OCRF x AIMEE-CHERIE INTIMATES
Ovarian cancer is the most lethal gynaecological disease for women in Australia.
There’s no early detection test still which means most women will be diagnosed at a late stage, giving them only a 29% chance of surviving part 5 years.
A year ago, when we launched this campaign for the first time I found it incredibly hard to share those statistics.
That’s because ovarian research and funding is deeply personal and important to me.
11 months ago, we lost our incredible mum to ovarian cancer after a 2.5 year fight. Knowing those statistics for us was knowing a possible and very unfortunate reality for our beautiful mum.
My brother and I have been so lucky to be included in the OCRF community as ambassadors since mums passing. It’s a community you never wish to be a part of, but now we’re here we know mum would be proud of us for sharing ours and her story. That’ll hopefully one day be a part of fundraising that helps change the outcome of another family’s story.
From the 1st of September 2021 we have been donating to the OCRF from every order we’ve so generously received. When I first made the decision to do so it was to take some control back of what felt like an incredibly unstable story that was unfolding for our family. It felt like a small way I could make my contribution to the researchers that were going to find a test and cure for this thing that had my mum. Today, I make the donation on behalf of you all in honour of my beautiful mum Lisa.
While I hesitated for almost a year on whether to share mums’ story, I’ve landed back on the this thought. When mum was diagnosed we were so naïve to what was to come. If we didn’t understand anything about the story around ovarian cancer, the greater population very likely didn’t either. No one can go back and change how our story ended, but we can advocate for more funding for this disease and help change the story for someone else one day. Maybe that means for me. For my future daughters. Or for you. If sharing with you the beautiful, painful fight our mum put up prompts you to get a second opinion on symptoms you’ve experienced or generously give time or recourses to the OCRF, I know without hesitation that is something our mum would’ve wanted.
I still don’t quite know yet of how to eloquently write of my graceful mothers’ story perfectly. To translate how she was that centre warm glow of every room she was in, that everyone wanted to be close to and have a part of. While accurately telling of what a time lived with ovarian cancer is really like. But I’ve concluded that perhaps it doesn’t need to be perfect for now. She was the most perfect person to me, to us, and this is our story.
Earlier last year, just a few weeks in, my brother and I got the phone call we thought would still be a number of years away. Mum had been diagnosed with stage 3 advanced ovarian cancer in Perth, late 2019. That was right before the pandemic hit. Mum was one of 1800 women to be diagnosed that year. The stats weren’t on our side, but that didn’t matter to us. She had a 29% chance of surviving past 5 years and so that’s exactly what we would do. Get her to 5 years.
The phone call we got just 2 and a half years in though was that we needed to get home to Perth immediately. Mum had been rushed home from a holiday on Rottnest island as they’d discovered she had a pulmonary embolism and was finding it increasingly difficult to breathe on her own without oxygen. I still can’t describe the exact wave that came over me with this phone call. The confusion, fear and panic, and mostly the prolific urge to get my brother and I home to her as soon as possible.
Mums journey up and to that point had not always been straight forward, and mum’s enthusiasm to just beat this beast, as we called it in our family probably made us all believe she wouldn’t be part of that scary 29% statistic.
Mums diagnosis in the beginning was almost by chance and very nearly missed like most women diagnosed with ovarian cancer. There was no test (and still isn’t) that she could’ve taken. She’d been having lower back pain for a while, some other menopausal symptoms and lost a bit of weight, but it was nothing that would’ve seriously made her consider the worst.
Until one day she ended up in the ED. A week later, full of scans and a blood test, the doctors presumed that the cause of the severe discomfort she was experiencing was ovarian cancer. Breast cancer was familiar to us in our family but we were naïve to ovarian cancer. We had no idea treatment options had barely changed since Mum had given birth to me almost 30 years prior.
Mums first 3 courses of chemo were right before Christmas. They took about 14 hours each, as she was also part of a trial for immunotherapy. Which is like an add on drug to chemo to target certain cells in the body and aid in treatment.
Christmas eve 2019 Mums thick, shiny hair begun falling out in lumps. I remember seeing the discomfort on her face as another aspect of this journey stepped in. It suddenly started feeling very real, just how very sick my godly mother was, and was still going to get. And just as my fear started sinking through my body, mum made it all feel safe and controllable again. She got the clippers out and my brother and I shaved her head in the kitchen at 10pm Christmas eve in our pyjamas together. She was the most glorious woman down at the beach the next morning for our annual traditional Christmas morning swim, wrapping her sarong around her bald head after her mermaid dip in the sea.
Right before all the lockdowns hit in Melbourne, Mitch and I were able to get back for mums debulking surgery in February of 2020. It’s a common surgery for women with ovarian cancer. And it does mostly what it suggests- debulks. Out came all of mums reproductive system, and her bowel and other organs were scraped for any hint of cancer. Mum was in intensive care for the night, and hospital for a week or two afterwards. Her scar ran from her breast bone right to below her belly button. I can’t remember the exact number of staples now, it was in the 70s or 80s, but I do remember being with Mum at home in her room as the nurse came over to pull out every single one of them. That scar told a very big story for mum, and she wore it proudly at the beach every morning for her swim.
Shortly after the surgery, we were informed that the immunotherapy component hadn’t been successful so far, and she was taken off the trial. While disappointed a potential life saver wasn’t working for her, mum was so grateful to have been involved in research that will hopefully help someone else’s ovarian cancer journey.
A further three rounds of chemo followed the surgery, and after this, the news we wanted to hear- no further treatment required, at least for the time being. It was a relief, because by now the Victorian covid lockdowns had well and truly kicked in and we were stuck in Melbourne.
The reprieve was short lived. Mum’s cancer returned just six months later. It was a routine check-up that produced a rising CA125 tumour marker result and raised the alarm. After this recurrence mum endured various treatments- chemo combos, drug trials and the like, and many, many emergencies trips to the ED with bowel obstructions, a super common condition for women with ovarian cancer. Very quickly Mum was running out of chemo options though. The cancer, just like it is for so many other women like Mum, was becoming resistant to the drugs on the market for them. She needed new treatment options, but there just wasn’t any left.
Mum was so fiercely determined though, that ovarian cancer wasn’t going to defeat her. Mum did an ocean swim every single morning. And when chemo made her too weak to swim in the ocean, she walked the beach for kms with her best mate. They’d send us a photo from her walk or swim every day while we were still stuck in Melbourne, unable to get to her.
4 months before she died though she even out did herself. She rode 200km in the MACA cancer ride for research with her work mates. She raised over $15k alone and was the only participant that year to be a current cancer patient to be riding. She had never rode a bike before in her life. She was in between chemo cycles. Still taking copious amounts of drugs daily. She joked with her fellow riders that she snuck an extra pre chemo steroid before the ride to help her along. That’s what ovarian cancer can look like though, a seemingly healthy woman, checking off her chemo dates being able to somewhat continue a normal life.
Supporting mum through this from the other side of the country was beyond difficult. Our facetimes, dancing along to Fleetwood mac together and checking in on mum mid chemo sesh gave us an optimism that maybe she was going to beat this. In hindsight that was mum protecting us from the reality of ovarian cancer.
And that’s where we get to that phone call I mentioned earlier. WA last minute pulled the plug and didn’t open their borders to us Victorians to be able to spend Christmas together, and the original early year opening date got pushed back too. But regardless, we got that phone call and our family had realised they needed to get us back home immediately somehow. We were home within 5 days finally being allowed in on compassionate grounds, quarantining for a week, and on day 7 Mum came to pick us up. The shock of seeing her nearly knocked me off my feet. My big strong Mama was frail and carrying an oxygen machine beside her. But despite that she practically ran to us, and after nearly 2 years apart embraced us again.
From that moment we had 6 glorious weeks together with our mum. They were of course not all glorious but we were with her again for this. We had emergency trips to the ED, ambulances were called, and nurses visited daily by the end. Mitch and I, along with our aunties and Baba, learnt how to administer nearly every drug under the sun to help manage pain. Sometimes we were getting up through the night, every 4 hours to give her more. Mum was determined in the end to stay at home with us though. She was even telling us, that in a week or two, she thought she’d be strong enough to be taken down to the beach, to swim in the ocean again. Her oncologist, and oncologist nurse, couldn’t quite comprehend her optimism for a miracle, as they knew they had exhausted every option by now. And it had only been 2 and a half years since her diagnosis. There were no more treatments left to try, no trials to be a part of. Nothing more they knew yet, of how to cure ovarian cancer.
Mitch and I slept on Mums bedroom floor every night for the last 2 weeks, wanting to soak up every last bit of our mum, never letting her be alone. We’d take turns through the night, one on the floor, one in the bed with her. Mum died shortly before her 57th birthday and mothers day, at home with Mitch and I, and all our family in the house together with her.
It’s still now, and maybe more so than before, difficult to comprehend just how far behind in detection and treatment ovarian cancer is, especially when compared to other cancers. We have come to learn that with an early detection test our mum would likely have had her cancer diagnosed in the early stages and her chance of survival would have been more than 90%. Not 29%. We would’ve more than likely got pass that 5-year mark. But with no early detection test and such vague symptoms, picking it up early is so unlikely.
Our hope is for more funding, for further research development and opportunities for our brilliant, brilliant scientists and researchers. The ones our fundraising goes to. It would be nice to think that sons and daughters receiving news of their mums ovarian cancer diagnosis in the future really can shrug it off, because survivability sits alongside those other cancers in the 90th percentile. That one day, me, my future daughters, and you will have over a 90% chance to beat this disease if ever faced with it.