The distressing world of cancer – as experienced by patients, carers and health professionals – is laid bare in a powerful new book being launched at NERAM next week.
Being Patient: Close Encounters in Cancer World is co-authored by three close UNSW colleagues who received their own devastating cancer diagnoses – Guyra-based political scientist and UNE alumna Louise Chappell AM and fellow academics Na’ama Carlin and the late Siobhan O’Sullivan. It features their deeply personal accounts, alongside those of others thrust into a similar cycle of “shocks, treatment and big questions”.
Armidale-born and-raised Louise was diagnosed with breast cancer in 2009 when her children were just 6 and 3 years old. Her treatment continues.
“We hope the book opens the black box and helps to de-stigmatise cancer,” Louise says. “It brings together a range of voices – from single people and parents to gay and lesbian people and Indigenous people – to show that while everyone has their own challenges, there are universal themes, like the language we use around cancer.”
One of the book’s shocking observations concerns women cancer patients. It echoes Louise’s professional commitment to improving global gender justice and human rights, which this week earned her a Member of the Order of Australia award in the King’s Birthday Honours.
“Many cancers impacting women are often diagnosed too late, like the ovarian cancer that took Siobhan’s life,” Louise says. “It’s a shocking indictment that the treatment results for ovarian cancer are still no better than they were in the late 1970s. And that women continue to be misbelieved and misdiagnosed approximately six times before most gynaecological cancers are identified.”
Sharing the experiences of oncology doctors, nurses and psychologists balances the Being Patient narrative.
“There are many patients who could do better in understanding the sort of pressures that the oncology workforce is under,” Louise says. “It’s hard for them, too.”
Ultimately, she hopes the book will help to improve patient advocacy and inform better cancer treatment and care. That includes challenging traditional power dynamics in medicine.
“Na’ama and I are now working closely with oncology experts at the new UNSW Centre for Cancer Survivorship,” Louise says. “We would also like to get into medical schools to speak truthfully to the next generation of doctors about patient experiences, about the things patients are too afraid to ask about, like seeking a second opinion or what they can expect at the end-of-life. And we want to encourage patients and their advocates to be more forthright with their doctors about their physical and psychological wellbeing. There’s a real hunger for these kinds of conversations, to shine a light on the things that can be improved.”
The Armidale launch of Being Patient will be held at NERAM on Thursday 18 June, from 5.30–7pm. All proceeds from ticket sales will go to Can Assist, which assists country NSW cancer patients. For more information go to https://www.eventbrite.com.au/e/book-conversation-being-patient-close-encounters-in-cancer-world-tickets-1989875645622?aff=oddtdtcreator
Being Patient can be purchased in Armidale at Readers Companion and Collins Bookshop.
