My grim new reality: life, and decisions, with cancer

Now the dull ache in the pit of my belly is ­constant. It seems to act as a reminder: this is not going to go away. A few weeks ago, I saw my ­urologist, Pascal Mancuso. He was so blunt, it left me terrified. He spoke about the surgical removal of the bladder and gave me a long list of potential complications, post-surgical infections, the ­urethra collapsing, more surgery. Troublingly, the peculiarities of my cancer mean an internal or neo-bladder, fashioned from a section of the bowel, will almost certainly not be available to me. I’ll be hunting around town for a pair of shoes in green polyurethane to match my new bag.

Peter Hoysted blogs as Jack the Insider. Read his columns here

Worst of all, I will lose not only my bladder but my prostate gland to boot and with that, my sex life will be over. And still, there is a one in five chance of cancer appearing in some other part of my body. And if I do nothing? “You’ll be dead within five years,” Mancuso said.

I quickly did the maths. I’d be dead at 59. My father died at 59. Melanoma. Twenty-seven years ago the oncologists were tinkering around with little hope or confidence in treating cancer. My father had one round of chemotherapy and it didn’t change a thing. Offered another round, he declined and went home to his family. Eight weeks later, he died in his own bed. He must have ­suffered great pain but it didn’t seem to bother him. He was a devout Roman Catholic but one of a rare breed who never sought to impose his faith on others. With his rosary beads and a couple of prayer cards at his bedside table, he assumed a sort of tranquillity in repose, despite or perhaps because of his terminal condition. As the end came, he was at peace with the world. As grim as his death was for his youngest son, it was impressive. His last gift to me was showing me how to die. If he could do it at 59, I could, too.

As I left the urologist I had almost convinced myself: Bugger this. I would turn my back on the surgeons and the oncologists and when my time came, I would go home and die in my own bed.

Two years ago, I went to see a doctor for the first time in six years. Besides the odd head cold, I’d never been sick. I didn’t see any point in bothering the public health system with my minor ailments but after being threatened by my two daughters and my wife, I reluctantly trundled off. The doctor, a Chinese GP, examined the ­questionnaire I had just completed in his waiting room. Two responses had caught his eye: occupation and smoker status. “Journalist, huh? I know what you’re like. Your idea of breakfast is two cups of coffee and three cigarettes. And you suck that smoke down hard.” He had me pegged. “We have to watch you. You get cancer deep. Deep.”

The blood tests came through and I was given the all clear. Doctors, eh? What do they know?

In February last year, I found myself gripped with what seemed to be a bladder infection. I was trotting off to the toilet about every 10 minutes. Passing water was painful and often embarrassingly sudden and uncontrollable. And there was blood. Quite a lot. These are the primary symptoms of bladder cancer but I was yet to appreciate that. My GP prescribed some potent antibiotics and urged me to undergo an ultrasound. I got the script filled and gobbled down the tablets. Within 24 hours, the symptoms had gone. I figured the ultrasound was merely precautionary. I was busy and besides I was cured, what was the point?

Four months later, the symptoms returned and I was finally obliged to take my health seriously. The antibiotics did their magic again but this time I followed through and underwent a CT scan. The technician declared she had found something in my bladder that she considered a polyp.

Armed with one of those enormous envelopes containing the scans, I went to see Pascal ­Mancuso for the first time. Mancuso is a leader in his field, a skilled surgeon in robotic and laparoscopic ­urological cancer surgery who has specialised in what is euphemistically called male voiding ­dysfunction. He didn’t even look at the scans. “You don’t get polyps in your bladder. You have cancer and we have to remove it.”

Two weeks later, I underwent a day procedure known as a cystoscopy. Three weeks after that I entered the cancer centre for immunotherapy, better known as Bacillus ­Calmette-Guérin or BCG treatment. Attenuated bovine tuberculosis was to be pumped into my bladder. Six times over six weeks.

I must admit it was a trifle disconcerting to see a nurse enter the room in a full hazchem suit bearing my first dose of BCG. “Don’t I get a mask?” I asked. The nurse, Jenny, shook her head with a smile and the process began.

When you are male and have bladder cancer, everything happens through the penis, or more specifically through the urethra. The catheter pushes into the urethra, through the shaft of the penis, past the prostate gland and into the bladder. It is that last centimetre that is the most difficult as the end of the tube scrapes past the prostate gland. It’ll make your eyes water, I assure you.

On my first treatment, Jenny slid the tube through the eye of my penis and as the prostate gland scraping began, I let out a loud exclamation which those beyond the curtain and doorway of my hospital room regarded as similar to what one might hear during heightened sexual arousal. “Jenny, are you still a virgin?” one of the nurses yelled out, giggling. Everyone laughed, including me, although my chuckling was marked with a deep embarrassment. This was not my first ­catheter. That came after the cystoscopy, when Mancuso had removed a peanut-sized tumour from the wall of my ­bladder. When I was roused from the anaesthetic I had what felt like four metres of garden hose inside me. There was a lot of blood and more than a little discomfort.

When the garden hose was removed three days later, Mancuso told me the biopsy revealed a Grade 3 T1 cancer. This was not good. A Grade 3 carcinoma is the street-hoon of cancers, a nasty, invasive bastard that tear-arses around your body wreaking havoc. The good news is it had only gotten as far as breaching the first of three walls of the bladder. Had it punched its way through to the second or third, it would have required the surgical removal of my bladder right there.

T1 means the cancer was non-muscular. It had not yet begun its spread outside the bladder. The only accepted treatment in Australia is immunotherapy, where attenuated bovine tuberculosis is pumped into the bladder. The lesson for me was that I had better start getting used to catheters.

BCG treatment is the grandaddy of immunotherapy. If you, like me, have wondered how medical science went from identifying a cancer to developing a treatment that essentially involves giving the patient a localised dose of tuberculosis, the answer is remarkably straightforward. After World War I, researchers started noting that tuberculosis survivors were found to have a lower rate of cancers generally, and in relation to ­bladder cancer the distinction was profound. There followed decades of testing, hypotheses established and confirmed, one after the other. The clinical use of BCG commenced in the 1970s. It was effective in 78 per cent of treatments in clinical trials. After more than four decades, the success rate is closer to 65 per cent.

I have had 12 BCG treatments. I am proud to say the faux-orgasmic exclamation has had no sequel. I may not be grinning but I do bear it. An off-the-shelf muscle relaxant helps and the nurses are always wonderful. I was warned of potential side-effects to BCG, generally cold and flu symptoms with an elevated temperature. Afterwards I felt lethargic for 24 hours but that was as bad as it got. I get a little psoriasis and this flared up, covering my legs and, irritatingly, my scalp. I was told this should be seen as an encouraging sign. Psoriasis, like many skin eruptions, is immune system responsive. But while BCG has been successful with hundreds of thousands of patients around the world, in my case it has not worked. I am part of the one third of patients where the cancer stubbornly remains. The only response is to operate.

I have one more biopsy that could spare me the surgery but I have been told the prognosis is not good. If the first round of immunotherapy didn’t work, I shouldn’t expect a miracle from the second, my oncologist, Associate Professor Stephen Della-Fiorentina, told me.

A week later, I saw Mancuso again and he was similarly forthright. Not long after digesting this grim new reality, I spoke to a friend, Bryan Cockerill. I told him I had made up my mind and I wouldn’t be going through with the surgery. I didn’t want to spend the rest of my life in and out of hospital or feeling as crook as Rookwood with a chemo needle in my arm. “They’re going to turn me into a f..king eunuch. And I won’t even have the lovely falsetto singing voice to go with it.”

It was a joke but one offered through gritted teeth. Bryan was left spluttering out platitudes. I could tell he was shocked by the vehemence and absolute certainty in my voice. It was a terrible thing to do, to heap that fear and anxiety onto him.

When we met for a coffee a couple of days later, I apologised. “Mate, I was just in a dark place.” He understood. This is instinctive stuff, although I didn’t realise it at the time. Something as big and scary as this demands a flight-or-fight response and my first instinct was not to walk but run away as fast as I could. That way, I wouldn’t have to deal with the anxiety or the fear derived from the minute and often excruciating details I knew I would actively seek out on the internet.

I have written twice now about my cancerous bladder. On both occasions I made it clear that one does not fight cancer, one lies down and lets others fight it on one’s behalf. And this is true. Similarly, the well-intentioned babble from well-wishers that cancer patients should think and act positively is a nonsense and provably so. There is not one iota of clinical data to show a positive outlook is a form of cancer therapy. Norman Vincent Peale cannot make cancer go away. Paleo diets and aromatherapy should be cast aside as the feelgood street corner junk they are. Belle Gibson is a fraud, although admittedly I gave a couple of her recipes a go, just for the hell of it.

I might be along for the ride but I have my fair share of fighting to do. There is no running away. There is no place to run to. I have to place myself in the hands of others to make me well again but what I can do is fight to overpower the demons of fear and panic. I am in the fight. I know I can’t win it. Ultimately no one does but I intend to enjoy some victories on the battlefield along the way.

Five years could become 10 or 15, maybe even 20. Who knows? What a time to be alive.

This column was originally published in The Weekend Australian Magazine on 29 April, 2017.