health

"Staring death in the face means I have lost friends": Caitlin has stage 4 ovarian cancer.

Ovaries. We all come from them, so there's no shame in talking about them. 

These tiny organs that helped engineer the miracle of my daughters' birth, are also the cradle of the disease that could take me from them. 

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Video via Mamamia.

You may have heard of ovarian cancer, the 'silent killer'. I want to change the stigma associated with this disease and make it silent no longer.

I have a rare and nasty variant of the deadliest cancer on the women’s menu; stage 4, clear cell, ovarian cancer. 

I was diagnosed four years ago, aged 39. My children were tiny. Aside from bloating, fatigue and headaches, there were no clear warning signs. 

After surgery and chemo, I managed to remain cancer free for two-and-a-half years whilst on maintenance therapy. 

Soon after stopping treatment though, my cancer came back. It’s now in my liver and lymph nodes. 

My disease is incurable. I don’t ask how long I have because I don’t want to know.

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Don’t get me wrong, having stage 4 cancer has its perks! I no longer work a nine-to-five job, plus I get loads of attention, priority parking, and more Pilates and massages than you can imagine. 

On the outside, I’m essentially living like a Hemsworth.

On the inside, however, I feel like a dead woman walking.

I consistently have a foggy brain, chronic nerve pain which makes walking difficult, and digesting food is terrifying – all this thanks to the cocktail of very expensive drugs I'm on. 

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Which I guess makes me less Hemsworth, more Keith Richards. 

Unfortunately, chemo is not working anymore, which means that treatment options for me are running out pretty fast. 

Due to my rare pathology, I am not a candidate for the many clinical trials, nor the PBS listed drugs which could prolong my life. It's infuriating! 

So, I have had to offer up our family savings to buy life-saving drugs myself. It's keeping my disease relatively stable, but it costs $12,000 a month, and recent scans show that it may not work for much longer.

I have two beautiful daughters, Lilith, eight, and Willow, six. Neither of them can remember a time when they weren’t being stalked by this frightening, invisible monster that sometimes makes their mummy so sick she can’t move.

My beloved husband Kevin has had to take a step back from the job he loves as an actor to care for me, to lift me when I can’t stand, to comfort me when I wake up screaming in the night, to nurse my grief for what’s lost. 

He is an amazing husband and my rock. His Tinder profile will be impressive!

Caitlin Delaney and her family. Image: Supplied. Nobody knows when they are going to die, but I have a better idea than most. And the only thing scarier than waking up to that every day, is the thought of my daughters having to withstand the worst blow that can happen to a child.

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Being a mum and 'Cancer Caitlin' is exhausting.

My life is a balance of juggling appointments, trying to create as 'normal' a life as possible for my girls, death decluttering (no one needs to see those old photos or bills) and living with uncertainty (is this my last Easter?). 

I try to enjoy life’s pleasures without feeling guilty – should I indulge my penchant for champagne and chocolate, or should I be meditating on top of a mountain whilst sipping green smoothies and writing my cancer memoir?

And then there is the task of managing people’s responses to my cancer, a full-time job in itself. 

Well meaning, but misguided people who send you links to random diets or natural therapies that will 'cure' my cancer. 

All this adds enormous stress and guilt and suggests that I can control the outcome.

On the plus side, I have literally slowed down to stop and smell the roses – spending more time with my family and friends, dancing, travelling, living in the moment. 

Staring death in the face means that I have lost friends, but others are closer than ever, and I have gained wonderful new friends too. 

Trauma can be a glue for all those that truly understand suffering. Cancer can also be a handy litmus test for toxic, narcissistic people.

In my darkest moments I muse on how I got the 'wrong' cancer. When you tell people you have ovarian cancer, there’s this face they get. It’s the Ovarian Cancer Gaze. An expression of compassion, fear, and pity. 

Sometimes people can’t even meet your eyes, because they think they know what your story is, or more significantly, how it ends. A doctor even once said to me: "This is just the story of ovarian cancer. This is what happens."

Well quite frankly, that’s not good enough. It makes me want to scream. Because we CAN change the story. 

Thirty years ago, women like me were getting the Breast Cancer Gaze. 

Now, when someone tells you they have breast cancer, what do you say to them? You say: "You can beat this. It is not a death sentence. There is hope. Let’s get to work."

I want to hear someone say that to me.  

In the last year, a scary, strange year, I saw our country come together to achieve impossible things, and it gave me that ever elusive hope, because it told me that we can change the story. We CAN change the story of ovarian cancer.

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I have seen glimmers of hope over the past four years since being diagnosed; more drugs on the PBS, and more funding for ovarian cancer research. 

As an IVF scientist, I know that we can only change the survival rate by research. 

We are on the cusp of significant advances. But we need MORE funding and MORE research. And we need it NOW. 

When I heard of fashion label Camilla and Marc’s ovarian cancer campaign, starting a powerful conversation about ovaries and raising money for an early detection test, my heart filled with hope. 

Their campaign aligns strongly with my mission – bringing ovaries out of the shadows into the spotlight, and making a tangible difference by directly funding lifesaving research. 

Ovarian cancer is the deadliest but most under-funded women’s cancer. The statistics have hardly changed for this disease in close to 30 years, which makes me so sad and angry. 

It is a hard disease to diagnose as symptoms mimic those that most women experience; such as bloating, abdominal pain, frequent urination, and fatigue. Almost 70 per cent of women are diagnosed at an advanced stage like me, when it's too late. 

There is currently no detection test. A pap smear does NOT detect ovarian cancer. Early detection is as good as a cure. 

Camilla and Marc are donating all of their campaign proceeds directly to funding research into an early detection test. They are standing in solidarity beside women like me and making us feel visible, like our lives matter.

I think for a long time, there has been a lot of shame and secrecy around gynaecological cancers, and in particular ovarian cancer. 

I feel that women have felt ashamed to talk about their ovaries or that their cancer has come from 'down there'. There is nothing to be ashamed about. That's how babies are made. It's where we all came from. And it's only if we can start talking about them, that we can change the story of ovarian cancer. 

To think about my daughters reaching adulthood, adolescence even, without me is unbearable. 

To know that they will reach adulthood in a world where ovarian cancer is not a death sentence would be something to hold on to.

Caitlin Delaney is the Founder and Managing Director of CareFully

Feature Image: Supplied.

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