File photo / Kim Gillespie
Opinion: North Otago farmer Ele Ludemann shares her moving story on how she keeps going after the loss of two children and her daughter Jane's cancer diagnosis.
When you're pregnant you have hopes and dreams for your babies and their futures, dreams you probably aren't fully aware of unless you lose them.
Some of our dreams were dashed when our sons were diagnosed with degenerative brain disorders and died young, Tom aged 20 weeks, and Dan 10 days after his fifth birthday.
Life with the boys who had multiple disabilities and passed none of the developmental milestones wasn't easy, nor was coming to terms with their deaths.
Many people who learn about Tom and Dan say they couldn't cope if that happened to their children. I'd probably have thought the same until I had to. Then, the only alternative to coping was not coping and through necessity, I coped.
That doesn't mean I always did it well.
There were some very long nights and some very dark days; nights when I fell into bed exhausted by grief but couldn't sleep, days when it felt like I was stuffed full of dark clouds and was ready to burst.
But even at the very worst of times I had the love and support of my husband, wider family and friends, shining light against the darkness of despair.
And our sons, who could do so little, taught us so much: how blessed we are to have that support; that people are people regardless of what they can or cannot do and that ability isn't a right it's a privilege
Our response has also been governed by the knowledge that it would only compound the tragedy of our son's difficult lives and early deaths if being bitter and twisted and focusing on what we'd lost stopped us appreciating and enjoying all we still had and could have.
And we still had their older sister who gave us the joys and challenges children provide.
None of those challenges were major until four years ago when she was diagnosed with low grade serous ovarian carcinoma (LGSOC), a type of ovarian cancer that is frequently incurable.
Jane, at just 32 years old, was told with current treatments her life expectancy was likely to be only five to 15 years.
Ovarian cancer is the fifth most common cause of female cancer death in New Zealand.
It kills 182 women a year which is more than die on the roads, yet we knew almost nothing about the symptoms.
For two years Jane was told by doctors her symptoms were not serious, right up until she required emergency surgery from cancer complications.
Not letting what we've lost with the lives and deaths of our sons, blind us to what we still have is, of course, easier in theory than practice and it has been harder still to focus positively in the wake of Jane's diagnosis.
Listen to Jamie Mackay interview Ele Ludemann on The Country below:
There's been a lot of tears, a lot of prayers and a lot of swears.
There are nights of restless sleep when I wake to find the nightmare is real, and days when I cry easily and often.
But again we've got wonderful support from family and friends, and just as she gave me a reason to not just survive but live a full life when her brothers died all those years ago, Jane's example is providing an inspiration for me now.
If it's hard for me as a mother, how much harder must it be for her, a young woman living under the cancer sword, facing what it's already cut from her life, the pain of that and the knowledge that it could take so much more?
She could have sunk into depression and stayed there. She could have chosen to focus only on herself. Instead she is doing much, much more.
She is fighting not just for herself but for all the other women around the world who share her cancer, many of whom are young like her.
What will determine whether women like our daughter live or die is research.
Rare cancers like Jane's, account for almost half of all cancer deaths yet receive just 13.5 per cent of research funding.
The limiting factor isn't science, it's the money for the scientists to study it that's lacking.
When Jane was diagnosed there wasn't any way to donate directly to her cancer anywhere in the world.
She knew that had to change if she and other women were to survive.
She liaised with doctors, researchers and charities around the world and founded Cure Our Ovarian Cancer – a registered charitable trust, that facilitates donations for low-grade serous cancer research both in New Zealand, and internationally.
Jane spends most of her days connecting with women and researchers around the world, fundraising for research into her cancer.
Through Cure Our Ovarian Cancer and its partner charities, she's helped raise more than $500 000 in less than three years.
She's humbled by the public's generosity, but also overwhelmed by how far is left to go.
Tens of millions are needed if change is to happen in time for her. But as Jane says, "How can I do nothing? Knowing that in 10, 20, 30 years, women will continue to die in droves without research. You just have to try."
We have funded three research projects in New Zealand and the USA and will continue to donate.
But it will take more than we can do as a family and this isn't just for Jane, it's for every other woman who has the disease now and for the others diagnosed in the future so they won't face the prognosis Jane was given.
Jane's work isn't confined to fundraising, she also devotes a lot of time to advocacy for women with ovarian cancer and raising awareness of the disease.
Her experience of multiple trips to doctors and a late diagnosis isn't unusual which is a major reason survival rates are so poor.
For the three years she's designed posters with the symptoms and sent them to every GP in the country.
Last year she got a billboard in Times Square New York on World Ovarian Cancer Day and that led to billboards throughout New Zealand for gynaecological cancer month.
Last week she presented a petition to parliament seeking better outcomes through increased awareness for women and GPs; better access to tests, treatments and clinical trials and much more research.
And through social and mainstream media she takes she works to highlight the symptoms and issues, knowing that if someone had done that years ago, her diagnosis would have been earlier and her life expectancy so much better.
We're in awe of everything Jane is doing while living with this awful cancer.
It's heartbreaking but if she can achieve so much with the cancer sword hanging over her, there's no excuse for us.
Where to get help:
Rural Support Trust: 0800 787 254
Lifeline: 0800 543 354 (available 24/7)
Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO) (available 24/7)
Youthline: 0800 376 633
Kidsline: 0800 543 754 (available 24/7)
Whatsup: 0800 942 8787 (1pm to 11pm)
Depression helpline: 0800 111 757 (available 24/7)
If it is an emergency and you feel like you or someone else is at risk, call 111.
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