Melanoma: Kiwi woman fundraising for cancer treatment after losing her mum to the disease

Sarah Barr pictured with her husband Jake and children Emma and Hugo. Photo / Alexa Doula

Hawke’s Bay mother of two Sarah Barr, who lost her mum to melanoma as a child, is now undergoing treatment for the disease. Givealittle pages and a 24-hour swimming event have helped raise thousands of dollars for cancer drug Keytruda, which isn’t funded for melanoma in New Zealand. Here she shares her story with the New Zealand Herald and urges others to stay vigilant with their skin checks.

Sarah Barr, 35, has been “really careful in the sun” ever since she lost her mum to melanoma when she was a teenager. Now a mum herself to Emma, 4, and Hugo, 1, she’d raised concerns about a mole on her arm with several doctors, who told her it was nothing to worry about.

It wasn’t until August last year, when she took Hugo, then 6 months, to the doctor for an ear infection that the alarm was raised.

“That doctor was like, ‘What’s that on your arm?’ I was like, ‘I don’t know, everyone else said it was fine’,” Barr tells the New Zealand Herald.

This doctor saw the warning signs and booked Barr in for another check. A week later, the diagnosis came - stage 3 melanoma - but it wasn’t exactly a shock.

“I think deep down, I knew, really,” Barr admits. “But I was worried because I didn’t want my kids to grow up without a mum, especially since they’re so little. I didn’t want history to repeat itself, so I was mainly more scared for them than myself.”

Barr lost both her parents at a young age - her mum to melanoma - and says her own diagnosis marked a moment of “full circle grief”. Now, she hopes her immunotherapy treatment will help ensure her children get to grow up with their mum.

She says her diagnosis has helped her to heal from her own childhood grief. “It’s given me the opportunity to grieve properly, which has been really hard, but also just so important for my mental health.”

Barr, who lives with her children and husband Jack in Hawke’s Bay and owns pole dancing studio Altitude, says life now is not so much about fighting her cancer, but learning to “work with it”.

“As crazy as this sounds, it’s a bit of a gift,” she says, adding that it’s helped her reconnect with old friends through fundraising efforts.

“It put me back in touch with people who were so important to me at that time in my life. It’s also healed me in a way. After my mum died, I felt - as a kid, you feel so alone, you don’t have the support system that you really need.

“To have to fundraise, which hasn’t been easy, has also helped heal that part of me - it’s overwhelming at the same time that it’s been challenging.”

She had surgery to take the mole and a “massive chunk” out of her arm and remove some lymph nodes, where the cancer had spread. The next step was to start treatment with Keytruda, an immunotherapy drug that is funded elsewhere around the world, but not in New Zealand.

Funding for 13 new cancer drugs was part of National’s election campaign last year, but not included in the recent Budget announcement.

Barr now goes for infusions every three weeks that leave her “extremely tired and nauseous”. A year of treatment, comprised of 17 infusions, costs $75,000, not including around $2000 per infusion in fees for scans and blood tests.

She believes that “the support that I’m getting is just as much a part of the healing as the drug that I’m having”.

Sarah Barr took part in a 24-hour swimming event to help fundraise for her cancer treatment.

Among others, that support came from her former swimming coach Peter Burgon, who still works at the same swim club Barr was part of 20 years ago and wanted to do something to help her. He then reached out to the club’s president, Dave Princeton, about organising a 24-hour swimming fundraiser at Christchurch’s Jellie Park, where Barr used to train.

Princeton had to “jump through many hoops” to make the event happen, going through local council, organising lifeguards and security and staying for the entirety of the event.

Friends Belinda and Danielle “rallied everyone together”, Barr says. “They organised it all and made sure people showed up, did the Givealittle page, all the posters.”

Just under 50 swimmers took part, each swimming for half an hour at a time, and the event raised around $10,000 in 24 hours. “I couldn’t believe it.”

Barr herself briefly took part in the swim, while husband Jack watched on with their children and close family friends, which she says was “really, really special”.

Her husband, she says, is “keeping it together” and is able to work from home while she undergoes treatment, while her daughter’s kindy teachers have also been “so supportive”.

“They have been just amazing with her, offering to take her to kindy if it’s my treatment day.”

Looking ahead, she says the treatment is going well so far, adding, “I’m confident that once this year is up, I won’t have to do it again.”

Barr urges others who think they may have signs of melanoma to get a second opinion if they’re not sure.

“At the end of the day, if you have a mole that you’re not sure about and a doctor or someone says to you, ‘Oh, it’s fine, don’t worry about it’ - it doesn’t hurt to take it out and get it tested.”

“You know your body, if you feel like that’s not right, advocate for yourself. If you can’t advocate for yourself, find that friend that you have that’s really good at speaking up about stuff - get them to speak up for you.”

You can find the Givealittle page set up for Sarah Barr here.

If you're concerned about any spots, see your GP.

Melanoma in New Zealand

Along with Australia, New Zealand has one of the highest rates of melanoma in the world. More than 6000 Kiwis are diagnosed and around 300 die from melanoma each year, according to Melanoma New Zealand

“If melanoma is recognised and treated early enough, it is almost always curable,” a spokesperson for Melanoma NZ tells the Herald.

“The first sign is often a change in the size, shape or colour of an existing spot, or the appearance of a new spot. If you have concerns, contact your GP or other specialist without delay.

“Doing a regular self-check of your skin is important and a regular full body skin check by your GP, or a dermatologist, surgeon or plastic surgeon is also recommended.”

According to Cancer Society New Zealand, more than 90 per cent of skin cancer is caused by too much exposure to UV rays from the sun.

Anyone can be diagnosed with skin cancer, though having fair skin, a previous history of skin cancer, light hair and burning easily in the sun are all risk factors. However, sunburn at any age increases your risk of getting skin cancer later in life.

While most of us understand how to stay safe in the sun, “this does not necessarily translate to New Zealanders adopting good sun-smart practices consistently”, according to Cancer Society researcher Bronwen McNoe.

“The good news is skin cancer, including melanoma, is the most preventable of all cancers and we know we could prevent around 90 per cent by our population routinely adopting good sun protection behaviour,” McNoe tells the Herald.

“Sun protection needs to be done consistently from about September to April - the best form of protection is to use a combination of sun protection practices.”

Those practices include using sunscreen, wearing clothing with good coverage and sunglasses, and seeking shade.

Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in telling Kiwis’ real-life stories, money-saving hacks and anything even remotely related to coffee.