Yarning about cancer - our cancer conversations

What we did

During Apr-May 2009, Cancer Voices SA held a series of small group Cancer Conversations involving more than 60 people.

This was part of an international initiative, the ‘Go Public’ Global Campaign 2 Control Cancer . These Community Conversations were volunteer-led events of 6 to 50 people, where participants shared their thoughts, experiences and ideas about cancer and cancer control. A toolkit of resources was provided to assist volunteers to host a Cancer Conversation.

Aboriginal people who participated in Cancer Voices SA ‘Conversations’ urged us to take ‘Yarning about cancer’ into Aboriginal communities.

A toolkit to guide ‘Yarning about cancer in Aboriginal communities’ was developed. See report Yarning_about_cancer-Dec2011-final_report.

Cancer Voices SA presented an overview of our Cancer Conversations and Yarning about Cancer during an interactive breakfast session of the inaugural Australian Survivorship Conference in Feb 2013. See the presentation slides here.

We asked people affected by cancer, regarding their cancer experience:

• what has inspired them,
• what has been most difficult,
• what aspects of the health system are working well,
• what is not working well – and how could problems be addressed.
• what needs to change?
• what could you as an individual change or do, and What would it take to get the general community engaged in cancer control?

What we learned

A final report of Cancer Conversations submitted from around the world (including 13 Cancer Voices SA events) was released in September 2009 at a Global Leadership Forum for Cancer Control, in Canada (where Ashleigh Moore was an invited speaker, representing Cancer Voices SA) .

We found:-

• that Cancer Conversations proved an effective way to engage people and worked well in developed as well as developing nations.
• the organizers believed that the Conversations would generate ideas. They also discovered that:
• the Conversations themselves served as an important delivery channel for awareness, education and even action”.
• personal experience – either direct or indirect- is the key driver of engagement and action”.

Cancer Conversations provide hope that the aims of the Global Cancer Initiative can be achieved in our lifetime:

• Raise awareness of cancer (a third of cancers could be cured if detected early and treated adequately)
• End the stigma of cancer (turn cancer victims into cancer survivors)
• Reduce the global burden of cancer through collaboration and personal, organisational and government (local, state and national) commitments to ‘make a difference’.

Some comments from Cancer Voices SA conversation participants:

“Cancer changed my life – into a financial disaster. I’ve survived the ‘terminal cancer’, but the divorce and ongoing financial hardship nearly killed me. I fall between all the cracks for support.”

“Angry initially at partners decision not to have radiotherapy, then accepted and respected his right to choose.”

“There’s a lack of attention or recognition of the emotional impact of cancer, and a role for complementary therapies such as relaxation, diet, exercise to help regain hope and confidence.”

“It’s so infuriating and hard to have to track down the information you need when you’re crook. Why doesn’t the Dr give you information?”

“I expected to have surgery, be cured and OK. Instead, surgery found inoperable cancer and I have to live with it.”

“Don’t ignore the screening tests. “Leave your dignity at the door”. Accept the discomfort if you want to prevent cancer.”

“I used to think that cancer was ‘out there, but not in my family’. Not until you are touched by cancer do you really see the need for cancer prevention and screening.”

“we heard the same words from the surgeon, but had vastly different interpretations of his meaning!” (husband and wife)

“Cancer is a great learning experience”.

“Cancer can be controlled but can’t be contained.”

” Across the cancer control spectrum there’s too much duplication and money wasted, yet still too many gaps between a patchwork of services provided by charities, non government and government organizations.”

“I moved on to doing things I would not have considered doing, if not for cancer.”

“Young, fit, healthy lifestyle – absolutely shocked to have cancer.”

“Difficult to deal with the anxiety around the time of follow-up tests.”

“Financial impact – need to get back to work despite wanting time-out to heal physically, mentally and emotionally. Fear that this stress could trigger a relapse.”

“The lack of survivorship support, or awareness meant being unprepared for how challenging the ‘post treatment’ period can be. People around you expect ‘life is now back to normal’, but that’s when the whole emotional impact hits. I held it together during treatment, and can’t understand why I’m going to pieces now that I’m supposed to be cured”.

“Don’t just accept that ‘whatever you get’ is OK. Be proactive in your own care decisions.”

“You need that ‘fire in the belly’ of people affected by cancer, to make changes.”

” ‘Confronting’ is how I would describe my cancer experience. I learnt a lot about myself and life, but this knowledge came at huge personal cost. Would I want it to be different if I had my chance again? Mmmmh ……maybe not. Many positives in there amongst the negative aspects.”

‘Thank you’ to everyone who participated in these Conversations.

Cancer Voices SA plan to continue listening in this way. Please contact us at info@cancervoicessa.org.au if you wish to be involved in a future group Cancer Conversation.