The day I got the willies.

Originally written in August 2005

Also published in Irena Madjar's book What Women (and their Men) Need to Know About Prostate Cancer

I was so sure that there wasn’t going to be a problem that I didn’t even go with my husband to the specialists’ office on the day he was diagnosed with prostate cancer. Instead, I was sitting in a local park sipping a latte and playing with my then eighteen month old son. After all, Hubby had only just turned 40 and the day was clear, crisp and sunny. It was only later, when I heard the crunch of his car on the driveway at a time when he was supposed to be at work hat my heart thudded up into my throat and my feet started running towards his car. His face was stricken and his eyes were brimming with tears. He put his arms around me and whispered “cancer” and swallowed. I don’t really remember much else for hours after that.

Hubby turned forty in May and took himself off the GP for a general check-up in the interests of good citizenship. We were slightly worried about his cholesterol, which is stubbornly high despite his slim frame and active lifestyle. The doctor took blood to monitor this, and at the same time requested a Prostate Specific Antigen (PSA) check just by way of routine. PSA is part of the “juice” that the prostate makes that the sperm ultimately swims in. PSA is all good and well when it’s in the prostate but the fact that it’s in the blood indicates that for some reason, the prostate is leaking. The PSA results came back as being 4.6 which is more than twice the level it should be for a man of Wayne’s age. Still, the statistics were firmly in our favour and we prepared for news of a hyperactive prostate or perhaps an infection, and Wayne was sent to see a urologist to have further tests.

Hubby's urologist recommended a biopsy just in case, to which we conceded especially after a second PSA test showed his levels had crept up slightly to 4.8. The biopsy was done under general anaesthetic and two days later Wayne fronted up to receive the results. As I said, we were both confident of a good outcome and the resulting diagnosis just knocked us sideways. To my uninformed head, prostate cancer was an old man’s illness and Wayne, with his beautiful, athletic body and healthy lifestyle was not even vaguely a candidate for this awful thing. We have always eaten well, lived well and exercised. We wear hats and sunscreen. We fasten our seatbelts. We don’t smoke. Wayne is as slender and beautiful as an Olympian and has run more marathons (including three Comrades’) than I care to recount. According to the literature, we’ve done everything right. So how do we get our heads around why this is happening to us? 

As I write, its only around a month since we found out the diagnosis and I know that we’re still at the very beginning of this horrible journey. But already I’m exhausted. Hubby seems to be handling it stoically, ploughing through the recommended reading and asking informed questions, meeting with doctors and prodding insurance brokers for answers, ticking all the boxes on his to-do list. I’m just trotting along beside him, trying to look useful but unable to hear anything or do anything except be confounded by the deafening white noise in my head. I feel like a deer in the headlights, stupefied and useless and about to be hit head-on by something colossal and unforgiving.

Hubby, and I’m sure all men with Prostate Cancer, faces a brutal series of choices about how best to treat this. Some men choose to do nothing, an option termed “watchful waiting” in the hope that diet, lifestyle and homeopathic treatments might be able to contain or reverse the cancer until a more preferable treatment option becomes available or the cancer remits. But this seems unsuitable for us, since Wayne’s tumour seemed to be relatively aggressive and any time we spend waiting would only give the cancer time to do more damage. There are several radiation treatments, some more appealing than others. But the option that seems most suitable in our case is a radical prostatectomy, or the surgical removal of the prostate. On paper, it looks beautiful. If the cancer is contained in the prostate, and you remove the prostate then you have no more cancer. QED. In reality though, we face some small but nevertheless frightening potential risks including incontinence and impotence, which must be devastating for Wayne to contemplate given his youth and health, and not that great for me either I might add.

We have also learned that Hubby's case is quite exceptional, in that he is so young. It is not unheard of, of course, but it is unusual for a man in his forties to have it. In fourteen years’ experience, our specialist’s youngest patient ever was 49, until Wayne came along and, at the age of 40, shattered all the record books.

As far as I can tell, experience so far has been a fruit salad of uncertainties including being confronted by a new knowledge of mortality, the prospect of surgery and its many awful implications. And these are mine too, but woven through them are other peculiarities, like the guilty memory of a sunny park when I shouldn’t have been there, the antiseptic smells of waiting rooms and crying behind the steering wheel of my car. Waiting is a curse, second only I guess to actually enduring the treatments. And yes, I am keenly aware of how I am making this about me, when it is Wayne’s disease. Of how I am feeling sorry for me when he is the one who needs to go through it. But the way I see it, I might not be the one with the prostate, but I do have a ring on my finger, a beautiful blue-eyed baby boy to take care of and a very large lump in my throat. Prostate cancer is not just a man’s disease, that’s for sure.

So where to next? For the time being, we have booked the radical prostatectomy surgery and have been told by many medical practitioners that we have every reason to expect the best possible outcome. But Wayne will require a lot of time off work, and it doesn’t really take away our anxiety as we consider the potential risks. Then there’s also the tough logistics to be negotiated, like time off work and babysitters while we bank blood and sperm, or while we consult with any number of doctors, nutritionists and support groups. It is financial year end and we both have our own companies and must churn out all the reports that the systems demand. Our personal tax returns are also due, while at the same time we wade through the requirements of our health funds and insurance companies. Then there’s work, which is busy for both of us, and the demands of a hopelessly active toddler. Yes, I am desperately stressed, I admit, and not always dealing with this in a way that I am proud of.

Part of me feels like that, if things were fair, the clocks would stop and the blinds would shroud the windows and the whole world would converge on our house offering shoulders to cry on and whispering wise words of support. They would nod understandingly as I howl and fling furniture at the walls, and pat me on the back and make me endless cups of tea. In an ideal world Wayne and I would have nothing else to do but focus on each other and beating this thing for once and for all. But the reality is cruelly different, and life goes on, and we must fill out the forms, meet client’s deadlines, remember where we parked the car and find something to cook for dinner. I would like to do nothing except lie with my head in Wayne’s lap and listen to his breathing and the rain pelting against the glass as we while away another precious afternoon together. Instead, I sit in traffic and thump my steering wheel, I wait in line at health insurance office and cry into the onions. This is the most brutal thing I’ve ever had to do.

One of the small ways we’ve managed to feel proactive during this whole messy business is to inform ourselves as much as possible. As I type Wayne is reading one of eight text books on the subject that we have borrowed or bought. We have scoured the internet and the local library and we’ve started attending a prostate cancer support group that is offered by our hospital and has been absolutely invaluable. I have learned so many valuable things that I wish I had known five years ago, which would have given us some defense against this dreadful disease. But then again, I must concede that had somebody told me this, I would have dismissed them as a new age hippy freaks and not given it any more thought. Ah yes, hindsight is 20/20.

Something I am grateful for every day is that when detected early, prostate problems are almost never a death sentence. In fact, in healthy people where the disease is caught in time the success rate of treatment is almost 100%! On the other hand, if we had waited a few years before becoming aware of this problem who knows what kind of outcome we might be facing. We will now be forever committed to annual check-ups and hugely grateful to the medical professionals who picked this up before it became an even more serious problem.

While it’s impossible to know absolutely why cancer happens to good people, we have learned that there have been a lot of contributing factors such as previous illnesses, stress levels, deficient diets and so on. I read an excellent metaphor that likens developing cancer to playing a poker machine at the casino. You get one strawberry, and nothing happens. You pull the lever again and get two strawberries. Nothing. But sometimes the odds stack up exactly and you get five strawberries in a perfect line and bingo, the lights begin to flash and your life is changed forever. So while I ramble on about the things that might have contributed to Wayne developing prostate cancer, bear in mind that its never just one thing, but a domino effect of systems out of whack that put pressure on other systems, and there is still an awful lot of random, brutal luck involved.

Stress is potentially one of the many “strawberries” that can contribute to the onset of disease. In our case, as our nutritionist pointed out, we have been subject to a lot of stress in recent years, even if we weren’t able to articulate it at the time. Wayne has been divorced, we have immigrated and are raising a baby who has been ill and doesn’t sleep much. We are remote from our families and Wayne in particular is easily stressed by his environment and circumstances. Intense and prolonged stress has been shown clearly and specifically to be associated with the onset of cancer. This is because oxygen available to the tissue cells is decreased because of elevated blood fats and increased blood thickness which follow stress. Similarly, stress decreases oxygen available to the protective white cells of the body's immune system, thus debilitating them. In turn, the immune system, having been constantly stimulated by stress, becomes exhausted and impotent, allowing other potential hormonal upsets to occur. In this condition, the body's defensive white cells, although capable of destroying the cancer cells, make no effort to do so.

Lifestyle is in fact the most powerful drug you will ever employ as part of a cancer prevention strategy. Please don’t smoke. If you do, consider quitting for the sake of the people who love you. Make sure you exercise in order to maintain healthy bones and organs, even ten minutes a day makes a huge difference. And with all the fervour of the newly reformed, I believe that meditation too promotes a positive mind-set, a calmer mind and a healthier body. 

Do I sound like a doomsayer? I don’t mean to. It’s just that it has finally hit home to me how fallible my body is after all, despite the decade or so of parties, alcohol and reckless driving during which I was convinced I was immortal. And even more fragile than my body is my heart, which is bruised and straining under the weight of this appalling cargo. Good health is such a blessing, and my responsibility is more than just to myself, but to everyone who has ever told me that they love me.

For me, a shock of this magnitude teaches several things; about how I have taken my body and my health for granted for so long and why I shouldn’t, about who my friends really are, and about what’s really important to aim for every day like a kiss from my child, a letter to a friend or a glass of wine with my husband after the achievement of another day together.

I have heard the clichés many times before, like how I will never lie on my deathbed and wish I had bought a flat screen TV, but this rings truer now more than ever. I have had to completely re-think what is important in my life; and possessions, crippling workloads and bad traffic are not part of this. Cancer has been a terrifying, humbling and strangely life-affirming experience. While I don’t want to take anything away from what Hubby is going through, and has yet to face, I must concede that this has been very harrowing for me too, and I know the same is true for his family, especially his mum. Illness is insidious because of the way it attacks not only the patient, but the hearts and minds of everyone in their circle.

I may not have a penis or a prostate, but I can still get the willies.

Copyright Andrea Moller Doney