Jack the Insider: When cancer returns in times of pandemic

Peter Hoysted, aka Jack The Insider. Picture: Nick Cubbin

I have learned that cancer is like hand luggage. I’m always carrying it around. I can stow it in the overhead compartment and forget about it for a while or I might have a few drinks and leave it behind but eventually I have to grab it and walk around with it.

I decided a long time ago, it was good to write about cancer. It helped me and it might help others facing similar situations.

Cancer is an awkward subject to discuss at the best of times, but this was different.

This time around I was not so inclined to share my story.

The problem is I have cancer in a part of the body that a lot of people don’t know of, or, if they’ve heard of it, often mistake it for something else. Those who do know what this part of the body does or more particularly where this part of the body is, shift uncomfortably in their seats. So, telling people becomes triply awkward.

Don’t get me wrong. I’m not dirty on them. God, who wants to hear that?

For those who came in late, I was diagnosed with bladder cancer in 2016, went through the normal treatments including the preliminary BCG where bovine tuberculosis is flooded in via catheter while the patient rolls around like a rotisserie chicken to ensure the bladder receives two coats and a primer. That didn’t work.

Then I joined a clinical trial of a drug known as Keytruda. No joy there.

In 2018, I had a radical cysto-prostatectomy and construction of a new or neo-bladder where the ileum or end part of the small intestine is removed and stitched up like a baseball, the bladder and prostate gland are removed, hurled into a cytotoxic bin and the ileum now referred to as a neo-bladder is installed.

The last time I wrote about my cancer was in 2019 when I was given some happy news. The scan and review period had been extended from three months to six. It was a big step forward, not remission but a sign that I was moving on. That lasted precisely six months.

Re-diagnosed in March

Long story short I was re-diagnosed in March. As the pandemic hit, I had what’s known as a flexible cystoscopy. A camera is inserted into the penis and pushed up to the bladder under a local anaesthetic. I could see it all happening above me on a screen.

I’d walked through the Princess Mary Cancer Centre at Westmead, through the infusion ward where people in various states of unspeakable illness sat in hope, plugged into cannulas.

It was a reminder that cancer does not take a holiday in a pandemic. Everyone was toey about COVID, patients, nurses, doctors, orderlies. Everyone. Masks were worn by all. It might sound disingenuous, but everyone understood that this is not a good time to be sick.

As I lay on the table the initial noises were positive.

Two words: ‘Oh … Oh’

“The neo-bladder looks good,” the surgeon said. And to the layperson’s eye, it did look good. I don’t quite know what carcinomas look like — I have an image of cartoon gremlins with downturned eyebrows and pointy teeth.

Then he was not quite so sanguine.

“Oh … Oh.”

There was something there but of course, they never say. There was a noticeable change of atmosphere in the operating room and when the cysto ended, nurses, doctors, orderlies were smiling their consolation smiles and gently eased me out of the room.

So, then it was a biopsy. Another cystoscopy, this time under a general anaesthetic. A mix of tissue was peeled off and put under a microscope. The histopathologists found low and high grade carcinomas.

Cancer of the urethra. What are the odds? As far as I can tell from my discussions with the oncologist, not dissimilar to winning a complex multi-bet where Pauline Hanson decides to billet a South Sudanese refugee family, Kanye West is elected the 46th President of the United States (oh-oh) and I win the Stawell Gift from the back mark.

No radiotherapy, no chemotherapy

During lockdown, face-to-face meets were kept to a minimum. Phone consultations were the order of the day. I was told there was no point in radiotherapy. No chemotherapy. The response had to be surgical. There were two options available and which option was pursued would depend on the behaviour of those carcinomas.

If there was no invasion outside the urethra, I would have a urethrectomy with the creation of a stoma with my appendix removed and inserted as the conduit between the stoma and the neo-bladder. Self-catheterising, the urologists call it. I would insert a tube into the stoma and empty my bladder in that fashion.

If urologists had their way rather than the ad hockery of millions of years of evolution, I am fairly sure that is how we would all urinate now. As I’ve told my friends, if they could get me a length of hose long enough, I should never have to leave the bar.

But, if those pesky high grades had decided to pursue their manifest destiny and settle in new territory, I was up for a penectomy. I’m sure that word won’t require any reader to scramble for a medical dictionary. It is fairly obvious.

As any male of the human species will tell you, we become quite attached to our penises, that is to say, we certainly share a certain level of fondness that would prefer them not to be detached.

The first question I asked myself was, “What on Earth did I do to deserve this?” I went through my 58-year long list of crimes and misdemeanours. I had treated my body like a jungle gym. I had smoked cigarettes and thus increased my chance of lung cancer, stroke and heart disease but a penectomy? There are no warnings about that on packs of cigarettes.

The truth is, there is no accounting for it. Vladimir Putin orders the death of people with a wave of the hand and he can bench press a Volkswagen. If karma exists, it’s a convoluted, confused twist of fate based on an accumulation of multi-generational offences where, in my case, a genealogist would be able to show a direct line between me and Atilla the Hun.

There was a lot of back and forth between the hospital largely because of the lockdown before a date was set for an MRI. I get claustrophobic in those things and as this one would see me entombed for a good hour and a half, I decided it best to take enough Valium that would have seen Black Caviar run a lacklustre seventh.

Doing nothing meant death

Then I waited. It is easy to say, I am not going to put myself through this. And I did. I really didn’t think I could handle it emotionally. I understood the basic facts. Doing nothing meant death. Then my oncologist gave me the rundown. Death within a year but not just that, a horrible, painful death. Sitting this one out was not an option.

And just as New South Wales came out of lockdown, I got the call. There was no invasion. I was up for a urethrectomy and the installation of a urinary tract system better than God had designed it. I write for a living. I can describe just about any scene or event with a certain flair but even now I struggle to articulate the sense of relief that swept through my body.

Booked and ready to fly

I’m booked in and ready to go next week. I have a professor of urology as the chief surgeon. His assistant is a specialist in stoma creation. I am in the best of hands.

The neo-bladder is clean. The kidneys are pristine. The ureter – the tube that runs urine to the bladder for storage – you could eat your dinner off it. Four hours on the table, a rest and recovery period in hospital of about ten days. And maybe, just maybe, I can leave my hand luggage at the hospital and walk out without it for the first time in four years.