Mandy McLean will "shed the dreads" to raise money for brain cancer research after she lost her soulmate Scott to a second brain tumor. KATRINA LOVELL reports.
After the miracle they had prayed for gave Scott McLean 21 years the doctors said he wouldn't have, he was diagnosed with a second bout of brain cancer.
But this time it was a different kind, in a different location which acted differently and made Scott's battle more challenging.
It has been more than two years since Scott lost his two-and-a-half-year cancer battle but his wife Mandy still wants to give back and is raising money for Carrie's Beanies 4 Brain Cancer.
Mandy had long wanted dreadlocks and was something she started growing and having professional done in the years before Scott became ill again. Now she is "shedding her dreads" to raise $20,000.
It's a big target but a fitting tribute to her soulmate who she described as a "big teddy bear" but looked like a bit of a "rough nut".
The couple met at church camp when they were young and, living at opposite ends of the state, they spent a year writing letters and talking on the phone before they started going out in the Christmas of 1994.
But less than two months later, Scott was diagnosed with a brain tumour at the age of 23.
He was given three months to live - a year at best, Mandy said. They were told the glyoblastoma multiforme he had was "one of the worst ones you could get".
Scott was also told he would be paralyzed down one side and may have to learn to walk again with the aid of a stick and lots of physio, she said. On March 30, 1995 he underwent surgery but after 12 hours was out of bed and walking unaided.
"They had to take part of his brain out. It was in his cerebellum. They had left a part of the skull out because they knew they would have to go back in again because of the type of tumour it is. It's just really aggressive and keeps coming back," Mandy said.
Only about two per cent of people live a couple of years with the type of tumour he had, she said.
Scott was not quite half way through his radiation treatment when he decided he'd had enough. "He went and told them he wasn't having more and of course they freaked out. To them he was as good as dead," she said.
Instead of resting in bed, he went to a prayer meeting at church - and that's where he decided to put his focus and trust.
Mandy and Scott married a year to the day after his surgery and for 21 years he had "not so much as a twinge" from the tumour although, she said, it took him about 10 years to fully recover from the surgery and radiation because it was like an acquired brain injury.
"He wasn't meant to live long enough for us to get married," Mandy said.
It was almost exactly 21 years later that Scott started having issues with his balance and noticed that his speech was starting to slur.
After a brain scan, the doctor called to tell them to come straight into emergency where he was flown to the Royal Melbourne Hospital. That was New Year's Eve 2015, and on January 6 they operated.
Mandy recalls doctors telling her it was "such an unusual tumour in an awkward position". Three different oncologists had a different opinion on what kind of tumour it was. "They didn't know what it was because they hadn't seen anything like that," she said.
At first doctors assumed it was the same type of tumour he'd originally had, she said. But they then found it was different and he was diagnosed with a stage three glyonuronoplastic tumour - which was in another part of his cerebellum to his first tumour - and this time was also infiltrating his brain stem.
Mandy said doctors also tried to say that Scott's first tumour wasn't what doctors at the time had thought it was, because otherwise he wouldn't still be alive, but after getting hold of the original medical records they found it was a glyoblastoma multiforme.
She said doctors had tried to explain it away but for the couple it was their miracle from God that gave them 21 years they "weren't meant to have".
Scott - a keen cyclist and power lifter - didn't bounce back from his second surgery like he did the first time. He had to learn to walk again and, when after seven weeks he was starting to get more tired than he should, scans showed it was growing again.
He was readmitted to hospital where he stayed while he underwent his daily radiation treatment. "It took its toll. Scott was normally an easy-going placid guy. It was very rough," she said.
But mixed in with the ups and downs of treatments was some really fun times, Mandy said. "He still had his fun sense of humour."
After the treatment, Scott was able to return to Warrnambool where he spent about eight weeks in hospital undergoing rehab and starting chemo.
"Chemo really knocked him big time. It sent him right backwards. He was doing really well and then the chemo really knocked him, so much so he couldn't even weight bare to transfer from the bed to the wheelchair," she said.
But after a week she was able to get the aids she needed to help him finally come home. They started to see progress when the chemo started working but then "all of a sudden it stopped working".
Mandy said there wasn't really any more treatments available, apart from a trial that was going to be really expensive and came with no guarantees it would work. "Scott decided he didn't want to do it," she said.
From there he started to deteriorate slowly again as the tumour "infiltrated" his brain stem and started to affect his functionality.
Scott, a social worker who had worked with the city's homeless, had also worked as a personal carer and was now on the receiving end as he lost his ability to do more and more things. But on the weeks that he could, he would still make the effort to get to church on a Sunday.
"Everything was exhausting for him," she said. Even trying to speak became exhausting as he struggled to find the right words to use. Thankfully he had such a big vocabulary, if he couldn't think of the right word he'd wanted he could pull out smaller words that didn't take as much effort."
Mandy said she was thankful she had her faith to lean on to help get her through the tough times. While this time around there wasn't a miracle cure, there were lots of answers to prayer, she said.
Their shared faith in God, and knowing they would one day see each other again, Mandy said, made it easier to say goodbye. On February 12, 2018, Scott lost his battle.
The grief left Mandy in a brain fog for a long time but in her words "I'm back in my groove". "I'll never be back to the old me. It changes you but I feel more me again which is a nice feeling finally".
In the "mad, crazy year" that is 2020, Mandy has started work again at Avalon Nursery where she will hold the fundraiser on December 12 from 5pm. She will lose her locks at 7pm and there will be other fundraising activities on the night.
Her dreadlocks, which she has been growing for six years, will finally come off. Her most recent dreadlocks were done the week before Scott passed away.
Ty Dance, from Alchemy on Morriss, will do the honours although people can pay for the privilege of cutting off a dreadlock.
To donate go to: donate planet.com, search for Shedding the dreads and follow the links.
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