Cancer Conversations


CVSA members C2CC

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

We have been asking people affected by cancer, based on 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 would it take to get the general community engaged in cancer control?

In addition to informing local action, a report of each Conversation has contributed to the 'Go Public' Global Campaign 2 Control Cancer.

 

Cancer Conversations workshop at the Flinders Centre for Innovation in Cancer Survivorship Conference, 3 Feb 2013

Cancer Voices SA led an interactive workshop at the Survivorship ConferenceSurvivorship Conference, where Ashleigh Moore and Julie Marker presented the Canadian ‘GoPublic Cancer Conversations’ methodology we have used and adapted for discussing cancer survivorship issues and perspectives. Feedback from our 16 ‘survivor led’ conversations, including 3 in Australian Aboriginal communities, agreed that ‘cancer conversations’ are an effective way to engage people, the conversations seem an important delivery channel for awareness, education and action, and participants were encouraged to talk to others about their experience.

The abstract and slides from this presentation are available online.

 

C2CC, LAF, UICC logos

 

“It is time to change the experiences and expectations of cancer.

It is time to marshal our collective will, our passion, our outrage, our insistence and our voices”. - Lance Armstrong –

 

 

The Campaign to Control CancerCampaign to Control Cancer, the Lance Armstrong FoundationLance Armstrong Foundation and the International Union Against CancerInternational Union Against Cancer have joined forces in an unprecedented collaboration called Go PublicGo Public; a call for action to engage in Community Conversations on Cancer Control.

Community Conversations are volunteer-led events of 6 to 50 people, where participants share their thoughts, experiences and ideas about cancer and cancer control. A toolkit of resources have been provided to assist volunteers to host a Cancer Conversation.

A final report of Cancer Conversations from around the world was released in September 09 at a Global Leadership Forum for Cancer Control, in Canada. This Forum is an international conference that will share best practices in public engagement for cancer control, including the ideas gleaned from Cancer Conversations submitted around the world.

Cancer Conversations proved to be 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”.  “It is also clear from the Conversations that personal experience – either direct or indirect- is the key driver of engagement and action”.

Cancer Voices SA Community Conversations
Cancer Voices SA noted that many of the issues raised in our Cancer Conversations are not new, and have been documented time and time again in reports and journal articles.  Recommendations to address these issues have not been implemented.

If we all contribute, even in a small way, hopefully the aims of the Global Cancer Initiative can be achieved in our lifetimes:

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

See a brief summary of the Campaign to Control Cancer.

“Cancer doesn’t affect just one person, it affects the entire community around them”. - Lance Armstrong.

See snapshots from some of the Cancer Conversations…

  • Members of Cancer Voices SA meet and talk.
  • The Fleurieu Cancer Network and Onkaparinga Prostate Cancer Support Group met together and were joined by the state Minister for Health, Hon John Hill
  • Cancer Voices cycling team members hold a Cancer Conversation after a training ride.

Fleurieu Cancer Network Fleurieu Cancer Network_C2CC CVSA cyclists C2CC

Some comments from participants:

  • “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.
  • 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.
  • Husband and wife - we heard the same words from the surgeon, but had vastly different interpretations of his meaning!
  • “Cancer is a great learning experience”.
  • 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 [email protected] if you wish to be involved in a future group Cancer Conversation.

Contact

Cancer Voices South Australia

 

Ph.  0431 691 956 

 

PO Box 588, Kensington Park SA 5068