A guest post by my good friend Ele Ludemann:
When you’re pregnant you have hopes and dreams for your babies and their futures that you probably aren’t fully aware of unless you lose them.
Some of ours were dashed when our sons were diagnosed with degenerative brain disorders and died, 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 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 nearly 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.
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.
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% 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 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 COOC and it’s partner charities, she’s helped raise more than $300 000 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 women living with he disease now. But as Jane says, “How can I do nothing? Knowing that in 10, 20, 30 years time, women will continue to die in droves without research. You just have to try.”
We’re in awe of everything Jane is doing while living with this awful cancer. It’s heartbreaking but as a family we are committed to helping in every way we can. We’ve funded four research projects in the US and NZ and continue to do what we can. But this problem is too big for one family to solve by ourselves. That’s why Jane founded COOC and is putting so much effort into advocating for the changes needed to get earlier diagnosis and better treatments.
Ovarian cancer strikes one in 70 women and is the 5th most common cause of female cancer death in New Zealand. Yet we knew almost nothing about the symptoms. For two years Jane was told by doctors her symptoms were not serious, until she required emergency surgery from cancer complications. This experience is far too common, leading to too many late diagnosis and much poorer life expectancy.
Ovarian cancer kills 182 New Zealand women a year – that’s more than die on our roads. The government spends $1 billion annually trying to reduce the road toll but most years spends nothing to reduce the toll that ovarian cancer takes.
Each week about eight women are diagnosed with the disease and they will learn their outcomes will probably be no better than those for women diagnosed with breast cancer 40 years ago.
Changing that requires increased awareness among women and GPs, better access to tests, treatments and clinical trials and more funding for research.
Jane is fronting a petition seeking that change. It is nonpartisan and has the support of Cure Our Ovarian Cancer, Ovarian Cancer NZ, Talk Peach and the NZ Gynaecological Cancer Foundation.
Please sign to help bring about the changes that are needed to save lives: https://www.parliament.nz/en/pb/petitions/document/PET_99389/petition-of-jane-ludemann-for-cure-our-ovarian-cancer
If you’re like me, you’ll probably cry as you read this post. And hopefully you’ll also do what I did and sign the petition. It’s a great cause, so feel free to share the petition with your friends and networks.