Since news of Olivia Newton-John’s death this week, many have paid tribute to her character, humble nature and cultural significance.
She also made a significant contribution to cancer survivorship and the ideal of treating the whole person, not just their disease.
Newton-John was diagnosed with breast cancer in 1992 and underwent a partial mastectomy, chemotherapy and breast reconstruction. Her cancer journey spanned three decades, and as she explained:
The whole experience has given me much understanding and compassion, so much so that I wanted to help others going through the same journey.
Bringing our attention to cancer
Getting the community mobilised around difficult topics like cancer can be tough. Celebrities – and their experience of illness and healing – have become one of the most powerful means for mobilising action.
Olivia Newton-John was one of the first to share her experience of breast cancer with a wide audience and her advocacy opened the door for others such as Kylie Minogue and Angelina Jolie to share theirs.
Stories like theirs have mobilised cancer screening and research, prompting reflection and normalised the experience of living with cancer.
Read more: Angelina Jolie has had a double mastectomy, so what is BRCA1?
The ‘alternative’ voices of cancer survivorship
The diverse approach Newton-John took to cancer treatment was a distinguishing part of her legacy. As she explained when establishing the Olivia Newton-John Cancer Wellness & Research Centre:
I did herbal formulas, meditation and focused on a vision of complete wellness.
Explaining her “pro cannabis” stance on 60 minutes in 2019, she reflected a growing recognition of community interest in diverse approaches to pain and symptom management, and how such community views often rub up against legal and regulatory constraints. Australia only legalised medicinal cannabis in 2016, and many reservations persist among the Australian medical community.
Being open about her experience, Newton-John gave voice to things which many Australian cancer patients try, and believe in, but many in the medical community continue to push back on. In Australia, more than half of people living with cancer use alternative treatments over the course of their cancer journeys. Yet, alternative practices, including herbal products and medicinal cannabis, remain largely absent from mainstream cancer care. This risks putting mainstream medicine out of step with community beliefs.
As regularly noted, managing patient interest in “alternative” cancer care is a tricky area, but what is clear is that openness and frank discussions serve everyone best. A harm-reduction approach, which discusses and detects any dangerous side-effects or interactions, is safer than silencing what people living with cancer are doing or believe in.
Challenges to unhelpful cancer narratives
Cancer has suffered from a wide range of misconceptions and misrepresentations, ranging from ideas about cancer as a “death sentence”, or the idea that you either beat it or succumb to it. People often feel this does them a disservice.
People with cancer are so much more than a “cancer patient”, and they don’t want to be trapped in that frame. They can live well with cancer, without focusing entirely on trying to be cancer-free to the exclusion of all else. Newton-John emphasised this idea regularly.
Likewise, the expectation of “cancer heroics” is an all-consuming and unhelpful cultural ideal. Sometimes “fighting” works and is needed, but in many contexts and particularly for long-term survivors, focusing on quality of life and wellness is critical.
This is likely why various alternative practices have gained traction, despite the slim evidence base for many. The world of “alternative therapies” has tended to present to the community a more person-centred approach, regardless of whether this is actually achieved by many practitioners in practice.
Towards ‘survivorship’
Cancer “survivorship”, in its broadest sense, denotes a broad focus, inclusive of the mind, body and the social life of the person living with cancer, not merely their disease, symptoms or treatment side-effects.
Even two decades ago, the emphasis was almost exclusively placed on curative cancer treatment, treatment discovery, or post-curative experiences. This overly disease-centred focus tended to marginalise the many people who will continue to live on with cancer.
Person-centred approaches, in their many forms, show considerable benefit, although there continues to be a diverse set of understandings about what it actually means. The broad principle of person-centredness is that we are much more than a disease and this matters throughout all aspects of care. Our care needs to be structured around our beliefs, psychological and social needs and life experiences. This may sound simple, but it is often not a central part of the picture.
While we are making progress, as Newton-John was acutely aware, there is so much more to do in this realm. Based on our most recent estimates more than one million Australians alive today are either currently living with cancer or have lived with it. Strategies which help all of us touched by cancer to live well, whether cured or not, should be the priority moving forward.
While we must be careful not to push too far in the other direction – a cruel optimism which threatens to sideline the hard, sad and often difficult experiences of cancer – a balance is needed which we have not quite reached.
Olivia Newton-John’s death will likely be difficult for some living with cancer. Important survivorship stories, when they come to a close, are difficult. So, let’s not pretend. Endings are hard, but a life well lived it also something to celebrate.
Alex Broom receives funding from the ARC.
This article was originally published on The Conversation. Read the original article.
