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Finding your feet in a dance with mortality

One in six Australian men can expect to be diagnosed with prostate cancer. It’s one of the most commonly diagnosed cancers and if caught early, survival rates are high. Simon Royal reports on life in the ranks of the one in six.

Simon Royal with Connor. Photo: Tony Lewis/InDaily

Simon Royal with Connor. Photo: Tony Lewis/InDaily

I met my mortality the other day. I won’t say confront, because that gives the encounter a hindsight coat of bravery. We’d been dancing around one another since early January, catching a glimpse here and there, but never quite making the formal introduction.

It began when my annual blood test revealed a PSA level of 3.6. The acceptable limit for a man my age is three. Like most acronyms, PSA is a breezy shorthand way of describing a more complex reality. It stands for prostate-specific antigen, and it can be a sign of prostate cancer. PSA tests function much like a canary in the coal mine, except for a man’s nether regions. Both can stop you falling off the perch by giving an early warning of something that’s treatable.

My fear must have showed, as the GP quickly added, “Don’t panic. Your reading is not off the scale, but I am referring you to a specialist for further tests.” Great, I thought, I know that means a date with some doctor’s digit. And I’d been worried about my cholesterol. I’d even stopped scoffing cheese for the week before the test.

The GP’s reassurances about the meaning of the PSA result came with an important caveat. No matter what the outcome of the next tests, he insisted I have a biopsy.

“It’s the only way to be really sure what we are dealing with,” he explained.

To cap the day off, the doctor said my cholesterol had also snuck up. On the weekend I made a point of buying a good chunk of heart-stopping triple brie.

A few weeks after the GP, I was sitting in a different waiting room. It was full, mostly of other men. Some were there alone, some had come with their partners. I pretended to be fascinated by the afternoon news playing silently on a big screen TV. But really I looked at my fellow patients, wondering if they could have ‘it’, or had a more benign reason brought them here. And what of my reason, which straw would I draw?

Much like the repetitive loop of stories on the TV, it was more an exercise in diversion than information.

The urologist put an end to it when he called me into his office. He said he had some good news. My second PSA test had dropped to 3.1 – effectively back in the “safe” zone. He must have asked me a few general health questions, which I don’t recall now. I was apprehensive, not so much about the upcoming finger, as the unfamiliarity of everything. Happily, the awkward moment was lightened by a bit of banter.

“Can I expect flowers and chocolates out of this”, I asked.

“No,” the doctor replied, “and your timing is off, too. If you’d come earlier there’d still be something in the mini bar!”

With the informalities at an end, I was directed to the couch, accompanied by the unmistakable snap of a latex glove onto a hand. The urologist said he couldn’t feel any anomaly or enlargement of the prostate. Along with the lower PSA reading, he remarked this was a positive sign, though, like the GP, he insisted I take an MRI and biopsy.

As I walked out into the February sunshine I counted the day as strange, but successful. It would be the last time I felt that way for a while.

Until it happened to me, I’d not noticed how the word cancer marches lockstep with a language of conflict. It defines and shapes the way we discuss the disease. Cancer’s always the relentless old adversary against which we battle, or struggle, or fight. And, hopefully, prevail.

For me, the first thing I needed to defeat was myself.

It’s not simply that the disease commandeers our bodies and uses them against us, which is bad enough, but cancer also invades how we imagine ourselves. I know I will never do all the things I’d like to: the trips, the further studies, the mastery of a foreign language (even a mastery of English would be a start), writing a best-selling book, though I still hold hopes for a mildly engaging one.

But while the achievement is important, so is the dreaming – that’s where we commit to life’s possibilities. A cancer diagnosis instantly steals this, slamming down a horizon where a moment ago there was none.

Taking advantage of the new vacancy, I found a “tyranny of the significant” moved in – carpe diem – seize the day and all that caper.

So with all the days I hadn’t seized, what had I done with my life that really mattered? It’s a horrible bloody question to ask oneself, especially for a procrastinator. The answer is never enough. Oh, he climbed Mt Lofty, but not Mt Everest. That’s a mediocre epitaph if ever there was one, and it would be the only one I was getting.

Nothing mattered, nothing measured up. I’m not sure why we persecute ourselves with the conceit that so-called ordinary lives don’t matter as much as great ones. But we do and it’s destructive. Those ordinary lives mean the world to the people living them.

The existential crisis brought some ugly friends along with it, in the form of a horde of dark thoughts. One of the stand-outs was that I would become the son who made his mother bury him. I guess it probably wasn’t a great prospect for mum, either. Though perhaps when I was younger, maybe not?!

The dark thoughts were an unruly bunch, constantly elbowing one another out of the way for attention. Often they were so greedy they were all I could think of: Will I ever be able to trust my own body again? Am I a dead man walking?’ And so on.

Occasionally, though, they’d shut up just long enough to let some maudlin notions through.

What had I done with my life that really mattered? It’s a horrible bloody question to ask oneself, especially for a procrastinator. The answer is never enough. Oh, he climbed Mt Lofty, but not Mt Everest

I cringe recalling the evening we went to the pub in Verdun for dinner. I’d looked forward to it as a chance to forget for a bit. Sitting a little way from us was a table of four or five people. They had that easy comfort that’s honed through a lifetime of knowing one another. It was obvious, clear across the room.

I always assumed that one day that would be me and my friends, but as I watched our fellow diners I felt that certainty slip away.

It’s one thing for the middle-aged to admire a table of taut young things. This, however, was a group of geezers for whom 80 was but a blur in the rearview mirror. Yet there I was, looking at them with undisguised envy, wondering if I’d get a seat at that table. Feeling pathetic, I poured more wine.

I’m pleased to say, however, that one particular bit of self-pity didn’t trouble me.

Despite the irony of announcing one’s humility to the world, the idea of – oh God, why me? – never crossed my mind. I’ve no doubt that if it had, a hard little internal voice would have slapped it down immediately.

“Well why the hell not you? Don’t you dare think you’re something special.” With cancer, of course, none of us are.

The onslaught of change didn’t only play out in my head. Some days were consumed by the practicalities of my new situation.

Since being born a period of time ago, I’ve spent a grand total of one night in hospital. That was back in 1968. I was five, and my parents had just discovered my allergy to bees the hard way.

I’ve now gone from being a health system ingenue to spending hours in clinics, waiting to be poked, prodded and probed. There were scans and tests, followed by anxious waits for the results – had it spread?

Until an answer came, every random lump or bump received a Gestapo-like interrogation. Actually, the lumps and bumps could expect many interrogations… just to be sure.

To deal with all the messy thoughts and days, I decide to write and talk about them. I hoped that would give me back the control I felt I was losing, even if it turned out to be illusory.

Naturally, there’s been some procrastination with my writing – we are who we are, after all. But what I hadn’t expected on telling other people was a slight, but nonetheless stubborn, sense of guilt. No matter how much I tried to reason with the feeling – “you must tell your family and friends”, “they have a right to know”, “they’ll be hurt if you don’t”, etc, etc – it never quite left.

I didn’t want to be a disappointment to others. And I really didn’t want to saddle their lives with worries about my own.

As it turned out, it was the people I was telling who got me off this useless guilt trip and on to a more sensible path. We’ve made that journey together.

Sometimes cancer can feel like a “me-too” movement of the unwilling.

In the last couple of months, two state MPs have revealed their diagnoses – one breast cancer, the other prostate. Then there’s that other Royal family, and their tangles with the c-word: King Charles, the Princess of Wales, and Fergie. My surname guaranteed I’d become the butt of jokes about fingers and Royal rectums. “If it’s good enough for Charlie’s bum, then it’s good enough for yours,” and so on.

To be clear, the King and I did not share the same digit, but there’s absolutely no arguing with the sentiment. Everyone has a cancer or other health crisis story to tell, whether it’s their own or someone else’s. To hear those stories while telling your own is not only a blessing, it’s crucial. It’s not that misery loves company, but misery, like everything else, needs to know it’s not alone.

I found having a prostate of one’s own wasn’t a necessary prerequisite to empathy, either.

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Early on, my friend Astrid gave me some much-needed perspective, along with a laugh.

“Darling, think of it as your version of my hysterectomy,” she said, when I told her the news. “These bits were important when we were young, but our lives have changed, haven’t they? Other things matter more now, and so I say get rid of them… you are better off without them!”

Two other friends, also minus prostates, spoke from first-hand experience. Peter had his prostate removed this time last year, while Barney is a real veteran of the procedure. As he puts it, Barney had his prostate “whipped out” more than 14 years ago.

From their respective homes in the state’s southeast, Peter and Barney called me every couple of days, asking how I was doing, checking on the results of the latest test, and, crucially, walking me through what I could expect to feel. Or in the case of one particularly cherished male part, not feel. Between the three of us, I doubt there’s a dick joke in existence we haven’t cracked.

There’s no avoiding the fact that after having a prostatectomy approximately 80 per cent of men can expect some level of erectile dysfunction, though I’m told how it plays out varies greatly between individuals. Dealing with it is as much, if not more, an emotional and intellectual hurdle as it is a physical one.

For a man in his 30s or 40s, having to undergo a prostatectomy would be a far more devastating experience than I’ve found it. He’s losing so much more than I have – the likely to end to any dreams of fatherhood, along with the fun times he’d expect beforehand, to name just two.

Much of the pre- and post-operative professional support offered deals with erectile dysfunction. For example, I can truthfully say until recently all I’ve ever known about penis pumps came from watching Austin Powers movies. Now, I know so much more. Too much more, I dare say.

But for me, after 27 years of being happily (more or less) partnered, the supply of erections greatly exceeds demand.

I mean, it’ll be nice if they come back, but at this stage I’m really not fussed. There are plenty of other things about me that test the bonds of my relationship, but this won’t be one of them. I’m very fortunate to be able to say that. I don’t envy men who have that fear. Also, one must be practical about these things. It’s better to be alive cracking jokes to a round of groans, than to die cracking hard-ons to the sound of crickets.

My radical laparoscopic prostatectomy, to give it its full title, was done on May 1. In the lead up everything suggested I faced a serious, but not urgent, scenario. The MRI test was scored as a four out of five.

The biopsy showed a mostly intermediate cancer with some specks of high-grade material. I was told as a matter of prudence the whole thing would be treated as a high-grade event.

One of the useful tools of journalism is the ability to quickly sift information to find the headline. Now, when I needed it most, that skill abandoned me. I could only see and feel fear

The PET and CT scan showed the cancer was contained to the prostate. This was the picture I carried around in my head, along with the knowledge prostate cancer has a better than 95 per cent survivability rate when detected early. I heard many times, “if you are a man, and you are going to get cancer, this is the one you want”.

“They take it out, you may need some follow up, but basically you’ll have to find something else to die from.”

That should still be the case for me, but the picture the professionals and I had about the nature of this cancer was utterly wrong.

A fortnight after the operation, I returned to see the urologist. He carefully walked me through what the pathology tests actually revealed. Finally out of my body, and unable to hide behind a low PSA reading and mixed biopsy results, this cancer was a much more aggressive and sinister beast than anyone knew.

It had gone to the very edges of the prostate, and was ready to move on out. The urologist said in another six months he had no doubt it would have been into my bones. That said, he was as confident as he could be he’d got it.

“There’s a 10 to 20 per cent chance you may need radiation treatment at some point in your life, but you’ve had a massive win today, that’s what you should take away,” he said. Except I couldn’t, not for a while, anyway.

One of the useful tools of journalism is the ability to quickly sift information to find the headline. Now, when I needed it most, that skill abandoned me. I could only see and feel fear. Another journalist, my friend Lachlan, put it best.

“You crossed the tracks without looking,” he said. “And just after the express went by.”

Sometimes, I still feel the rush of wind from that train on the back of my neck, making the fine hairs stand on end.

What if after the second low PSA reading it was decided all I needed was another follow-up test in six months? What if I’d chosen to leave the operation for a month or so? Both would have been reasonable things to do, based on what was understood at the time. Only the thinnest of lines divided the “massive win” from a total loss, and it’s fashioned entirely from a couple of chance decisions.

My good news terrified me but then, slowly, I remembered the caution, skill and expertise of the doctors.

One other thing the urologist said that day stuck with me. As I thanked him, my disappointment about flowers and chocolates came up again.

“You know, it’s your GP who really saved your life,” the urologist said, understating his own indispensable role. “He’s the one who really deserves the box of chocolates here.”

My GP’s name is Dr Linn. There’s nothing I wouldn’t, and indeed haven’t, told him over the last decade or so – possibly to his discomfort. I’m lucky to have such a relationship but it is, nevertheless, a sharply lopsided one. I don’t know as much about Dr Linn’s life as he does about mine, though he’s probably not so uncomfortable with that.

I do know, like his colleagues, Dr Linn spent years slogging away in medical school to become a GP. I also know, despite the lip service given to GPs’ front-line place in the health system, that whatever Dr Linn is paid it is not enough. His salary wouldn’t be within coo-ee of the vulgar sums dispensed to greasy pole climbers at the top of corporate and public enterprises. How’s that fair?

To me, Dr Linn is more than a platitude. He’s the cornerstone upon which my health rests. I expect every other GP around the country has patients who feel exactly the same, and for much the same reason.

So, inadequate as they may be, I guess thanks and chocolates will have to fill the gap. But what of the flowers? There are a few bunches that won’t be going to my funeral anytime soon, I hope.

I can live with Dr Linn getting them, too.

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