BEAT

08/05/2022

In this video Sasha Terfous, Poet Laureate for Wexford Town shares a powerful message to help raise awareness of World Ovarian Cancer Day on May 8th 2022.

The theme of ‘BEAT’ is an acronym for the symptoms of Ovarian Cancer:

Bloating that is persistent and doesn’t come and go Eating less and feeling full more quickly

Abdominal and pelvic pain you feel most days

Toilet changes in urination or bowel habits

 

You can learn more about ovarian cancer, including other symptoms, at Cure Our Ovarian Cancer.

#NoWomanLeftBehind #WOCD2022 #WorldOvarianCancerDay


World Ovarian Cancer Day

08/05/2022

Today is World Ovarian Cancer Day.

Established in 2013 by a group of leaders from ovarian cancer advocacy organizations around the world, May 8 – World Ovarian Cancer Day, is the one day of the year we globally raise our voices in solidarity in the fight against ovarian cancer.

While the World Ovarian Cancer Coalition works on many fronts, World Ovarian Cancer Day is our flagship awareness-raising initiative, and is the key date in our calendar. Supported by close to 200 organizations from around the world, our social media reach grows exponentially every year, with 2021 directly reaching over eighteen million up from three million the previous year – a growth of nearly 500%. Our partner organizations, as small as kitchen table-based patient advocacy groups in rural communities, to national healthcare associations based in major metropolitan areas, all come together as one to raise awareness about the disease – and in 2021 their extended reach of the Day was over 100 million. 

The disease is the deadliest of the five gynaecological cancers and kills a New Zealand woman every 48 hours – that’s about 180 women a year which is more than die on the roads.

It’s been that way for decades.

Breast and prostate cancer used to take a similar toll but increased awareness and research has improved diagnosis, treatments and survival rates for them.

That’s not an argument for less funding for those cancers, it’s a plea to give similar funding to the prevention, treatment and research of ovarian cancer.

In March last year a petition was presented to parliament seeking funds for ovarian cancer cancer awareness and research.

More than a year later, all the work increasing awareness, advocating for women with the disease and funding research is done by volunteers through charities like Cure Our Ovarian Cancer.

That’s why women like the ones interviewed have to speak up:

Ovarian cancer is the least survivable cancer for women in New Zealand and yet one of the most underfunded. For over a year advocates have been fighting for more funding, research, and better access to diagnosis, but to no avail.

Now, an Official Information Act request has revealed just why it’s so hard for some young women to get a diagnosis, with some DHBs refusing to refer them for an ultrasound.

Jane Ludemann, founder of Cure Our Ovarian Cancer, reached out to all DHBs to see their referral procedures but only heard back from 13 of them.

Out of the 13, only seven DHBs would accept a referral for someone younger than 45 with a normal CA-125 blood test and one month of symptoms.

“There are two ways of screening for ovarian cancer, one is a blood test called CA-125, that’s a tumour marker that’s specific to ovarian cancer. We know that in early stages of ovarian cancer the CA-125 can be completely normal so you have a screening test that doesn’t perform that well and that’s the concern,” obstetrician Dr Michelle Wise said.

Hence the better option is an ultrasound. It’s still not 100% accurate but can offer more information.

The Hawke’s Bay and Northland DHBs said they wouldn’t accept the referral for an ultrasound for those under 45 with a normal blood test result even if the symptoms lasted three months and were worsening.

Mid Central DHB indicated they would accept the referral, but women have to wait up to five months for an appointment.

“That’s setting women up to fail because you’re not going to catch those ovarian cancers early if you’re making people wait so long to tick the boxes, and it’s not a medical rationale for that referral criteria – it’s a resourcing issue,” Ludemann said.

She started advocating for ovarian cancer when she got diagnosed at 32. It took her two years of multiple GP visits, specialist appointments and misdiagnoses for the doctors to finally tell her she has between five and 15 years of life left to live.

“I’ve made it five years and I’m lucky because about two-thirds of the women that were diagnosed when I was aren’t here anymore,” she said.

Of the women with ovarian cancer in New Zealand, one in eight are diagnosed before the age of 45 and, because of a lack of funding and research, it’s unclear what treatment options are the best and whether or not they’ll even work. . . 

It shouldn’t be this way. Because it is, women have to be their own best advocates:

A young mother whose life has been turned on its head by ovarian cancer is imploring wāhine to listen to their bodies and advocate for themselves if something isn’t right.

In October, Miracle Marsh, then 27, started experiencing fatigue, loss of appetite, a change in bowel habits, frequent urge to urinate, and pain in her abdomen and back. Her stomach swelled so much she looked hapū (pregnant).

As a busy mum of two boys, aged six and 10, working in aviation in a ground handling operations role, the Whakatane woman put many of her symptoms down to life’s stresses. But it turned out to be stage 1C3 mucinous ovarian carcinoma.

Marsh is telling her story for World Ovarian Cancer Day, which this year coincides with Mother’s Day, as part of a campaign to encourage awareness of ovarian cancer in younger women.

While typically thought of as a disease in older wāhine, ovarian cancer can also affect those under 45 – and this group is more likely to experience delays in diagnosis. . . 

Marsh had to push for a lot through her cancer journey: “It has been really hard.”

She now shares her story across social media to encourage self-advocacy and awareness of ovarian cancer, its symptoms and risks and lack of wider screening.

“It is so important for wāhine to listen to their bodies and come forward. I hope my voice will change that.”

Marsh said women especially tend to care for others before themselves, but she wanted to encourage other wāhine to make themselves and their health a priority: “There should be no guilt in that.”

Although ovarian cancer symptoms are vague, “we all know when something is off,” she said, and she also wanted men and young girls to know the signs. . . 

Too often women with ovarian cancer symptoms are told it’s all in their heads:

Kelly Gilmore was about to be sent home from the emergency department with laxatives and diet advice when a doctor overheard her crying on the phone and agreed to do a scan.

“The screen immediately lit up with a mass the size of a growing baby. I burst into tears, of joy, that there was something there and I wasn’t crazy,” Gilmore, now 40, said.

The Tauranga mum-of-two had ovarian cancer.

Yet in the two years prior, Gilmore – who works as an accountant – had visited two medical centres several times complaining of pain in her abdomen and saying she was gaining weight despite exercising more and eating less.

“I looked like I was nine months pregnant,” she told the Herald.

Each visit she said she was told there was nothing wrong with her and that she was just overweight and needed to change her diet and live a healthier lifestyle.

“My tummy just kept getting bigger and bigger. I requested a scan only to be told I wasn’t eligible,” she said.

After Gilmore kept insisting something was wrong, she said, a nurse practitioner started to explore her mental health. She had a history of depression and anxiety and the nurse thought she could have possible personality disorder, medical records seen by the Herald show.

Gilmore doesn’t blame the nurse practitioner, saying she didn’t meet the criteria for a referral to see a specialist and the nurse was just doing her best to explore other possibilities. But it did make her feel crazy.

“It’s really frustrating not being believed,” she told the Herald.

“I started to think maybe it was in my head and it was just a cyst and would disappear.”

However, when New Zealand was entering its first nationwide Covid-19 lockdown in March 2020, Gilmore turned up at Tauranga Hospital’s emergency department in severe pain.

“It was getting to the point where the pain was becoming really bad and I couldn’t eat no matter what position I was in,” she said.

She said she was refused a scan and was about to be sent home with laxatives and more diet advice when she was overheard crying to her then-husband on the phone.

The doctor changed her mind at the last minute and they performed an ultrasound, Gilmore said.

She had a three-litre tumour growing in and around her organs. . . 

A week after that, during alert level 3, she received a phone call from a doctor who told her she had ovarian cancer.

“It was really hard to hear,” Gilmore said. . . 

You can learn more about ovarian cancer, its symptoms, treatments, support groups and also fund life saving research at Cure Our Ovarian Cancer.

The charity has bill boards in Times Square, New York, Piccadilly Circus today and throughout New Zealand for a week.

Cure Our Ovarian Cancer has generously been donated billboards across New Zealand. We encourage you to go, check them out – take a photo – and tag Cure Our Ovarian Cancer NZ on social media (@ovariancancernz – instagram and Facebook & @cure_ovarian_ca Twitter).

The billboard locations are listed at the link above.

This year’s billboards are all about the excuses our ovarian cancer community told themselves before they were diagnosed – and a reminder that sometimes what seems not that serious – could be very serious – and it’s better to be safe than sorry and let your doctor know. You can find more information about ovarian cancer symptoms here. . . .

Join me in raising awareness so we can make #OvarianCancer a global priority. If nothing is done right now, over 4 million women will die from this disease by 2040. The time to act is now, so we can reach our goal of #NoWomanLeftBehind #WOCD2022 #WorldOvarianCancerDay


Sign to save lives

17/02/2021

Last night I saw a tweet from a woman saying she had just lost a beautiful friend to ovarian cancer.

Then I saw this one:

I understand and am sympathetic to the concern about conversion therapy but how can a petition on that issue that will affect a very few people gain so much more support than this one that affects so many?

Petition request

That the House of Representatives urge the Government to support the development of ovarian cancer (OC) 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 OC research.

Petition reason

Ovarian cancer (OC) kills more women per year than the road toll. There is no screening test. In NZ the majority of women can’t name a single symptom before diagnosis. There are significant barriers to access detection tests. NZ survival is 5% less than Australia (Au)—NZ has far fewer funded drugs and clinical trials. Breast cancer survival is more than double OC. Au/Canada/US have dedicated OC research, we fund almost none. Supported by Cure Our Ovarian Cancer, OCANZ, Talk Peach and NZGCF.

Why does this petition deserve and need much more support?

The woman in the first tweet is one of three or four New Zealanders who will die of ovarian cancer this week; one of the +/- 182 the disease will kill this year.

That’s more than will die as a result of road accidents.

The government spends about $1 billion a year on road safety improvements and most years nothing at all on raising awareness of ovarian cancer, improving access to tests, treatments and clinical trials, or research.

Because of that the eight or 10 New Zealand women diagnosed with the disease this week and every week will find their survival rate is no better than it would have been decades ago.

One reason for that is that many are diagnosed late because they didn’t know the symptoms and often their doctors mistake it for other less serious conditions.

Another is that for years there has been little or no research to find better treatments and eventual cures.

That will change if the petition is acted on.

The petition is fronted by more daughter and supported by four gynaecological cancer organisations – Cure Our Ovarian Cancer, Ovarian Cancer NZ,  Talk Peach and the NZ Gynaecological Cancer Foundation – and it is non-partisan.

Ovarian cancer doesn’t care about politics and it doesn’t discriminate. It strikes women of any age or ethnicity and it kills them.

It will keep killing them unless there is increased awareness of the symptoms, better access to testing, treatments and trials and a lot more research.

Please sign the petition and share this link to encourage family, friends, work mates . . . everyone you know to sign too: https://www.parliament.nz/en/pb/petitions/document/PET_99389/petition-of-jane-ludemann-for-cure-our-ovarian-cancer

P.S.

This isn’t intended to dissuade anyone from supporting the other petition – it’s not either/or.


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.


Sign to save lives

28/10/2020

One New Zealand woman dies of ovarian cancer every 48 hours.

You can help change that horrifying statistic by following this link and signing the petition to save lives.

It is the work of four gynaecological cancer organisations that are seeking better outcomes for women with the disease with a petition that seeks better education of women and health practitioners, improved access to tests and treatment, improved access to clinical trials and a lot more research.

The petition is non-partisan, the women promoting it have worked across parliament to get cross-party support.

The media release from Ovarian Cancer Awareness explains:

Organiser of a petition asking for a better deal for education about and support for ovarian cancer, Jane Ludemann, says that legislators and decision makers need to start taking this disease seriously; it kills a woman every two days in Aotearoa New Zealand.

“Ovarian Cancer is the most deadly gynaecological cancer, and kills more women than New Zealand’s annual road toll and more than melanoma. Yet it remains underfunded and largely ignored,” she says.

Jane is spearheading a petition to Parliament asking for the development of ovarian cancer education campaigns for the public and health professionals, better access to testing for women with symptoms, improved access to approved therapies and clinical trials, and dedicated funding of research.

“The most significant issues around ovarian cancer begin with the lack of knowledge about it – women don’t know the symptoms and leave it too long to report to their doctors, who themselves often don’t connect the symptoms with the cause.

“Next, there is no specific screening test for ovarian cancer (unlike a mammogram for breast cancer or a smear for cervical cancer) and providers use the excuse of funding to leave symptomatic women untested.

“Then we lack access to drugs that are proven effective overseas and to clinical trials – which would allow women to access promising new treatments.

Jane says that virtually every advance in cancer survival has been made on the back of clinical trials and the lack of funding in this country means the trials are not available here.

“It is extraordinary that the government spends more than $126 million on medical research through the Health Research Council (HRC) every year. In 2018, 2019 and (to date) in 2020 the HRC has not funded any ovarian cancer research at all.

“Significant improvements in survival just cannot be made without advances in treatment and screening through research.

“There are just too many families affected by the Ovarian Cancer-caused illness and deaths of mothers, partners, sisters, nieces and friends. In the lead up to the election we hope both sides of the house will pay attention to this very real health issue,” she said.

The petition is being supported by Cure Our Ovarian Cancer, Ovarian Cancer Awareness, Talk Peach, and the New Zealand Gynaecological Cancer Foundation. If can be accessed here:

www.parliament.nz/en/pb/petitions/document/PET_99389/petition-of-jane-ludemann-for-cure-our-ovarian-cancer

Ovarian Cancer – some facts

  • One New Zealand woman dies of ovarian cancer every 48 hours.
  • Ovarian cancer survival overall less than half that of breast cancer. For advanced (stage 3-4) ovarian cancer, the 5 year survival rates are 3-4+ times less.
  • 90% of NZ women can’t name a single symptom before they are diagnosed. The majority of women in NZ are diagnosed at an advanced stage.
  • In New Zealand overall survival is 37%, a figure which hasn’t changed in over 15 years, and is 5% less than Australia. If detected at stage 1 (when the cancer is contained within the ovary) survival is over 90 %
  • A cervical smear does not detect ovarian cancer. There is no screening test. However, a ca-125 blood test and transvaginal ultrasound can detect over 98% of ovarian cancers and their combined cost is similar to a mammogram. But over a quarter of NZ women with ovarian cancer have to visit their doctor 5 or more times about their symptoms before being offered a test
  • Australian government in 2019 announced targeted research funding – allocating an additional $35 million ($20 million for ovarian cancer and a further $15 million for gynaecological clinical trials). The New Zealand government has funded no research in this area for the past three years.
  • For more information see: https://ovariancancer.co.nz

Jane is my daughter. I wrote about her living under the cancer sword here.

Her personal website is janehascancer.com 

You’ll find more about the petition and ovarian cancer at Ovarian Cancer Aotearoa Coalition


Step Up stepped up

11/10/2020

When our daughter was diagnosed with low grade serous ovarian cancer and told her likely life expectancy was five to 15 years, I told her I’d do anything I could to support her.

Two Fridays ago that meant walking 30+ kilometres as part of her Step Up challenge for Gynaecological Cancer Awareness Month.

Most of those 46,483 steps were along the shore of Lake Wanaka on the Millennium Track, which passes the much-photographed Wanaka Tree.

An hour or so further on I added some height to the challenge, climbing Ironside Hill.

 

Although I did it by myself I wasn’t alone in accepting the challenge.

Jane and a friend climbed Roy’s Peak, overlooking Lake Wanaka.

Others stepped up in Australia (one of which was five mountains in a day with a jig at the top of each); in Canada (a bike ride  across Quebec) in the UK and in the USA.

If you would like to help fund lifesaving research which is the only hope for too many women, most in the their 20s and 30s, who get the diagnosis Jane did, you can do it here.

 


Step Up & sign to save lives

21/09/2020

 When you are living on limited time there is a really strong urge to look inwards and just focus on yourself. . . .But the more I learnt about my cancer, the more I realised I couldn’t do nothing. The treatment I take belongs to a class of drugs approved for breast cancer 43 years ago. For forty years it was sitting on a shelf but no one knew it could help women with my cancer because the research wasn’t funded. This isn’t just about me, though yes I really want more time because I don’t have enough. But it’s also about the women who aren’t here to use their voices, and the women who will sit in that doctors office in ten, and fifty years time. And whether they get told you’ll likely die, and I know how awful that is to hear, or if their doctor will be able say we can get you through this. I can’t do this on my own but together we can

These were my daughter’s words in conversation with Jim Mora yesterday.

 

Jane has low grade serous ovarian cancer.

She was told, when she was diagnosed, that her likely life expectancy was five to 15 years.

That was three and a half years ago.  A young woman diagnosed at a similar time with a similar stage of the disease died earlier this year.

Given her prognosis, Jane could be focusing only on herself. Instead she’s fighting not just for herself but for all the other women who have, or will get, this dreadful disease.

You can help her by signing the petition.

It is non-partisan. This isn’t about politics, it’s about women’s health and lives. The four gynaecological cancer organisations behind it have worked across parliament to get cross-party support.

You don’t have to be in New Zealand, or be a New Zealander to sign.

The other way to help is by donating to Cure Our Ovarian Cancer.

To mark Gynaecological Cancer Awareness Month, Jane has launched a Step Up challenge.

I’ve joined it and will be walking the Millenium Track from Wanaka to Glendhu Bay and back (it took about six hours last time I did it).  You can donate here  .

If you want to go further, you can join the campaign and Step Up yourself.

A Canadian is cycling 1000km, a kiwi is climbing a small mountain, an Australian is running his own race for an hour – as far as he can go, a woman from the UK is going for an 8000 step stroll, and an American is dedicating her birthday. It’s completely up to you.

But if you’re stuck for ideas:

  1. Choose an activity – walk, run, cycle (or something else!)
  2. Measure your activity – in time, or steps or distance or destination
  3. Decide if you’re going to do it one day, some days or every day in September
  4. And remember – it’s not what you do, but why that matters the most. You’ll be helping fund crucial research to help women live longer.

You can also follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com

You can catch up with her in the media here.

I wrote about living under the cancer sword here.


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


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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