Well-known local photographer Natsky, or Natalie Barovsky, is about to embark on a walk from Canberra to Sydney for a very worthy cause: Jay's Mission Melanoma Walk.

The walk is not a one-day effort, but 11 days from Canberra to Sydney, covering 333 kilometres.

Lismore App readers may remember a story we published on November 5, where the Cancer Institute released a melanoma hotspot map for NSW. Ballina took the unwanted honour of being the number one hotspot, with Lismore number two and Byron Bay number three.

Melanoma doesn't discriminate and is the third most diagnosed cancer in NSW. Close to 5,000 people will be diagnosed in the state in 2024; sadly, 500 people will lose their lives.

Natsky's walk is personal. It is not just raising money for a wonderful cause; she is being driven by the memory of her sister, Melinda, who passed away Christmas Eve 2018.

(Melinda and Natsky. Photo: supplied)

"This walk is about prevention, it's about spreading awareness and it's about raising funds. The guy who organises all of this is Jay Allen; he's also known as the melanoma man; he's a two-time survivor. He's put one free skin check truck on the road, so he just travels around doing free skin checks.

"He wants to get another one on the road. So that's what we're trying to do on this walk: raise enough funds to get that happening. Along the way, we will stop at schools and talk at various places. We'll just talk to people about the dangers of getting a tan."

Natsky believes the cost of a new skin check truck is about $500,000, so it's a big chunk of cash that needs to be raised.

"They've then got to basically have nurses and doctors to man it. They get people volunteering their skills, but they can't always do that. So, it's It's a pretty big thing.

"There are essentially seven full-time workers. So, Jay and then six other walkers, and then there are people coming in and out, so one or two days or, you know, sometimes only a couple of hours, just depending on what they can do. Coming into Sydney, I imagine we'll probably end up with a few 100. By the time we get to Sydney, it gets to be pretty big."

As you would expect, Natsky is in full training mode as the real deal starts this coming Thursday, November 21, from Parliament House.

"It is very time-consuming. I basically just slowly built up. I started trying to just do five k's a day and I'm generally doing between 10 and 15 most days, and I've done a couple of bigger walks as well. But it's also about pace. Because we're on the side of highways, and at times, we've got a police escort, we have to be able to maintain a certain pace. I was supposed to be walking 6 to 7k's an hour. It doesn't sound like much until you try and do it for 15, 20 or 30 kilometres.

(Natsky in training)

"So, I've kind of built up the pace. I haven't really built up the length of all the distance at this point, so we'll see how we go."

The length of each day's walk varies. The first day is 33 kilometres, the longest will be 56 kilometres and the shortest 10 kilometres, which is on the final day in Sydney. The end of the walk is Sunday, December 1, when they arrive at Sydney's famous Bondi Beach.

As for raising awareness about sun protection, Natsky believes there are two camps.

"I find it interesting. You've kind of got pretty much extremes and, look, a gross generalisation, but there are the people who know all about it, and they're all over it. You know, they're wearing long sleeves, and they've got their hats on and all the rest of it. And then you've got the ones who unfortunately tend to be younger, who just think they're invincible.

"We've got some building going on in our backyard at the moment. There's a young, probably 20 or 21-year-old builder, and he's constantly got his shirt off. And I warn him, and he says, Oh, you sound like my mum. I tell him it's because we care. It's bad; you need to be putting stuff on. He doesn't wear sunscreen.

"It's heartbreaking because I've seen what it can do. All various reasons. You know, they think they're invincible, it's not going to happen to me, all of that. Also, the ones who are just lazy or don't care. It's hard. You just want to shake them and tell them to wake up to themselves."

For anyone reading who may take skin cancer flippantly, at the end of this story is Melinda's final letter she wrote about her melanoma journey. It's a stark reminder that the 5 minutes it takes to slip, slop, slap is worth the effort.

Melinda was 46 when she passed away, leaving a 20-year-old daughter and an 8-year-old son.

If you can make a donation to help fund a second skin cancer truck and fund further melanoma research, click Jay's Melanoma Walk link, which will take you to Natsky's page.

"Every 30 minutes, somebody's diagnosed in Australia. So, yeah, it's a pretty big killer."

Jay's Melanoma Walk starts at Parliament House in Canberra this Thursday, November 21 and concludes, with some tired but satisfied bodies, on Sunday, December 1, at Bondi Beach.

MELINDA'S WORDS

Aug 2018

I’m 45 years old, married to an incredible man, Dean, with a wonderful 19-year-old stepdaughter, Summah and a lovely little boy, Tom, who is 7. I work in publishing and have sold books for over 25 years. I grew up on Sydney’s Northern Beaches in Narrabeen. I loved the water, and I used to go to the beach any chance I could. Who knew such an idyllic lifestyle could be the cause of so much anxiety and fear years later?

In Nov 2014, Summah was brushing my hair on a weekend and noticed a weird-looking brown spot on my scalp. We just thought I may have scratched myself but I must have had a feeling as, unusually for me, I booked to have it checked on the following Monday. My doctor thought it looked wrong so sent a punch biopsy off and it came back as positive for melanoma. Interestingly, I visited a skin cancer centre once a year prior to that, and they had never checked my hair – make sure you see someone who knows what they are doing!

I had the primary removed in December 2014, which was a little scary, but I was pretty much okay after that – still in a bit of denial as to how serious it was I think. We found out it had spread to my lymph nodes, though, and I went back for surgery in January 2015 for a neck dissection. That knocked me flat physically and emotionally.

I’d been told I could go back to work 2 weeks after surgery and after the last one, I had no reason to doubt I would be okay. Unfortunately, basic things like putting clothes on, lifting anything heavier than a cup, and simply doing my job became a challenge– one I hadn’t been expecting. I was getting lots of headaches, too. I was diagnosed as Stage 3B, and though I felt I had been lucky, everything had shifted in a way I cannot describe and barely understand myself.

For the next two years, I had quarterly checkups and a PET scan each year. At the two-year mark, I was pretty confident I had dodged a bullet and had finally found myself on a more even keel again. I was so confident that they would tell me that the two-year PET scan would be all clear that I didn’t take anyone to the results. It was a massive shock to hear that they had found “something” on my left lung. They wanted to wait six weeks and do another scan to see what it did.

They were a long six weeks and at the end of it, it was still there and had doubled in size. I was booked in for surgery to have it removed. All went well, which was a relief! Unfortunately I had now “graduated” to Stage 4 metastatic melanoma. With the removal of the tumour I was NED (no evidence of disease), but my chances of this bugger turning up again was somewhere around the 80% mark in the next 5 years.

I started on a drug trial for Nivolumab and Ipilimumab in around May 2017. I wasn’t 100% sure I was doing the right thing, but there were a lot of good reasons for why I decided to do the trial. It’s an incredibly tough decision and one that is very personal. I know my family wanted me to do this – I think because doing something was better than nothing. There are no certainties with the treatment, and my motivations were complex.

Unfortunately, as a preventative measure, it did not work for me. I had minimal side effects until I got a dose of pneumonitis in about August 2017. They treated that with prednisone, and I rejoined the trial a few weeks later. In November 2017, I was very breathless, and they did scans to see what the issue was. I thought it would be another dose of pneumonitis and was expecting another round of prednisone – never very much fun, but it works! Turned out to be fluid on the lungs and three pleural taps later (a fun procedure where they stick a dirty big needle in your back and drain the fluid out of your lung), I was placed on the targeted therapy of Trametinib and Dabrafenib. I had a “sprinkle” of tumours in my lungs this time so they couldn’t operate. I had some nasty side effects in the beginning, but they have settled for the most part now. The biggest thing I deal with is fatigue and a serious case of forgetfulness….

I stopped work in October 2017 because I was fortunate enough to be able to, and it has given me the space to try and focus on getting well and spend as much time with the people I love as I can. Interestingly, that has been more difficult than I thought, but I keep trying.

We now take each day as it comes, and while some days suck, we have a lot to be grateful for. This disease has turned our lives upside down. The physicality of treatment for me has been uncomfortable, and there have been challenges at times. However, the biggest thing to deal with, for me, has been the emotional and mental side. I have a wonderful family and my husband and children mean the world to me. I waited a long time for them, too – I was 33 when I met Dean and Summah, and Tom is still so little. The idea of not being around to see my kids grow up and watch my husband grow old seems incredibly sad and actually makes me feel incredibly angry sometimes. I’ve never thought, “why me?” but I have felt extremely ripped off at times. It can take my breath away if I think about it for too long – so, of course, I don’t.

Unfortunately, the tumours in my lungs and brain have grown exponentially over the last month. The ones in my lung are very large, and there are now around 15 Mets in my brain. So I start a cycle of 10 sessions of radiation from this Weds. I’ll continue with the drugs I’m on, and hopefully, the combo of all of them will start to turn this around. LuckyI didn’t get my hair done this week - apparently, it’s all going to fall out!

I am doing all the necessary financial and legal stuff just incase, and am putting the rest of my energy into believing I will get better.

I am INCREDIBLY well-supported, and if anyone else wants to help and isn’t sure how, I ask that you use that energy to support my support system instead - I can only imagine the toll that this is taking on my family and close friends and feel horrible to be causing them so much pain.

I have been so humbled and amazed by the outpouring of love from all of those around us. We are surrounded by incredible people.I want to thank everyone for the massive amount of generosity you have shown us. I barely have the words to describe how humbled and overwhelmed we are.

Some of you we know well, and some we have never met, but all of you have given us so much. Thanks also for your overwhelmingly kind messages of love and support.

Thank you.

On 27th October 2018, M celebrated her 46th birthday. It would be her last.

On 15th December 2018, Tom celebrated his 8th Birthday. It would be the last time his mama would sing him happy birthday.

On 24th December, just before midnight, I was writing gift tags through tears for Tom’s Christmas presents, trying to mimic his mama’s writing. 3 hours earlier, M had died. There would be no more Christmases.

Be sun-safe. Get your skin checked.