I’m Sara, a mum of two originally from the UK.
For years, I experienced symptoms like bloating, frequent urination and weight gain, which GPs dismissed as female issues and told me I was likely premenopausal or that it was something I was eating. In October 2017, after a doctor finally took note of my history of symptoms, I was diagnosed with stage 3C ovarian cancer – a cancer I had never heard of.
To say I was shocked by the diagnosis is an understatement. I was just 41, and I lived a healthy and active lifestyle. Everything in my world stopped, and I was suddenly faced with telling my two young sons that I had cancer. I can’t tell you how many days I put on a brave face for them and waited until the evening to cry in the shower. How could I explain that I might not be around for their big milestones – birthdays, driving tests, weddings and adulthood?
My diagnosis didn’t just turn my life upside down – it affected my children, my family who were back in the UK and my friends here in New Zealand too; I’d gone from being independent to suddenly relying heavily on friends, who attended appointments with me and helped look after the boys.
I completed the standard treatment regime – three rounds of chemo to try to shrink the cancer, followed by surgery to remove my ovaries, uterus, cervix and fallopian tubes, followed by a further three rounds of chemo to mop everything up.
The treatment worked; I was one of the lucky ones whose scans showed NED – no evidence of disease – for five years. I had beaten the odds, unlike so many of the women living with ovarian cancer that I had connected with, who had passed away. I honestly thought I had dodged a bullet and life, although never the same, started returning to a level of normalcy.
Then, in February 2023, some routine blood work showed my CA125 had risen, yet the follow-up scan showed nothing. My medical team encouraged me to continue planning a trip home to see my family and make memories with my boys. I had the best time – but the week I arrived home, I found out the cancer was back.
After five years cancer-free, it was like I’d been punched in the gut. I didn’t want to face more chemo, losing my hair, eyebrows and eyelashes again and missing more work – most of all, I dreaded putting my boys through it all over again. But what choice did I have?
2023 was another year lost to chemo and recovery. Like last time, my results from treatment looked good, but my medical team was wary. I was told that since the cancer had come back once already, it would likely come back again; they just weren’t sure when. Can you imagine living with the threat of cancer constantly hanging over you?
Earlier this year (2024), a raised CA125 test result showed once again the cancer had returned, and I’m now undergoing chemo for a third time.
There are days that I wonder if I can cope with continuing with treatment. There are days that I’m angry, and there are days that I’m bitter. While other people get to book holidays, purchase homes and make plans for the future, I can only ever look as far forward as my next chemo. I’m anxious when friends or relatives propose a visit or suggest plans because I secretly wonder if I’ll even be around then. I’ve not been able to focus on a relationship or career aspirations as much as I would have liked.
My boys - now young men - have struggled too. It’s not fair that they’ve had to deal with this when other kids get to just be kids.
My boys – now young men – have struggled too. It’s not fair that they’ve had to deal with this when other kids get to just be kids. It’s not fair that they’ve had a mum that has no energy, that needs to be looked after, that needs their help and support. I hate that for them. I think about how they will cope if I don’t make it through this – shamefully, I sometimes wonder if it might be a relief.
This cancer, once called a silent killer, is not silent at all; often we just don’t know what to listen for or we’re made to feel like we’re overreacting or that the symptoms are our fault. That’s why learning the symptoms of ovarian cancer is so important, and that you advocate for yourself when you know something isn’t right!!
I see other cancer charities getting so much community support and honestly, I’m resentful of that – the more attractive, more well-known cancers get the attention and more funding – while women like me have to self-fund medications that are the standard of care in other countries, which places an additional burden on families at an already incredibly stressful time. I’ve said it before, but it’s just not fair.
I hope people choose to support OCFNZ – the work they do is so important. The support they offer women and how they raise awareness and advocate for better ovarian cancer care is vital – and the research they fund gives women hope for the future. For women like me living with ovarian cancer, their work and the support of the community means everything.
We are grateful to Sara for sharing her experience with ovarian cancer and for helping us raise awareness. If you would like to share your story too, please get in touch.
