This World Ovarian Cancer Day (and Mother's Day) a new podcast is making a powerful call for advocacy, awareness, and change to help women #LiveBetterLiveLonger.
'On The Down Low' creative team (from left): Nyasha Nyakuengama, Helen Gooden and Alison Dance.
Produced by ANZGOG, the six-part series titled ‘On The Down Low - speaking up about ovarian cancer’ features raw and inspiring stories from nine ovarian cancer advocates and covers topics including symptoms and diagnosis, treatment, personal challenges, hope, and advocacy.
"If you have ovaries, if you know someone who has ovaries, listen."
In celebration of the launch, WomenCan speaks with two of the podcast's key creators; host, Alison (Ali) Dance and podcast producer, Nyasha (Nash) Nyakuengama who give us the down low on 'On The Down Low'.
WOMENCAN: Congratulations on the launch of ‘On The Down Low’, a podcast speaking up about ovarian cancer. The podcast was a collaboration of work by quite a few volunteers determined to open more conversations about ovarian cancer and the people it affects. Why did you volunteer so much of your own time to work on and host the podcast?
ALISON DANCE: It’s my utter privilege to host such an important conversation, which also so personal for my family. This was a mammoth project spanning six months and countless volunteer hours. My mum, Pauline, is a guest on this podcast and was diagnosed with ovarian cancer in 2019. Since then, I have advocated for awareness, fair funding and research, especially through journalism. It’s gut-wrenching to hear women feel they have no hope because they got the ‘wrong’ cancer. I was a Mother’s Day baby, so to have this day underpin a project with my mum, Pauline, is really special. I’m honoured to do my small part in helping change the story, so women can live better and live longer. I’m grateful to ANZGOG for creating a platform to help us keep inspirational women in our lives.
NYASHA NYAKUENGAMA: In 2020, a close family friend passed away from ovarian cancer. At the end of 2021, I was looking for a project where I could 'give back' and do some good with the skills I've developed as a content producer. Ali approached me about the project and we got started!
WOMENCAN: A question for Alison, amongst the 9 guests you speak to on the show was your mum and survivor of ovarian cancer, Pauline. Was there anything interesting or shocking that you learned about your mum that you didn’t know before?
ALISON DANCE: Mum balances keeping my siblings and I informed while protecting us amazingly. I learnt she’d experienced more side effects from chemo than she let on but mostly, that her tenacity is still firmly in place. Being ‘On the down low’, I heard intimate details on relationships… always an awkward conversation but especially when it’s your parents! We’re leading by example on how open and honest conversations are important to reduce stigma and raise awareness of ovarian cancer.
Host, Alison Dance with her mother, Pauline who is also featured in the podcast.
WOMENCAN: Who are some of the other guests we hear stories from?
ALISON DANCE: I’m impossibly grateful to our nine guests for being so fierce, insightful and proactive. Our guests represent three states, Western Australia, New South Wales and Victoria, and one territory, the Australian Capital Territory. They also reflect Australia’s diverse community, with guests immigrating from New Zealand, Scotland and Singapore. Our women were diagnosed at aged 13 to 64 and reflect different experiences such as working women, mothers, single and married women, retirees, and students. I’m really proud to have my mum, Pauline, representing regional and rural women, who face additional challenges to access healthcare. We also have a husband, a carer, who shares valuable insight and advice from another perspective. These are nine of so many stories, which all deserve to be shared. We’re grateful to everyone who offered their time and I’d love to share more stories with a second season.
"We’ve burnt bras, I’m ready to burn undies!"
WOMENCAN: And what are some of the mind-blowing things you learned from these guests?
ALISON DANCE: Our women are confronted with their mortality and choose to look to our future; their resilience is inspiring but their determination to create change is magnificent. It’s mind-blowing to hear how a woman’s chances can go from imminent death to disease-free in half an hour, how a couple navigates end-of-life planning and how shockingly overlooked this cancer can be from diagnosis to funding. Our guests teach us how to advocate for ourselves but also to turn our view outwards and take steps to create a better society for everyone. They offer a stronger understanding of the symptoms and side effects of ovarian cancer. They raise awareness of options and resources like tumour testing. And importantly, they highlight a community of support is there… and so is hope.
NYASHA NYAKUENGAMA: For me, listening back to the interviews dozens of times, the most striking thing is the patterns that emerge across everyone's experience. The importance of exercise, sleep, strong relationships and a positive attitude can not be understated.
WOMENCAN: Who is this podcast for?
ALISON DANCE: If you have ovaries, if you know someone who has ovaries, listen. We need to improve how we approach women’s health as a society – listening is a great place to start. This knowledge can save your life. Many listeners will already be on the ovarian cancer journey with us, we hear you too. There’s lots of tips worth tuning in for.
NYASHA NYAKUENGAMA: 'On The Down Low' has been crafted for people affected by ovarian cancer. To honour their experience and hold space for their stories. That said, anyone can listen and come away with a new understanding of what the patient experience is like.
WOMENCAN: What was the best part about working on the podcast?
ALISON DANCE: My family is directly affected by ovarian cancer, so this is a challenging and emotive project. I’ve gained a community and exceptional advice for our own journey. The best part of working on this project is how beautifully everyone let their guard down to have a raw and honest conversation about gynae cancer. I’m so proud of every single guest, who absolutely gave this opportunity their all in the pursuit of better outcomes for women. I’m impossibly grateful to our stellar volunteer producer, Nyasha, who stitched sound together superbly to create the polished podcast our guests deserve. We’ve had hilarious moments like recording voiceovers from a doona fort, photobombing cats and plenty of gynae puns!
NYASHA NYAKUENGAMA: I loved working with Ali - she's an amazing interviewer, advocate and storyteller. Witnessing her commitment to telling these stories with impact and integrity has been inspiring!
WOMENCAN: What level of impact do you hope the podcast will have?
ALISON DANCE: We’ve burnt bras, I’m ready to burn undies! I want this podcast to spark a revolution for women’s health including equal funding for cancers predominantly affecting females. We deserve a fair go. No-one knows where they sit in the statistics or what advancements are around the corner. After riding the highs and lows of an ovarian cancer journey with our guests over six episodes, you’ll come to think of them as friends. Now, take a very broad brush and apply current statistics to our podcast; half of the women you’re listening to won’t be here in five years. That is devastating. That needs to change. Let’s start a loud, wide-reaching conversation about gynae cancer awareness, fair funding and research. I hope these stories stir listeners to contact big pharma and politicians demanding better, to support fundraisers for gynae cancer research and to have open conversations around women’s health. I’m thrilled to see my mum be embraced by an ovarian cancer community, highlighting regional and rural women won’t be left behind. Ultimately, I hope ovarian cancer means nothing to you until now. But if it does – this podcast is a reminder you’re not alone, we can create change and there is hope.
NYASHA NYAKUENGAMA: I hope that the podcast raises awareness of the early signs and symptoms among medical professionals. I hope that it generates empathy within listeners for the experience that patients have to go through. I hope that this podcast helps to remove any shame or stigma felt by people with ovarian cancer.
‘On the Down Low’ is available on the ANZGOG website https://www.anzgog.org.au/on-the-down-low/ and wherever you access your podcasts, including:
Apple - https://apple.co/3Fp1z42
Spotify - https://spoti.fi/3LP75Pz
Google - https://bit.ly/3MXPyFh