Going many extra miles

19/12/2020

My daughter Jane has gone many extra miles, figuratively and literally, to raise awareness and funds for research into low grade serous ovarian carcinoma since she was diagnosed with the disease in 2017.

When she came across the Kilt Walk she encouraged other women with the disease and their supporters in the UK to take part, decided she needed to lead by example and asked me to join her.

After she was diagnosed I said I’d do anything I could to help her. I hadn’t anticipated that meant walking up Dunedin’s Signal Hill three times in a morning, but that’s what we did.

She chose the hill because of its link to Scotland through the rock from Edinburgh Castle at the top.

All the funds raised went towards the research being done by Professor Charlie Gourley at Edinburgh University through Cure Our Ovarian Cancer. and were matched pound for pound by philanthropist  Sir Tom Hunter.

Jane and I appear, briefly, in the video at 3:17 with Stella the chocolate lab who accompanied us.

Among the advocacy work Jane is doing, is a petition to improve outcomes for women with ovarian cancer.

It is urging the government to support the development of ovarian cancer awareness/education campaigns for the public and health professionals; ensure women with OC symptoms have timely access to testing; improve access to approved therapies and clinical trials; and dedicate funding to ovarian cancer research.

Every week four New Zealand are diagnosed with ovarian cancer, every week two New Zealand women die from it. That is more women dying of this disease than are killed on the roads each year.

These dreadful statistics aren’t peculiar to New Zealand. All over the world many women are diagnosed late because they, and too many doctors, don’t have sufficient awareness of the disease; there isn’t enough access to tests and approved treatments and there is too little research.

The action the petition is urging will save lives.

It is non-partisan and has the support of Cure Our Ovarian Cancer, Ovarian Cancer New Zealand, Talk Peach and the NZ Gynaecological Cancer Foundation.

Please sign it here and encourage others to sign too.

You don’t have to be in New Zealand or even be a New Zealand to sign. Better awareness, treatment and research anywhere will help women everywhere.


New normal same cancer

27/11/2020

Early diagnosis and treatment can make the difference between surviving cancer and dying from it.

Covid-19 lockdowns have saved some lives but endangered those of others whose diagnosis and treatment have been delayed.

Ovarian cancer is one which is often diagnosed late at the best of times because symptoms can be vague and mistaken for those of several far less serious problems.

You can learn about symptoms at Cure Our Ovarian Cancer. If they persist for more than two weeks, see a doctor and keep going until you get a diagnosis.

 


Virtual Dundee Kiltwalk

03/07/2020

White isn’t the most practical colour for walking shoes when most of my daily perambulations are on farm tracks and unsealed roads.

But they were the only ones selling at a 30% discount that fitted me and the bargain trumped the colour.

Besides, they’re comfortable which is especially important today because they’ll be doing a lot of walking.

My daughter and I are doing the virtual Dundee Kiltwalk.

Our media release says:

While Scotland sleeps on Thursday night, two women will be starting the virtual Dundee Kiltwalk almost as far from the city as it is possible to get.

Jane Ludemann and her mother Elspeth will be walking up Signal Hill in Dunedin, New Zealand, three times. They will begin at 9:30am on Friday New Zealand time, which is 10:30pm on Thursday GMT.

Signal Hill is 393 metres (1289 feet) high.

They chose this  hill because the monument at its summit is hewn from the rock on which Edinburgh Castle stands and they are doing the Kiltwalk to raise money for research into low grade serous ovarian carcinoma at Edinburgh University.

When Jane was diagnosed with this rare form of cancer at the age of 32, three years ago, she discovered that there was very little research on the disease and no way to fund research into it anywhere in the world.

That spurred her to establish Cure Our Ovarian Cancer, a charitable trust dedicated to increasing awareness of LGSOC, supportIng  women with the disease and raising funds for research into better treatments and an eventual cure. The University of Edinburgh is their UK charity partner. Since 2019, Cure Our Ovarian Cancer has raised  £10 000 of their £25 000 target. They hope to part fund a researcher at the University of Edinburgh to develop better laboratory models of the cancer to help find new treatments. 

“University of Edinburgh’s Professor Charlie Gourley has provided national leadership of low-grade serous clinical trials in the UK.  Furthermore the work of his research team is world renowned,” Jane said.

Historically low-grade serous ovarian cancer has been overlooked. It disproportionately affects young women and the overall survival rates are really poor.” “It’s really confronting to stare death in the face at such a young age.” “If I don’t survive, the thing I want most in the world is to know this won’t happen to someone else.” “Knowing that Professor Gourley is on the other side of the world, working hard to improve survival, makes life that bit easier”, says Jane.  

Elspeth said that when Jane was diagnosed she and her husband said they would do anything they could to help her.

I didn’t think that would entail climbing a steep hill three times, but thankfully the Kiltwalk is about distance not speed.”

The rock at the top of the hill isn’t the only link between the Ludemann’s Kiltwalk and Scotland. Elspeth’s father, Charles Sime, was born in Dundee and lived there until he immigrated to New Zealand in his 20s.

“Although Dad ended up living in New Zealand longer than he lived in Scotland, he retained his accent and took great pride in wearing his kilt,” Elspeth said.

“He would be very sad that his granddaughter has cancer but so proud of what she is doing to raise awareness and funds. He loved tramping and would be tickled pink that we are doing the Kiltwalk with its link to him home town.”

The Dundee Kiltwalk has raised millions of pounds since it started in 2016. Covid-19 means people can’t walk together so this year’s will be the first virtual Kiltwalk. All funds raised will be matched by 50% donations from Sir Tom Hunter.

If you would like to help fund this lifesaving research you’ll find all the details here.

 

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Kiwi charity secures New York Times Square billboard for World Ovarian Cancer Day

08/05/2020

A media release from Cure Our Ovarian Cancer:

Friday May 8th is World Ovarian Cancer Day, and a young New Zealand woman, Jane Ludemann, has instigated a huge billboard campaign in New York’s Times Square to raise awareness and funding support for the often overlooked deadly disease.

“This campaign is about ensuring women living with ovarian cancer the world over experience hope for a better future. At times it can feel like we’re alone, almost as if we’re in an empty Times Square. That is why we need more eyes on this disease and more investment in research and hopefully we’re making that point with our new campaign,” says Ludemann.

In 2018 a young Canadian model, Elly Mayday, stood in Times Square in her teal underwear to raise awareness and funding for ovarian cancer research. She died of the disease ten months later but her efforts inspired Brianna Wagner to stand in her place in 2019. In 2020, the research charity, Cure Our Ovarian Cancer, planned to mark the day again with an organised fundraising event that involved sixty ovarian cancer sufferers from around the globe gathering in Times Square. 

Unfortunately Covid-19 restrictions made this impossible but Jane, also an ovarian cancer sufferer and founder of Cure Our Ovarian Cancer, was determined to continue the campaign and went on to secure one of the largest billboard’s in Times Square. Ludemann enlisted creative and digital agency Topham Guerin to develop the campaign to highlight the need for crucial research into curing the dangerous cancer, and honour the contribution of Elly Mayday.

Cure Our Ovarian Cancer is a New Zealand based charity dedicated to improving the survival of women with low-grade serous carcinoma. Founded in 2018, they raise funds directly, and through partner organisations in the United States, Canada, the United Kingdom, Australia and New Zealand. They want to see the survival rates of Low-Grade Serous Carcinoma (LGSC) reach those of breast cancer.

About Ovarian Cancer

Ovarian Cancer is the most lethal of all women’s’ cancers, the death rate being double that of breast cancer and it is the seventh most common cancer worldwide. Every year more than 300,000 women are diagnosed with the disease – about the daily number of people that pass through Time Square each day (330,000) – and 180,000 women will die from it. By 2024 the incidence of ovarian cancer will increase by 47% and the number of deaths each year will rise to 293,000 it is predicted. 

Background – Low-Grade Serous Carcinoma (LGSC)

Jane Ludemann was diagnosed with LGSC in 2017. LGSC is an often incurable subtype of ovarian cancer that disproportionately affects young women. Half are diagnosed in their 20s, 30s and 40s and the initial treatment usually consists of menopause inducing surgery, chemotherapy and/or hormone inhibitors.

In 1997 research showed the addition of hormone inhibitors like Letrozole could double the time it takes for a woman’s cancer to return. Letrozole received FDA approval for breast cancer in 1998.

“A 20 year delay in cancer treatments is unacceptable” says Ludemann. 

She was shocked to discover fewer research papers per year were being published on her ovarian cancer per year than on breast cancer papers per day.

“It was hard to believe just how little research was happening anywhere in the world for the cancer trying to kill me.”  

In 2018 she founded research charity Cure Our Ovarian Cancer to raise crucial funds to help researchers find treatments to improve survival.

“It’s a horrible, horrible silent killer and being diagnosed feels really isolating. But, despite what they are going through, we are an amazing community and this is what drives Cure Our Ovarian Cancer.”

“It’s really hard at any age to get this diagnosis, harder still to be diagnosed when you’re in your 20s, 30s and 40s. Elly was really brave and was one of the first women to be really public about her journey, and other women diagnosed looked up to her,” Ludemann says. “This is why we wanted to honour her memory and generate a conversation around ovarian cancer research. It also helps other sufferers to know they are not alone when going through this.”

The theme of this year’s World Ovarian Cancer Day is powerful voices and while there won’t be many people in Times Square because of the lockdown the billboard will provide a powerful voice to raise awareness of the disease and the need for research funding.

The billboard will go live at 4pm New Zealand time (midnight in New York).

You will be able to see it here


5 things every woman & those who love them should know

08/05/2020

Every woman and those who love them should know about ovarian cancer.

If it is diagnosed early – at stage 1 when the disease is confined to the ovary – survival rates are high.

But ovarian cancer is often diagnosed late when it has spread into the abdomen, and further, and survival rates then are much, much lower.

Lack of knowledge about the disease is one reason it is so often diagnosed late. Another is that the symptoms can be vague and can often be for other, far less serious, conditions.

My daughter had been to her GP for two years with symptoms.

She has a rare subtype of ovarian  – low grade serous carcinoma – which disproportionately strikes younger women.

Sally Rae wrote Jane’s story in  survivor changing focus for the ODT.

Clare de Lore wrote about Jane in  how an ovarian cancer patient is fighting the myth of the ‘silent killer’ for The Listener.

Katie Kenny interviewed her for we’re comfortable talking about breast cancer, but ovarian cancer remains a forgotten disease on Stuff.

Dunedin Central Rotary Club reviewed her speech here.

Jane has a blog janehascancer.com

If you missed my blog post with Jane’s story, you’ll find it at  living under cancer sword.

You can learn more, and donate to lifesaving research at Cure Our Ovarian Cancer


Cancer isn’t cancelled

08/05/2020

Covid-19 has cancelled many things but cancer isn’t cancelled.

It’s World Ovarian Cancer Day.

  1. A Pap test (cervical smear test) does not detect ovarian cancer
  2. Ovarian cancer is often diagnosed at a late stage
  3. Diagnosing Ovarian cancer before it spreads makes it much more treatable
  4. Symptom awareness might lead to quicker diagnosis
  5. Common symptoms include:
    a. Persistent bloating
    b. Difficulty eating
    c. Feeling full quickly
    d. Pelvic/abdominal pain
    e. Urinary symptoms

 

Around one in 70 New Zealand will be diagnosed with the disease this year.

Around one in 1,000 will, like my daughter Jane, have the rare subtype low grade serous ovarian cancer that disproportionately strikes younger women.

 

You can learn more at: cureourovariancancer.org

Follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com

 


Talking teal

20/02/2020

February is Ovarian Cancer Awareness month in New Zealand and Australia.

It’s a time to talk teal because not all cancers are pink.

One in 70 women will get ovarian cancer. In Australia four women are diagnosed with it every day and three of the four will not survive. The survival rate is just as bad in New Zealand.

One reason for that is that it is often diagnosed late because many don’t know the symptoms.

Dealing with a diagnosis of a rare and often fatal cancer, like low grade serous ovarian carcinoma, is hard.

Going public with your story is too.

But after my daughter got over the shock of the diagnosis she discovered her experience of later diagnosis was far too common and that there was very little awareness of, advocacy for, and research into, ovarian cancer. Jane decided that had to change and she was going to change it.

Sally Rae wrote Jane’s story in  survivor changing focus for the ODT. *

Clare de Lore wrote about Jane in  how an ovarian cancer patient is fighting the myth of the ‘silent killer’ for The Listener.

Katie Kenny interviewed her for we’re comfortable talking about breast cancer, but ovarian cancer remains a forgotten disease on Stuff.

Dunedin Central Rotary Club reviewed her speech here.

Jane has a blog janehascancer.com

If you missed my blog post with Jane’s story, you’ll find it at  living under cancer sword.

P.S.

* Milly, the lamb in the ODT photo was very much a city one. She was allowed inside until she got too big for disposable napkins, then she roamed the garden. However, while grazing the lawn was welcome her tree trimming was not so she moved up to our farm.

Like all pet lambs, she is no respecter of boundaries and has found her way to our house a few times.

 


Living under cancer sword

13/02/2020

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 nearly three 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 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, right up until she required emergency surgery from cancer complications. You can read more about the symptoms here:

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.

18 months after diagnosis and 8 weeks after breaking her leg skiing.

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 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 it’s partner charities, she’s helped raise more than $200 000 in less than two years. And aside from a small payment fee, 100% of every dollar raised goes to research.

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 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 her example pushes us to do better every day.

As a family we are committed to helping in every way we can. We’ve funded three 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 without help.

This is why we’re going public. Because our daughter,  and all the other women with this dreadful disease,  need your support.

Our message to you is simple. Please donate, please fundraise and please tell everyone you know about our incredible girl and this horrible cancer. Women’s lives are on the line.

Learn more: cureourovariancancer.org

Follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com


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