Something On My Mind

Gamma1

Recap Feb 2012:
When I first suspected something was wrong, and throughout the whole of that year to eighteen months that I did nothing about it, I was convinced that what I had was oesophageal cancer. I think this was because Christopher Hitchens was suffering exactly this. The Hitch is something of a hero of mine, is, was. The main problem that makes oesophageal a cancer with an appallingly low survival rate is the routinely late diagnosis. It manifests with a cough and with heartburn. Only belatedly and very much too latedly, with a difficulty in swallowing. Its main causes are, of course, smoking and drinking. Whilst I might identify with both those things in substantial measure, my indulgence was nothing as compared to the reputation The Hitch “enjoyed” for such things. He and Martin Amis and a coterie of close friends. I followed Christopher’s progress as he wrote in the vivid and eloquent style we would expect of such a brilliant writer, orator and raconteur. It frightened and saddened me in equal measure. I knew these were amongst the last words he would ever write and still I didn’t act, I didn’t get myself to the doctor, I didn’t stop smoking, I awoke every night with a cough and most days I would have a flash of a memory that I needed to go and get this checked out. Something, work, always intervened and when it didn’t, the thought of the obstacle race that is the appointment system with our local GP surgery put paid to any further deliberation. Finally, I presented myself there specifically citing my fear of a cancer of the oesophageal kind, only to have the notion politely rubbished by my lady doctor who told me it sounded much more likely to be one of the pulmonary kind. I pointed out that this could be one of the reasons by which the other goes undiagnosed so frequently but she insisted, booked me a chest X-ray and the rest, as they say, is history. Sort of.

Letter to my friends, April 2013:
Last autumn, 2012, given the removal of half of my right lung, I felt and was advised that a flu jab would be a wise precaution and, whilst I was at it, why not one for pneumonia too – I’d only recently discovered from my brother that there was such a thing. I took them both. Last year, 2012 was the wettest year in history, apparently, a fertile breeding ground for such viruses and the last third of last year and the first third of this have been a thoroughly grey, cold and depressing period during which so many people around me have suffered colds, flus and other unspecified bugs and illnesses. I have escaped them all but there has been a feeling throughout that I have been under their attack but with only the mildest of symptoms. As if true to ones desire to be healthy, my own incredible immune system, with a little help from the vaccines perhaps, we’re working overtime and succeeding in keeping me safe and sparing me from a full blown attack.

It was during this first quarter, January maybe, February and March certainly of 2013, that I found myself with a light cough, a cough that didn’t seem to be going away. I remember being conscious of the fact that since my last CT scan in January the next one was not until mid-June and I had wondered, at the time I was given that appointment, why there was a five month gap rather than the usual three. That alone was a concern but now with this cough I was not comfortable with waiting till then. My wife had been talking about us going to New York in June and so there was a potential conflict of timing to consider too. I remember well Conrad, my best friend, life saver and Oncologist, telling me in no uncertain terms that there is no such thing as a smokers cough, as such. There are serious physiological conditions that are caused by smoking, such as emphysema and cancer, but nothing as benign as a “smoker’s cough”. If it persists for three weeks or more, and there’s no obvious reason why, get it checked out. Not long after that advice, the government launched a TV advertising campaign saying pretty much exactly that and, I hope, it has led to many more people getting early diagnosis of serious and curable diseases. I let it go for two months. It was a light cough. I might cough once or twice during the day, always at least once at night, perhaps just one cough, perhaps two, never more. It felt as if it came from a tickle at the back of my throat. It didn’t feel like it came from my lungs but of course, all coughs are stimulated by the lungs and their need for immediate oxygen. Was this the bad joke? I had half my lung removed and now, now, I get what I dreaded, the oesophageal kind.

Then the cough stopped. A couple or three weeks pass and no cough. The thought was still nagging me though, as was the longer than normal wait for the scan. I decided to contact Linda in Radiology. She had always been very helpful, it was she I had first spoken to when I called on that Monday morning and said, “I have lung cancer, I need a PET/CT and an appointment with a first class consultant.” Two hours later and I had appointments for both for the day after next. She was efficiency itself and kind, caring and considerate with it.

I sent her an email but received an out of office reply that she was away till the following Monday. When I contacted her the following week I shared my fears with her and asked if it was possible to bring my scan appointment forward and whether we could include my throat in this same scan. Well, the throat is in the head, don’t you know, and so when you want the throat you kinda get everything else that’s in the head too, which thus seems to make it be referred to as a “brain scan”. In order to get Conrad to agree a brain scan, Linda invented a few symptoms of her own making based, presumably, on long experience.

Thus when I next met with Conrad, coming directly from the CT, he started asking me about my states of confusion (!) and headaches….I played them down without denying them entirely, very consciously not wanting to drop Linda into what I felt could be a whole heap of trouble for her whilst, at the same time, not wanting Conrad to be misled into thinking I really did have some kind of brain tumour or dementia, or something. I just wanted to know if my throat was okay but I was having difficulty steering him away from his topic.

I was vaguely aware of the image he had on his computer screen but I wasn’t paying much attention to it, other than to note that it clearly wasn’t of my lungs, nor a profile of my head showing the throat, it was obviously of a brain. No reason to suspect that it was of my brain and, if it was, that would be no surprise given that’s what I’d just had a scan of, amongst other things, but unusual compared to previous visits and thus, once again, all the more reason why it might be the first thing he looked at.

It had seriously never crossed my mind, not even for a fleeting flight of fancy that there would be the slightest thing wrong with one of the finest brains I knew and one to which I was singularly attached. “So, how are my lungs?” “You’re lungs are fine, Robin, excellent in fact.” Great news, I like excellent, “and my throat, my oesophagus?” “That’s fine too, also excellent.” Well that was that then. Relieved, I settled back momentarily, preparing to move onto the phase where we discuss things generally, talk about my progress and my next appointment and Conrad would ask after my wife and how things were in general… This relief was shattered, in the most abrupt way ever, when Conrad adjusted the image on the screen, bringing into stark focus a white globe at the centre of my brain that didn’t look as if it belonged there.

I’m used to looking for white and black things amongst the sea of grey that makes a typical monochrome scan. Not all are things to worry about but all things to worry about are black or white and usually white. As he moved the images on the screen with his mouse, he was talking…. “Unfortunately”, I heard…and “tumour”, I heard that too. It appeared that a random, stray, single cell from my carcinoma had travelled up to my brain where it found itself a safe and fertile home, nestled between the two lobes of said brain, with space to grow, a cosy incubating climate and had thus multiplied into a tight spherical ball of cells twenty one millimetres in diameter. Three quarters of an inch. A large marble – but a lot less fun than a marble.

It clearly wasn’t sitting neatly on the surface, it was just about as deep as a tumour could get before it starts coming out the other side. I had an instant mental image of a surgeon, deftly paring back the squidgy substance of my brain mass and delving down with both hands in an attempt to locate and separate and extract this hideous invading creature that threatened me so viscerally. I was overcome with a revulsion at my own mental images of brain surgery, gleaned from TV documentaries and an over active imagination. Simultaneously I’m trying to cope with a level of shock and surprise, greater than anything I’ve experienced since the beginning of round one of this whole, just last year. No one ever mentioned a tumour in the brain, that was never part of the risk calculation. It’s only been discovered now because of some white lies that were told, in order to get the hoped-for “clear” diagnosis for my throat. How could it be that the thing we invented turned out to be the one real thing to worry about? It was almost as if we had made this happen. I found myself wanting to say to Conrad, “no, you don’t understand, I don’t actually have any symptoms, I don’t have a cancer in my brain, we just invented all that to get you to authorise the throat scan…you must have made a mistake!”.

No mistake. Irony, maybe, in sack loads, a twisted turn of fate, a sick joke, the tables turned but no mistake. You pretended you got it, now you’ve got it. That’s how it seemed. Turned around though, what a stroke of luck that I suspected something, albeit the wrong thing. That I brought forward the scan by two whole months, that Linda knew the magic symptoms to promote to get my head included and that she was willing to stick her neck out to help me. Without that, the tumour would have grown to a larger size, possibly larger than is comfortably operable, before we knew it was there and probably would only then be investigated when it had started to generate symptoms – currently (at time of writing) I am entirely non-symptomatic. Left longer it might spread, metastasise and make the whole thing a much greater threat than it is. Once again, in the midst of the worst catastrophe of my life to date, I feel lucky.

Conrad did use the word a lot, “lucky”. It’s always a difficult word to swallow in these situations but never more so when you’re deep in the throes of trying to take in the enormity of the thing you are just starting to get your head around. Puns like that come up all the time with no help from me. Another phrase keeps prefixing my words in the form of a pun, “I’ve got something on my mind…”

He also used words like operable, a word I really didn’t want to hear, it just stimulated all those fearful images of surgery. I know it’s meant to be reassuring but all I want to hear is, “don’t worry, when you wake up all of this will be over and things will be the way they were before this latest episode of the nightmare”. He talked of “convalescence”, the words “months” and “several”, of “therapy” as in, what?, I may need help with thinking after surgery? Help with talking, moving?…oh my god! I am my brain, that’s me, that’s what I do, that’s what I am. Take the body, I don’t care, it’s just a conveyance but for fuck’s sake don’t start screwing with my brain, with me, with the essence of me…

Oh and, “you’ll have to hand in your driving licence….and you may never get it back again….”

I told Conrad he was no longer my favourite person and that he might be coming off my Christmas list this year. He gave me a form to set up an MRI, when I was ready, so that we could double-check whether we were dealing with, as we hoped, a single, “stable” metastasis or whether it had friends and relations to keep it company. I hoped very much that it was a lonely sad and solitary little fucker. Friends and relations, of the tumour that is, are never good news in situations like this.

Given that I really hadn’t been expecting anything at all to come of this consult, it hadn’t seemed like a bad idea, given that it was scheduled for 7pm, to arrange dinner at my very favourite restaurant with my wife and my dear friend and colleague, Terry from Sydney, who was with me for the week. It now seemed like a very bad idea. Do I tell them at the restaurant and ruin the evening and more importantly, the meal? My wife would be inconsolable. Terry would be upset and embarrassed and we’d all miss out on a fabulous meal. On the other hand, just shut the fuck up, pretend it never happened, report that my lungs and throat are “excellent” and we have a great story to back up a celebration meal. What a truly fabulous and doubly memorable meal for lots of right reasons (the endless plates of delicious food and the glorious Amarone wine) as well as for the somewhat notable occasion. We had a great time.

My wife travelled back on a different train (no it wasn’t something I said) so I was able to talk to Terry alone and share my story, as well as preparing him for the fallout that was coming when my wife found out, the next day. “Ri, I have something I need to get off my mind…” I told you, these puns just keep tumbling out.

So, on Monday morning Conrad will get the MRI results from this morning and he’ll call me with the good news – lucky, remember? Then we can discuss the consultant I’ve tracked down and see if he has any better recommendation but most importantly I need to make an appointment with one or another (essentially anyone at all as long as he is the very best in the entire known universe) by Weds(ish). This is not like the previous thing, time is of even greater essence. Get ’em while they’re young!

Meanwhile there’s lots to organise, lots to delegate, lots to find out about, lots to put in place, lots of very special people to talk to. This is part of all that and I hope it doesn’t fill you with quite the fear and dread I’ve gone through, it’s in hand, it’s back to the level of a tough problem with a series of possible solutions and that’s what I do, I solve problems. So here we go again, one more time.

Love you all, sorry to do this to you, I shouldn’t have ever smoked, I know, but I’m through beating myself up for it, we all have our vices and our regrets, this one is mine. I may be out of action for a while, travel might also be a little restricted, if I’ve got an appointment scheduled with you I might have to let you down, I’m just not in control of my own diary right now. I know you’ll forgive me. I forgive me. Ri is the one finding this hard right now and she’s going to need lots of help so it would really help me if friends could do what they can to help her, that’s the one thing I’d really appreciate. Thanks to everyone.

A week later, another letter:
So it turns out that I’m something of a fraud, a charlatan, apparently, a doom and gloom monger of the first order.

Not that it isn’t the case that a rather confused lung carcinoma thinks it’s ok to take up residence in the very cosy, protected and desirable residence between the left and right sides of my brain – a communication conduit that not everyone believes is as free and fluid as it might be (but what do they know) – it turns out that the little critter doesn’t know what we’ve been up to since his ancestors evolved all those years ago. It always fascinated me that any living thing would think there was any merit in basing a lifestyle that’s so totally and utterly dependent on the very host that you are hell-bent on killing, thus ensuring one’s own demise and, ergo, that of what would otherwise become one’s offspring. However, it’s always been a rather comforting thought too, in a very weird and tangled way it must be said.

What cancer cells don’t get is that we have nerds. We’ve had nerds for a long time but in recent centuries we’ve learned to capture, distil and transmit that accumulated nerdiness onto subsequent generations thus giving each a leg up so that the base is raised each time and, from that base, great new truths and discoveries can be layered upon and boundaries to their potential achievements simply cease to exist. Only time, determination, curiosity and the evolution of science fiction into fact is required – together with the sustained encouragement of young, brainiac men and women who suffer the deprivation of social skills their parents might crave for them but who we know and love, or abuse, as nerds.

One such nerd was Lars Leksell (1907–1986), a Swedish physician and Professor of Neurosurgery at the Karolinska Institute in Stockholm, Sweden. He was the inventor of radiosurgery.

I’ll tell you a very “funny” story relating to Lars Leksell in a moment. Ri suggested he sounded like something out of a Superman movie, Angus proposed the baddie. You’d think, with a name like that wouldn’t you but, as it turns out, this is very much one of the good guys. Lars Leksell was one of the first to develop a stereotactic apparatus exclusively for human functional neurosurgery in 1949. Then in 1951 he developed the concept of radiosurgery and combined his idea for this stereotactic apparatus he had come up with which was dubbed the Leksell Stereotactic Frame – catchy title for an equally not catchy looking helmet that is fitted to the skull, screwed into position (with a Phillips screwdriver into the skullbone!) and resembles something one knows one has seen on countless horror/sci-fi movies even when you can’t quite name the movie itself. One of the clever things that Lars added to the concept that dates back to a British guy in 1908 was the concept of using polar coordinates. Throw in some radioactive cobalt, position the thing fairly, squarely and very securely to someone’s skull, pass the rays of that cobalt through a couple of hundred apertures (think of a colander) at exactly the right angle so that they all converge on a specific, focussed point and KABOOM!

Yep, like a fleet of StarFighters circling the rogue planet, each pointing their laser/destructor/whatever beams at the centre. The sphere first glows, then pulsates, then erupts in a blinding flash only to vanish as it’s gazillion component parts evaporate into the ether… Well, something like that anyway. I really don’t mind missing the glowing, throbbing bits – though apparently there is some of that for a while – but I’m happy to ‘pass’ on the eruption and take what actually happens, a very gradual shrinkage of the tumour as it’s now genetically re-engineered DNA turns against it, stopping it from reproducing (cell division) and thus withering and dying and being washed gradually and unceremoniously away over the next year or two…

The Leksell Gamma Knife is manufactured by Elekta Instruments AB, a Swedish company which manufactures stereotactical surgery and radiosurgery equipment, based on the inventions of Lars Leksell. It was founded by him and his son, Laurent Leksell, in 1972. These machines are now available around the world – and in the NHS – Elektra even have an office right here in Crawley, on my doorstep. Not that this has any impact on anything. What’s more important is that they have one at my lovely Cromwell Hospital, my (am I going to say this?) home from home for the last year or so. Lovely people all, I could never imagine feeling comfortable in any hospital environment but honestly, this place holds no fears for me.

I go in next week, I get calmed down, I get local anaesthetic to detract from the knowledge that I have a helmet being drilled into my skull and, yes, Ri apparently gets to take photos – I kid you not. She asked, the lovely Mr Peterson said “sure” and asked if she wanted a sound track. Then they hook me up to an MRI scanner and they do the highest possible res imaging of my tumour mapping every teensy coordinate to ensure a <mm perfect map of the thing. This is fed into the Gamma Knife computer which then targets the beams, adjusting their angle and depth, their intensity (low to avoid slicing my brain apart on the way through, ultra-high when they all converge and stop at the appropriate point). As my neurosurgeon put it, they then all put their fingers in their ears and retire to a safe place whilst I am left alone with my thoughts and my bubbling blue cobalt buddy.

So as Victor said, under the weight of my incessant questioning, at some point Robin you’re going to have to trust your surgeons. Excellent advice, folks, especially as they’re both saying exactly what I wanted to hear 😉

So, Chas, I will be at the book-signing and no that doesn’t get you off the hook of our other commitment. Courtney/Larry/Elyse/Victor/Laura/et all, yes, I’ll be in NYC in June. Courtney/Laura/Donna I won’t be in my pyjamas when you come over here – phew. Gordon, I can make it to Carolyn’s big birthday bash – better start planning my own I guess. Doug/Stella, hold that stable door open, Ri’s looking forward to checking out the horses. Trond, I’ve promised Ri a weekend in Stockholm, I think there’s someone else there now I need to go and pay homage to as well as you and your lovely family.

I promised you a funny story about the Superman bad guy, Lars Leksell. So on Weds Ri speaks to my dear, dear friend and bibliomaniac, Michael. He and I have known each other longest I think of anyone else outside my immediate family. Michael lives in Paris, he is (though he’ll be wilting from reading this) a renowned and much sought after world expert on many things bookish. For more years than either of us care to recount he has been the guy in the English Language bookshop in Paris that bibliophiles the world over beat a path to consult. He of course is much too modest for any of this hyperbole but there’s nothing stopping me singing the praises of someone I’ve known, loved and respected for most of my life. So, Ri tells Michael of the results of the first consultation on Weds where Gamma Knife was first mooted.

The following morning I get a call from Michael: “Ri told me about this Jack the Knife, bloke. I’ve got a Swedish gentleman here that would like to have a word with you.” On the line comes this wonderful older gentleman, who announces himself as one Jan Hannerz. Look him up, he hails from Department of Neurology, Karolinska Hospital, Stockholm, Sweden, the very same place that Lars Leksell supergeke made his home. Jan was a close friend and colleague of the great man and is widely published in his own right. He is an avid collector of certain literary works for which he turns to Michael to help supplement his collections. That morning, after his conversation with Ri the night before, Michael arrives at the shop and finds Jan H. waiting on the doorstep for him to open up. Now those that know me well know I am never going to read into this what many of you just might and, anyway, what difference did it make but, you can’t shy away from the fact that sometimes coincidences can be funny old things…

Like I said, I do feel a bit of a fraud and I apologise to all of you for obliging to say all those nice things about me when I’m not even going to die anymore and, better yet, I will not be undergoing the greatest horror of my life and have someone delving around in my very private grey places. Don’t worry, I won’t hold them against any of you. You can retract immediately, I’ll pretend like you never said a word as long as you do the same and we can all go back to being absolutely terrible about staying in touch with each other – until one of us needs to and then, I promise, I’ll be there.

Mandy, we’ll have that seven hour lunch, Barry I’ll be there at Goodwood, James I DO want my garden walls finishing after all, kids you’re stuck with me for a while yet, Peter I’ll see you when you’re over from NZ and we’ll take that tour, Deg do you still have that mid-life crisis on which to ride up and say hello or is it my turn to visit the old country in my own? Michael/Gwenola, we’ll be booking into Le Petit Café in Cayeux-sur-Mer any time soon. Ri, see, we’re going travelling, I promised…

Folks, everyone, there’s just so many I owe thanks to and I’ll try to show that by taking a little less time at work and a little more spending time with all the people whose lives and loves are most precious to me than ought else. Where’s our next night out, Steve? I know, it’s my turn to pay, and with this thing on my brain you’re never going to let me believe anything else are you? I’m going to have to take out shares in one little beauty, make a note: Cicchetti, 215 Piccadilly – to die for and to only worry about not coming back to, another time.

I have friends coming, dear, dear people, family, I have to make apologies and go prepare. I’m likely to get rather drunk but first I have to make pasta and we have to eat and talk and walk and stuff. I hope my rantings never offend anyone. Never let it be said I never had anything to say for myself.

Would you believe I have tweeted? It’s true, I confess, I supplicate, I beg forgiveness, I despise myself, I prostrate at the grail of humiliation but, hey, it’s an interesting way to get a little something off your chest now and again and, it has to be said, what harm can it do. Not much point though if the people I care about don’t listen. Just a thought.

Love to you all and most importantly, good health and happiness aplenty.

The Day Itself:
Apparently, I’m fixed, I feel perfect and two Paracetamol was all it took to get rid of the headache. There, done, sorted, what a lot of fuss over nothing.
Sorry to freak you all out. Everyone back to normal, carry on….

For those of you who enjoy the sordid detail let me prattle on. Most of this I did whilst waiting for the procedure and then when I had taken a couple of hours to rest my head afterward. Then Ri brought me in the rather fabulous bottle of Shiraz I prevailed on her to obtain and, well, that was the end of the writing. Don’t worry, I only got through half the bottle, gave the rest to one of the staff.

In the morning it really was one of those “auspicious dawn” moments. This last week or so has been the same, every day, for those of us that have been up with the sparrows, beautiful, clear, fresh, blue skies into which the slowly warming rays of milky sunshine crawls, like a small child reticent to leave the covers of a nice cosy bed, blinking and smiling as they yawn and awaken.

Yesterday was one such, perhaps warmer than the others had been or maybe it all just felt a little more heightened to me and what was on my mind. Sitting there in “Tuscany”, behind the gnarled and ancient Olive tree, surveying the comings and goings on our industrious little airport, settled deep in that glorious Sussex landscape, watching the sun glint off the eruption of fresh spring blue gum leaves on the “Great Barrier Reef”, Maisie for company and a hot cup of steaming black coffee in hand…you’d kinda figure that just about everything must be absolutely right with the world. It felt just so right, so perfect. One of those, “’tis a good day to do battle” days. Not, “tis a good day to die” but if there had been any threat of that then it would indeed have been that too.

In my head, Luke Skywalker and his buddies are gathering their belongings, refuelling their ships, checking their instruments, saying their goodbyes and generally preparing for that very battle (the one where they surround the death star and take it out) in a mood that mixes as much excitement as it does fear and, in the movie of course, romance. Yet there is romance in this reality too. The theme tune is playing on an endless loop of probably no more than twenty notes, around and around but it really helps keep me fired up.

The problem with all of this is that it buys into the concept that all you have to do to get free of cancer is to fight, to do battle, it’s always talked of in those terms and it is so wrong and so misleading and, dare I say, so potentially demeaning of those whom we describe as “losing their battle with cancer”, as if they didn’t try hard enough. There is no one more eloquent on this (or most other subjects) than our dear and departed Christopher Hitchens who wrote so brilliantly of his own tribulations along this road. This is not a fair fight. When the thing that is attacking you doesn’t care whether it lives or dies, seemingly only that you die…and has tricks up its sleeves what you can only guess at well, yes, any passing similarity to a particular group of the many deluded individuals on this planet does bear fairly stark and repulsive comparison. As we’ve always been brought up to understand, we on this side of the Atlantic, they only have to get lucky once, we have to be lucky all the time. It’s the same thing. Cancer is nature’s terrorism.

So when I think in these terms it’s only in order to give it some level of scale to which an individual human being can aspire to understand. The only real battle taking place is between science and nature and that’s a singularly impressive battle in which, it must be said, science has been making incredible progress. Our scientists are our new warriors. Their weapons are computers and technology and an ever greater understanding of the biology of which we are all comprised. It will be a younger generation than mine that will really be able to get their head around where we are heading with this. That’s how it works, folks. Each generation raises that level of knowledge to be the starting point for the next, a launch pad to propel on to greater things, each one built on the previous achievements, just exponentially faster, further, deeper each time.

As I’ve said before, let’s celebrate the nerds, revere them, encourage them, set them on pedestals, tear down the old warrior statues and erect new ones. In *this* brave new world, these are the men and women that will steer mankind to the great things which lay before it and in which each of us plays such an individually insignificant role that it will forever stimulate the eternal “why are we here” question that I’m afraid betrays the arrogance of human self. All I hope for is that we reach the point of at least a basic human understanding across our small fragment of spinning rock before too much more suffering (beyond the last few thousand years) can be perpetrated in the names of the charlatans, the fairy worshipping establishment, the voodoo maniacs that we politely call “the devout”, “the faithful”, “churchgoers” and a million other sops to the delusional pedlars of poisonous myth and fear that we not only tolerate, for reasons that elude me, but go out of our way to facilitate with the politically correct cry of “religious freedom”. Where’s the religious or any other kind of freedom of a small boy in a catholic children’s home? Where’s the safety and security he deserves, subjugated by fear and depravity, that’s where. What science is there for Africans told that Condoms are the devils work and AIDS is an imaginary affliction, that Anti-retrovirals are an American plot to sterilise their children, and all promulgated in the name of some fear-mongering, fairy-preaching arse-wipes? Where’s the religious freedom for that of a wretched child born into the slums of Palestine and abused with the twin assault of Jewish/Islamic rhetoric with which he and his grandchildren will be forever imbued and for which the rest of us will continue to pay, over and over again?

When I was an idealistic teenager, all of this was going to be gone by now. Hey, it was going to be gone that year or the next, certainly by the one after that. Change wasn’t just coming, change was a monster rolling stone rushing downhill making all things old and hateful scatter in its path or be flattened in its wake…we even had our own music to accompany this revolutionary army of upheaval. That fire, that impulsivity, that derision, that aspiration, that motivation it really can light a new path but, and it was ever thus I’m sure, wise, sage and rather less exciting influences will always come to bear. Nature it seems likes equilibrium and works very hard to smooth over rough seas, calming and massaging into something more manageable, slower, less fractious, plodding even. I still rail against such limitations on thought, change, advancement but I do so in a far more sanguine and very slightly more patient way. If I can’t have them all gone in an instant, evaporated as effectively as my tumour, then at least I can witness the inexorable march of science and advancement pushing these voodoo ways further and further into the dark corners where they belong and who knows, hopefully, starved of light and air they just might wither and die.

There’s something quite perturbing about the number of Islamic brethren beating a path to the door of The Cromwell Hospital and the other illustrious private ones I’ve been frequenting. Don’t get me wrong, they have the money, they think nothing of hoping on a plane to go and get the best and why shouldn’t they. Their money helps facilitate these places for the rest of us, I have no philosophical issues here….except….you didn’t quite trust your Allah did you? Figured he might need a helping hand? Squatting there in the sand and playing with your worry beads while bobbing forward and back and mumbling just wasn’t going to cut it now was it? Nope, just in case, lets grab a plane, grease someone’s sweaty palm with a pile of filthy Luca and let’s see if that helps. Well, hell yes it does and I’m glad you figured that one out. So how come your three wives are sitting here silently and diligently covered from head to toe, just waiting for you to come out of the consultation so they can silently and, as if on command, stand and follow obediently three paces behind in some pre-ordained hierarchical sequence. Give me a fscking break!

Sorry, this was all supposed to be about me, my cancer and I. Somehow though as soon as I get onto that subject and combine it with the science that “fixed me”, you’ll appreciate how inseparable these things become for me. I don’t want people going around thanking Santa for their recovery, I want them thanking the incredible scientists and doctors and technicians and geeks and nerds that made it happen. Thank the incredible essence which is nature, energy, life, the universe, thank anything you darn well please, there are so many people and things that exist that you can thank, there’s absolutely no point in inventing any that don’t and then thanking them – how disrespectful can you get? Heaven’s above, I love all things Norse Mythology-wise, Thor was my hero and given my current penchant for all things Nordic, and particularly Swedish, I could very easily be thinking nice thoughts of Thor right now but guys, I never fell into the trap of thinking it was anything other than a myth. I do live in reality and I know that despite the wonderful and romantic notion that is Thor, neither he nor his father Odin or any of the greatly extended family had the slightest hand in my miraculous treatment – except that it’s highly likely that Lars Leksell also worshipped Thor – as a young boy’s hero – just as I did and who knows if that inspired him to greatness. There’s nothing wrong with heroes, we just have to know what heroes are and what they’re not and maintain a perspective. I don’t care if a bunch of people want to start a Thor appreciation society, just so long as they don’t get given government funding to start indoctrinating young children into the ways of Asgard, describing to them how to navigate the rainbow bridge and to watch out for the evil Loki, who was never really evil in the first place, just a bit pissed at his old man for telling him off and chucking him out of the house. So long as they don’t get given honorary seats in parliament and asked to pass laws that the rest of us have to obey…..am I making my point here, people?

So, if it helps, fine, dress up your own “battle with cancer” or any other demon you might be facing in the finery of ancient Norse mythological garb and enact the scenes of Asgardian splendiferousness (for me it was Starwars) if that’s what floats your boat and helps you deal with the sheer bloody terror that is this and many similarly powerful afflictions that we mortals are prone to. Who the hell would judge you for that. Christ, go grab a little religion if it really helps, just keep it to yourself, OK? Don’t foist it on small children mentally or sexually, don’t explode it in the faces of unsuspecting passers-by, don’t dress it up in fancy garb and dump it on innocent populations under the pornographic description of “shock and awe”. Whatever you have to do to get through, that’s fine but don’t forget to say thank you to the ones who will really get you through this, the ones who fought against all the same obstacles that get thrown at all of us and who made it through to become fine nurses, doctors, surgeons, scientists, mathematicians and the rest. These people are heroes, they are human beings, they are the pinnacle of life as we know it.

Sasha, my lovely gay Russian (but born and brought up in Ukraine) nurse/technician/physicist guide through my Gamma Knife process was just perfect. A pianist, a sensitive guy, he knew his stuff and he knew how people feel in this strange and frightening environment. He was calm, efficient, kind, patient and had a sense of humour. Renee was from Zimbabwe, soft and gentle, a woman born to be a nurse. David Peterson, my consultant, now he was something else. Six foot six or something, true Viking heritage went with the name as did a wicked sense of humour so engaging that you hardly had time to think what was actually going on and, of course, that’s what he was so wonderfully practiced at. Yes, they forgot my valium because he never really figured I’d need it and so ten minutes, less, before the process began I got given my tablet. I’d kinda expected that’s what the Cannula was for, that would have taken effect in seconds but no, ten minutes for a pill ain’t doing nothing and so when the Lidocaine went in, well you knew it was going in. Not sharp like a needle, because it’s anaesthetising as it travels it feels more like a quarter inch thick rod being inserted into your skull. It’s not exactly painful, there’s no sharp prick or stinging pain, it’s just blunt, solid, a bit like pushing an apple corer into a potato – or indeed an apple. Anyway, it was done in no time, one, two, three, four. All done. At that point I kinda knew the worst was over but I also knew that I was about to have four bolts screwed into my skull. I was pretty convinced already that I wasn’t going to feel it but that’s like the dentist isn’t it, (only worse) you know you’re not going to feel any pain (well I knew that once I discovered private dentistry forty years ago) but that doesn’t stop you feeling all the vibrations and the grinding and all the other horrible things that go on even when your nerves have been sent to detention for making too much noise….

…and then it was happening, screwdrivers were out, a screw was dropped onto my lap at one point, turns were being turned, lots of turns, things tightened as the separate floating plates that make up one’s skull were brought together into a proximity they were not truly designed to experience and at this point it was clear they were in a mood to complain but against a force that they were powerless to resist, they fairly quickly adopted an air of resignation and I was pleasantly surprised at how little fuss they made and how quickly they relented. Now it was all about the weight, the weight of this heavy Perspex helmet that sat onto the lightweight frame that’s made of plastic and aluminium (nonferrous so it doesn’t become a missile when you’re put through an MRI scanner!). Then that comes off and suddenly I feel like a ten ton weight has been lifted and this thing is now a part of me, like some ugly hat-stand waiting for me to try on the latest thing for the dapper man about town….I started to think of other uses for it, too. Could I hang myself from a door post to give my back the traction it might need if I slipped a disk? I’ve never had a slipped disk so quickly decided that wasn’t something I needed and as it wasn’t going to help me to hang upside down like a bat, I ran out of useful ideas – let me know if you think of any.

Next I get a different shaped hat, this one with a big point in the top, a sort of cross between Kaiser Wilhelm’s famous infantry helmet and Dan Dare’s space helmet….this was to make sure that my head and frame would dock into the mother ship correctly. Then I got the classic upturned goldfish bowl style through which many holes have been drilled and into which Sasha plunged a stick – probably has a technical term but to you and I it was a stick – as he rattles off a series of letters and numbers indicating the hole in question together with a distance in millimetres which Renee plotted almost as fast as he could recite them. And then that one was off too and I was left with my lightweight frame and Ri’s camera…..in my face…someone had to do it, for posterity I guess. A caution from Renee not to broadcast these on the Internet – something about people and forming part of my medical records and I have no idea what the problem was, anyway, I tweeted the ones I felt I could having ensured that no one was identifiable.

It’s time to get ready for the MRI and I’m wheeled outside to await transfer through and there to greet me are Linda and Alina from my A-team who’ve heard I was downstairs and have come down to say hi and wish me good things – where else would you get that, in a hospital, I ask you, this is why I wanted to be treated here….what lovely people.

…and it’s off to the MRI, Aretha Franklin my choice of music – one I instantly regretted as my body tried to move quite involuntarily (and voluntarily) to the music whilst my head was locked down (via the frame) . I needn’t have worried, the overarching scream of an MRI magnet is never going to be outdone by loud music, never in a million years. It’s not an entirely unpleasant sound, something rather comforting about it but not in a “I’ll just doze off for a bit” way as you get in a CT or a PET scanner, more like going clubbing and trying to sit quietly in a corner to hold a conversation that you know is going to be very hard work.

…and then it’s coffee time…well. Sasha at this point, what can I tell you. No, you can’t make instant coffee any more palatable just by making it four times stronger than normal. It just tastes like really strong black instant coffee – and that’s without the straw through which I had to drink it. So Ri heads off and gets some decent stuff. I swear he was mortally offended when he returned and spotted the Costa cup….with the straw in it, like it could only have been mine….

…and then the results are in (it IS just the one tumour, friendless, lonely) and the planning is done, thirty-eight minutes will be the duration of the treatment, and off I go to the Gamma Knife room. I’m laid down and bolted in. They all run out with their fingers in their ears (Ri included) (but not the fingers in ears bit, I made that up) and I’m left on my own so that only I get the Blue Cobalt radioactive waves through any part of my anatomy and, boy, am I about to get one huge dose of it. The music rolls, as does the table I’m attached to as the doors behind my head start to open….suddenly the music changes “whoops, wrong one” he calls through the intercom…. Hoping he’s slightly more adept with computer programmes and technology generally that he is with a basic CD player, I tell myself to relax as Holst’s Planets starts to play…and I pass inside the machine and my head docks with the mother ship.

Is it working? Has it started? I didn’t think to ask even though I could have done as I’m all miked up, I just didn’t think to. It must have been twenty minutes later I’m thinking, “I really hope it has started or I’ve still got thirty-eight minutes to go…” and then it was all done. I’d felt nothing. I know you might ask, why would I, I mean you don’t feel anything when you have a chest X-ray or one of your broken arm and hey, that’s just radiation, right? Those people at Chernobl didn’t feel anything at the time, did they, that doesn’t mean it didn’t kill them and deform their children. Radiation is spooky stuff, powerful and spooky.

The whole theory of Gamma Knife is that they deliver up to two hundred beams of low dose radiation so that it doesn’t scythe through healthy brain cells like standard radiation does, killing as it goes. It’s only at the point of conflagrance that the doses combine and deliver a dose that can warp dna into something that prevents the cells from division and reproduction. Its measured in “gray” (Gy) after Louis Harold Gray (1905–1965). One gray is the absorption of one joule of energy, in the form of ionizing radiation, per kilogram of matter. For X-rays and gamma rays, these are the same units as the sievert (Sv). For alpha particles one gray is twenty sievert. The Sievert, which has the same dimensions as the gray is a measure of the potential for damage to human tissue. A whole-body exposure to 5 or more gray of high-energy radiation at one time usually leads to death within 14 days. Since gray are such large amounts of radiation, medical use of radiation is typically measured in milligray (mGy). My typical routine CT scan of the abdomen and the pelvis is 30 mGy. For this procedure my dose, at the point of conflagration, measured twenty gray, 20,000 mGy. Four times the amount required to kill me in 14 days. Give me a call in a couple of weeks just in case, would you?

So I’m taken back to the frame fitting room where a great many turns of a screwdriver ensue, as I’m wondering whether or not the Lidocaine is still working. It was. I’m taken back to my room in a wheelchair deftly negotiating lifts, corridors and the like and then I note that the headache is well under way. A couple of Paracetamol appear, really? Paracetamol? Something more special, more potent surely? Half an hour later and I have no headache. It’s never returned and I’ve had no further medication – other than the dark red, beautifully crafted anti-carcinogenic kind with rich berry aroma…

I lay down for a couple of hours, I got up and published my Twitter stuff, answered some emails, ate a hearty supper and polished off a couple of glasses of that lovely Shiraz that Ri brought me. An overnight stay, an equally hearty breakfast and we’re heading back on the train home feeling very, very odd. Odd. Odd because I felt nothing. I was a little tired, it’s been a stressful couple of weeks, I’ve not been sleeping much because of the steroids. I’ve been rushing around putting lots of things in place. I’m tired but I feel relaxed, I feel fine, I feel like I’ve made a ridiculous fuss over nothing. Once upon a time I had a tumour in my brain that was going to kill me and, if it didn’t, the process of relieving me of it just might or worse, it might not kill me but leave me something less than I once was. Now, I still have a tumour, a lung cancer tumour in my brain but now I know it’s not getting any bigger, it’s probably already started getting smaller as it struggles to divide and reproduce and finds it’s lost the ability to. Does it wonder why? Does it know that it’s not growing anymore? I can’t see it getting smaller, I won’t until I have another scan in a couple of months or so but I know that it is because that’s what the Gamma Knife is for, that’s what it does, and it does it very well, very effectively and with a long history of success.

So that’s it then. Once upon a time I had a terrible fear of something none of us wants to imagine. Now, I’m fixed. Well, kind of, anyway. For the moment at least. I have people around me who want me to be aware that this is not quite the case. I have cancer but at the moment it isn’t affecting me and, if all goes according to plan, I may one day be free of it and, then again, I might not. That’s not as frightening a prospect as it once might have been. There are lots of people out there who are living with cancer, some of them are receiving this email. We share something in common, we have genes that make us particularly susceptible. Some of us smoked, some didn’t. Some of us ate healthily, some didn’t. You don’t get cancer because you’re bad, you get it because you’re human and because you’re unlucky and sometimes because you tilted the odds too far in its favour. It’s the one we all fear but how irrational is that? There are so many things that can kill us and that’s not counting the other human beings we share this journey with. From bugs to motor vehicles, from dangerous sports to working too hard, from eating the wrong things to being in the wrong place at the wrong time. Many of these come without warning, many of them accompanied by extreme malaise of body, soul and mind. We are human, we are mortal and we always will be, that’s as it should be. What do we learn?

Well, we have to stop worrying about what might happen, there will be plenty that actually does happen that we can do all the worrying we need to. We have to stop yearning over quantity and start making use of the time that we actually have. I have no desire to prolong my life for the sake of it, if I can’t think of useful ways to fill every waking minute then I’ve no use for it. I may not be inventing Gamma Knife machines, I may not be discovering quantum physics or something that hasn’t already been discovered. I would like to think that I can add a little something to the lives of some of the people around me, little things that raise their own personal starting threshold, young people particularly, someone to impart something of what I’ve learned. Pass it on. If I am still doing that then there is a reason for me to be here. When I start just robbing the planet of excess oxygen, well, there’s really not much point beyond that is there? Sure it’s nice to fill the time we’re here in a way that is pleasurable and if it’s not harming others then sod it, enjoy but when it comes to that “why am I here” question, what are you going to say?

Did you do everything you could to leave a little something behind? No? I think you may be short-selling yourself. And no, I don’t mean did you pay your taxes. We carry people in our hearts, even when we’re not aware of it. We learn little things from our friends and acquaintances that we’re not always conscious of. We are one organism, no matter how disparate we seem, one universe, one set of atoms with never another one to be created, just the same ones rearranged into different structures, different living and inanimate things. Ancient peoples knew something of this, they revered the earth, rocks, trees, animals, air, water and every other elemental thing with equal respect – how did they know all this without our science. How did my brain know to drag my sorry arse off to a scan where no scan should have been necessary. There’s a lot we don’t understand and I’m not about to pretend I have any answers. One day I sat in my dear friend’s little garden. I was trying to explain something, something quintessential. I pointed to the profusion of tiny yellow flowers that were romping around everywhere as an example of just how similar we all are. My friend pointed out that if I looked closely, I’d find that each and every one was just a little bit different, each one an individual in its own right. Yes, I agreed, that’s an important observation but here’s the other way of looking at it. They share so much more in common with each other than the tiny little bit by which they are different.

To all the different people in my wonderful circle of friends and acquaintances, I salute the wonderful differences that I love about you. To the common humanity from which you are all riven and with which you are imbued, I salute your glorious similarity. To all the people I don’t know, in the four corners of this planet, I’ll salute you too – just abandon the fairy stories and come over from the dark side….

 

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No Pain, No Gain?

pain

The most amazing thing to me about the operation to remove a substantial chunk of my right lung, the upper of three lobes to be precise and, thinking about the method of entry to the chest cavity, what has to be cut through before you even get to the lung, was the relative lack of pain – from that day to this.  As I write I fear that I may live to regret so bold a statement when the nerve endings start to repair themselves but just for now it feels like an almost pain free experience.

The same cannot be said for the two chest drains that were of course an essential part of the process.  These remove both air and interstitial fluid that builds up in the thoracic cavity following an operation of this sort.  The fluid is normally carried away by the lymphatic system but given the damage done to it during the operation and the amount of fluids being produced, the lymph needs help for a few days.  Air, of course, whilst it may sound perverse at first but becomes obvious when you think about it, is not something normally found in the thoracic cavity, it’s supposed to be inside the lungs, inside said cavity.  Air inside lung – good.  Air outside lung – bad, lung collapses and you risk death from asphyxiation – something to be avoided if at all possible. It is they that; have been the source not only of the minute to minute aching (that is for the most part entirely bearable and when not is easily made so with a dash of morphine or a tramadol capsule) that; have forced me to lie flat on my back to sleep (something I’ve never mastered in my life and thus have had very little sleep until last night) and that during removal (of the first one) gave me the most excruciating pain imaginable.

I’m sure it must be possible to have worse pain, perhaps I just lack the imagination to understand how any pain could actually get any worse than that pain was, except by continuing for longer.  Is it more painful to have your leg hacked off at the knee with a machete?  How could I ever know without experiencing it and I’m pretty sure that if I were to experience it, the knowledge of what was being done to me, the nature of it as a malign attack rather than a palliative process and the understanding of how long this was going to go on for would ensure that I placed it higher in my list of lifetime’s painful experiences but, the question has to be asked, would the actual amount of pain second by second be any greater?  Would it not just be pain, pure and simple, governed in volume by the number of nerve-endings responding to the stimulus?  I don’t know the answer, maybe there’s a scientist or two who do but I’d say it’s always going to be a somewhat subjective issue.

The fact is that removal of the first chest drain, which took place in the hospital, was excruciatingly painful.  I found the reaction of several of the nursing staff, to my tale of the event, curious indeed.  I got the impression that I was being regarded as some kind of wimp, making a huge fuss over nothing.  Well, let’s be entirely fair here, suppose I was a huge wimp and was making a big fuss over something that most people find so pleasurable that it’s a toss-up between, ooh I don’t know, popping down the pub for a drink with your friends or, nipping next door to your mate, Kevin, and asking him to whip a garden hose out of your chest without anaesthetic.  Yes, let’s suppose that’s the measure of the seriousness of the procedure to the average bloke.  Well, here’s a thing now, pain, as I mentioned before and as we all know by established research, is a subjective issue.  The fact that one person can stand an amputation of a limb whilst biting on a stick of wood, as all good cowboys do, whilst another would actually suffer a heart attack as a result of the pain and die, is what makes it subjective and, being subjective, it is all about the subject, in this case the patient, and not about the practitioner, in this case the medical staff.

So the question first arising here is what should be the relationship between practitioner and subject, between medical staff and patient.  Primum non nocere is a Latin phrase that means “First, do no harm”, it is a fundamental precept of medical ethics known to every medical practitioner everywhere in the world.  That is all that needs to be established about this relationship for my purposes but let’s broaden it a little and say that, of course, one of the primary functions of “medical care” is one of “care”.

That’s a word that has many sub-definitions, meanings and connotations but I think we all understand what it means when used in everyday parlance and particularly in a medical context.  Care is diligence, doing one’s job carefully, omitting nothing, overlooking nothing, considering everything.  Care is also concern and compassion, actively wanting to “do no harm” indeed, wanting very much to take one out of harm.  In this subjective instance, to relieve pain wherever possible, not to cause any additional pain unless it is entirely unavoidable, to consider the individual patient and their perception of pain, to work to alleviate the fear of pain which is, of course, a very large part of the actual experience of pain.  That fear causes physical tension and tension exacerbates pain so if one can bring someone to a relative relaxation there will be less experience of pain, even though the pain stimulus may be exactly the same.  We all know these things, I’m not telling anyone anything they didn’t know before but that, perhaps, is one of my central concerns.

It is these things that we all know so well that often get overlooked, forgotten about, disregarded when the pressures of the day to day, the very familiarity of it, risks bringing with it an unconscious disdain.  Cultural issues also play a part as do generational, age-related ones.  Pain is regarded differently in different cultures and it’s probably true, the more westernised a country becomes the less acceptable certain levels of pain become.  In this country, of course, we also have to measure up to that level of stoicism inferred by the phrase persistently attributed to the British caricature with their “stiff upper lip”.  It’s the same stuff and nonsense that causes even modern day liberal parents to train their children in the “big boys don’t cry” theory that blights most of their lives and is considered in professional circles to be at the root of much violence and spousal abuse…but that’s another subject for another day.  For now the point is that this so called stoicism has worked well for a country that, in times of war, rationing, poverty and deprivation needed to find ways of maintaining morale.  Well, folks, those days are long since over and I hope we no longer judge people as to their “Britishness” on whether or not they can cope with apparently intolerable pain, suffering or deprivation without so much as a whimper or a sniffle and I’d like to think we were, these days, encouraging boys to shed a tear rather than bottle up their emotions like a pressure cooker until they kill someone.

So on the day that I’m told I can have one of my drains removed I am both elated and nervous.  The elation does not need to be explained to anyone who has ever had one or, in my case, two of these buddies tethered to your body.  For the rest consider the, “wherever you go, I go” principle of the attachment with all the discomfort, complication and restriction that places on every movement from planning a trip to the lavatory ten minutes ahead of time to wanting to roll over in bed without ripping a half inch hole in your chest cavity which will inevitably strangle you in the same instant as the rushing inflow of air crushes your lungs.  It’s rather unlikely that such a thing could ever happen but not in one’s imagination it’s not, there it is an ever-present threat.  The opposing nervousness comes, of course, from those self same roots, how on earth can it not be painful to remove a half inch hose from your chest wall after your body has been busily doing all it could to accept it as part of  you and welding tissue to the tube by way of reconstruction.  Thus it is indeed the case that I approached the moment with a not inconsiderable fear, about as considerable it must be said as the bronchoscopy I had endured some three weeks earlier or the subsequent CT-guided biopsy, involving a very long needle through that very same chest wall.  In the first case I was given mild sedation but had to remain awake because my cooperation was required.  In the latter, no sedation for similar reasons but as much local anaesthetic as was called for that turned the process into something that, in my mind never really happened.  A very clever surgeon assured me at each deeper penetration that all he was doing was giving me more anaesthetic and the half of my brain that was shouting “don’t listen to him, you know exactly what he’s doing, he’s assaulting you with a very large sharp steel instrument” was subdued by the other half of the brain that readily accepted the much more pleasurable and acceptable premise that all we were doing was getting ready for a procedure that was not going to happen until I was properly anaesthetised.  Now that surgeon, one Simon Padley to give him his due credit, knew exactly what games he was playing and the benefit to both of us in playing them.  Here’s the thing, he would no more have thought to stick a needle through my chest wall without a local anaesthetic than he would to remove a hose pipe from the very same place without one.

As I later described it, these two prior procedures accurately reflect the usual situation where the fear of the procedure was some ten times worse than the actuality.  In the case of this first chest drain removal the actuality was ten times worse than the previous fear of it and that is how I knew something was not right.  From my own research and deduction, I now believe I have a pretty full picture as to why this was and what caused the very real and excruciating pain that I experienced and which continues in much abated form, just by way of reminder, to this day, five days later.

I have scoured the web and read many professional documents on the subject of chest drains and, in particular, on their removal and what considerations are given to the questions of pain and appropriate anaesthesia.  I have arrived at several conclusions:

  1. There appears to be no single authoritative work on the issue to which practitioners can turn with confidence.
  2. There are conflicting opinions as to the level of potential pain and the steps to be taken to ameliorate it.
  3. There are, incredibly, medical professionals out there who do not believe that anaesthesia is required even for INSERTION of a chest drain – that should make interesting reading for the justice profession when considering what action to take against youths on sink estates shoving penknife blades into each other’s chests on a Saturday night.
  4. Rather than the “national” health service conducting research and publishing established guidelines, each individual hospital is apparently charged with investing our hard-earned taxes many thousands of times over in conducting their own research and formulating their own individual policy to apply in their very own hospital assuming of course that they think to even do so – good god almighty what lunatics are running this enormous NHS asylum?

What comes across loud and clear, as if one needed such research or evidence, is that there is a sufficient body of it out there from around the world – the English speaking westernised world so far as my research was limited – that one cannot deny that there is a very strong likelihood that the patient will experience significant pain when a chest drain is removed and therefore that local anaesthetic should always be applied in addition to intravenous or oral sedatives such as morphine.  Of course, there must be instances where no anaesthetic was used and no pain was experienced by the patient, else there would be no variance of opinion but why on earth would that lead you away from taking the precaution of administering a little lignocaine just to be sure?  Primum non nocere.

Growing up in the fifties and sixties I learned to equate the word “dentistry” with the synonym “extreme agony”.  How did I manage that?  Well I’m sure I’m not the only one but the inevitable result was that as soon as I was responsible for my own decision making, quite early on in my case, one decision was that henceforth I would be visiting dentists over my “dead body” so to speak.  Put more simply, I simply wouldn’t be visiting them ever again.  Thus it was that by my mid-twenties and a decade or more of dental neglect brought about the very pain I had been so strenuously avoiding.  Mercifully a friend recommended their “private” dentist and it was from him I learned that, his words not mine, “Robin, there is no reason for you to ever experience pain from dentistry and so long as you are my patient I give you my guarantee that will remain the case”.  Thirty odd years and two or three dentists later (don’t they retire early, these guys?) not to mention fillings, caps, bridges, root canals and nerve extractions, I have never to this day felt any pain in the dentist’s chair nor needed to take more than one dose of painkillers after the event, when the anaesthetic wore off.  So why the difference?  Simple, it’s a cultural thing but its also a capitalist thing.  These guys are in business, they “get” customer service, they want you coming back to them to help fill that pension fund that enables them to retire early and in relative luxury.  They best do that by making sure you have not the slightest fear of visiting them – and EVERY fear of visiting someone else.  Hey presto, professionally administered, pre-emptive pain relief materialises as if by magic and absolutely no procedure commences until the patient confirms that the anaesthetic has done its job.  There’s a lot to be learned here but, unfortunately, because of the irrational structure of our “beloved” NHS we have to try to achieve this in the absence of a profit motive, which, after all, is just a motivation to give excellent customer service.  If the staff are excluded from that motivation then I’m afraid we lose an essential driving component but, what we lack in the construction of the service we can at least attempt to bolster by way of policy and training.

Gloria and Glena are both very experienced and capable nurses, of that I have no doubt.  I took to Gloria immediately, I felt very safe in her care and from various things we had chatted about I felt we could relate well.  I had never seen Glena before in my life and so when she walked into my room and was briefly introduced to me, I assumed she had been brought in from a general ward somewhere because of her specialist experience in chest drain removal.  She was to officiate with Gloria assisting.  Fair enough, it seemed like a good combination but on reflection it occurs to me that there was little or no discussion over what was about to happen – apart from some guidance on breathing instructions that I would be given again at the time.  All of this conversation, such as there was, took place behind my back, quite literally.  I was laying on my left side looking at my wife whose hand I was holding.  Gloria and Glena were behind me.

Glena’s touch was very gentle, yet very sure and I was comforted immediately.  Given she was a total stranger to me (and yes I do believe that is a major issue in the way we deliver health care in this country, one that can be solved simply and inexpensively with a little thought and conversation) the touch of her hands was my only real way of assessing how safe, comfortable, assured I would feel and it helped me to relax initially.  I hadn’t read up on what was involved, who does on such a relatively minor procedure?  No-one had explained it to me but I had automatically assumed that a local anaesthetic such as lignocaine would be used, it just seemed so obvious.  I don’t recall at exactly what point I asked for this but I believe it was Gloria that advised me that “nurses aren’t allowed to administer anaesthetic”.  I have no idea how accurate a statement this is, whether its a misinterpretation or misconstruction of an actual policy ruling but the question formed instantly in my head was the one I repeated to all those involved later: “How is it possible that it can be ok to allow a nurse to remove a hose pipe from my chest cavity with all the attendant risk that such a procedure implies and yet not allow that same nurse the responsibility to administer appropriate analgesia?”  It beggared my belief then, in agony on my side, as it does now in my very comfortable and painfree home, bathed in warm spring sunshine.  It beggars that belief to the point that I don’t believe it and because I don’t believe that Gloria would lie to me then I must assume that it is some kind of misunderstanding.

I put this point to several of the nursing staff later, during a shift change ward round and I think they misunderstood what I was saying.  I was inferring that I have no problem with the nurses doing the drain removal and thus, given that level of trust, no problem allowing them to administer local anaesthetic.  It appeared that some people thought I was implying that as nurses were not allowed to administer local anaesthetic, they should not be allowed to remove chest drains.  The two interpretations could not be more starkly contrasted and, of course, such a misunderstanding would have reflected very differently on me indeed.

Something else I recall Gloria asking me, when I was trying to make it understood just how much pain and distress I was in at that time, is what gave me clues to my later findings.  She asked me whether it felt like burning.  Well that was it, precisely.  Until she verbalised it I hadn’t considered the nature of the pain, my mind was so full of the pain it left little room for other tasks unless prompted.  As I described it to her then it was like someone had taken a burning hot flat iron and held it to my side, the way one’s skin sticks to a dull black hot metal object like a surprisingly hot chimney flue.  The only thing wrong with that analogy, I clearly remember thinking at the time, is that a flat iron has a very particular shape and the shape of this pain in my mind was square.  It might seem odd but yes it really did have a ‘shape’.  A couple of days later, still trying to mentally bridge the understanding gap of those who made me feel I was making a mountain out of a molehill and my own vivid knowledge of what I experienced, it was this shape memory that prompted me to ask my wife about the substance that had been used to disinfect the surrounding area.  I recall Glena and Gloria discussing preparing a sterile area around the drain, I remember Gloria warning me this would be cold, and it was.  There was almost no interval between the application of this preparation and the beginning of the task of removing the sutures retaining the drain tube and the almost immediate pain I started to feel.  The pain grew and peaked every time Glena sought out a thread or made some other touch to my skin, it was indeed as if this square of my body was on fire and the slightest additional stimulus was a gallon of fuel poured on the flames.  “Was it that yellow stuff?”, I asked my wife, who confirmed it was exactly that, “Betadine” she advised knowledgably, that being the brand name, in the U.S. at least, for a range of povidone-iodine (PVPI) topical antiseptics.  I was already wondering about a reaction to iodine and this confirmation sent me off in that direction.

Sure enough, I discover reams of information about adverse reactions to iodine based preparations, including Betadine, everything from life-threatening allergic reactions to the much more common reaction that I experienced.  My experience was of course exacerbated because of the substantial use of morphine based sedatives since the operation, those sedatives causing an over production of histamine which, as I crudely understand it, creates a set of circumstances which combine into a severe skin reaction.  So severe, in fact, that the following day the skin around my dressing was red raw and had actually blistered.  My wife has been treating it with TCP and Savlon these last few days and it’s starting to clear up, the blistering just bled out last night.  I have no idea what the policy is for testing or checking whether a particular patient is going to react to the use of a given preparation such as Betadine.  With what I do now know I suppose I can assume that where a policy does exist it will be different in each and every hospital across the country which, as I’ve intimated before, appears lunatic to me.  What I know though is that a pause of a few minutes, literally 2-3 minutes, between application of an iodine based preparation and the subsequent procedure would have allowed time to detect the reaction and countered the effect, delaying the procedure until the situation was resolved.  Whilst being a safeguard against my situation, that of course would not protect those who have the more severe allergic reaction so I’m rather surprised that there is no scratch test or similar as a matter of course before application of such substances, given there is no emergency being addressed here.  I guess someone might conclude, perhaps rather presumptively, that if the patient had just gone through major thoracic surgery that the same substance would have been used and that no reaction was noted.  That however is hardly a sound basis from which to presume and does not take into account the other factor referred to in respect of the build up of histamines.

Forewarned is forearmed, as they say, so it will be no surprise to anyone that when it came to removal of the second drain I was fully equipped with all the information I needed by which to direct how things were going to proceed.  I had made an appointment with a thoracic surgeon at my local private hospital for 8am on the Saturday, four days after the first drain was removed.  An hour beforehand I took a 10mg dose of oral morphine as a precautionary general sedation.  I explained the background to this new surgeon and requested that he use an alternative to iodine for the disinfecting process and that he use lignocaine prior to removal.  He clearly noted the residual inflammation and blistering and so to say that he had no hesitation in agreeing my proposals is to understate it, both he and the attending nurse displayed a healthy degree of incredulity that anyone would attempt removal without a local anaesthetic.  I normally have no problem with injections and so the acute sensitivity I felt to this particular lignocaine injection confirmed to me, beyond doubt, just how sensitive this area had become.  That said, the pain was gone in a second and the rest of the procedure was entirely pain free.

I could spend the next six months researching this topic but, frankly, life is too short for me.  For the profession, I really do think this is something that should be looked into seriously and urgently.  The questions I would want to address would be:

  1. Why do we not have national policy guidelines, developed as a result of research conducted by the most eminent professionals available and imposed automatically across the entire NHS?
  2. What training do we need to deliver to medical staff on the methodology of minor surgical procedures? Preparing the patient, allaying fear, making sure where possible that there is a bond of trust before the procedure is started?
  3. How do we best redress cultural obstacles throughout the NHS to effective pain management practice?
  4. What tests or procedures should be adopted to prevent experiences such as mine, within reason and where practicable?

What I went through was hardly life-threatening and what I was being cured of most assuredly was!  It is therefore clear that a relative perspective must be maintained here but to suggest that such minor issues should be ignored given that the patient should “thank their lucky stars” that they are still alive, is not exactly the kind of professional approach I would expect from a civilised and wealthy society such as ours.  Patients heal better and faster when their pain is well managed, it’s a simple fact.  Patients that heal faster are cheaper to treat.  Patients that do not experience pain are easier to manage.  The whole topic is a no-brainer surely, instead of the moronic “no pain, no gain” maxim we need to instil “no pain, we all gain”.