Get the NETs! Support World NET Cancer Awareness Day on Wednesday

In my inbox today sits a note about World NET Cancer Awareness Day.

It is there because a  decade ago I was given no chance to escape one of these nasty little killer NETs, a Neuro Endocrine Tumour that had settled in and around my pancreas.

The cancer was diagnosed late and I was fortunate then, beyond all odds, to find eventually the medical men in America and Britain who managed to destroy Nero (my name for my tormentor) just before Nero would have destroyed me.

Late diagnosis, I see, is the theme of this first day aimed at raising international awareness of NETs.  "If you don't suspect it, you can't detect it" is the motto. Ninety percent of NET patients, it seems, are initially treated for the wrong disease, and a correct diagnosis takes an average of 5 -7 years after symptoms first appear.

Too often that is too late. I have clearly etched pictures in my mind of the fellow patients I met in 2000 for whom diagnosis, when it came, could not stop their deaths.

The force behind the British arm of this campaign is the tireless Cathy Bouvier, a NET nurse specialist who, when I first met here, was working with the pioneering professor, Martyn Caplin, at the Royal Free Hospital in London. Her charity, the NET Patient Foundation, has in the last year offered information and advice to more than 20,000 patients and their families.

Sometimes dangerous diseases are undetected through lack of symptoms. I am no doctor myself but In my case, I can say, there were plenty. At the end of this blog I'm going to attach a short extract from On the Spartacus Road, a book I wrote two years ago, which, while not itself about cancer, contains my best and most indestructible memories of what the symptoms were like.

Sometimes diseases are undetected because busy General Practitioners, with too many patients and too little time, fail to identify the symptoms. That was not a factor in my own Nero's survival at all. Some of the most distinguished consultants in the country looked at his effects and offered only bland diets and ignorance.

So, all power to all everyone  working for World NET Cancer Awareness Day on Wednesday.

Anyone with any cause to wonder whether they should visit the campaign's website, should do so. Click and see.

 

The following is from On the Spartacus Road (2010), published in the UK by HarperPress and in the US by Overlook Press. The chapter is written on the slopes of Mount Vesuvius and is part of the battle scene in which Sparatcus first defeats his Roman enemy.

 

"A decade ago, in the hours when I was in the heaviest unexplained pain I used to see sometimes battlefields like this one. I was never quite sure why. When a biting, bruising clash of enemies was happening below my ribs, it maybe made a certain sense to imagine other battles of blood and guts. Perhaps the free mind has its own way with a blasted body, its ways to make the time pass by, regularly some nine hours of time between the first sense that my Nero was stirring (the name was a classicist's joke at first) and his retirement from the flattened field.

Only every few months did these  horrors come, but once they had begun each time they were inexorable and followed the same absolutely predictable course. Although I would later describe the pains to doctors in lurid but wholly unsuccessful detail, I never mentioned the palliative pictures. It was hard enough to get a medical answer without seeming like a late-night history channel. It took years to discover that Nero was a large lump of cancer. During that time the pictures became the most memorable part of the experience.  Looking back from this wooden table half way up Vesuvius, the battle scenes seem certainly the only part worth remembering now.

The subjects then were never ones I deliberately chose. To attempt have reconstructed the ancient suddenness that happened on these volcanic slopes would have been absurd. Any truth of Spartacus's first battle has long lain far beyond the power of recall or reason. The facts are still far beyond even the wildest argument. There is nothing solid surviving of the battle between Glaber and the gladiators, no swords, no wine-flagons, no words.

The pain pictures were a different experience altogether, random, like a roulette ball cast into the wheeling rays of the sun. Scenes from a classical education came  without will.  During some of Nero's visits I had vivid views of this first fight in the Spartacus war, not those of a general watching high up on a nearby hill but of a soldier seeing what was close before his eyes. It was as though I had been at the centre of this and other slaughters, hour after hour after hour.

This Vesuvius scene was one of the commonest, an assault of iron on the upholstery of my stomach, ribs grasped like ladders, alien objects left behind, broken glass, blunt knives, wave upon wave of pain, slow like an hour then blurred like a second, warfare in its unique and maddest way. After the first hot attack there came shivers and stabbing icicle shards. After the nausea of fear came the thud of the drum and the muffled horn. I might face a baton-wielding field officer. I was suddenly one of 'the wretched wounded', begging to be hit on the jaw by a drunken field-surgeon or any decent man administering the battlefield anaesthetic of his age. The aggression was grotesque. What was it all about? Such violent pain had to have some progression. It had to be saying something. It could not be without some cause or purpose.

As the dust and confusion cleared, a more organised picture show was presented on the surface of my skin. My body pumped up tight, as though with poisoned liquids and gases, the fluid components of pain. Then, on the tight surface  of this slowly expanding balloon, as though from some image-projector above, appeared all the peculiarly recognisable scenes, the ladders clinging to the rocks, the climbers, the killers, the escapers, the men who killed themselves to avoid torture by the unknown. I was not hallucinating. These were more like memories than fantasies or dreams. As my stomach seemed to grow, so the pictures on it grew too and spread further apart. Then smaller images became visible, things I could not see before, people beyond the battle site on the mountain, watchers on other slopes, in the skies, in distant cities. Then the balloon subsided, briefly restoring proper proportions before shrinking into a jumbled mess.

There were no ill effects next morning. My mind was often quicker and clearer after the chaos had passed. Poets have often claimed that opium sharpens their thoughts. Perhaps pain too releases its sharpeners into the bloodstream. Perhaps the poetic drive comes not from the drug at all but from the pain which the drug is supposed to dispel? Are drug and disease in that respect the same? These questions and the shows continued until one of my long line of doctors identified both the cancerous cause and the impossibility – after so long – of doing anything to remove it. At that point the days of imagination were over. My days of argument and forensic medicine began, none of that of any relevance now on the Spartacus Road."