Kicking Against the Pricks

Photo 29-11-11 2 55 52 PM

A Double Whopper with Cheese, and a full-fat Coke.

Just a small gesture. A little token resistance. Probably not a big deal in the grand scheme of things. But today it just felt good to do something bad.

And believe me, I’ve been really good. I’ve towed the line. I’ve done as I’m told. I’ve swallowed the medicine. Even the really bad medicine. I’ve stuck to the schedule. Followed the diet.

It hasn’t been easy

I hate being told what to do. Always have. I’ve absolutely no idea where it comes from. But ask anyone I’ve ever worked for. Tell me to Zig, and I’ll Zag. Guaranteed. Not in an angry, belligerent or confrontational way, but quietly and in my own time. I like to work things out for myself, and discover my own truths, even if it means reinventing the wheel more than once.Taking things on faith has never been my style.

The trouble with orthodoxy and prescribed wisdom is it’s all just a bit too easy. That doesn’t necessarily make it wrong. Just a bit… well, unsatisfying. Convenient but unsubstantial. Like fast food.

So back to the burger. Was it a revelation. An epiphany. A religious experience?

Not really no.

But it was pretty damn good.

Two limp, allegedly beef related patties, glistening alluringly with saturated fats and processed cheese the colour of custard, thrust between the flabby white cheeks of a sweaty sesame seed bum. Gherkins, onion, tomato relish and mayo. The token soggy lettuce leaf which I carefully removed. Plenty of time for lettuce, I’m only interested in the truly bad stuff today.

Yes it was good. In that cloying, guilty, slightly sordid way that junk food is meant to be. But ultimately, this wasn’t about the burger. It was partly about a little act of willful dissent, but mostly I think, about spending twenty minutes in the convivial company of fifty other unreconstructed hedonists. All happily abusing their digestive systems and clogging their arteries in the safe and certain knowledge that bad things always happen to someone else, and that they will all live to enjoy their ketchup-stained spare tires and pudgy grandchildren in guilt free repose.

***

Kicking Against the Pricks? It’s a biblical reference (Acts (9:5 KJV). Google it you Philistines. Not bad for a devout Atheist Huh? Also a seminal 1986 Nick Cave & The Bad Seeds album.




Beware The Blood Count

Dracula

I’m different. I have a different constitution, I have a different brain, I have a different heart. I got tiger blood, man. Dying’s for fools, dying’s for amateurs. Charlie Sheen.

If only I was more like Charlie.

How much do you know about blood?

Unless you happen to be in the medical racket, probably not much. As long as it stays conveniently on the inside, where it belongs, we rather take this amazing stuff for granted. I’ve lost count of how many blood tests – or “bloods” as we say in the trade – I’ve had over the last few months but it must be two or three dozen by now. I have a vexing habit of asking questions, and demanding to know how things work so I’m starting to become something of an expert. At least by layman’s standards.

Let’s start with something easy. Why is blood red?

Well, it turns out blood is complex stuff, made up of a whole bunch of useful parts. The medium in which all these different bits and pieces are carried, the runny stuff, is Plasma. It’s a slightly viscous, pale yellow liquid, which as well as carrying the actual blood cells also transports antibodies for fighting infections, Fibrinogen, which causes the blood to clot when required, proteins, carbohydrates, salts, minerals and all sorts of other good stuff.

The red blood cells, or corpuscles, account for about half of our blood volume. About 35 trillion of the little tinkers at any one time. They are manufactured in our bone marrow, and comprise mostly of Haemoglobin, which is rich in iron, hence the red colour, and protein. Ever noticed how dried blood looks like rust? Haemoglobin has the handy property of attracting oxygen from our lungs, which sticks to the cells and is carried around the body through our arteries, veins and capillaries to be distributed to all our other cells. After dropping of the fresh oxygen, they hoover up unwanted Carbon Dioxide and returns it to the lungs to be breathed out. This is the really mind blowing bit. The whole process, from a blood cell collecting oxygen from our lungs, doing a complete circuit of our bodies, including all our extremities, nooks and crannies, and back to the lungs with the garbage, takes about thirty seconds.

This is all well and good, but what happens when something interferes with this invisible but miraculous process? Well. Funny you should ask. I happen to have some first hand experience in this very field. In the few weeks leading up the The Brittomart Incident, I wasn’t feeling the full-shilling. Tired. Listless. I couldn’t get out of bed in the mornings. Excretion of any kind made me breathless, and standing up too quickly made me dizzy. If I ran for the train, it would take me ten minutes to get my breath back and my heart-rate back to normal. Then of course there was the small matter of the black poo. I knew there was something wrong. But then,when your a rampaging hypochondriac there’s always something wrong. Always has been. Always will be. Sick is the default position.

With the benefit of hindsight, and my new found and encyclopaedic knowledge of physiology and haematology it’s all blindingly obvious. Internal bleeding. Steady blood loss over several weeks. My red blood cells were being depleted, and so less oxygen and nutrients were being supplied to my hungry cells, and less waste materials were being properly disposed of. That’s why I was so tired. Why my limbs felt heavy and ached. Why my head spun whenever I got up from my computer.

And incidentally, why vampire victims are all so pale and interesting. When I got to the hospital they figured all this out in a matter of seconds of course. A bleeding ulcer. Not a big deal these days. Common even. A couple of blood transfusions to top up the red cell count and I was on the road to recovery.

And then they found the cancer.

Which leads me neatly onto another way you can really screw your blood up. Chemotherapy. Chemo is a complicated business. An umbrella term for a whole raft of different drug regimes and therapies. I might go into my own particular personal brand in more detain another time, but for know, here’s what you need to know.

At the very simplest level, cancer is just cells growing out of control. They multiply in an unorganised fashion, and much faster than normal ‘healthy’ cells. Which is why they tend to spread and take over. One of the main functions of chemotherapy drugs, Cysplatin for example, is to damage the DNA in the cells nucleus and thus preventing it from dividing and multiplying normally. This is a great idea. The drug hits all your cells indiscriminately, but because the cancer cells reproductive cycle is that much faster than normal bodily cells, they get hit the hardest. All being well, the growth of the tumour can be slowed or even reversed. Brilliant!

Only on teeny-tiny little snag.

There’s another kind of cell in our bodies that reproduces very quickly too. Yes, you’ve guessed it. Those busy little workhorses, the blood cells. So at the same time as hammering those cancer cells, the chemo is also playing havoc with your bone marrow’s ability to manufacture new blood cells.

I know this is going on a bit, but I’ve only given you half the story so far. As well as the sexy in-your-face red blood cells we all know and love, we also have the less visible but equally essential white cells, and something called platelets. Platelets line the inside of the blood vessels to prevent leakage, and are also responsible for bloods useful ability to clot in the event of injury. Needless to say low platelet count can lead to all manner of messy unpleasantness.

That just leaves the white cells. A subject close to my heart in more ways than one, for reasons I will now explain. White blood cells – they come in several varieties – are our bodies defence mechanism against infection. How they do this is complicated and best left for another time. Suffice to say that without them we wouldn’t last for five minutes.

This is why the boys and girls up at the oncology unit are so interested in my blood. The regular test allow them to monitor the precise levels of cells, platelets and other goodies. If they drop below certain levels, problems can quickly ensue. My particular problem has been very low levels of a particular kind of white cell called neutrofills. This condition Neutrofillia, means a very weakened or non existent immune system. The chances of picking up a minor infection is high, and without the normal defences in place they can quickly spiral out of control. A nicked gum from an over-zelous brushing can be enough to trigger an unpleasant infection and fever. last week my count was low enough that my second cycle of chemo was postponed for a week. I was quarantined at home, avoided people like er.. the plague, and washed my hands about a million times a day. I did get to read a lot of books though. Low iron is another problem I have right now, so there has been a good bit of manly carnivorous activity recently, a welcome chance from the fruit, nuts and rabbit-food.

Anyway, I made it through the week without incident, skilfully avoiding any close encounters with microbial nastiness and my last bloods on Tuesday were much improved, which just shows how quickly our bodies, even this well used and abused one, can fix itself up given half a chance. My counts were up in all departments, iron was good, and my second cycle was scheduled for Wednesday. Much as it was nice to have a break from the tyranny of the medication schedule which rather dominates day to day chemo life, it actually feels good to be back on the wagon again.

 




The C Word #4

Meter T-Shirt




For better or for worse

It’s 1am, and I’ve been lying in the dark composing this in my head. I want to write it down now while it’s still fresh. It could be gone in the morning.

You are sleeping quietly beside me, and the dog is having one of those strange animated dreams at my feet. Today was our wedding anniversary. I was determined to remember for once, but you still had to remind me this morning. Twenty seven years. Shit. Where did all that time go? When did we go and get so old?

And what is it that’s so important that it can’t wait until the morning? And why is my face wet with tears? Well, just this. Thanks for being my best friend for all those years. Thanks for loving me like you do, even when I don’t deserve it. Which is most of the time. Thanks for being the best idea I ever had, and the smartest decision I ever made.

Thanks for giving me the gift of our beautiful, clever and funny daughter. Thanks for making our little house on this little island the home I alway wanted. Thanks for enduring all the empty evenings and lonely weekends while I misguidedly went of in pursuit of things that I thought were more important, even though I now see they were not. Thanks for laughing at my stupid jokes. And not laughing at my stupid dreams.

Most of all thanks for the last three months.

You have been extraordinary. Even by your extraordinary standards. You have been my constant companion through every medical emergency, every consultation, every procedure and examination. You have become a walking almanac of schedules and appointments. An encyclopedia of oncology and hematology. You have fielded the phone calls, completed the forms, dealt with the banks and the insurance companies. You’ve administered my drugs and prepared my meals. Hugged me when I’m anxious, held me when I’m scared.

All I can say Is thank you.

And If you will allow me just one more selfish indulgence, it is this.

I’m glad it happened this way around. Even happy. If the dice had fallen differently, and you were the one who had to get cancer, Let’s face it. I’d be hopeless. Completely lost. The words shit, creek and paddle come to mind. Anyway, you’d be a terrible patient. You’d have to sit still and do as your told. Can’t really see that working.

No, it’s much better this way.

Anyway. Sorry there was no card or flowers. I would have organized something nice but, well, I’m not well you see?

I love you. Happy anniversary.

Wedding 1984 1Wedding 1984 2Wedding 1984 3

P.S. Sorry about the suit. What can I say? it was 1984.




Testing. One-Two. One-Two.

I hesitate to use the term “Bucket List”, but shall we just say that on Sunday I got to tick off one of my lifelong ambitions.

I got to play in a band.

I’ve talked elsewhere here about what a huge part music has always played in my life. Since the early seventies, I have bought records, later cassettes, then CD’s, and finally digital downloads (yes I know it’s unfashionable and quaintly old fashioned but I do still like to pay for my music). I got a summer job in a film processing factory when I was 15 and used the money to buy my first hi-fi. Since then I’ve owned radios, turntables, reel-to-reels, 8-tracks, tape-decks, Walkmans, Diskmans, iPods, iPads and most other music related devices devised by man. We have shelves and shelves of neatly organised CD’s, and the ones that don’t fit on the shelves are stacked in boxes in the wardrobe.

But always a consumer. A passive listener. Well OK, not so passive in the late seventies, there was a fair bit of drunken jumping up and down and indiscriminate spitting going on in those raucous days. What I mean is, I was always in the mosh-pit looking up, rather than on the stage looking down, which was where I always really wanted to be.

The urge to make music has never gone away. I’ve owned three or four guitars over the years, and devoted many hours to learning to play them, with faltering, painful progress and ultimately limited success. A couple of years ago I bought a keyboard and have had a little more success with that. The logical and predictable layout of the keys seems to make more sense to my methodical mind.

Any road up. During my last stay in hospital I got a phone call from my great island friend Al. I was to hurry up and get fit because he and a few of our drinking buddies were forming a band, and I was to play keyboards. Strictly weekend-warrior stuff. Mostly covers and spoofs, and lots of beer and laughs. No pressure. No minimum entry qualifications. I was thrilled of course, and a little scared.

So, on Sunday, the official house band of The Legless Arms held its first band practice in our friend Rob’s barn. The venue carefully selected for it’s geographical and sonic isolation, we weren’t going to disturb anybody other than ourselves and a few sheep. The great thing about bands of middle-aged men is that they always have equipment and instruments disproportionate to their talent. Between us, we were able to assemble an impressive array of loud amps, expensive guitars, keyboards, mikes and other stage paraphernalia. About the only thing missing was a laser light-show and a smoke machine.

We don’t have a name yet. This has been the subject of much beer-fueled debate. Front runner at the moment is The Surfdale Palm Court Orchestra, an obvious choice because none of us live in Surfdale, we are not an orchestra, and we don’t play palm-court music. The other contender is The Bad Livers, which I think has a certain ring,  but there is some concern that this might already be taken.

Let me introduce the band. Put your hands together please for… on vocals and rhythm guitar Big Al Knight. On lead guitar (a very nice Gibson SG), is Rob “Rob” Meriddith.  Bruce Davis-Goff on Bass (absent due to surprise mother-in-law visit). On vocals and percussion, a big Waiheke welcome for Helix Daunting (A.K.A. Alex Duncan) and the lovely Vrinda. And finally on keyboards, for the very first time anywhere in the world, please give it up for Linds “Chemo Boy” Redding. SFX:Wild applause.

Incidentally, the band has collectively decided to dispense with the services of a drummer. They tend to smell, drive expensive cars into hotel swimming-pools, and choke on their own vomit.

The plan was, we were all to turn up with one song we wanted to do. I chose “Send Lawyers, Guns & Money” by Warren Zevon. Alan came up with a demented, punk/psycho-Billy version of “Viva Las Vegas” in tribute to Legless Arms totem and role model Hunter S. Thompson, and Rob surprised us with a ska/reggae arrangement of John Denver’s “Leaving on a Jet Plane”, which Alex quickly re-wrote on the spot as a moving lament on the perils of over imbibing during international air travel entitled “Heaving on a Jet Plane.” Finally our star vocalist Vrinda, belted out another Alex composition, a heartbreaking twelve-bar blues “Growing Old Ain’t Easy”

 Getting old ain’t easy,
though it comes with perks.

Your couch becomes your best friend,
while your kids turn into jerks.

Your friends and neighbors drift apart,
and so does your mid-section.

You search and search on-line for things
to give your life direction.

I’m getting older…

So how were we? Well absolutely bloody terrible obviously.

Unorganised, uncoordinated, unprepared, and unskilled. But also utterly unrepentant and uplifted. Most of the time we just made an unholy din, but there were a few fleeting moments where, entirely co-incidentally, we all found ourselves playing roughly the same chords and notes more or less at the same time. For just a brief few seconds, we were actually making real music. And it was totally bloody joyous and transcendent.

I can’t wait for next Sunday.




Hitting the nail upon the top

This was among the comments that I was moderating this morning. I cant work out whether it is genuine, or just randomly generated spam, of which I do get quite a lot. It appears to come from a legitimate .org website about blood-pressure so I fondly choose to believe it’s for real. It’s just so good, I thought I’d share it with you.

“Unquestionably believe that which you said. Your favorite justification appeared to be on the Internet the easiest thing to take into account of. I say to you, I certainly get irked at the same time as other people consider worries that they plainly don’t recognize about. You controlled to hit the nail upon the top and outlined out the whole thing with no need side effect , other people can take a signal. Will probably be back to get more. Thank you”

No. Thank you.

 




A little more off the top perhaps sir?

Wooly Willy

Wake up you sleepy head
Put on some clothes, shake up your bed
Put another log on the fire for me
I’ve made some breakfast and coffee
Look out my window and what do I see
A crack in the sky and a hand reaching down to me
All the nightmares came today
And it looks as though they’re here to stay

Oh You Pretty Things. David Bowie

 

Breaking news.

My hair has started to fall out.

Its timing is immaculate. They told me at Chemo:101, that this usually happens at about the three week mark, and sure enough, just a couple of days shy of the end of my first 21 day cycle, it has indeed come to pass.

I actually was beginning to think that I might have dodged this particular folicular bullet. In fact, I have to admit to recently having harbored a quiet, but growing feeling of invincibility. In almost all other respects, these chemo drugs that everyone makes such a song and dance about, seem to be just bouncing off me. Perhaps I am somehow immune to their charms. Perhaps, like Keith Richards and Bruce Forsythe, I just can’t be killed by conventional weapons.

Yes that must be it. I’m some kind of modern medical miracle. The first of a new breed. Homo-Superior.

So. In spite of me making light of the whole hair-loss thing since day one of this little adventure, now it’s actually happening, I’m surprised to find myself quite upset. Shocked even.

I still don’t think it’s a vanity thing. Not in the obvious sense anyway. I mean, I’m not going to get all self-conscious about being a slap-head. A chrome-dome. It might even look quite cool in a Yul Brynner sort of a way. It’s hard to say at this point. I might turn out to have one of those perfectly formed craniums. Like Shinead O’Connor, or it might look like an old potato that’s been kicked around the market car-park. It will all become clear in a week or two, at the great unveiling.

I’ve always been a little mystified about why some men get so knotted up about the whole baldness thing. What is it that drives them to invest small fortunes in guaranteed not to work snake-oil cures, Toupées, hair transplants (I wonder where they transplant it from. Do they use your short-and-currlies?), and that most tragic and absurd of all male vanities, the comb-over. No definitely not for me. I’ve kept my hair quite short for years now, so an extra couple of millimeters less isn’t going to make a huge difference is it?

So why do I find myself mourning this morning?

On reflection, It’s not because I’m worried about looking different. It’s actually just the opposite. I’m upset because it turns out I’m just like everyone else after all. I’m not the exception that proves the rule. Not special in any way. Just another cancer victim who people will spot in the street, or on the bus, nudge and nod at, whisper about, toss a sympathetic smile towards. I might as well have it tattooed across my forehead.

V. I. C. T. I. M.

That’s why I’m sad this morning.

 




The C Word #3

Imaginary Tshirt




The unseen hand

The Scream

“Fear is a tyrant and a despot,
more terrible than the rack,
more potent than the snake.”

Edgar Wallace
The Clue of the Twisted Candle (1916)

 

Let’s talk about fear.

Cold, black, 3am in the morning, skull-crushing, bowel-shaking fear.

I have had a long and intimate relationship with it. It’s the emotion that has mostly defined my adult life. Not exclusively of course. I have experienced my fare share of love and happiness, as well as the occasional less noble chords of anger and envy (but rarely hate).

But fear has been the overarching operator. The unseen hand that has guided my life journey and chiseled out my final form.

So what is this thing fear. Where does it come from. What master does it serve?

Fear is a part of all our lives to some degree. It can serve a useful purpose and undoubtedly has considerable Darwinian survival value. It can come in quite handy for preventing us from doing things of questionable evolutionary merit like jumping out of airplanes for fun or putting our heads into tiger’s mouths. People with absolutely no fear tend to be fairly thin on the ground. They either lead very exciting but very short lives, leaving a mangled but otherwise good-looking young corpse, or turn out to be dangerous psychopaths who’s lack of concern for their own mortality tends to extend for a similar casual disregard for other peoples lives as well.

Fear, I have come to understand, is inexorably linked to change. Although why that should be is a complete mystery.

Change is constant, ongoing and inevitable. The Third Law of Thermodynamics says that everything, including ourselves, is in a state of decay. The world is literally falling apart around us. The table I’m sitting at seems solid enough. But at an atomic level it is shedding mass at a prodigious rate. It’s molecules are abrading away, crumbling and decomposing back into their constituent elements. It will take a while, but in a few tens or hundreds of years it will disappear completely, as will everything else in this room. We spend much of our lives trying to fix ourselves, and our surroundings in time. We engineer an assemblage of people, things and circumstances that we feel comfortable and safe with, then devote all our energy to trying to freeze that tableaux forever. Like photograph. So that we can always be happy.

These acts of Canutean folly are pointless and doomed to failure. They are also the root of all our unhappiness. This is one of the central Buddhist teachings. The only constant is change. Nothing lasts forever. Everything passes. Both the good and the bad. Emotions. Pain. Relationships. People. Tables. Mountains. They all come and go. Get used to it. That innate dissatisfaction, or unhappiness that we call ‘the human condition’ is basically our inability to accept this simple truth.

So how we deal with change defines our relationship with fear.

If we have a lot of fear inside us, we naturally assume a defensive position. The thing that stirs our fear is change. So we try to construct a life that is static and predictable. A comfortable routine with no surprises. If you are a hermit living in the mountains, this is probably fairly simple to arrange.

I, on the other hand took my fear to the big city. Embarked on a career in possibly the most volatile, insecure and schizophrenic industry ever devised by the wit of man. One that positively feeds on novelty and change. What was I thinking? No two jobs were ever the same. Hell, no two days were ever the same. What the client loved one week, they hated the next. I had to constantly re-invent myself. I moved jobs. We moved house. Several times. We moved city. Several times. We moved country. Eventually at 40 I even changed career. Change. Change. Change.

It’s fair to say I didn’t cope very well. Trying to impose some illusion of control over this constantly evolving landscape required enormous mental energy. Every possible variable in the system had to be constantly tracked and monitored. Past scenarios reviewed to check that they came out as predicted. Future situations run and re-run as complex mental simulations, all possible inputs and interactions studied and tested to minimise the risk of an unexpected outcome. It was exhausting. This isn’t the sort of thing you can do in the shower, or over a cup of coffee. This level of control required serous effort. And a lot of time. The time that most people use for things like love, friendship, families even sleep. Especially sleep. If you spend enough time trying to control life, it turns out there’s no time left to actually live it.

Eventually I adopt a sort of siege mentality. It starts to feel like it is me against the universe. Life becomes a constant battle. Moving forward feels like wading through treacle. The constant effort required to corral people, places and things into the necessary patters to prevent any inner disturbance wears me down, and in spite of my best efforts, fear starts to get the upper hand. Panic attacks ensued. Insomnia. A constellation of unpleasant physical symptoms manifested by a body constantly awash with an unhealthy excess of adrenalin and stress hormones. Heavy drinking. Depression. Prozac. And always, in the background – even on a good day – the cold, clammy hand of fear on my shoulder.

I need to wind this up. Get to some kind of point.

So here’s the thing.

On August 1st. The day of the now infamous Brittomart Incident. I experienced my last panic attack. Since that day, I have had no fear. Not for a moment. I can’t account for exactly why. Perhaps it’s as simple as having all the accumulated pressures and uncertainties of running a business, and meeting my own and others expectations suddenly lifted. Maybe its just that finding myself with inoperable cancer is my worst fear incarnate, and thus trumps and nullifies all other fears.

Whatever the cause, all the angst and insecurity has been replaced by a new and final certainty. That while the planet will continue to turn, and the universe will keep on expanding with or without me for the foreseeable future at least, the rest of human creation will keep unravelling like bad knitting. The shit will continue to fly towards the fan in slow motion. The utter futility of trying to fight entropy is finally upon me. It’s a strangely liberating and exhilarating insight. I have a huge feeling of release and relief. The time and effort that I would otherwise be spending trying to avoid that most scary of all things, change, I can now devote to embracing and enjoying whatever life will throw at me next.

Paradoxically, when time should – if anything – be feeling short, I find I have all the time in the world. To enjoy whatever is left of my life, in a way that that old devil fear has prevented me from doing so for many years.

 

 




Take 21 of these and call me in the morning

Engaged

It’s OK.

I’m still here.

If you’re picturing me, hunched, pale  and shaking, gripping the cold bathroom porcelain with thin, white clammy fingers. Then I’m sorry to have to disappoint you, but nothing could be further from the truth. If I’ve been a bit quiet for the past few days, it’s not because I’m loitering outside Death’s door, but rather because I’ve been waiting for something even remotely newsworthy to happen. Truth is, it’s all been a bit of an anticlimax so far.

Today is day seven of chemo cycle one. After my epic seven hour drug binge at the hospital last week, we have begun to settle into a steady routine. The initially bewildering schedule of pre and post meal medications, temperature and weight measurements and the attendant paperwork have started to crystallize into a steady and predictable rhythm. I did a quick meds tally yesterday, and my daily tablet/capsule intake is an impressive 21 at the moment, although this will taper off a little as I get further into the cycle.

The Xeloda is the principle chemo drug. The one doing all the heavy lifting. The one with the big yellow CYTOTOXIC sticker on the box. (Cyto – of or relating to cells. Toxic – acting as or having the effect of a poison). All of the other little goodies are helping to manage the side-effects and other unwanted collateral damage. Half of the tabs in my daily quota are Anti-Emetics, designed to control nausea and make food more palatable. This was the bit of chemo I was least looking forward to (we’ve all seen “The Bucket List”) the prospect of spending the next four to six months making daily long-distance calls to God on the great white telephone hasn’t been exactly filling me with the will to live.

Well, in this respect at least, I seem to have dodged the bulimic bullet. I did have one Technicolour Yawn on the first morning, which was as spectacular as it was unexpected, but otherwise nothing. Better still, I’m eating completely normally, and food tastes just as good as it always has. On Saturday lunchtime, three days into treatment, I was sitting in the sunshine at a vineyard on Waiheke Island, with Jo, my lovely mum (visiting from the UK) and a our great friends Jenny and Al, tucking into smoked salmon, smoked mussels and fresh oysters washed down with the local beer. Not what I was expecting at all.

Yes, I can happily report that food is not a problem. Apart from the fucking muesli of course, which Is still just like eating shredded cardboard and toenail clippings – If I’ve been misguided all these years, and there unexpectedly turns out to be an after-life after all, I will happily eat my atheist words and bow in due deference to St.Peter – or whoever is in charge up there, just for the privilege of ritually beating that sanctimonious prick Maximilian Bircher-Benner to a bloody pulp with a length of rubber enema tubing.

Anything else to report? Well, a bit of constipation for the first few days (Total disclosure. Remember?), but that seems to have er… passed, and a spot of the mysterious Peripheral Neuropathy A.K.A. Hand & Foot Syndrome. This is a weird tenderness in the palms and bottoms of the feet caused by small amounts of the cytotoxic drug(s) leaking from the tiny capillaries at our extremities into the surrounding tissues. As long as it doesn’t get worse, it’s not a biggie.  Actually, it’s not without its up-side. According to the literature, those suffering with H&FS should avoid ” washing-up and handling gardening tools.” Well, OK then. If I must.

Fatigue. This is a weird one. Some day’s it happens. Some days it doesn’t. On a good day I can carry on as normal. Follow my regular routine, which admittedly isn’t exactly punishing these days, but still reasonable active, both mentally and physically. Another day, I get to mid afternoon and suddenly crash and burn. An overwhelming weariness is drawn over me like a heavy blanket. My arms and legs become ungainly and unaccountable heavy and the urge to just sink onto the nearest bed or couch is overwhelming. It happens very quickly. a few minutes. My instinct is to fight it. To push back. My oncologist warned me that when the need to rest comes calling, resistance is futile. He’s not wrong. ‘It’s a good thing. Just give into it’ he told me. ‘Were slowly and intentionally poisoning you. There’s a war going on inside you. Your body repairs three times more quickly when you’re sleeping than when you’re awake.’

So. With your permission. I’m off for a quick nap.

***

Steve JobsNOTE: Only tangentially connected I know, but a couple of friends have sent me links to this beautiful and moving eulogy for Steve Jobs, by his half-sister Mona Simpson. (From The New York Times)  Like many of my generation and almost anyone with creative leanings, Steve was a great personal hero, an inspirational figure who’s life book-ends the first great age of of the information revolution which continues to transform our lives for the better. He was almost solely responsible for the democratization of the tools that put art, creativity and design back into the hands of everyone who ever aspired to making something out of nothing. It’s a staggeringly good piece of writing, an eye-witness account and a refreshingly open and honest contemplation on the delicate art of living and dying.

A Sister’s Eulogy for Steve Jobs

 

 

 

 




The C Word: #2

Chemo Tshirt




“Can you fill this jug for me please Linds?” “What from over here? You must be joking!”

7:15am

I’m told the first lot of chemo side-effects to kick in are usually nausea, appetite loss, and loss of taste, so I’ve given considerable thought to what my last ‘normal‘ meal should be. My low-fun diet over the past three months has necessarily excluded many of my favorite treats, cheese, coffee, anything fried, anything sugary or processed. After much deliberation I settle on a simple bacon sandwich. Yesterday evening I carefully selected a pack of lightly smoked, free-range, organic bacon from the deli department of the supermarket. The back of the packet assured me that the lucky young pig had been given a loving massage, tickled with a feather, and read a bedtime story before peacefully passing away in it’s sleep and going directly to piggy heaven. I also picked out a loaf of thickly sliced, brown, whole-grain bread. this morning I alternated between taking hungry bites of the butty and swallowing assorted vitamin tablets washed down with cold, sweet apple juice. It was, without doubt, the finest bacon sandwich I have ever eaten.

9:15am

Here we go. I’m at the Auckland Oncology Day Stay facility. I’m Sitting in a teal colored fake leather Laz-Y-Boy, and my Zimbabwean oncology nurse Alice has just activated the main-line in my chest and hooked me up to the IV pump. I’m going to be in this chair for about six or seven hours she tells me. First up on the menu this morning is a litre entree of saline solution with magnesium. The saline is to hydrate me, and the magnesium is to counter the side-effects of the Epirubicin, which is to be my main course.

The pump is set to discharge the content of the clear plastic bag at 1000ml per hour, so by 9.45 it is already half empty. Alice has provided me with a form and a pen. One of the purposes of filling me with all this fluid is to check my kidneys are functioning normally. There is a jug waiting for me in the bathroom with my name on it. I am to urinate into the jug then then record the time and amount on the form. Well, it’s one way of passing the time I suppose.

10:15am

125 ml of saline to go. The treatment room is filling up with other patients. Five of the seven Laz-Y-Boys are now occupied. Four middle aged women and myself. They are obviously all regulars here, greeting the nurses by name, and chatting noisily amongst themselves. The ambiance is more that of a busy suburban coffee shop or a hair sallon than a cancer ward. They sip cups of tea or coffee and leaf through the gossip magazines in between conversation.

10:30am

Another unit of saline, to help wash down the three different anti-nausea meds I’m to have before my main corse arrives. The first one, Domperitone is in tablet form taken with a plastic cup of cold water. The second Ondasetron and the third Dexonethasone are injected directly into my main-line. As Alice pushes the plunger home, I can feel a warming sensation rise in my chest and up my neck, and there is a strange taste in my mouth, which subsides after a few minutes. So far. So good.

11:15am

Photo 27-10-11 4 46 47 PM

First bathroom stop of the day. I shuffle through, pulling my battery powered IV pump along on its castors. My plastic jug is waiting as promised. I squeeze out 400 ml of golden urine, carefully record it on my chart, take a self-conscious photo in the bathroom mirror for posterity and flush it away. When I return to my recliner, Alice is waiting for me with my Epirubicon. We’re onto the serious stuff now. We go through another elaborate ritual of checking and double checking my identity and patient ID number. I’m shown each of the bags and syringes of the prepared drugs for my personal approval, and confirm that each carries my name, and that the expiry date is correct. Alice pulls up a stool, and carefully injects two large syringes of the ruby colored fluid into my chest, followed by another 500ml of saline.

11:45am

Next up is a brief interlude. A 500 ml bag of Manitol which is apparently designed to protect my kidneys form the toxicity of the Cysplatin which is coming up shortly for desert. Very thoughtful. Alice is back with the results of my blood tests from earlier. They are encouraging. Blood-count is 98/100 and my white cells – which fight infection – and platelets – for clotting – are both above average. this is important, because these are only going to go down from here on in. It’s good to know I’m starting from a position of strength.

12:15pm

Photo 27-10-11 4 02 04 PMPhoto 27-10-11 4 10 14 PM

Another pee, 500 ml for those taking notes, and a rather fetching shade of bright pink this time. The Epirubicin obviously didn’t take long to get into my system. Just time for a quick cup of tea and a tuna sandwich – everything tasting fine far – then it’s onto the Cysplatin. This is the third major component of my chemo regime. It’s a clear liquid, delivered in a another one litre bag. The drug is light sensitive, and so has it’s own cute little black over-coat to protect it form the sunlight streaming in through the large windows behind me. According to my information sheet, side-effects of this little beauty are, Peripheral Neuropathy, that’s nerve damage causing numbness and tingling in the hands and feet, Tinitus and hearing loss, and changes in taste. (I’ve already done all the taste jokes I can think of, so I’ll let that one slide for now.) where were we. Oh yes, bruising, bleeding, diarrhea, anemia, blood clots, infertility and various unspecified allergic reactions. I’d have to say that this one scores pretty low on my cost/benefit analysis sheet.

1:20pm

The last leg. Another 1000 ml of saline and magnesium to flush out my kidneys. Alice tells me I should be all done by 3:30. Feeling slightly saddle-sore but otherwise just dandy. The other punters have been drifting away over the last hour or so, just myself and and one other here now. I’ve just spent a pleasant half-hour chatting with a chap from Taupo. 39 years old. advanced melanoma in his lungs and lymph nodes. His dismal prognosis is matched only by his sunny and upbeat disposition. When not cracking jokes, he sits stoic and relaxed in stubby shorts and singlet, looking every inch the quintessential Kiwi bloke. A farmer or outdoorsman of some kind would be my guess, that would be certainly consistent with the melanoma. The only slight incongruity is the laptop and headphones he uses to pass the time watching movies. He’s on the same 21 day cycle as I am so there’s a good chance we will meet again in three weeks time. I hope so.

1:45pm

My pee chart is coming along very nicely. It’s strangely addictive, like some kind of weird and misguided school science project. I’m up to just under two litres so far which is definitely a new personal best. I don’t know what the hospital record is but given the conditions – overcast with a slight cross-wind, I’m very pleased with my performance. I can tell that nurse Alice is quietly impressed too.

2:15pm

Photo 27-10-11 4 16 45 PM

Regular followers of my journal will know that I’m not above trying for a cheep laugh at the expense of the medical staff. This unfortunately is not going to be an option today. These ladies are without exception amazing. Bright, funny, relentlessly cheerful in the face of all kinds of adversity, caring, compassionate and clearly all passionately dedicated to their work. No effort is spared to ensure our physical and emotional comfort during our stay. Alice in particular is delightful. She’s picked up early on that I’m fascinated by the whole process, and want to know exactly what everything does, and how every bit of equipment works. It’s probably a guy thing I know, my inner control-freak desperately trying to impose some illusion of self determination onto the proceedings. She recognizes my need to know, and takes the time to patiently explain in exhaustive detail, every stage of the process, the reasons for every step in the elaborate arrangement of tubes, valves, reservoirs and clamps controlling the flow of chemicals into my body. She tells me why the various liquids are administered in the carefully designed order of service, and what each one does. The good, the bad and the ugly. I even get a brief lesson on cell metabolism and reproduction. These girls really know their stuff. Its immensely reassuring.

3:15pm

If been sitting here for the best part of seven hours now. First in, last out. I’ve quietly observed a dozen or more patients come in to receive their treatment. Never one to shy away from a hastily conceived and sweeping generalisation, here’s what I think I’ve seen today. A dozen different people, maybe half a dozen different cancers all at different stages. All on different chemo regimes, some almost completing their treatment, and a one or two, like me, just starting out. Differences apart, they seem to me to fall into two distinct and easily separated groups.

Group A share the following characteristics. They breeze into the room, all smiles and hi-fives. They welcome their nurses with a laugh or even a hug. They know their names, and the names of their kids. They have a tenancy toward brightly colored, comfortable clothes and patterned head-scarves or bandanas over their shiny bald heads. They make light, or neglect to mention their sickness, mouth-sores, or painful hands and feet unless pressed on the matter. They make self effacing jokes about their constipation and sleepless nights.They endure their treatment with grace and humor, Even here in their darkest hours, they radiate light and energy. A lust for life, as Iggy would say.

Group B are mostly quiet. Self contained. Even withdrawn. They watch me closely, but look quickly away when I return their interest. They wear drab office clothes and stiff leather shoes. They have clenched fists. Clenched buttocks. If they had hair, that would be clenched too. These people have almost perfected the art of invisibility. They arrive without my noticing, and leave the same way. You could share a phone booth with one of these feint, semi-transparent folk and not even notice they were there. They have a certain air about them. Dark, lost, resigned. Even defeated. When they speak, it’s quietly, and usually to grumble about their bad back, nausea or other symptoms and afflictions. They are quick to call a nurse over to fetch them a glass of water rather than get it themselves, and quicker to criticize when it doesn’t arrive promptly. They’re not rude exactly, they’re just having a bad time. They seem to lack empathy with their carers, and compassion for their fellow travelers.

So. Two questions. First, am I a Group A guy, or a Group B?

Well, in spite of my grey t-shirt I’d like to think I’m a A. For now at least. It’s easy to be accepting and magnanimous at the moment of course, I’m feeling chipper and on top of things emotionally. I’m at the start of my treatment and full of hope and faith. I trust the process, and I trust myself to have the discipline and strength to see this through. I also know I can also rely on Jo and Becca to give me a short, sharp slap if I start to develop any Group B tendencies.

Which brings me to my second question…

I wonder who ends up living the longest, the A’s or the B’s? One lot of studies I’ve read swear that a positive and optimistic outlook has a demonstrable effect on life expectancy with, or without cancer – and that is certainly the commonly accepted folk wisdom. I’ve seen other reports that claim categorically that there is no empirical data that state-of-mind has any influence either way. I know where I’m putting my dollar.

3.45pm

For the statistically minded. My final score on the pee-o-meter was a magnificent 3,450ml, just shy of three and a half litres. I feel I should be eligible for a certificate of some kind.

7:00pm

I unexpectedly and pleasingly find myself tucking into a huge plate of assorted salads, new potatoes and spiced chicken pastry. It tastes good and I polish off the lot. The meal is book-ended with Anti-Emetics and my first hefty 1300mg dose of Xelada. Everything has the good manners to stay down, and we even manage an evening constitutional around the reserve with Sophie Dog.

Maybe this is going to be a walk in the park after all.




The C Word: #1

Cheer Up Tshirt




The light at the end of the tunnel is an oncoming train

Light at the end of the tunnel

Well here we are. The night before the morning after. My chemo kicks off in about 12 hours time. After a couple of false starts, and a lot of sitting around waiting, I’m finally about to embark on my treatment. I’d be lying, and barely human if I didn’t confess to feeling a little apprehension, after all the cure is renowned for being worse than the illness, but mostly I’m just feeling relief, and even a little perverse excitement.

Jo and I went up to the Oncology Unit this morning for my final assessment prior to starting my first chemotherapy cycle first thing in the morning. This consultation seems to revolve mostly around me signing more consent forms and making sure that I completely, absolutely, and definitely-without-a-shaddow-of-doubt understand what I’m letting myself in for. Like I have a choice. We all run over the drug regime in detail again, and I’m weighed and measured (again), after which Aemon our rosy cheeked Jewish/Irish oncologist de jour performs lengthy and complicated calculations on an improbably large desktop calculator – something to do with my Body Mass Index and aerodynamic drag-coefficient – then writes me out an even lengthier prescription in that dense and inscrutable handwriting reserved exclusively for physicians and the profoundly handicapped.

We head down to the hospital pharmacy and I hand over the script. The girl behind the counter wants to weigh and measure me yet again, but by this time I’m able to rattle off the salient information from memory. (180 cm / 80.5 Kgs / Aquarius / Golf handicap 126). After the obligatory half hour wait, my name is called and I step up to the counter to be presented with a small plastic shopping basket brimming with boxes and jars of tablets and capsules. Surly some mistake I protest. these can’t possibly all be for me. There are enough drugs here to render Keith Richards temporarily unconscious. I’m assured that yes, these are all for me. And this is just for the first three weeks. I run over the complicated doses and timings again with the head pharmacist, and I’m presented with a little green spiral bound book with more blood-curdling information about Xeloda, it’s correct use, and it’s veritable cavalcade of alarming side-effects. It’s printed in bright colours and jaunty typefaces in an entirely unconvincing attempt to render the contents more palatable. A little like those creepy and patronizing bank ads in “Teenager” and “Girlfriend” designed to separate young adults from their first pay-packet. In the back is a diary section where I am to record my daily dosage, along with my temperature, weight and a code letter for any symptoms or side-effects.

D = Diarrhea
V = Vomiting
S = Stomatitis
N = Nausea
H = Hand-Foot Syndrome
F = Fever
O = Other Side-Effects
R = Rest
FG = Feel Good
DGASA = Don’t Give a Shit Anymore
ICSA = I Can See Angels!
OKIMTLTU = OK, I made those last two up

When I get home, I empty the bulging brown paper bag of pharmaceuticals out onto the table for an inventory. Two boxes of Xeloda (Capecitabine) one enormous, the other merely large. 500 mg tablets and 150 mg tablets respectively. Baby Pink. I wonder if that’s a function of the ingredients, or some marketing psychologists lame attempt to make them look slightly less sinister – like painting the inside of a panic-room pastel green.I’m gratified to note that boxes are marked Made in Mexico where all the very best narcotics come from. I wonder if Roche leave severed heads on the roadside to warn off the other local drug barons.

Photo 27-10-11 2 54 58 PM

Photo 27-10-11 2 50 19 PM

Oh yes. One other thing. You know you’re operating at the pointy end of the Pharmo-chemical spectrum when your box of tablets come with its own training DVD. Incidentally, according to the till receipt, my three week supply of Xeloda cost you the taxpayer just under eight hundred bucks. Cost to me $10. Thanks guys.

This then, is the X component of my ECX regime, the E for Epirubicin and C for Cisplatin will be administered intravenously at the hospital in the morning. There is also a plastic bottle of a steroid called Dexamethasone, a powerful anti-nausea agent, and two further boxes of something called Damperidone, which is also for sickness and vomiting. Hmm. I think there’s a message here somewhere. I cast my mind back to an innocent question I asked Aemon this morning. “Any particular dietary advice?” He gave me a wry smile and said “Anything you can keep down will be just fine.”

Blimey.




End of Term Revision

Teacher

It’s school holidays here in New Zealand. So this seems like a suitable juncture to pause and review what we have studied so far this semester. We’ve covered a lot of ground, and considered some pretty weighty issues. Here then, is a brief recap of the lessons learned so far. Pay attention. I will be asking questions later.

LESSON I

You can get used to almost anything if you have to

This has come as something of a revelation. It’s fair to say I’ve always been a raging hypochondriac. Every mild ache and vague pain a portent of some potentially life threatening affliction. I would limp around in my own private hell, convinced that a gruesome and lingering death was just around the corner, but too afraid to go to the doctor for the grim confirmation I knew was awaiting me there. The very act of walking into a dentist or doctor’s surgery would set me palpitating and hyperventilating. I avoided sick people like umm… well the plague. Even visiting a friend in hospital would leave me sweating and dry-mouthed.

Maybe all these years of neurotic rehearsal haven’t been entirely wasted. Now I have been confronted with my own mortality finally and unequivocally, I’m surprised to find myself on well-trodden territory. I’ve been to this lonely place many times in my imagination. It feels almost comfortable and familiar.

By accepting the incontrovertible evidence, that this time I really am gravely sick and not just fantasising, I also have to accept that to a large extent, my fate is out of my hands. Yes, I can think positive, try and keep fit, eat well, hug a crystal* etc. but mostly I have to put my faith in the very medical professionals I have always mistrusted and eschewed. Once I have accepted this paradox, there is a certain peace that comes with acquiescence. There is little point in worrying or trying to second-guess these jokers. I can either choose to accept their help, and trust that they have my best interests at heart, or not.

It’s a no-brainer really. I’ve always prided myself on being a pragmatic humanist and a man of science. To turn my back on all that now and go barking up some tie-died, new-age, metaphysical tree in terrified desperation would be to betray everything I have ever believed.

And so I take the medicine. I submit to the “procedures.” I swallow their video cameras, I swallow my pride. And fill their test-tubes with my precious blood. I bow down to their mighty machines, and I even eat their terrible food. If I want to continue living, I have no choice. So why worry?

Here endeth the first lesson.

LESSON II

Dying is just the same as living

Having cancer isn’t like being hit by a truck. It might feel a bit like that when you first get the phone call. But when you get home from the “I’ve got a spot of bad news for you” meeting, you’re still the same person. You don’t look or feel any different. The dog still wags when you walk up the path. The trash still needs taking out. Once the shock wears off, and the tears dry, it’s all business as usual.

There’s no special dispensations. No concessions. Nobody gives up their seat for me on the bus, or helps me across the road. The bills don’t suddenly stop arriving. Everything carries on as normal. This is an important lesson here. The world flatly refuses to revolve around me as it should. There’s a temptation to blurt out “Don’t you realise I’ve got cancer!” when some hapless telephone marketeer rings to ask my position on double-glazing. I remember shortly after my diagnosis, meeting a cheerful elderly couple walking along holding hands and feeling the bitter sting of resentment. How come they get to be old and happy? For a while I try and fill every minute of every day, determined to relish every moment and squander nothing. But even this compulsion passes after a while.

Bruegel

For most people, cancer is a slow, plodding process. It’s a gently outgoing tide, not a raging bush-fire. Incremental. As is the treatment. So far there have been few noticeable changes from one day to the next. Whether I get better or worse, it will be the result of a slow aggregation of tiny and imperceptible physical changes. I won’t just wake up one morning looking like something out of a Breugel painting. I spend a lot of time listening to my body. Carefully studying myself in the mirror. Seeking out any early signs of the beginning of a slow but inexorable decline.

It’s the same process that everyone goes through. We are all in decline. We are all aging from the day we are born. We are all of us dying. Imperceptibly slowly, one day at a time We all gaze into the same egotistical mirror, searching out the same gray hairs, the same yellowing teeth and creeping wrinkles. Entropy in action. Living, dying, it’s just two words for the same process.

And when all is said and done, that makes me just like you.

LESSON III

Make sure your telescope is the right way around

When yo look down the wrong end of a telescope, your field of view becomes very narrow. Restricted to a small, dim, focused area which falls off to darkness in every direction like a failing torch-beam in the night. And everything seems very, very distant. This is pretty much the story of my life. There has always been me, and then the rest of the world. And an unnavigable void in-between. It hasn’t been a ego thing. I don’t think I’m special in any way. I just seem to have had trouble jumping that gap. Making the necessary connections.

The nature of my chosen profession, in concert with an introverted, obsessive and perfectionist personality has resulted in me carelessly mislaying vast swathes of my life to whatever project was currently demanding my complete and unswerving attention. Days, nights, weekends, even holidays were recklessly abandoned. Sacrificed would be the wrong word, there was no element of hardship, for me at least. I have mostly loved my work, It’s just that I have found it all but imposable to ring-fence my vocation from the rest of my life. The important part. My family and friends.

For the best past of twenty-five years I have been like an absentee landlord. Just showing up from time to time to touch up the paintwork, check the inventory, and collect the emotional rent. I was A.W.L. for most of my marriage and my daughters childhood. In retrospect it was an untenable way of life. And selfish. But as I say, It’s amazing what you can get used to. Come to accept as normal.

And I’m not alone. I look around me and see so many of my friends and peers living the same mad, bad existence. Fourteen hour days. Mind-numbing commutes. Hurried desk-lunches. Home too late to put the kids to bed. Just time for a swift bottle of wine the dull the senses and take away the fear for a couple of hours, and a bolted dinner followed by a bout of late-night indigestion and insomnia. And that’s a good day. A normal day. Absolute fucking insanity. The only surprise is that it took me fifty years to cultivate a tumor. It’s a miracle any of us survive.

If I hadn’t been forced to stop this lunacy by my own bodies intervention, it probably would never have occurred to me to turn the telescope around. To finally see the world how it really is. Suddenly my field of view is so much brighter and wider. I can take in the entire broad vista, and suddenly the distance has closed up. I’m no longer just an outside observer, I’m finally part of the big picture. I feel part of something much greater. Grander. The connections have finally been made and the circuits completed. And I know for sure I never want to be separate and “other” again. I don’t know if that’s what is meant by enlightenment, but it’s good. Very good.

Almost worth getting cancer for.

Far Far Away

*I’m saving my observations on the various “alternative” cancer cures that some lovely and well-meaning but misguided acquaintances have suggested for another occasion. These range from the merely unlikely, through the downright dangerous, to the completely barking-mad.

 

 




Cancer. It’s just nature’s way of telling you to slow down.

20111018-181136.jpg




Radiation Boy Rides Again

Last Wednesday was my final visit to the mighty MV-4. After five sessions I’m done with radiation therapy – at least for the time being.

I can confirm that I don’t glow in the dark, it was the first thing I checked. In fact, considering I’ve just had my most intimate molecules forcibly rearranged by a five tonne mega-volt death-ray there’s no outwardly visible sign that anything has changed at all. I have been warned that I might at the very least get a rash, itchy skin or blotches but so far there’s nothing to report. My Adonis like physique and boyish good looks remain mercifully unblemished.

That’s not to say I get away completely scot-free. It’s tempting to believe that’s the case as I skip out of the Oncology Department feeling all bright-eyed and bushy-tailed, but that’s not how radiation works. Rather than instantaneous, its effect is gradual and cumulative.

An hour after exposure, I start feeling sore. It begins in the center of my back, between my shoulder blades. Half an hour later my chest and sides are burning and I feel like I’ve been kicked in the kidneys. A dull and persistent ache, overlaid with a bright, sharp stinging sensation. It’s that feeling you get after getting under a hot shower with sunburned skin. Only way, deep inside. I have a vivid mental image of my organs and sweetbreads lying on a meat tray, browned and sizzling.

After a few hours the worst of the pain abates, to be replaced by a kind of shrunken, dried-out feeling, an empty nausea and a drowsy, creeping fatigue. I quickly learn that trying to blithely push-on through this unwelcome feeling is counter productive. Physical activity, even walking far just exacerbates the discomfort. Eating is painful. Sitting still helps. Lying down is better.

I fall into a routine of traveling back from the hospital after treatment, and retreating to the bedroom with a bad book. It goes against the grain, I can tell you. It feels like I should be fighting rather than acquiescing. Railing not rolling over. People in movies with cancer are always portrayed lolling around indoors looking pale and limp, or slumped in a wicker chair in an autumnal garden with a plaid rug over their knees staring at the sunset.

I’m not ready to be one of those just yet.

A mid-afternoon Nana-nap just might turn out to be the thin end of a long wedge. It’s hard not to resist.

It’s now five days on, and the side-affects are thankfully receding. I was told I would probably feel worse before I feel better, and that has been the case. The couple of days immediately after my last session were the worst, and not much fun, but as each day passes I’m feeling more like my old self. Don’t get me wrong. It wasn’t awful or unbearable. Just unpleasant. I’ve been incredibly lucky so far, I’ve had few symptoms, and little or no pain. I am still sleeping-in later than I should, and feeling a bit washed out by mid-afternoon which troubles me. And I’m getting through Lee Child airport novels at a prodigious rate, which means I’m probably destroying brain cells faster than tumor cells – but I feel like this is at last some kind of progress.

Finally the weeks of politicking and posturing are over, and the enemy has been engaged. Been sent a message. This has only been a preliminary skirmish, but the rules of engagement are now established and hostilities have commenced.

The big push starts on the 26th when the chemical weapons will be wheeled out. That gives me just over a week to get myself combat fit.




MV-4

Photo 14-10-11 1 01 28 PMIn the basement of Auckland Hospital’s Regional Cancer & Blood Services building are six identical rooms. The rooms are large, perhaps seven meters on a side, with shiny linoleum floors, white walls and white suspended ceilings. The rooms are labelled MV-1 through MV-6 for the six identical machines that they house. Each has its own identical reception and waiting area and its own dedicated crew of operators, technicians and nurses.

The machine in question is called a Linear Accelerator. I’ve seen some big bits of medical kit in the past couple of months, CT Scanners and the like, but these puppies are huge. MV-4 crouches in the corner of the otherwise empty room facing malevolently into the center. It’s about the size of an SUV. The bulk of it is painted in a pale blue-green gloss that lends it a faintly military appearance. In fact it does look like some sort of weapon, which I suppose it is in a way – it wouldn’t look out of place on the foredeck of a warship, or mounted on tank-tracks advancing through the rubble of some smashed urban landscape.

Just to complete the picture for you, the gun-crew of four in their functional but smart blue uniforms are fussing around their charge, and I’m standing inside the door hopping quietly from one foot to the other. I’m stripped down to the Grundies once again, and wearing their stupid back-to-front robe thing, and I’m clutching a green plastic supermarket basket containing my shoes, clothes and dignity.

MV-4When the crew are satisfied with their preparations, the gun-captain, Andrew beckons me over to the horizontal couch. My gown is opened to expose my chest and stomach, and the tattooed reference marks are again used to align my body with the green laser grid projected onto my skin. As I’m positioned on my back, with my head resting on a paper towel, and a padded wedge supporting the back of my legs I ask Andrew some questions.

“What Does MV stand for?” I want to know. “Mega-Voltage” he tells me. Andrew goes on to explain that the radiation I will shortly be exposed to is a beam of high-energy x-ray photons. Very high-energy. Not your common or garden x-rays used to image a broken arm for instance are in the kilo-volt range. These will be a thousand times more powerful. Here’s what else I have learned, some from Andrew, some from a brochure I picked up in the waiting room, and some from the oncology team upstairs.

Normal body cells divide and multiply about once every three weeks in an orderly and predictable manner. Just enough to replace old, dying cells and maintain the status-quo. Cancer cells on the other hand reproduce much more quickly and in a chaotic way, hence the tumors tendency to grow and spread. Radiation therapy works by damaging the DNA within the cell nucleus and destroying it’s ability to divide and reproduce. Normal healthy cells have the ability to repair damaged DNA, while malignant cells have a diminished capacity for self-repair.

By skillfully shaping and aiming the photon beam, and using multiple short exposures from different body angles, the radiologists can target the tumor area while minimising the collateral damage to surrounding healthy tissue. This is why my gun-crew spends so much time making sure I am in exactly the same position for each treatment, and why I have to remain completely motionless. Even a few millimeters can make the difference between irradiating the cancer successfully, or unnecessarily frying perfectly good cells.

With everyone satisfied with my alignment, my couch slides smoothly on rails into the shadow of MV-4, and the gun-crew evacuate the room and leave me to the sound of my own breathing, and the radio playing quietly in the corner. I daren’t move my head – I know I’m being watched on closed-circuit TV, but my eyes are gimballing madly around in my skull, watching for something to happen.

The blue-green circular, drum like device suspended a few inches above my chest is, I assume the business end of the weapon. It’s underside is a complicated assemblage of precisely machined stainless steel and glass. There are delicately etched calibration scales, and beautifully turned and milled thumb-screws. The small glass aperture at its dead-center is bisected by a fine black cross-hair. The engineering gene I inherited from my dad, can’t help but admire the workmanship.

The entire assembly is suspended on a fat arm attached to a rotating turret just behind my head. Abruptly there is a clicking of solenoids, and a whirring or servo-motors and the entire turret rotates slowly through 180 degrees. The “ray-gun” rolls around my left side and disappears from my peripheral vision. I hear it “thunk” to a stop immediately underneath the couch.

“Here we go” I think to myself. I stare at the ceiling, and out of the corner of my eye I see a red light blink on over by the closed doors. There’s another “Thunk,” and a loud buzzing sound. The sound of a million volts of high-energy radiation ripping through my body. I wonder if I’m supposed to hold my breath or not. I’m sure I should be feeling something – vibrations, heat, the wet splat of my liver exploding under my rib-cage – but in reality there is nothing at all. No sensation of any kind. After twenty seconds – I’m counting, the buzzing stops. The red light goes off and after a brief pause, the turret rotates a further 180 degrees. The gun appears over my right shoulder and stops immediately over the red marker cross on my chest with another satisfying clunk of metal on metal.

I’m zapped for another twenty seconds from the front, the red light goes out for a second time, and the doors open. Andrew and his crew trail in, and my couch is slid back out into the room. All done. “How do you feel?” I’m asked. “Cheated,” I say. “Are you sure this thing is working?”

“Oh, It’s working all right. Have you taken your anti-nausea meds?” someone asks with a sly grin. I grab my shopping basket, and I’m escorted back out through the waiting area where there are two or three others slumped in chairs clutching baskets of clothes and awaiting their turn. MV-4 obviously works non-stop. It’s an expensive bit of kit, I guess they have to get their money’s worth. Five machines, twenty-five or thirty patients a day each. That’s a whole lot of cancer.

I dress in a changing cubicle and I’m shown where to store my robe for my next session tomorrow. A nurse tapes a strip of yellow paper with REDDING written on it underneath a small cubby-hole on the wall. I roll up the robe and shove it into my box along side all the others.

Photo 14-10-11 1 08 13 PM




My Shit’s Fucked Up

Well, I went to the doctor
I said, “I’m feeling kind of rough”
He said, “I’ll break it to you, son
Your shit’s fucked up.”
I said, “my shit’s fucked up?”
Well, I don’t see how–”
He said, “The shit that used to work–
It won’t work now.”

I had a dream
Ah, shucks, oh, well
Now it’s all fucked up
It’s shot to hell

Yeah, yeah, my shit’s fucked up
It has to happen to the best of us
The rich folks suffer like the rest of us
It’ll happen to you

That amazing grace
Sort of passed you by
You wake up every day
And you start to cry
Yeah, you want to die
But you just can’t quit
Let me break it on down:
It’s the fucked up shit

Warren Zevon, Zevon Music BMI

Linds’ hot tip for a long and happy life No.2. If you haven’t already done so, discover, explore and appreciate the work of American singer-songwriter and maniac Warren Zevon. Zevon is as under-appreciated as he was talented. He was also a legendary smoker, drinker, drug-fiend, serial womaniser and general all-round hell-raiser in the best tradition of Rock and Roll.

SkullHis songs, some autobiographical, some allegorical, some just plain demented document the human condition in all it’s towering majesty and squalid absurdity. I was given my first Zevon album by my mentor Jim Downie in Edinburgh in the early eighties. Jim also introduced me to the work of and along with the equally unhinged Tom Waits, these artists have by and large provided the soundtrack to my life.

Warren was a hedonist of bacchanalian proportions. His adopted logo, which appeared on all of his records was a grinning skull wearing sunglasses and smoking a cigarette. Having avoided the doctors for most of his life, he was diagnosed with terminal cancer in 2003. During his last public appearance on the Letterman Show, he wryly observed that “I might have made a tactical error in not going to a physician for 20 years.”

You might not get Warren. Lot’s of people don’t. That’s OK. But one day, when you find out that your own shit’s fucked up too. It will all make perfect sense.




X Marks the Spot

Photo 12-10-11 12 04 51 AM

Barium is a metal. A dense, insoluble, silvery metal. I looked it up on Wikipeadia. This exotic element, number 56 on the periodic table for the geeks among you, has surprisingly few useful applications. One is in the manufacture of fireworks – it burns a vivid green colour – the other is medical. Barium Sulphate, mixed into a thick, mud-like paste renders the gastrointestinal tract opaque to x-rays. Very useful for looking inside people’s er, insides.

And quite unexpectedly, it tastes of banana.

So here I am, striped to the waist and flat on my back, sipping my delicious Barium Sulphate and banana smoothie through a paper straw. It’s cold, thick and chalky, and feels unnaturally heavy in my mouth.

It’s been decided that the best way to stop my tumor bleeding is to zap it with radiation. A tendency toward bleeding is not good when receiving chemotherapy. Amongst the fun stuff that chemo drugs can do, one is to destroy or diminish the platelets on your blood. Platelets are what case your blood to clot. No platelets, no clotting. No clotting – well you get the picture.

I’m down in the basement of the oncology building for “simulation.” A kind of dummy-run, where the radiologists put me through the enormous white machine immediately behind my head, thus rendering everything but my bones, my barium and banana lined gullet, and my belt-buckle transparent. The idea is to establish the exact co-ordinates of my tumor in 3D space so that the x-ray radiation can be targeted accurately. High-energy particles are destructive by design, and not the sort of thing you want bouncing around inside you randomly like a ricocheting bullet.

The radiologist and his assistants spend some time positioning me correctly on the couch. They nudge, push and pull me in tiny increments until I am perfectly aligned with the machine. I peer down and can see a vivid green laser line bisecting my body vertically, from my groin to the top of me head. I can’t help thinking of the scene in Goldfinger, where the eponymous baddie tries to cut Bond in half with a laser beam. Bond – “Do you expect me to talk?” Goldfinger – “No Mr. Bond. I expect you to DIE!” By rocking my head slightly I can see the luminous line dance over the tip of my nose. A second laser describes a line transversely across my pale chest. At the point where the two intersect at the top of my abdomen, the nurse carefully inscribes a cross-hairs in fine red marker. She makes a second mark at the top of my chest, just below where my collar-bones meet.

Photo 12-10-11 12 05 25 AM

Photo 11-10-11 11 45 42 PM

Just when I thought things couldn’t get any weirder, the nurse says “Right Mr. Redding. I’m just going to tattoo you now.” Blimey, I thought. It’s amazing what you can get on the National Health Service these days. We briefly discuss the possibility of a pneumatic blonde in a skin-tight rubber space-suit wrestling a dragon, but we finally settle on two minute black dots administered with indelible dye and a small needle. The purpose of the tattoos is to serve as reference marks to align me in exactly the same position for each radiation treatment session. She feels that my design, while having artistic merit, might only confuse the operator in the control room. Fair call. I defer to her obvious experience in such matters.

After all this excitement, the scan itself is a bit of an anticlimax. Everybody leaves the room, and a disembodied voice tells me to lie perfectly still. The machine makes a quiet whirring sound, the lights dim slightly and my couch passes smoothly through the doughnut shaped aperture in the mighty device, pauses for a few moments, and then returns me to the room.

I’m helped down off the machine and given a yellow appointment card by the radiologist. I’m to have five “fractions” of radiation over five consecutive days. My first session is booked for a couple of days away. I proudly show of my new tattoos to Jo and slip my t-shirt on.

Photo 11-10-11 11 18 14 PM

 




WordPress Webhosting and dedicated server by CyberHub