Roni, 47, lives in Western Sydney and was 40 when she was diagnosed with stage 3 ER/PR- HER2+ breast cancer, after discovering a lump when doing her regular self-check in the shower. Roni had chemotherapy, radiotherapy and a mastectomy, with a delayed implant-based reconstruction 18 months later. Roni had a genetic risk assessment, but genetic testing wasn’t recommended.
“I was quite reserved about who I shared my diagnosis with initially. So only very close friends and a handful of people at work knew. I never posted anything on any socials whilst I was on active treatment. I was a late comer to the whole social media until afterwards”.
“I felt there just wasn’t enough stories of people of my age. When I was looking for positive stories to hang on to, everything I looked up was around older age groups. That felt really isolating to me. Especially once you finish active treatment, because that’s when you start feeling a bit wobbly about everything. So, I started sharing a little bit on Facebook and then Instagram. It was because where I had my chemo treatment the nurses would recommend that other patients call me. And I thought that there’s got to be a benefit in sharing because we all have similar feelings and frustrations, and there’s no one really to connect with. So that’s what drove me to start sharing my story”.
Roni organised a photographic exhibition featuring herself and other women that raised more than $6,000 for the Cancer Council. “COVID put a stop to the exhibition a number of times. But the idea was really to share more stories and show people that there’s a lot of positivity around breast cancer. It was inclusive of all women, all different types of breast cancer at all different stages after diagnosis. I wanted to give people hope, because knowing that people live through this and then go on to live a normal life was really important to me”.
“That was one thing I wanted to do with the exhibition. The second thing was that I wanted it to be more reflective of Western Sydney. I do find out here that it’s really hard to get that visible support. The medical system is under pressure. The demand is so huge that it’s really easy for people to get lost in the system. And I myself felt lost. I never really had a breast care nurse – nothing – so you do sort of navigate and fumble your way through. All of the women in the exhibition were Western Sydney women, bar one, and I really wanted to showcase that, it was really important”. For Roni it is also important that the disparities in visibility are presented alongside disparities in access to care: “They call it the ‘Sydney Harbour Divide’. Over the harbour you get a certain level of care, and then over this side not so much”. She adds, “Our stories need to keep getting told, regardless of the geographical differences, it needs to be constantly shared as it’s still happening too much and not enough is being done across the board”.
“If I look back, I’m surprised that I am now sharing, especially in the exhibition where you can see everything photographed. I think we perhaps don’t appreciate the reach and impact sharing can have. Six months ago, I started a new corporate role and it took a lot for me to consider should I share that side of me with my new colleagues. When I did share it, they said ‘yeah, we know, we’ve seen your website and socials and we think it’s great!’. I’d been worrying for weeks about saying anything. But I think I now feel that if it can help just one person, or if people think that they can get someone to call me and have a friendly chat, then people feel heard and that’s so important”.
“I’m really proud if I can provide people with the opportunity to feel heard and feel seen. I think that’s really special”.
“The medical people that I speak to say they want to hear from patients. They know the medical science, but they don’t know the patient side of things. So I think it empowers not just other patients, but medical professionals. And that’s no criticism of doctors and nurses, it’s just that they’re working in a really challenge and demanding environment. If we can help in any way to make that more patient-centric I think that’s really important, especially in areas like Western Sydney, where there’s extra challenges in people perhaps being able to feel ‘should I really voice my concern or voice my need?’
“One thing that I hope to do, whether it be help or support, is to give more of a voice to women in communities who aren’t as represented. I guess when we look on socials we do maybe see more Caucasian women. Illness affects everyone, so where we can help champion and support those that perhaps find it a little bit more challenging to find a voice, that’s something I would like to keep working towards”.
Read how Kate says sharing her story is like being part of a big ‘Karmatic Account’.
