritual purposes of prayer and worship; hospitality, healing and celebration. The mundane makes many appearances, to be sure—one of the reasons, for example, that memorials reward close study is that they vividly illustrate changing patterns of wealth in society, some of their initial purpose having been to remind of achievements in the knockabout realms of domestic and international trade and the entrée that worldly success gave to the courts of power and influence. However such ostentations become overlaid with a patina of alternative meanings and nuances even as the physical structures around them and the painted or plain stone effigies they contain change in appearance under the dust, grime and smoke of the passing centuries.

The continuing presence in a world city like London of such wonderful, sometimes very ancient, buildings is a call to stop and meditate on the deepest experiences available to us as humans. Seasoned readers of this blog will anticipate at this point that I am going to attribute a divine origin to these experiences and talk of God. If this is a step too far for some, perhaps you will allow, at least, talk of the "numinous”—that sense of mystery that we find in the sort of places our Celtic ancestors referred to as "thin", where the division we feel between our individual personality and what we share with each other, nature and the universe beyond falls away?

I stepped back outside into the jumble of centuries represented by the various buildings that make up the Temple, noticing again the faint glow of the gas lamps dotted around and then remarking—as I looked into the rooms of the barristers' chambers alongside my route to the Thames embankment, their comfortable spaces filled with shelves of law reports and other learned texts—that the Bar's tastes in office resources had moved beyond the 19th century and into the present one, as nearly every desk on it brandished a generously sized computer monitor. Lawyers—by which I mean the good ones—are valued for holding in creative tension the lessons of the past, the needs of the present and the anticipation of the future and somehow the collage of costume, architecture and the latest information technologies embodied this. Their services will cost you, mind.

This harmless window-shopping over, I walked along the riverside, into the Tube station and made my way steadily home, conscious all the time that my positive mood had been bolstered by the surgeon's confidence several hours before.

The fourth visit to a hospital that week was to see my mother, who was recovering from an operation. My brother had been staying in her house through the week and visiting daily, so was there to great me with a warm hug as my train from London pulled into the station. After a rather good Cornish pasty eaten alfresco, we spent the afternoon with Mum, who was recovering well, as she continues to do some weeks later.

Founded in the 19th century but now housed in the latest architecture, this final hospital of the week is a gleaming embodiment of the Private Finance Initiative, which I first saw flagged up in the commercial property press well over a decade ago, touted by those running pricey professional development seminars and conferences for chartered surveyors, lawyers and financiers as the Next Big Thing. Obviously those attending such events took careful notes, as the country is now dotted with nice buildings built by the private sector but the costs of which are being borne by John and Jane Citizen and succeeding generations into what seems like eternity.

On the way out my brother and I saw an eminent public figure accompanying an elderly relative into the hospital. The sight made me reflect on the benign centrality of the NHS, for all its faults, to our sense of social identity, even our patriotism. In recent days we have stood by our radios or sat in front of our televisions or with our newspapers before us, scarcely believing the horrors that emerged from the enquiry in Mid Staffs. It all seems miles away from what I have been describing of NHS excellence in this post and throughout this blog. I would just note at this point that in all of my hospital experiences since 2010 I have never knowingly seen an NHS manager on the shop floor, let alone spoken to one. Has anyone out there reading this spotted  one? I would love to know...

A brave soul entering Stafford Hospital.
It has taken so long to write this post, pecking away at the eentsy keyboard on my phone in snatched moments, that it is now nearly time to meet the spinal surgeon again and find out what treatment he is going to recommend. Before that, I am about to have another "NHS moment”, but this time of a different sort. After grumbling away for a few weeks, my left upper wisdom tooth has declared itself infected and therefore expendable. In a few minutes my brother will be arriving to drive me to the surgery a mile or so down the road. At some stage I am bound to give you some idea of how it goes. By the time you read this, it should be over at any rate!

Socrates, a wise man.
Wisdom teeth are so called because they typically make their appearance
when an individuals is between the ages of 16 and 25 and therefore
presumably more wise. Not necessarily.


Tuesday, 13 November 2012

In Limbo


I never meant to leave writing behind, honest. At the same time, it seemed that, by the time of the last entry here, some sort of milestone had been passed: the shock diagnosis of September 2010 had led directly to the absorbing project of two significant tussles with chemotherapy, with all their associated procedures, subsidiary medications and appointments, finishing off with some minor surgery, the final flourish of a third bone marrow biopsy and the welcome assessment from my consultant that I am currently in a good and deep remission. It felt like time to take a rest from self-examination, return to the consoling (ha!) rhythms of work and just let normal life drift its way back in like the returning tide seeping across a sandy summer beach.

That tide has indeed come back in, bringing with it some interesting bits of driftwood along with some less attractive flotsam. Yet I have not lost the urge to write, record, reflect and, occasionally, to inform. In the years before encountering the good Dr Waldenström and his eponymous lymphoma I had occasionally put pen to paper to make some sort of record of the passing moments and their associated thoughts and emotions, but never for public consumption and certainly not with any great sense of purpose. Being unwell with a rare disease changed that, as it did a lot of things, and I now face the fact that some sort of minor muse has taken up residence in a corner of my psyche, occasionally emerging from her cramped quarters to nag me into action.

So, what has been going on medically of late? Until recently, I had been grumbling along with one of those tedious upper respiratory tract viruses that lumber one with a ragbag of minor symptoms, whose accumulated weight slows the body down, interferes with simple tasks and announces to people around by means of hacking coughs and frequent sniffles that giving you a wide berth would be in their best interests.  A visit to the GP established that I had a small secondary infection in my upper right chest, so a week of the standard entry-level antibiotic, amoxicillin, was prescribed. A tickly cough proved obstinate for quite a while, but the little capsules finally seem to have done their work.

Rhatany and Cocaine Pastilles
Believed, er, no longer available. What reputable drug companies used to be able to get away with, eh?
Rhatany is a name given to krameria root, whose astringent biological action is ascribed to rhataniatannic acid, which sounds like a drum rudiment.

One of the things I am far from sure of is the state of my immune system post-lymphoma and post-chemo. From what I can gather, what may have really taken a clobbering while the lymphoma was assembling its forces and in the subsequent battle against it with the help of powerful poisons—rather like relying on mercenaries supplied by Stalin—would have been my acquired immune system, the bank of antibodies acquired in response to specific pathogens as I engaged with the world outside the womb over more than five decades. For some months now I have been battling a little colony of minor warts on one of the fingers of my right hand. Many people have to deal with such things at some time in their life, but I cannot help wondering whether they would have surfaced in the old days before diagnosis.

The possibility of infection is a constant theme for WM patients and some people have had a much worse time with compromised immune systems than others. I have certainly had my low points, needing strong antibiotic intervention, both in the weeks that followed soon after diagnosis in 2010 and while having my stem cell autograft in 2011. What I have found since is that I have not caught everything going, but there is always the apprehension that some virus that previously one might have shrugged off will grab hold and take permanent lodging like some raucous gatecrasher at an elegant social occasion, opening the windows to allow his friends to storm in, swipe the drinks and puke on the carpet. 

Infection is one thing (it's of course far from that, being a countless horde of things) but a bad back is quite another. Over the last few years I have experienced increasing lower back pain, which more recently, in fact preceding the WM diagnosis, has hardened into a nodus of sometimes marked discomfort on the right side, accompanied by hot and cold nervy numbness down my leg and into my foot. Walking can be significantly hampered by stiffness and pain, particularly by the end of the day, although it is even ground, such as pavement, that presents the most difficulty. In summer 2011, and even since, uneven ground has made for more comfortable walking: 5-mile Cornish cliff walks have been as pleasant as ever. Also, cycling does not tax my back but let me not bore you at this point with what it does to my knees.

Who needs the dubious ministrations of rhatany and cocaine pastilles when you have Cornish cliffs to help you breathe (and walk) more easily?
This is Trevone Bay in North Cornwall, a favourite holiday destination for me and my family since 1993.

In all conditions to which we attach the label "medical" it seems that we reach a tipping point at which the interference of symptoms with that assemblage of events, habits, duties, emotions and the like on which we place the tag "normal life" is such that we find ourselves saying words to the effect of "something must be done". In the case of my back I found myself rocking on this fulcrum of misery some time ago, but by then back pain was getting mixed up with the general slowing down and lack of energy and ease of mobility contrived by lymphoma; indeed I wondered if the back problems were a symptom of WM.

Now that I am well in the haematological sense I must address the back and its linked problems.  First stop, earlier this year, was referral to the local physiotherapy services, who, after detailed examination and history-taking, prescribed some floor exercises and stretches that I have been following as religiously as I ever can anything. These are providing some relief, even relaxing me sufficiently at various points for the cat to feel comfortable sitting on my stomach while I go through the routines: all very well for her but not very helpful for me, so she is swiftly evicted.

However by a few months ago it was clear that exercises alone would not deal with the fundamental issue. Time to go back to the GP, who referred me for an MRI scan, which would be carried out by a company contracted to the NHS to provide scanning services. The scanner in this instance would be housed in a trailer that does the rounds of various locations and in due course I was given a date when the expensive device would be in my area: the venue turned out to be the generously sized car park of a GP surgery in Teddington, a couple of miles or so down the road from my house.

There was a small waiting area in the trailer and a locker in which to leave any metal objects that would interfere with the scanner's magnets: keys, watch, loose change... I also had to sign a declaration that my body did not harbour any metalwork, such as orthopaedic pins, plates and screws. There were two staff in the trailer: one to clerk me in and deal with admin and the other, significantly older, to operate the scanner and process the images, which were displayed on a screen that he was watching intently for most of the time.

An MRI scanner – The Tube Ride With A Difference
Somehow you can tell this photo was produced for the private healthcare sector, can't you?
People smile in the NHS too (quite a lot, actually).

After about 15 minutes it was time for me to enter the scanner room, escorted by the older man. I lay down on the couch that was then raised to the height of the scanner's central tunnel, ready to be slid into place. Headphones were provided, through which the sounds of an MOR radio station warbled thinly. I was also given a rubber bulb to hold throughout and squeeze if I panicked and wanted the whole proceedings to end. After telling me that the noise of the scanner would eclipse the meagre sounds of the pop music and advising me to keep my eyes closed throughout the scan, which would last about 20 minutes, the technician manoeuvred the couch into the tunnel and resumed his place at the monitor screen, closing the door behind him.

I was completely unprepared for the noise of the scanning process (or, rather, processes, since there were several in succession). The noise like a road drill stopped, allowing Mark Knopfler to surface briefly in the headphones, only to be drowned out by a numbing techno hammer beat the experience of which could be likened to being locked in a particularly minimalist disco. There was periodic notice from the technician through the headphones of the duration of each scan and it was all over soon enough, but not before the reason why the technician had counselled against opening my eyes was borne in on me. Some way into the proceedings my nose started to itch and I lifted my hand gingerly to scratch it, finding in the process, as my hand made extremely rapid contact with the roof of the tunnel, that the scanner was much more confining than I had thought. Although my own neuroses tend to constellate around bridges or any other high structure with low railings, in order to avoid allowing my synapses to admit claustrophobia to the population of hang-ups I kept my eyelids firmly together.

The Millau Viaduct in southern France, the tallest bridge in the world.
I don't care if it was designed by Norman Foster, I'm not going on it.

Released from the device after the final sonic assault, I collected my belongings and left the trailer with what I hoped was a reassuring smile for the next patient in line, who was sitting in the waiting chair I had occupied a while earlier.

In about two weeks a letter arrived from my GP inviting me to make an appointment to discuss what the scan had revealed. I had long suspected what the problem might be: another condition with a long Greek name that I had first heard of 38 years ago, when I was 19 and had a back X-ray after a road traffic accident. A motorcyclist, careering on to the pavement after colliding with a car whose driver was foolishly overtaking him at the bottom of Richmond Hill, had jammed my back against some railings by which I was sitting with some friends at the end of an afternoon of pleasant activities in the park. The name is "spondylolisthesis", which, off the top of my head, means something along the lines of  "displacement of vertebrae". At the time I was advised it was no big deal.

Spondylolisthesis
Not very nice.

Sitting with my GP as he went through the MRI report, describing a kink in my spine formed by lumbar 5 riding out over sacral 1 and causing the disc between them to make contact with, and irritate, my sciatic nerve, I wondered whether the deformity might be traumatic in origin rather than, as is more usually the case, congenital. Maybe I will find out but, whatever the cause and however innocuous the condition at first appeared all those years ago, it has now evolved into something that has a marked impact on my comfort (pretty much constantly) and mobility (sometimes). As medical people say, it has become a "quality-of-life issue".

My GP sometimes seems to share that uneasy view of surgeons that physicians can harbour, leading one to think that the two halves of the medical profession see themselves as separate species. On this occasion however he was in no hurry to spare me the ministrations of a spinal orthopaedic surgeon, although he did say that the surgeon might recommend an injection rather than manoeuvring the offending bits of my spine back into place and securing them with the sort of metalwork that would bar me from ever again having an MRI scan (how ironic that would be). I think he was just trying to spare me anxiety, since, if what I visualise going on in my lower spine is anything to go by, it seems likely that ironmongery will be called for. It's a bit of a strange time to be me: seeing two different surgeons in one year after a lifetime avoiding the knife. Mind you, it seemed at one point as if the two consultations would not top and tail 2012, as the chosen consultant is much in demand and until a few days ago I thought the Yuletide turkey would be facing the knife before me.

It has been taken several months since the scan was first arranged to get this far, but the period in limbo should end during the first week of December, when I go the National Hospital for Neurology and Neurosurgery, Queen Square. I will keep you posted.

Limbo dancing
Naaaaah! Think I'll sit this one out.