Cancer Voices South Australia

M. 0405 806 857
E. [email protected]
W. www.cancervoicessa.org.au

Cancer Voices SA
PO Box 588, Kensington Park SA 5068

Connecting with others affected by cancer may help by providing practical tips, ideas, information or inspiration.

(Cancer Voices SA is unable to comment on the quality of information provided at the sites listed, but recognises that many of our members seek contact with others in a similar situation.)

Cancer Connections is an online community with Forums and Blogs to link people with cancer, their carers and families. Cancer Council New South Wales.

Mensline Australia in partnership with Cancer Council Victoria, offers telephone support groups for men with prostate cancer and their carers. Prostate cancer is the most common cancer found in men. This new initiative is an opportunity for men with prostate cancer and their family to share experiences and coping strategies. Groups are available for:

• Men with advanced prostate cancer
• Younger men with prostate cancer
• Family and friends of someone with prostate cancer.

Ph: 1300 78 99 78 to talk to someone who understands; 24hrs per day/7days per week.

Aboriginal and Torres Strait Islander Mensline Australia - a dedicated service for indigenous men with relationship and family concerns. Ph: 1300 78 99 78 to talk to someone who understands; 24hrs per day/7days per week; All men, all relationships; Counselling, information and referral; Staffed by trained professionals; Confidential; Anonymous; Australia-wide; Cost of a local call   (excl.mobiles). Other services are listed in the Indigenous services directory.

Cancer Buddies Network is an online charity based support group designed to put you in touch with your cancer buddy so you can share the ups and downs, laughter and tears with someone who knows how it feels. You can chat 1-to-1 by private messaging onsite, or on a lively Forum. UK based; 'proving that cancer need never be a lonely experience'.

A Conversation About Cancer

Several members of the LIVESTRONG Staff discuss their experiences.

Living with Cancer - a series of short videos with practical tips and observations from cancer patients eg.

• Reaching out to people with Cancer,
• The little stuff 'meant so much'
• Denial over cancer diagnosis
• How friends helped her through cancer

Survivors Stories - LIVESTRONG

HealthAfterChemo US site. Listening and supporting your concerns through blogs, polls, and other interactions. Areas of emphasis:Chemo brain- understanding it and how to regain your capability, Recovering from chemotherapy and regaining your health and immunity.

Tell your cancer story - Cancer Council Victoria, Australia

Your stories - Cancer Research UK

Voices of Survivors - an organization devoted to exploring 'survivorship' and what that means to the individual.

The American Cancer Society Cancer Survivors Network has discussion boards and a chat room.

Cancer Voices SA Community NoticeBoard is a resource for members. Visit regularly to check out 'what's new, what's happening', opportunities to participate in research and health promotion activities.

Email 'Community NoticeBoard' requests to [email protected].

Please note - Cancer Voices SA retain the right to decide whether to 'post' message requests, and posting a message does not imply Cancer Voices SA support or endorsement of the message/ event/ activity.

Events and Activities (in South Australia)
- (In other states in Australia)
Newsletters and Resources
Cancer News Highlights

Events and Activities

• Give feedback on new Cancer Support Resources. The Cancer Council SA is looking for some help in reviewing some new cancer support resources. Consultation with people affected by cancer is an important part of the development process. If you would like to help we are holding a focus group on Thursday 9th September, At Cancer Council SA , 202 Greenhill Rd, Eastwood from 1.30pm to 4pm. If you would like to attend please call Cancer Council Helpline 13 11 20 to confirm your attendance.

• Free Public Lecture: The emotional cost of cancer: dealing with anxiety and depression. THE FLINDERS CENTRE FOR INNOVATION IN CANCER: Friday SEPTEMBER 10th 2010, 6 pm– 7.30 pm , FLINDERS UNIVERSITY HEALTH SCIENCES LECTURE COMPLEX corner of University Drive & Ring Road, Bedford Park, SA. Enquiries: Department of Oncology 8204 8997; [email protected]
  
  
• 2010 Cancer Survivorship Conference: Saturday 11 Sep, 9am-4.30pm, FLINDERS UNIVERSITY HEALTH SCIENCES LECTURE COMPLEX corner of University Drive & Ring Road, Bedford Park, SA. FLINDERS CENTRE FOR INNOVATION IN CANCER
  Full registration: $20; Survivor, student, unemployed: $10. For Bookings call the FMC Foundation on 08 8204 5216
  or [email protected] or www.fmcfoundation.com.au

• Research: The Experiences of Cancer Survivors (Stage 2). ***Hurry please, survey closes by 10 Sept***** This study aims to increase knowledge about people’s experiences of survival after treatment of cancer and understand the factors that potentially influence positive experiences in survival. Cancer survivors, over the age of 18, are invited to participate in this study by completing an online questionnaire at: http://www.psychology.adelaide.edu.au/expts/cancersurvivors.html For further information or to obtain a paper version call Tracy Connerty, University of Adelaide Psychology Student, on 0425 146 510 or by email on [email protected]

• Consumer rep position: STATEWIDE CLINICAL NETWORK – CANCER, LUNG CANCER PATHWAY WORKING PARTY (ONE POSITION) The aim of the group is to develop and commence implementation of a pathway for patients with lung cancer as guided by the pathway framework developed by the Optimising Cancer Care Committee of the Network and based on evidence-based best-practice and a strong consumer focus. Consumer involvement is expected to be a key element leading to successful lung cancer clinical pathway development and implementation. The frequency of meetings is at the discretion of the group, but may be up to once every two to three weeks. For more information please contact Sheila Brown on 08 8223 1374 or email [email protected].
  
  
• Men's Health Ambassador Speaker Program: Invite a speaker to present on Prostate Health and Continence Health to your Community Group, Orgnaisation, Sports Club, Industry....event. To find out more about the ambassador program or to request a an Ambassador to speak at your event - email  [email protected] or call 1800 206 700. Ian Fisk is a local ambassador speaker (and CVSA member) - email [email protected] 
  
  
• Research: A trial of effect of Meditation on Radiotherapy outcomes is being conducted at the Royal Adelaide Hospital Radiation Oncology Department. Breast and Prostate cancer patients starting radiotherapy from Aug 2010 are invited to participate. Contact Josef Nguyen, Radiotherapy Clinical Coordinator (Education), by email [email protected] or Ph: (+61) 08 8222 4000 pager 1152. Click here for more details.
  
  
• Research: BREAST CANCER SURVEY. A leading cancer organisation is undertaking survey research amongst
  (i) women and men diagnosed with breast cancer and
  (ii) people that have provided support to those diagnosed with breast cancer.
  If you have been diagnosed with breast cancer at any stage in the past or are currently undergoing treatment, or have provided support to a friend or family member diagnosed with the disease currently or in the past, then you will qualify for the study. We are seeking up to 500 members of the community in each group to participate.  The survey results will be used to improve support services.  To register your interest in participating you can either visit www.breastcancersurvey.com.au or call 1300 734 929.
  
  
• Research: Work and cancer? This study is exploring issues associated with returning to work after cancer. Ultimately, the aim of the research is for development of appropriate interventions to assist people affected by cancer return to work. In phase 1, the study will explore how cancer survivors describe their motivations and/or hesitations about returning to work; experiences associated with 'successful' return to work; experiences associated with problems returning to work. Participants with a history of cancer, aged between 24 and 55 years will be invited to participate in a focus group. For further information, please contact Georgie McKay at [email protected], or Vikki Knott at Cancer Council SA, [email protected]
  
  
• Research: Parents of a Child with Cancer: The role of Coping Styles and Hope on Quality of Life. This project aims to explore hope, coping styles and distress in relation to quality of life in parents of a child with cancer. Ultimately this will be an aid in the development of appropriate support and interventions for parents of children with cancer. A control group will be composed of parents who do not have a child with or recovering from cancer. 
  • Parent who has a child with or recovering from cancer (target group)
  • Parent who does NOT have a child with or recovering from cancer (control group)
    To find out more about the study, please contact Nastassja Maher, Nastassja.[email protected], or Dr Jaklin Eliot, Cancer Council Australia, [email protected], or Dr Vikki Knott, Cancer Council SA, [email protected], or visit: www.mcfoundation.com.au
  
  
• Research: Online survey re: Social needs of AYA cancer survivors; Body-image, and its relationship to self-esteem and quality of life. The study explores whether social support can mediate the effect of surviving cancer on body-image. Cancer survivors currently aged 18-29yrs are invited to participate in this online survey which takes approximately 30 minutes to complete.
  For more information contact Tanya Menadue, Psychology Honours Candidate by email [email protected], Mobile: 0408 664 164 or Dr Vikki Knott: [email protected].
  
  
• Research: A study is investigating what it is like for adults who have/had a parent with cancer. If you were over 18 when your parent was diagnosed, and your parent was diagnosed at least 12 months ago you may be eligible to join in. Find more details about the study here. Simply fill out the survey on-line OR contact Janelle on 0430 878 940 or [email protected] for a copy of the survey to be mailed to you. The study is open from 14 February until 30 May 2010, and is being conducted by Charles Sturt University.
  
  
• International Charter of Rights for Young People with Cancer Young adults have unique needs for services, information and support—but often can't find it. Doctors are under-informed on our biology and best practices for treatment. We barely show up on the clinical trial landscape. Hospitals and care centers are ill-equipped to support young adults' concerns about fertility, peer connections, dating, workplace discrimination and other issues unique to this age and stage of life. Sign to indicate your support for this.
  
  
• Cycle: Join the Cancer Voices SA cycling team to raise awareness of cancer and support for the volunteer work we do. Our cycling team will participate in many cycling events throughout 2010, and has regular training rides led by EFM-Stonyfell trainers who volunteer their time for us. Contact Ashleigh Moore, and check out our Cycling webpage.
  

• Trek: Footing it for Flinders. Go walking! Be one of 30 motivated individuals on a 5 day trek along the Great Ocean Road from 8-12 November 2010 to raise funds for ovarian and gynaecological cancer treatment, research and care through the Flinders Medical Centre Foundation. Details and registration form here. Contact Felishia Abbot by Ph: (08) 8204 5216, or email felishia.abbott@health.sa.gov.au. The Flinders Centre for Innovation in Cancer is a new Centre incorporating the LIVESTRONG Cancer Research Centre, and will be dedicated to cancer prevention and early intervention research, innovative cures and compassionate cancer care.
  

• Research: Chemotherapy induced nausea study. Cancer Council Australia, The University of Adelaide and Cancer Voices Australia are seeking participants for a new study into nausea that results from chemotherapy treatment. The research will be conducted by telephone interview and address questions relating to patients’ treatment and factors known to impact upon nausea and vomiting.
  People who have undergone chemotherapy treatment and have experienced nausea are invited to register for the study.
  For more information or to register your interest visit: www.cancer.org.au/nauseastudy.
  
  
• Research IBIS-II Breast Cancer Prevention Study.  The ANZ Breast Cancer Group is investigating whether breast cancer can be stopped from developing in women with an increased risk, using medication that has already proven effective in the treatment of hormone sensitive breast cancer. If you are interested in participating or would like further information about this study, please contact Katie Smith Ph: +61 (0) 2 4985 0134, Mob: 0412 353 534 Email: [email protected] Web: www.anzbctg.org
  

• Research: Want to help fix "chemo brain"? If you've had chemotherapy for an early stage cancer, and are experiencing problems with your memory or concentration, you may be interested in a new study for which volunteers are being sought.
  This study is being conducted around Australia. We are looking for cancer survivors aged 18 and above who are experiencing problems with their memory, concentration, reaction time and/or thinking (cognition) after receiving chemotherapy for an early stage cancer. Chemotherapy needs to have been completed within the last 6 - 60 months. All study participants will take part in a telephone session where they will be given skills to help manage their cognitive difficulties. In addition, half of the participants will receive the computer programme to be practised at home for 4x forty minute sessions per week for 15 weeks (i.e. 40 hours).
  If you are interested in receiving further information on this study, please contact:Trial free call number: 1800 778 167
  Dr Victoria Bray: 02 9767 5132 or Ms Haryana Dhillon: 02 9036 5392

• "Fighting cancer with the heart as well as with the head" Cancer Council Victoria Arts Awards were established as a means for people touched by cancer to communicate their experiences in a creative way. The Arts Awards is an annual event and entries are open in seven categories: Visual Art  Short Story   Poetry   Indigenous Visual Art   Film  Youth & Children's Art   Youth & Children's Writing.

• Consultation: SA Health is seeking the public’s feedback on the design of the new Royal Adelaide Hospital.
  Visit www.newrah.sa.gov.au/project/demonstration-room.htm for a glimpse of what a patient room and ensuite could look like at the new hospital. Email your feedback/comments to [email protected].
  
  

Events interstate

Cancer News Highlights

Newly released Newsletters or Resources that may be of interest

• 'Cancer- What Now?' (DVD), a collaboration between Graeme Goodings (GoodInnings Media) and Cancer Council SA, that includes information and experiences from health professionals and cancer survivors to assist you in making informed choices about your cancer experience. The DVD is available for downloading in full, or select and download any of the 10 chapters on different topics.
  Chapter 1 - You have been diagnosed with cancer, what now?
  Chapter 2 - How do you tell people who are important to you?
  Chapter 3 - Learning about cancer.
  Chapter 4 - Choosing quality health care.
  Chapter 5 - Treatment options.
  

• Check if you are using 'safe' types of plastic for water bottles and food containers: http://bit.ly/dbQAGj and
  http://trusted.md/blog/vreni_gurd/2007/03/29/plastic_water_bottles#axzz0u6TuXAjE

• Country Health South Australia (CHSA) Patient Journey Health Information Resources report that many people from the country travel to Adelaide for inpatient treatment at metropolitan hospitals. To improve the Patient Journey , and increase the knowledge of services available, two Health Information Resources have been produced:
   
  ·  ‘Before You Travel’ – a checklist for people from country SA preparing to travel for medical treatment, including suggested questions to ask their referring GP / doctor; and
  ·  ‘Contacts for when you travel to access health services’ – a directory of commonly required contacts for people from country SA travelling regionally or to metropolitan Adelaide for medical treatment.
  The CHSA Patient Journey Health Information Resources aim to:
  · Reduce the number of people from country SA travelling to metropolitan Adelaide for health services by providing a prompt to discuss local / regional options, particularly when journey is GP initiated;
  · Provide practical support in a clear format to people from country SA who require access to health services in metropolitan Adelaide.
  Arrangements are being made to make this literature available on the Patient Journey Initiative page on the CHSA Web-site (July 2010)
  
  
• Exercise guidelines for cancer survivors (American College of Sports Medicine Roundtable, Jun 2010)
  
  
• Delivering Better Cancer Care - document outlining what the government is doing to tackle cancer. (7 April 2010). See also the National Health and Hospitals Network report.
  
  
• The Australian Medical Oncologists Workforce Study 2009. Report released March 2010. 'A Workforce Plan is needed' says the Medical Oncology Group of Australia. A newspaper report reveals that only 19% of cancer patients receive chemotherapy, yet it is estimated that roughly 50% would benefit from chemotherapy.
  
  
• Health Consumers Alliance of South Australia published “Nothing about Us without Us: Putting Consumers at the Heart of our Healthcare System” (15 March 2010)
  
  
• Ovarian cancer in Australia overview, 2010 report provides a comprehensive picture of ovarian cancer in Australia including how ovarian cancer rates differ by age, Indigenous status, country of birth, socioeconomic status and geographical area. Although the prognosis for women diagnosed with ovarian cancer was relatively poor compared with a number of other cancers, the prognosis has improved over time. (March 2010)
  
  
• A National Health and Hospitals Network for Australia's Future - document outlining the need and proposal for the current health reform which includes the Commonwealth taking major funding responsibility(60%) for public hospitals. (March 2010)
  
  
• Private Patients' Hospital Charter by the Dept of Health and Ageing, is a guide to what it means to be a private patient in a public hospital, a private hospital or a day hospital facility.
  
  
• National Palliative Care Strategy - Phase 1 Communio Report, National Palliative Care Strategy Update, dated 4Feb2010
  
  
• Understanding Your Rights This useful booklet by the Cancer Council NSW sets out what patients can reasonably expect, both from health services and themselves as they undertake the cancer journey. (Dec 09) A copy can be ordered by ringing the Cancer Helpline in any state around Australia ph:131120.
  
  
• Cancer Council SA - 2010 state election priorities
  
  
• Breast cancer reports - released during Breast Cancer Awareness Month of October
  • Breast cancer in Australia: an overview, 2009 (AIHW and NBOCC), Media Release highlighting key findings and personal cancer connection with this report (newspaper article).
  • Breast cancer risk factors: a review of the evidence (NBOCC), and NBOCC news report.
    
    
• Cancer Clinical Network - October 09 newsletter
  

• CareSearch resources released during Carers Week 18-24 October 09
  End of Life Brochure Series: seven new brochures look at some of the specific issues for Patients and Families.
  • Why information matters
  • Communication
  • Living with a terminal illness
  • How to care
  • Groups with specific needs
  • At the end
  • Bereavement, grief and loss

  CareSearch DVDs A new set of short DVDs introduce some of the important issues that need to be thought about at the end of life.
  Print resources This new webpage brings together all the helpful materials for patients and carers that can be printed making it easy to download, save or print off information to share.

  
  

(Cancer Voices SA members may have information they want to share via the Community NoticeBoard which is not always consistent* with our focus on cancer systems advocacy, awareness, information and involvement.

* see Cancer Voices fundraising policy and position on individual vs system advocacy)

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 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.

There were 100,514 new cases of cancer diagnosed in Australia in 2005 . The five most common cancers were prostate cancer (16,349 cases), colorectal cancer (13,076), breast cancer (12,265), melanoma of the skin (10,684) and lung cancer (9,182). These five cancers accounted for over 61% of all diagnoses.

There were 100,514 new cases of cancer diagnosed in Australia in 2005 (the latest figures available). The five most common cancers were prostate cancer (16,349 cases), colorectal cancer (13,076), breast cancer (12,265), melanoma of the skin (10,684) and lung cancer (9,182). These five cancers accounted for over 61% of all diagnoses.

The inaugural two-day course in Cancer Advocacy Training in South Australia was held on 13-14 March 2009, in a collaboration between the Cancer Council SA and Cancer Voices SA.  The course was adapted from similar training conducted in New South Wales (NSW) for several years, with expert facilitation by Carolyn Grenville from the Public Interest Advocacy Centre.  (Note: PIAC is a Registered Training Organisation under the Australian Quality Training Framework.)

The Advocacy Training covered

• Consumer advocacy and representation
• Understanding cancer policy; government and other decision-making processes
• Understanding the health system, state and federal roles
• Finding and using information
• Effective advocacy campaigns: lobbying, negotiating, media.

There was an interesting and interactive mixture of presentations and group work.

'Graduates' receive a Cancer Voices SA polo shirt on completion of the course.

Cancer Voices SA wish to extend special thanks to Dr Vikki Knott from Cancer Council SA for much hard work coordinating, helping prepare and adapt training material, excellent support throughout the development and training days and also presenting the ‘Finding and using information’ session. 

The next Cancer Advocacy Training is yet to be determined please email [email protected] to register your interest.

Some snapshots from the course in March 09.

There are two types of advocacy:

1. System advocacy focuses on influencing and changing the system so that people with cancer as a whole will benefit. System advocacy includes consumer representation on committees, working parties and advisory groups, policy and law reform activities, media releases, publications and cancer awareness training.

2. Individual advocacy focuses on the individual and assists families to resolve issues which are relevant to them or their family.

(Source: Cancer Voices Qld "What is advocacy" )

What does System Advocacy involve?

• Advocacy is speaking up, drawing a community’s attention to an important issue, and directing decision-makers toward a solution.
• Advocacy is working with other people and organisations to make a difference.
• Advocacy recognises the experience of the individual can indicate a problem with the system and help to bring about system change.
• Effective advocacy requires a range of skills including assertiveness, the ability to manage change, communication skills, media skills, team building, persistence, patience and a thick skin!

(Source: Research Matters Newsletter of The South Australian Community Health Research Unit, Oct 2007)

Cancer Voices SA is the independent, incorporated, volunteer consumer organisation representing South Australians whose lives have been affected by cancer. 

Cancer Voices SA is state-wide and through Cancer Voices Australia contribute to a national network of Cancer Voices.

Cancer Voices South Australia was officially launched by the Minister for Health, the Honourable John Hill on 13 th November 2007. Minister Hill spoke of the importance of consumers being involved in their health care through groups such as Cancer Voices and the impact of cancer on everyone.

Brenda Wilson, CEO of The Cancer Council SA, gave support to Cancer Voices SA and outlined important links to current initiatives including the South Australian Cancer Clinical Networks and the State Cancer Control Plan.

The message from Ashleigh Moore, Cancer Voices Executive, at the Launch was

"health services and associated organisations must shift their thinking to ‘really’ listen to consumers and their invaluable ‘lived experience’ – the experience that not everyone can imagine or ever know until they have walked in our shoes”. To consumers, his message was not be afraid and "raise your voice" – if you are unable to do so directly then approach a fellow member of Cancer Voices SA and we will carry the baton and raise our voice on your behalf."