From the outside, 32-year-old Adelaide man Hugo Toovey appears to be a typical everyday young Australian.
However, the past 10 years of his life have been anything but normal.
Hugo is a two-time cancer survivor — and the founder of what he calls a “global youth movement”, known as 25stayalive.
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Now a Major in the Australian Army, Hugo was diagnosed with testicular cancer in 2013, aged 21.
He recovered but, just five years after that diagnosis, he was found to have bowel cancer.
Before the first discovery of the potentially fatal disease, Hugo was studying in the Army.
“I was 21, I was fit and healthy, life was great, and I had six months left until I graduated as a lieutenant,” Hugo tells 7Life.
Everything changed on June 18 in 2013.
It was his dad’s birthday and Hugo called to wish him a special day.
In conversation, he happened to mention that he had a lump on his right testicle.
“It was almost a bit embarrassing to say, which is why I think a lot of young blokes can put off going to see a doctor or talking about these things,” Hugo says.
“You do feel a bit vulnerable.”
Hugo told his father the “painless pea-sized lump” had “been there for over six months”.
His dad advised him to see his doctor immediately.
“I went to my Army doctor and unfortunately he found that that lump was testicular cancer and it had spread as a result of me leaving it for six months,” Hugo says.
“It meant I was in for a pretty gruelling couple of years.”
Hugo put off treatment for a few months, “at no detriment” to his health, as the cancer had already spread.
But the delay meant he could still graduate, which, for him, was “a big deal”.
“At that stage, I hadn’t told any friends, any mates or anything, because I didn’t want to let cancer define me or be the reason I graduated,” he recalls.
Six days after his graduation, Hugo began four months of “pretty arduous chemotherapy”.
Over the next 12 months, he also had major surgery, before finally receiving the all clear.
From that point on, “it was just the six-month scans, the 12-month scans and continuing my Army career”, Hugo says.
“I regained my physical fitness and was feeling really good,” he says.
At the end of 2017, Hugo was promoted to Captain and posted to Brisbane with his girlfriend, Amber, who is now his wife.
And in mid-2018, at 26, he received the news he was in complete remission from testicular cancer.
He celebrated the moment with Amber, saying it was a “milestone”.
“I felt a sense of freedom and happiness. I could start to live a pretty normal life,” he says.
“When you go through something like cancer, it controls big parts of your life and really takes a mental toll.”
But just three months later, Hugo noticed his bowel movements playing up.
“I’ve always had a bit of IBS and inconsistency with my gut, but this was more,” he explains.
“I said to Amber, something doesn’t feel right.”
Hugo was sent for a colonoscopy, which found some polyps — considered unusual for his age.
The next day at work, he received a phone call saying a specialist needed to see him.
“You get that sinking feeling in your stomach. You know something isn’t right when you’ve got a specialist wanting to see you,” he says.
“I went in with my wife and the specialist said, ‘Sorry to say, you’ve got bowel cancer’.”
This occurrence was an entirely new cancer, unrelated to his former testicular incidence.
Genetic testing showed Hugo having no cancer genes, and doctors put his second bout down to “bad luck”.
Hugo recalled the doctor saying to him, “The only silver lining is testicular cancer has probably saved your life”.
“As a young 26-year-old bloke, there is no way I would have gone off to a doctor and had a colonoscopy otherwise,” Hugo says.
“It’s the reason I am here and it’s a lesson in early detection, seeing your GP and having checkups.”
Doctors told him the cancer would spread beyond the bowel, so he had surgery to remove his large bowel, entire colon and rectum.
Surgeons created an internal “J-pouch”, designed to collect waste.
Following the surgery, Hugo had to learn how to live with “accidents and incontinence” and how to control his bowel movements.
“That was the beginning of the decline of my mental health as well,” he says.
“The accidents and unpredictability really mentally affected me.
“It was the support of my family and wife, that helped me stay positive.”
Hugo says “some years are harder than others”.
“I haven’t got the best quality of life at times, but you learn what works and what doesn’t,” he says.
“I am prone to bowel obstruction. Last year I had to have a chunk of my small bowel removed — if I had waited 24 more hours, I would have been dead.”
Hugo has already been in hospital twice this year and most recently had a fecal transplant, which is designed to replace his gut bacteria.
He says his priority is his mental health — and that the recent birth of his son has changed his mindset entirely.
“My wife and I were trying to conceive for eight months and were told by some doctors that we may not be able to conceive naturally,” he says.
However, they did, and now have a two-week-old baby, Teddy.
25stayalive
It has been a “whirlwind 10 years and still very much still ongoing” for Hugo, with daily medication and constant pain management.
“I try to not let it control my entire life, and that was the inspiration behind starting 25stayalive,” he says.
“Doing charity work, running workshops and raising awareness, is a form of therapy for me, and it’s making the best of a situation by helping others and really saving lives.
“It changes the way you look at adversity.”
He says 25stayalive is now in the final stages of being registered as a charity.
“Bowel cancer is the leading cancer killer for young people between 25 and 35, and it does impact youth,” he says.
“Testicular cancer is also a young man’s cancer.
“My experience made me realise there is not enough out there for young adults when it comes to cancer information and support.
“For me, there was an opportunity to think, ‘If I can share my story and shed a light on these messages, I can keep the conversation going’.”
Hugo is in the process of organising to share his story with young MPs in Canberra.
He would like to see in place a government system that would put regular health checks on the radar, in much the same way as reminders to have your car serviced.
“My goal is to create a government initiative … for when Australians turn 25, (that) they receive a message on MyGov with a complimentary consultation and checklist with their GP, paid for by Medicare,” he says.
“There would be a range of questions and it would be no different to when you get your car service reminders.
“You’d get a little notification every 12 months, reminding you of your annual checkup.
“If there are any red flags, your GP would then refer you to a specialist.”
Hugo says his dream is that by the time his “son turns 25, I would love that government initiative to exist”.
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