Milne muses

08/05/2022


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


Maya muses

08/05/2022


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


Sunday soapbox

08/05/2022

Sunday’s soapbox is yours to use as you will – within the bounds of decency and absence of defamation. You’re welcome to look back or forward, discuss issues of the moment, to pontificate, ponder or point us to something of interest, to educate, elucidate or entertain, amuse, bemuse or simply muse, but not abuse.

 I love my mother for all the times she said absolutely nothing…. Thinking back on it all, it must have been the most difficult part of mothering she ever had to do: knowing the outcome, yet feeling she had no right to keep me from charting my own path. I thank her for all her virtues, but mostly for never once having said, “I told you so. – Erma Bombeck


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