Jeff, Australia
“So it goes.”
This was how I finished a text message to a friend after informing her of my diagnosis with high-risk and advanced Mantle Cell Lymphoma, a cancer that is around three times more common in men than women, is typically widespread at diagnosis, and has a rare incidence rate of one case per 200,000 people worldwide.
Symptoms had flared up a few weeks earlier, with intensity. I had been scheduled to meet with Australia’s Health Minister and attended the meeting without wearing a tie – my lymph nodes had been too swollen to button the collar on a business shirt. Arriving for the meeting, I apologised for the sartorial indiscretion, not realising the imminent threat to my health.
In the days and weeks after my diagnosis, I was inundated with messages of support and heartfelt expressions of solidarity from around the world – an outpouring of concern from friends and acquaintances gathered over a lifetime of work in cancer control.
And yet, I felt alone, suspicious of myself for this weakness, this capitulation to disease while fearful of an uncertain future for me, my wife, our family, and a career that had given definition to my life and work.
After decades of researching the psychological impacts of cancer, my own diagnosis hit home with a deeply disconcerting truth: cancer had stripped me of agency. I was not prepared and surrendered to the system. I let others and I let the system, take control and happily so.
Theoretically, I know what agency is – a sense of control – essential to effective care, the question of how to restore it had never seemed so perplexing.
More so for the fact that I am male, concerned with matters of providing, being, doing – averse to sympathy, wary of pity, and avoidant of every nuance of neediness that cancer imposes. Perhaps for men, the art lies in finding a balance between gently yielding to the relative comfort of acceptance and embracing a deep fury against the threat to life, just as Dylan Thomas implored his father to “Rage, Rage against the dying of the light, do not go gentle into that good night”. Whatever undertakings we broker with others, whatever accommodations we negotiate with ourselves, in the quiet times, there are no bargains. Wherever we land will come at a cost, subject to hard bartering about what is important and what might be lost.
The vast sea of difference between pink and blue surrounded me. Men are from Mars; empathy is from Venus.
And I know I am not alone. Over many years I have spoken to countless men diagnosed with cancer who, not knowing where to turn, retreat inwards, self-isolate, resist. So it goes.
Like thousands of others, my treatment left side-effects that included physical and psychological fatigue equally disturbing and depleting, for me and those who care for me, while leaving very little trace of an injury for others to observe.
In this context, and notwithstanding good intentions, the question ‘How are you?’ can be confronting. We want to be fine, but we are not, and so we obfuscate, we fumble with words, we pretend.
Perhaps pretending must prevail, for a truthful answer to the question would threaten unspoken yet entrenched etiquette and force awkward, clumsy retreats by those who through no fault of their own, don’t know what to say, are not sure how to help. Is there another way, a way other than pretense and facade to bridge the empathy gap?
The sex differences in incidence and mortality of cancer are vast, with significantly higher rates of both incidence and mortality among men globally. Around 21% of males will develop cancer in their lifetime, and 13% will die from the disease. By comparison, around 18% of females will be diagnosed and 9% will die. Notably, a large proportion of the male burden is attributable to modifiable risk factors such as smoking, whereby in OECD countries alone, cancer mortality rates among men are nearly 70% higher.
These figures are a strange irony when we consider the tragic toll of lingering gender inequality for women around the world, and can make it more challenging to address both trends in parallel, towards our goal of equity for all people, irrespective of their sex, gender, religion, race, place, class, or creed.
If we turn to the literature, there is no shortage of medical and scientific speculation on matters of masculinity, help seeking, lifestyle behaviours, and the impacts of gendered expectations that govern how we manage our individual health and wellbeing.
One study of nearly 15,000 men and women in Europe found a statistically significant correlation between long-term depression and anxiety in men impacted by cancer compared to women. Likewise, large-scale longitudinal research on risks of suicide among cancer patients in the US has found that of 8.6 million patients studied over nearly 40 years, more than 13,000 died from suicide, and 83% were men.
While there are no simple answers to the clinical and cultural challenges that confront us, it seems important to ask ourselves a few questions about the aspects of this emotional and psychological gender divide. At the same time, we must tread carefully, to avoid condemning masculinity in its totality, risking even further erosion of the comfort many men find in the strength of their male identity.
There exist models that seem to work for certain typologies of character. A program of ‘Men’s Sheds’ in Australia is a good example – men drawn together around a garage-based exchange of information and support. Likewise, Prostate Cancer Support Groups still thrive in many cities and towns in Australia and elsewhere around the world, coordinated and planned by men and their partners. In the USA there are programs for African American prostate cancer survivors built around Barber shops, tuning into everyday routines where conversation is sanctioned and time and space are adequate. While their appeal is not universal, these programs seem to have tapped a very specific need – placing men among likeminded fellows who understand what it is like to be in the mind of a male.
Over time we can expect programs like these and others, to emerge and evolve, adapting to social and cultural change and responding to increasing levels of open-mindedness. Indeed, our present generation bears witness to this history and the embrace of a new approach to gender equality and neutrality. There seems little doubt this will help to inspire greater diversity of emotional range and experience in future, as world populations respond with kindness to many and varied preferences concerning what it is to be male, female, or non-binary.
Encouragingly, the potential gains for cancer prevention and early detection are strong, giving us the opportunity to rewrite the gender narrative and sociological prescriptions on unhealthy behaviours and prophylactic avoidance, whereby men too often put off action until it’s too late.
My hope is that UICC Members and partnering organisations will work with us towards these aspirations, encouraging dialogue, guided introspection, and self-determination, with all the world’s people travelling together in the same direction.
We are, after all, only human. For my own part, I go in hope, believing as I do that we all go in hope, for the preservation of our life force and the safeguard of our identity. In communion with family and friends and embraced by a warmhearted society, I do hope that no man, no person, is forced to endure cancer in isolation, as an island, asunder from the whole.
Julian of Norwich when contemplating suffering, reminded us:
But all shall be well,
All shall be well,
All manner of things shall be well.
This is my hope, that all manner of things shall be well. So it goes.