Aboriginal and Torres Strait Islanders with breast cancer die five years earlier than non-Indigenous Australians. Cancer Australia says 17,586 Indigenous women and 144 men will be diagnosed with breast cancer in their lifetime. On average around two Aboriginal or Torres Strait Islander people are diagnosed with cancer every day.
In an effort to assist Australians diagnosed with breast cancer and improve their journey, Breast Cancer Network Australia (BCNA) has been empowering fighters and survivors of cancer for over 20 years.
BCNA’s Community Engagement Manager Jane Moore highlights the role of BCNA and its interconnected nature with breast cancer patients.
‘Breast Cancer Network provides support and resources for Australians affected by Breast Cancer through support, resources and advocacy. We have more than 120,000 members across Australia. Our membership includes survivors, their carers, family and friends, support groups and health professionals.’
BCNA has a special relationship with Aboriginal and Torres Strait Islander men and women who have been diagnosed with breast cancer, incorporating projects such as Culture is Healing to create a safe haven for patients and allowing them to connect to culture during their treatment process.
‘Our Culture is Healing projects have taken place so far in Victoria and Queensland. We are constantly learning from these projects and what is fundamental to their success is
that the decisions around the project are determined by the Aboriginal community. From the artwork that is created to the people and community organisations who are involved, the projects are unique to their local area. What we know from the projects is the women who have attended have told us that they felt empowered to share their stories with their community, that they felt like they were no longer alone.
‘Each program is completed as a creative workshop and then launched at a cancer centre or hospital so that when Aboriginal and Torres Strait Islander people visit those facilities for treatment, they see the artwork created by their community and we hope this helps them feel a sense of cultural safety while they are in care.’
Breast Cancer Network have numerous programs, groups, and events for Aboriginal and Torres Strait Islander people to create a sense of community and support for those affected by breast cancer. Moore explains the most recent activities that BCNA have held to bring everyone together around the nation.
‘In March 2017 at our National Summit, we held our first Aboriginal and Torres Strait Islander Think Tank. We invited Elders and young women from around Australia and in the end we had 48 women who came together to share with us the challenges they were facing in their community with regards to the poor health outcomes for Aboriginal and Torres Strait Islanders in Australia. Following the Think Tank we formed the Aboriginal and Torres Strait Islander Reference Group, which is made up of women across all states and territories, who come together both in person and over teleconference and provide us with key advice to better inform our strategies and action plan. The reference group also participate in the Culture is Healing projects as well as key events such as our conferences, forums and most recently they were the first to stand on the ground at the MCG with Aunty Di Kerr for Welcome to Country at the Field of Women 2018.’
Aunty Pamela Pedersen is a Yorta Yorta elder, avid BCNA supporter, and breast cancer survivor whose journey began in May 2016.
‘Prior to myself being diagnosed with breast cancer I always had my check up when I received a letter from Breast Screen.
On this particular occasion I went for my normal check up and then about three weeks later I received a letter requesting that I contact Breast Screen as they wanted to speak to me in relation to myself. I made an appointment and went to St. Vincent’s Hospital and had another mammogram and then it was noted that I had two lumps in my left breast. This diagnosis was in May 2016 just before Mother’s Day. I took part in the Mother’s Day event which I have done for the past 21 years without missing a year. I am very proud of this.
‘My thoughts in relation to this diagnosis was such a shock but I was told by the Victorian Health Service that I could get breast cancer because I was on hormone replacement tablets. Also at the time I was very busy helping to organise the first round of the Dreamtime game which was named in honour of my father Pastor Sir Doug Nicholls so I didn’t have time to be worried about myself having breast cancer which I also said to the Surgeon. “You will have to wait as I am busy organising with AFL the football game after dad”. To me this was priority and everything else was next. The Surgeon and his nurse were quite amazed that I had this attitude but I thought too bad, the footy game was more important than me. I said you will have to wait until the game is over because I am too busy to be worrying about an operation and that I would have it when I am ready.
‘The footy game was played and it was a great success and I felt very happy about the whole week leading up to this round. You see, throughout my whole journey I was very positive. I was running three times a week and swimming as well and training for the Gold Coast Half Marathon which was in July. Unfortunately, I did not take part in the Half Marathon as I had the operation and then started radiation therapy. I was too tired but still kept up my training.’
Aunty Pam’s strength and determination was an admired element of her, and did not go unnoticed by Breast Cancer Network.
‘Since my diagnosis I was approached by Amanda McMahon who was working with BCNA and she invited me to take part in the BCNA event which was being held on the MCG. This was a wonderful event and I met up with other cancer survivors who also took part in this event. We had huge big banners made with us appearing on them which I thought was quite amazing and it made me feel very emotional. We all wore beautiful pink singlets which had Aboriginal design and our clan names on them, mine being Yorta Yorta which is in the Shepparton/Echuca area.
‘After that I became involved in a few events which BCNA were having. Since my involvement with BCNA I have noticed the tremendous work which they do in helping breast cancer survivors and letting people know how to get help if needed.
‘If Amanda McMahon did not contact me I would not have been involved at all as I was just happy doing my own thing such as running, swimming and keeping myself healthy and working.’
Being involved in the Culture is Healing projects at BCNA and the making of the possum skin cloak was a treasured experience for Aunty Pam, which she described as being ‘a highlight’ during her journey.
‘I so enjoyed being with the other women and listening to their stories. Putting this together piece by piece was amazing and how then it was formed. The handprints of the women but unfortunately my handprint is not on it as yet which I feel very disappointed in – hopefully it will happen one day. To me it is very warm and so meaningful and the feeling which I have when I put it around me makes me feel good. This is my opinion about the cloak. The other women all have their own stories.’
The possum skin cloak is available at Peter MacCallum Centre for Aboriginal and Torres Strait Islander patients undergoing treatment, it is seen as a source of healing. Aunty Pam has also partnered with Peter Mac to assist her community and ensure they receive the upmost care.
‘At Peter Mac we are forming an advisory committee so that we can start talking about how we can help our Aboriginal people when they visit the centre. We must offer them excellent medical advice, give them information and a health pack with all the goodies which they need whilst they are having treatment at the Clinic.’
Aunty Pam has her own way of healing, and describes being close to home as her ‘medicine’. She has also set goals for herself to achieve in the coming years.
‘I have my culture and culture is everything to me to get me through at times. I am so glad that I have moved to Shepparton as this is my country and where my family come from. When I am home on country I just love it as this is my medicine. I go to Cummergagunja which is our Mission and I visit my dear cousin who is 94 years old. She has an amazing memory and tells us stories about old times and what they used to do. I like to visit the cemetery and pay my respects to mum and dad, my brother Ralph, and many of our relatives who are buried there.
‘To me this is my medicine and nothing can beat being home on country and having the feeling of your people when you are down on the river or visiting the cemetery on my own which I just love. I also like to visit my parents statue at Parliament Gardens next to Parliament House and share stories with them too of something which could have upset me or something exciting which has happened.
‘My goal now is to take part in the 2019 Gold Coast Half marathon and start swimming again.’
Amy and Stacy Parry are proud Gamilaraay women who were born and raised on Darkinjung country (Central Coast, NSW). The twin sisters completed BCNA’s Outback Adventure ‘to raise awareness of breast cancer in Aboriginal communities’.
The Parry’s talk about their experiences with breast cancer in the family and how this created reason to select and complete the Larapinta Trail.
‘In 2015 our mother was diagnosed with stage 4 breast cancer requiring a treatment plan of two surgeries, chemotherapy and radiation. Today she requires daily medication, ongoing check-ups, scans and is still overcoming the effects of cancer treatment. During this time two very special family members, our beautiful aunt and talented cousin were also diagnosed with cancer. They both fought hard battles but sadly passed.
‘Prior to our mum and families diagnosis we were unaware of overall cancer statistics within our Aboriginal communities. We didn’t realise breast cancer was the most common cancer diagnosed within Aboriginal and Torres Strait Islander women and that it is the second leading cause of cancer death in our women (after lung cancer). There is endless promotion of heart disease and diabetes within our communities but limited information on cancer and the importance of early detection. My mother, sister and I want to be drivers in getting this extremely important message out to communities.
‘We specifically selected the Outback Adventure, Larapinta trek due to BCNA’s commitment to better supporting Aboriginal and Torres Strait Islander people affected by cancer. Our participation in this adventure helps to ensure Aboriginal people will have access to information and support to help reduce these disparities in outcomes.
‘The Larapinta trek is on the land of the Aranda people. Aboriginal people and communities within Australia are diverse and our languages, culture, and stories reflect that. Being on Aranda country, reinforced how different Aboriginal people and communities are and how important it is that Australians understand our uniqueness. We would like to extend a huge thank you to the Aranda people for allowing us to be visitors on your land, welcoming us onto country and sharing your stories.’
The sisters see the experience as a great accomplishment that was an amazing, life changing and humbling experience. The pair have received an overwhelming support during their journey and Amy explains the impact of their story when shared on media platforms.
‘We have shared our story to numerous people and communities and to date have raised $11,182. We have appreciated the support of our Darkinjung community. We have been asked to share our story and message with BCNA and D*Scribe and these platforms allow us to reach communities beyond our local community to increase awareness of breast cancer and its impact within Aboriginal communities.’
The sisters were called ‘Team Ngamu’, a word drawn from their community’s language and saw this opportunity as a great way to represent Gamilaraay.
‘In Gamilaraay language Ngamu means breasts. This word shows the strength and resilience of our people – that in a time when Aboriginal people were not encouraged to speak language and if they did there were consequences, some language still got through and Ngamu is one. It warms our heart and makes us extremely proud of our old fullas and our mob. We also thought it was appropriate given the NSW Aboriginal Languages Act passed late last year which is the first legislation in Australia to acknowledge the significance of First languages. So given the walk was for breast cancer awareness we thought the name was perfect.’
Currently, there is nothing on the Central Coast to support Aboriginal communities who have been diagnosed. Amy and Stacy’s participation in supporting BCNA has granted them the opportunity to deliver a Culture is Healing project in their community.
‘We will be working with Eleanor Duncan Aboriginal Health Centre and Nunyara Aboriginal Health Unit, Central Coast Local Health District. We hope this project will continue to provide opportunities for a variety of projects or programs for our women who are diagnosed with breast cancer in the future.
‘We have always been proud Aboriginal women, who have been raised by and come from a proud strong line of Aboriginal people. They have taught us to be proud of who you are and where you come from and that we can do anything. When Mums diagnosis came and we did our research about breast cancer and Aboriginal women – it was hard to read. And we don’t want Aboriginal women reading these stats and giving up. We want Aboriginal women to know yes it is the most common diagnosed cancer but if you get it early and have access to good healthcare there is no reason why you cannot beat this disease – you are not alone.’
If you would like to support Team Ngamu and raise funds for BCNA, please donate here.