Spoken Word

26 Sep 2023

Spoken Word, Ep. 31: Why us? Why not: Keeping on with Cancer, Humour and hope By Leslie Falkiner-Rose with Peter Falkiner-Rose

Alternative Health, Fitness & Nutrition, Health, James WF Roberts, Joy Media, Joy94.9, Literature, Medicine, Philosophy, Podcasting, Regional, Science & Medicine, Spoken Word, Uncategorized

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Spoken Word, Ep. 31: Why us? Why not: Keeping on with Cancer, Humour and hope By Leslie Falkiner-Rose with Peter Falkiner-Rose

TRIGGER WARNING: THE FOLLOWING PODCAST DISCUSSES CANCER AND OTHER HEALTH ISSUES.

This edition of Spoken Word is about survival. Cancer survival.

James was joined live in the studio by Leslie and Peter Falkiner-Rose, as they discussed their book,

A war with no volunteers, no badges for bravery”

Why us? Why not: Keeping on with cancer, humour and hope.

By Leslie Falkiner-Rose with Peter Falkiner-Rose

People often say, “You don’t deserve this” but, when it comes to cancer, who does?

When a devastating diagnosis tipped the Falkiner-Rose family on its head five years ago, it took medicos, imagination and sheer bloody-mindedness to survive their version of medical whack-a-mole.

Why Us? Why Not. is a story told through a stream of social media real-time updates for friends and family, intimate reflections and research. It aims to help others affected by crazy journeys like the one that has consumed, but not subsumed, Peter, Leslie and Zara since late 2017.

Leslie writes: “This was definitely not us. We prided ourselves on being the useful ones who swung into action when unwell family and friends needed a hand; as the helpers, not ‘helpees’. However, that December we found ourselves running against time. We had moved from an ordinary chest infection to Peter being hospitalised with the blood cancer, Acute Myeloid Leukaemia.

“Back then, statistics gave Peter a one-in-five chance of survival (not that he knew this) and, if the disease didn’t kill him, the brutal treatment regime well might. He was 52 when our world flipped into a fearsome alternative universe which – spoiler alert – Peter survived.”

Leslie says that during the many months at the hospital, it would have helped to read something they could digest in small pieces, that provided the odd laugh and different perspectives to calm their cacophony of feelings. She also hopes the book may give medicos added insights into patient experiences.

“Why Us? Why Not. is a layperson’s take on the ups and downs of living amidst complex medical machinations, coping with extended stints in hospital and finding ways to hang on to hope,” she says.

“Today the extraordinary experts continue to save Peter’s life and we can share our story, which is just one of myriad ways that patients and those around them cope with acute crises and chronic uncertainty.”

Leslie was not a big Facebook user, but her daughter, Zara, set up a private group to support Peter and save Leslie from having to contact scores of friends and family members separately with health updates.

“When he needed a boost, Peter would also go onto Facebook. It became a digital playpen for him,” she says.

“Peter found he had a global cheer squad. A friend had her Irish sister doing ‘double time on the beads’. Another lit a candle for him each Sunday at her church, while scores of other friends sent inspirational messages and amusing videos and photos. Many of their comments are included in the book.

“Peter’s colleagues at Channel Seven News were also tremendously supportive. When the blood cancer returned after the stem cell transplant, his workmates made a seriously silly video, complete with ridiculous wigs, props, loud Hawaiian shirts (Pete’s trademark), leis and a conga line around the news studio. Pete adopted the video soundtrack of the song, Three Little Birds, as his phone ringtone. No matter how often we play the video, Peter tears up.”

But there have been desperate moments. When the cancer came back a third time, Leslie describes how her face “dripped tears”.

“After almost two years of treatment and Pete making it back to work, the doctor said we should ensure Pete’s affairs were in order. No one, even in the darkest days, had suggested that before,” she writes.

At times, life outside of the many emergencies proved to be equally difficult.

Leslie writes: “I do emergencies well. I display Virgo levels of military organisation. I can handle the deep emotional pain that can arrest you physically. I can find humour in the middle of horrendous events. But, when it comes to living reasonably well with a husband surviving Acute Myeloid Leukaemia, I am clueless.

“This is a war with no volunteers, no badges for bravery. It’s a campaign against a stealthy enemy. A life of cancer conscription.”

But humour has been a saving grace. One of the many amusing accounts stems from the family converting their backyard pool into a duck pond overlooked by ‘Duckingham Palace’.

“And what did we do on our 25th wedding anniversary?” Leslie writes. “Pete gave me bronchitis and he says I gave him grief. Who said romance is dead?”

On Peter’s domestic efforts, she observes, “He shops. He cooks. He does a fine line in clothes washing. I remain optimistic about him developing an addiction to ironing.”

When compiling the book, Leslie discovered that Peter had also written some pieces, which are included in the story.

Peter’s four brothers were keen to help and one of them, Chris, was a match who donated stem cells for a transplant. Besides helping to save Peter’s life, the transplant changed his blood type from O-negative to O- positive and cured him of coeliac disease.

Leslie was shocked by stories of families whose members refused to be tested for the stem cell program. “How often do you get the chance to save a life?” she asks.

Peter continues to benefit from medical breakthroughs made since his initial diagnosis. Most recently this has included a drug called Venetoclax invented at the Walter and Eliza Hall Institute (WEHI) in Melbourne.

Leslie says she and Peter have never doubted their team of medicos. “They are incredibly caring, honest experts in this rapidly changing, specialised field,” she says.

Leslie writes they have been “cocooned by love, wrapped in warm wishes and provided with much practical help from friends and family who were able to pitch in at different times. All of it helped us stay on track when events threatened to derail us.”

Many of those people are coming to a celebration and book launch on Sunday 24 September at the family home in Melbourne. They include Peter’s hospital roomie Vic, an ‘Italian tradie’ who suffered through many emergency calls and is also an AML survivor.

The book has been a family production – Zara Falkiner-Rose designed the cover.