Cracking the wayward walnut

Not the normal phone call. As part of general preparations for my seventh decade, I'd decided on 21 November to have routine blood tests done, and the usual response from my GP to the annual check up results in the past has been, "Same old...if all my patients were like you I'd be out of business".

I ran a lot, ate well, went to the gym, and drank good wine occasionally.

But this time it was different: "You should come in, we need to talk".

In his rooms the doctor added, "Everything else is great, however you have an elevated PSA level". He smiled, but seemed cautious.

"In fact, it is substantially elevated".

He was being helpful, but tentative. "In the past it has been 0.5 to 0.9, but this result is 44".

Not good, obviously.

"There may be a number of explanations, but you should be aware that the PSA level is often used to detect early signs of cancer".

So, gently but purposefully, at last we'd got to the reveal: the big C.

Crisis, maybe. But I've always been healthy. Not one sick day in 45 years of work.

Now the insert: "I'd like to do a rectal examination". The initial reaction in my head is 'are you serious? I have laughed with Billy Connolly and Rick Gervaise on YouTube about this, now me?'

But good sense and politeness prevailed, and I lay sideways while a gloved and gelled practitioner's digit interrogated my rear end.

"There is some irregularity there, and I'd like you to see the urologist".

My wife was away visiting family, so that night, with a combination of shock and indignity, I took time to think, reflect, and Google everything I might find on the prostate. It is about the size of walnut, and while 1-in-5 men will get prostate cancer (PC) by age 85, increasingly fewer die from it. 3102 men died from it in Australia in 2014. Death? Clearly it's not a social disease. I need to take this seriously.

After three days it's an ultrasound at the hospital, and two days later it's the urologist. Things are moving at warp speed.

"I'd like to do a rectal examination". Again? What the hell is up there? My rectum is a medical magnet!

The dance of the seven veils continues, and more facts are clear: I have a high PSA level ("actually it's significantly higher than normal"); the prostate gland appears to be enlarged; and there are some nodules on it.

"It would be really useful to get a biopsy done".

So in rapid fire succession, it's an MRI scan at the hospital, followed less than a week later by the biopsy under general anaesthetic where needles are inserted into the prostate and samples taken to determine if there are any cancerous cells and how aggressive they might be.

Some blood in the urine after the biopsy and general discomfort in the nether regions help to distract attention while waiting for the results, which, when they arrive a couple of days later, are not heartening.

Three weeks after the initial conversation we know in detail that it is prostate cancer, that it is present in both parts of the prostate and in 18 of the 26 samples taken, and that it is very aggressive (Gleason score of 9, out of a worst possible 10).

My walnut is riddled with cancer, so why not remove it?

The urologist points out that surgical removal cannot be done until six weeks after the biopsy, to allow everything to settle down as there are important adjoining nerve bundles. Surgery can also have serious side effects like erectile dysfunction and incontinence, so best not to rush. He immediately phones an experienced surgeon who advises a new kind of scan called a PSMA PET SCAN, which will show more precisely where the cancer may have spread.

Soon, with my son for mortal support, I am in a Gold Coast laboratory swallowing some kind of nuclear juice after signing a form that acknowledges this procedure is not yet approved in Australia (but which the surgeon said had been used effectively overseas for several years).

Christmas is three days later, and around this time a great deal of care and thought needs to go into what and how to tell my three adult children. The seasonal festivities feel a little muted.

In the first days of the New Year, amidst our annual family beach holiday, we drive up to meet with the expert urological surgeon, who has the super-scan results in front of him. The prostate is lit up like a Christmas tree. But there are some glowing bits elsewhere in the area as well.

He too wants to do a rectal examination (why not, feel free) but this is someone doing serious exploration looking for treasure up the Khyber Pass. We go through the case history since early December (time flies when you are having fun) and review all the various sources of information (latest PSA results; MRI scan; Biopsy results; PSMA scan report and glowing Aurora Borealis pictures).

His considered advice is that there are various kinds of PC: slow growing, progressive, and in some cases aggressive. Doctors get concerned over a PSA of 5 or more: mine has gone from 44 to 55 in four weeks. This now has to be classified as “very high risk”, because all three individual risk indicators are all “high”: the PSA results and upward velocity; the aggressiveness of the cancer; and spread of the cancer. Do nothing and you probably have a 50% chance of surviving for 5 years.

In his view, surgery is no longer a good option as there is evidence that the internal alien has spread to surrounding lymph nodes, but not yet to any bones. My respect for him increases: how often does a carpenter turn down a job?

On his advice, I am referred immediately to an oncologist who says we need to act urgently, that because I am fit for my age we will proceed with severe chemotherapy which will be part of a four-pronged strategy based on the best available world-wide research: chemotherapy; bone protection infusion; two forms of hormone therapy; and radiation therapy to follow.

I need to be prepared for many months of austere procedures and unpredictable side effects, but he assures me it will be worth doing for the longer-term benefits.

He responds well to my request to be cited evidence for every choice.

On the two-hour drive home, my wife and I have a lot to talk about.

There seem to be an abundance of nasty and erratic side effects: is the treatment as bad as the disease?

I can be a person with a sickness or a sick person. I am not a statistic, though probabilities are worth knowing.

She states resolutely: "This is going to be the year of getting well".

Cracking the Wayward Walnut:

Part 2

So here I am in this fast-paced Dickensian proctological drama: nearly 70 years old, I have just informed my children that I have aggressive prostate cancer, my oncologist says the months ahead will be filled with severe chemotherapeutic drugs and unpredictable side effects, to be followed by the joys and wonders of radiation: which bits that are left will glow at night? My worst nightmares are that I could be bald, need to wear incontinence nappies and a bra, never be able to get it up again, and worst of all, have a sore red rear like a chimpanzee.

In a (wal)nut shell, I'm not sure what lies ahead, but I do know that a positive attitude, a questioning determination to understand all aspects of the relevant knowledge base, and a quiet resolve to see the larger picture of human strength and frailty will help see me through this.

This is not Aleppo, this is not Alzheimers, I was not planning to have more children, I was fit to start with, and I have a loving partner and family. Get real.

I will die of something, but I'm not dead yet.

As part of trying to learn as much as possible, I contact Rob Newton at Edith Cowan University in Perth, whose amazing work on "Exercise as Medicine" was featured on the ABC's Catalyst program. He is an old academic colleague, and from the other end of the country gives helpful advice on how to incorporate exercise around chemo and radio treatments to increase both their effectiveness and the recovery.

Eight weeks after the initial blood test, it's mid-January, and the chemo treatment begins. Get up early, run 5km for endurance, shower, drive for two hours, be needled and tubed. Watch with some uncertainty as the nurse puts on a purple outfit: not a fashion statement, just recognition of suitable safety for dealing with a deadly poison.

A second nurse checks everything before the treatment starts and the drips proceed. Machines beep and buzz over endless minutes that turn into a couple of hours. Then drive back, and later that day go to the gym for resistance and strength exercises. This happens once a week.

In the second week, I have another day surgery operation to insert a PowerPort just beneath the left collarbone: it's like a round rubber nipple beneath the skin which allows faster and more direct access for the drip and infusion processes, and protects the blood vessels in the arms which could otherwise get speared and scarred over the weeks of treatment.

My daughter comes up with me for company one week and says the insertion of the needle into the PowerPort is like watching the heart stab in Pulp Fiction - with a less dramatic reaction from the patient.

In the second week, they add Zometa infusion to start protecting the bones. And the hormone treatments begin about then also: one a day pills, plus a once every three months insertion of a slow release capsule under the skin on my stomach. I am a thinking, caring, pin cushion and pill repository, and this is the equivalent of chemical castration. Is this what happened to Alan Turing?

I was also given serious cortico-steroid pills to take the night before and the night after chemo, as well as prednisone daily, which apparently help to ameliorate side effects. They also get you somewhat hyped and don't help sleeping at all. You get to think and read at lot at night, and there are many crepuscular hours before dawn.

Three weeks in and the side effects become more evident: everything tastes metallic, your hair grows wispier, your fingers and nails start to tingle, and eventually by week 10, the nails start to suppurate and bleed as if they were fermenting, go blacker and fall out. I am told everyone is affected differently: my hair has gone but my moustache has clung on grimly for dear life.

Some side effects are more common than others, like going bald or losing taste. The odd day or two you get a huge spike in temperature and get taken to hospital to make sure you'll live to the next day.

The effects of chemo are heinous, but the PSA results are great: after 6 weeks it's down to 5.6; after 12 weeks down to 1; and after 18 weeks, at the end of chemo, it is down to 0.58.

Then it's a four-week break to the start of radiation, hallelujah, but you're coming off the prednisone, with skin eruptions and general discomfort and unease in lieu of disease.

Finally, or so it seems after six months down the rabbit hole, to the illuminating experience of inner radiance i.e. radiation administered daily for 45 treatments, except on weekends.

It is preceded by day surgery again to insert some metal beads into the prostate, and some tattoos to increase accuracy on the electronic dart board. It rapidly becomes a cumulatively more uncomfortable and internally acrobatic process of having a bladder almost full to bursting while ensuring everything else is completely empty at a pre-determined time each day, holding all that absolutely still while lying flat inside a large predatory moving mechanical creature (it has a head) that becomes so familiar it starts to acquire a personality.

At times I have meaningful intimate conversations with it as it buzzes slowly and quizzically, maybe even hungrily, around my middle parts each day for some twenty minutes, which felt much longer; and then the undignified rush for the loo. No one writes songs or poetry about this, not even Bob Dylan.

But that too has now passed, and my PSA level is 0.008, which is borderline measurable. I am officially off the endangered species list. No one says 'cured', but 'in remission'.

The chemo, the radiation, the sustained exercise regimen, all have contributed to what I am told is a stellar result from a bleak beginning.

But the unforeseen benefit, the outcome that makes me thank the capricious forces that randomly distribute life's jelly beans and cancers, has been the people along the way. Those fellow patients less individually fortunate who nevertheless saw humour in our group misfortune; the amazingly helpful staff who cared and found the right words for the difficult situation; those professionals who really knew the latest research and helped us to understand its applications; my GP, who has throughout been a steadfast advisor and anchor in times of turbulence; the friends whose actions spoke volumes; and above all, the family whose love never waivered.

And it all needs to be put in perspective. This is just one year, the 70th, in one life. At the same time, thousands of lives were impacted by the Lismore floods. But everyone found renewed strength, and responded.

Remarkable organisations like Opera Australia and the Barbarians came to assist, and what a magnificent community, our community, re-emerged from the floodwaters. Trump was elected: thank god we live in Australia with our healthcare system (and some people should lose their hair).

I met younger people with much worse forms of cancer and with younger families, who still smiled. I met someone for whom no form of treatment was available, despite all the research and technological progress. I met wonderful people who worked so hard to help raise funds for cancer sufferers in difficult personal circumstances.

Life is a gift, and precious, and the quest continues.