~ then fevers came, seemingly at random

Slowly, with certainty, day by day, I’m emerging from the woes of the past 27 months. I still have plenty to agonise over as I flail in my bed at night, but it’s of a far different order than what has gone before.

All that remains of the legal fiasco is a three-weekly visit to an unpleasant office in Oakleigh, where doors snap shut with the finality of jail cells. But after the many trials and tribulations of the recent past, I can take that n my stride.

Some time before the final hearing, with the help of toxic pharmaceuticals, I began a fresh assault on my liver complaint. (see ~my intimate blood borne saboteur.) The first few months were, as expected, nasty and debilitating. Anaemia. Neutropenia. Dysphoria. Then, around week twelve, they began to slacken off, almost to a level that was bearable. I was off-colour but I could manage the odd life activity. About this time that I even went to the Rainbow Serpent festival.

But, with the inevitability of death, a seed took root in my lungs. I began to cough, and to produce a lurid green sputum. Fevers came, seemingly at random and I took to my bed. For five weeks I was scarcely able to drag myself to the kitchen - although, every few days, I shambled around the block in a dark bulky overcoat, usually at night, to forestall any pooling of phlegm in my lungs. As my immune system was suppressed by the HCV drugs, I had little defence against the infection. Despite the heavy duty antibiotics I had been prescribed, the condition grew worse. I was getting just a little scared. I’d never been quite so sick.

Then my viral load results were unblinded. (I was on a clinical trial for a drug by Bristol Myers Squibb) From a starting point of 13 million evil bits per ml, it was reduced to 275. But, frustratingly, two weeks later, it was 500 plus. At this point, I ceased medications. Once again, on my fourth attempt, I faced failure, And this time I had been just a little concerned that they might kill me.

I decided to wait for some of the new remedies come on line - what doctors like to refer to as the ‘small molecule’ drugs. Telaprevir and Boceprevir are examples. There are nearly a hundred being researched (see hcvdrugs.com) and one day, in the not so distant future, I pray there’ll be regimens without such crippling side-effects.

So I lay back down, played video games and waited to get better.

Now it’s three or four weeks later and I’m waking up into the world. I’m exercising again. I’m brushing the dust off affairs that have not been touched in two and a half years. My garden is tugging at me, and I dream as I pluck the hated oxalis from the flower beds. I’m thinking about my house, how I might rid it of the teetering towers of books. Within the next few weeks I’ll be gnawing happily on my various, long neglected writing projects.

And the deadly spores ... even with binoculars I cannot see their dark, roiling, semi-sentient clouds on the horizon. I am even toying with the notion of breaking my long and bitter relationship with spasmo-nemigron.

~ the cupboard moth

It’s taken a few weeks for my black internal weather to disperse - but disperse it appears to be doing. The long long ordeal by law is petering out via an endless series of interviews with agents of Correctional Services Victoria, and no longer do I prepare myself mentally, late at night, for jail.

The other trial, the drug trial, continues ... and, at week twelve, I should know soon if it’s had any significant effect on my viral load; but until then I remain nauseous, gasping for breath and generally deenergised. Heaven knows how I’ll cope tomorrow night. Singing demands a lot of that exact kind of energy I’m lacking at the moment, but we’ll see.

I can think of nothing better than an Ears shows to celebrate the termination of my primary difficulty. Perhaps we’ll do something a bit more significant soon, but for now, tomorrow night at the Lyrebird Lounge, probably at 10.00pm, will have to do. The Ovals are playing at 9ish, if you’re interested, after Josh Lord’s exhibition opening down the street at The Bower.

What’s more, we’ll be playing a new song: The Cupboard Moth ...

I bred a cupboard moth
At some excessive cost
Because it fills my nightly chalice ...

A few doors down the street, there’s an elderly gentleman who breeds native trees. I’ve acquired a great many from him over the years, but have had no luck getting them to survive. Lately, however, fortunes in the garden have changed - even to the point of our new indigenous vegetation luring strange new life forms to the property ...

~ my intimate blood-borne saboteur.

For better or for worse, I’ve enrolled myself in the trial of a new drug which may be a potent HCV inhibitor. It’s a triple therapy: as well as the study drug, I’m on the standard-of-care - peg-interferon and ribavirin: a toxic cocktail which tends to cause anaemia, flu-like symptoms and a genocide of the neutrophils, those fundamental elements of the innate immune system which are seen most often as a constituent of pus.

I’m desperate to shrug off the virus. It’s not killing me yet. For a fifty year old my liver’s in pretty good shape - according to the painful biopsy I had a few weeks ago. And my level of ALT (an indicator of inflammation) is within the normal range. However I’ve had the accursed invaders for upwards of a quarter of a century and there are rather a lot of them: at last count nine million viroids per millilitre of blood. The moment age begins to weary me, to weaken me, I fear they will grasp the opportunity to scour me from the surface of the planet - like a fastidious girlfriend with a box of tissues, scrupulously seeing to a clumsy boyfriend’s spilled red wine

Weird simile, I know. I’ll trust my subconscious and leave it there. Oh, and I was stung by a bee the other day. The hottest of those recent days. In Bruce Butler’s pool. A bee, of all things. There I was, lounging peaceably in one of Bruce’s vast and colourful collection of floatation devices when, lo, the underside of my upper-arm descended upon a bee. When did this last happen? Was I six? Younger perhaps? Of course, even a painful incident like this will not undermine my love and admiration for bees. The creature was acting purely out of instinct. I know that. Though I admit to taking a soupçon of pleasure in what must have been a painful, extended demise.

Polly, however, was out of the pool in a flash, pale as a sheet, trembling in the corner furthest from the water, demanding that we leave immediately. She is terrified of bees. And wasps. Snakes too, I think. (About a fortnight ago, I was walking with her and her friend Megan by Scotchman’s Creek when I spied what I believe to be a tiger snake side-winding across the path. I was a child when I last saw a snake down there.)

Just to finish up on the subject of bees ... Robert - as I have explained previously - cannot stop himself feeding the surly, obese, ill-humoured local population of brush-tailed possums. He built a beautiful possum box for them to inhabit - put it atop the shed in the hope they would cease forcing up the tiles and sleeping in the roof. Robert knows the ways of these possums. Intimately. He can tell them apart as they come for their nightly serving of putrid bananas. They seem to trust him too; he alone is allowed to stroke the fur of the matriarch’s offspring peeking from her pouch ...

Unfortunately, before the possums even noticed Robert’s labour of love, a swarm of honey-bees appeared and automatically made it their home. They became a fixture in the yard. During the Winter, for a time, the hive disappeared and shortly after we found pieces of depleted honeycomb amongst the dried leaves and the dust beneath the box. With Spring the bees returned, and they remain there now ...

I would love to steal a little of their honey... but I dare not risk it.

But back to the point ... this is my fourth attempt to flush the (stubborn genotype 1a) virus from my system. The first was a a monotherapy: interferon-alpha on its own (I responded, but barely). The second was trial of something called Rebif: interferon-beta, typically used for MS patients (The injections hurt like hell, I felt like shit and it did nothing). Then came the double-therapy - still in use - interferon-a and ribavirin (my viral load dropped from 10,000,000 to 1200, but then, like the Borg, the virus adapted and resumed its deadly replication).

Each of these attempts have excised more than six months from my life. It’s simply impossible for me to operate as usual while on these drugs. I’m not myself. I’m reduced, functioning at a minimum.

It’s a gamble: surrender these swathes of time in the hope that, later in life, I will avoid cirrhosis, or liver cancer - or else take a chance and let the virus do its evil work. Always a hard choice. And Polly must be considered. I don’t want to be sickly and weak when the time comes to wield an axe - or machete, or shotgun - when suitors come a-calling ...

I have benefited from the treatments. The most recent, though technically a failure, has caused my liver to show signs of improvement - despite my viral load careering back up to nine million.

This time round, at three weeks in (I’ve just had my fourth weekly injection of interferon-a) the side effects have been milder than I recall. The initial fortnight was bad - I might have had a poisonous creeping ague caught from some queasy, debilitated swine - but since then I’ve been normalising. There is the anaemia of course. It gets in the way of the exercise I rely on to bind my body and soul. But if this is the worst of it - this and the fatigue and the fogginess and the low-mood - then I will plough through the twenty-one weeks remaining with ease.

Perhaps the virus is already gone? The new drug - BMS 790052, which directly attacks a protein necessary for HCV replication (NS5A) - is supposed to work very rapidly. Perhaps I’m feeling better because I’ve cast it out at last. My dark passenger, as Dexter might put it. My intimate blood-borne saboteur.

Or perhaps I’m one of the unlucky ten percent who, instead of the new drug, are receiving a placebo?

~ a bodiless revenant

There is a long cycle that rises from relative calm to acute crisis and back again. Currently, thankfully, I’m enjoying one of those more peaceful times.

As usually happens, when I have time to reflect, I begin to worry about my health. I’m too mentally disorganised [and sick] to become a genuine hypochondriac, but I give it a decent shove.

[The origins of the word hypochondriac are described in the book on Mesmerism I’m reading. Mesmer placed the body’s ‘equator’ and ‘common sensorium’ at the hypochondria on the sides of the upper abdomen. Hypochondriacs were people with unbalanced humours who ‘elicited sympathy, not the scorn reserved for malades imaginaires’.]


First, I attempt to reign in my Nicorette habit. I gave up smoking aeons ago, replacing cigarettes with chewing gum. But I’ve been unable to shrug the actual nicotine addiction. If I don’t watch it, I’ll grind up a forty dollar packet of 4 mg gum in less than a week, and that’s not good for the health or the budget. It results in palpitations and bad head. My answer is to snip the tabs into four pieces and ration these out, with the vague intention of one day giving them up entirely …

Then I begin to worry about my fitness and my heart. I have a membership at the Monash Uni pool, which I maintain whether I go or not. Lately, I’ve been badly remiss in that area. My stomach is sagging. I have little endurance. But at last I’ve returned to the water, where I feel the most alive. I’ve been swimming all week and am just beginning to feel less like a bodiless revenant.

Then I will dwell upon my liver, my Achilles heel. Over time, I’ve endured three long and nightmarish interferon treatments in an attempt to rid my system of the HCV virus, but only the last – a combination therapy with ribavirin - came close to doing any permanent good. Tantalisingly close, actually. I’m sure that the next improvement in treatment will see a cure - so with that in mind I’m returning to the liver clinic, to once more bite the bullet.


My appointment is in a few months and in that time I’ll work to prepare myself. Though these days I’m generally an abstemious drinker, even smaller amounts can worry the liver. I’m determined to teetotal. And I’m going to enforce a dietary regime which I’ve tried and failed to maintain for decades. Minimal animal fats. Water by the bucket load. Ersatz coffee …

All these ersatz substances. Ersatz cigarettes. Ersatz heroin. Ersatz cheese. Ersatz peace of mind … I can deal with it, if it helps me feel human… I love the word ersatz by the way. I learnt it from Philip K Dick, who had a fascination with the German language. Literally, it means replacement or substitute, but it came into English use during the World Wars, when the desperate Germans, deprived of raw materials, used what they had to develop substitutes: ersatz rubber, ersatz heating-oil, ersatz tea, ersatz coffee …

People describe one of the symptoms of Hep C as ‘brain fog’. Well I’ve got that in spades and it erodes my ‘basal hedonic tone’ [this describes whether you feel happy or sad]. I’m sure it interferes with my work, and I’m sure that my daily dose of Spasmo-Nemigron [aka suboxone] is also partly to blame. And that’s another thing I have to address.

It was around this time last year that I decided I’d had enough of the sleepy emotionless cotton-wool world of buprenorphine and tried to come off. Obviously, I failed, but the urge is uprearing again and I’m hot to make another attempt. If things can stay commonsensical and calm in my life, then I might have a chance.