Hugo Toovey, Self Proclaimed “One Nut, Half a Gut,” Founded 25StayAlive to Encourage Young People to Be Proactive With Their Health

Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Hugo Toovey, who founded 25StayAlive. Enjoy!

In 2013, I was a young, fit, and naive 21-year-old. I was in my final year of Army training at the Royal Military College, Duntroon, Australia. My life was, by all accounts, relatively normal.

That was until it took an unexpected turn in June, when I received the unexpected news that I had testicular cancer.

After leaving the doctor’s room, I smiled at the receptionist, walked to my car, and burst into tears. I felt alone and lost. I felt so vulnerable. Knowing I had a long journey ahead, I was frightened.

Once I came to terms with everything, I went off for surgery to remove my cancerous testicle. I did find it mildly amusing when I was picking out which prosthetic testicle I would have. There were different makes and sizes. I remember my surgeon telling me that some guys choose to opt for a bigger size… I just told him to match it up with the other guy. (Editor’s Note: I personally wanted a BB8-shaped one, but Disney wouldn’t let me so I went au natural.)

For the majority of testicular cancer cases, surgery to remove the affected testicle is usually the only treatment that is required.

That is why the importance of early detection is crucial… and something I soon learned the hard way. Unfortunately, the cancer had spread to my abdominal lymph nodes.

I still managed to graduate as a Lieutenant, but my Army career was put on hold. I commenced four months of intensive chemotherapy back home in Adelaide.

It was a bittersweet feeling. On one hand, I had just graduated as a Lieutenant in the Australian Army after four years of arduous training, but on the other hand I was about to undertake months of chemotherapy.

Lying in hospital with my exceedingly good-looking bald head, my pale, skinny frame, and the constant feeling of being sick and fatigued, was not exactly where I thought I would end up… especially as a 22 year old who had just graduated as an Army Officer. I wasn’t your typical “cancer patient”.

After chemo, I still required RPLND surgery – an 8 hour, very invasive operation to remove all my abdominal lymph nodes.

After weeks in the hospital I was finally discharged, and I embarked on a very lengthy recovery and rehabilitation journey.

It wasn’t until the end of 2017 when I was promoted to a Captain in the Army. It was a huge milestone in my life, and I was extremely proud. I was fit, healthy, and most importantly, I was happy.

The next milestone came in June 2018 when I had my 5 yearly scan…which was all clear! This felt like even a greater achievement than being promoted to Captain, as I was finally in complete remission.

It was a strange feeling, but I felt free…and for the first time in a very long time, I felt normal again.

Unfortunately, this feeling was short lived.

Two months later, after having a routine colonoscopy, my whole world came crashing down yet again when I heard some unwanted, yet somehow familiar words from the doctor. “I am sorry to say, but you have bowel cancer.”

My head was spinning. Bowel Cancer? But I aren’t too young? Didn’t I just have a clear scan for testicular cancer? I remember literally asking the doctor if he was sure he had the right person… unfortunately he did.

I walked out of the doctors rooms and completely broke down. It was so much to take in emotionally and I was devastated. Once I had time to process everything, I broke the news to my family. Actually saying the words “I have bowel cancer” to my family, whilst fighting back the tears, was one of the hardest things I have done.

I was booked in for surgery two days later. The surgeon did an amazing job and removed about 90% of my colon, which was riddled with cancer. (Editor’s Note: I guess this would make it a semicolon now?)

After a week in recovery, I appeared to be recovering well, and the day had come for me to be discharged from hospital.

Yet life can be full of surprises, and once again, life had another shitty (pun intended) bump in the road.

Just as when things were starting to look up, I started experiencing the most excruciating pain I have felt in my life. The head nurse soon realised it was serious, and called the emergency button. Before I knew it, I was back under the knife for emergency surgery.

My remaining bowel had somehow severely twisted and kinked. My surgeon hadn’t seen something so extreme for over 15 years, and the head nurse later said that after being in the ward for over 20 years, this made her ‘top 3’ most memorable moments. Not exactly a list anyone wants to make. But hey, I made it.

I spent the next three weeks in the hospital not being able to eat or drink, and I lost over 20kg (roughly 45 pounds). I never admitted it at the time, but I was definitely depressed. Every day that went by, there was no improvement. I was literally waiting for my stomach to “wake up”.

Like anything in life, the fear of the unknown can often be the most difficult part.

Eventually the day came when I was discharged. It was honestly a day that I did not think would ever come, and there was no greatly feeling than leaving the hospital with my beautiful partner, Amber.

It has now been about 9 months since being in the hospital, and although not every day is perfect, I am doing pretty well. I am still on active treatment, I still require colonoscopies every six months for the rest of my life, and I still have days were I struggle mentally. But what I eventually realised, is that I am actually one of the lucky ones. Sadly, there are too many people that eventually succumb to this terrible disease.

If I have learnt anything over my two battles with cancer, it is the importance of early detection.

What I learned from putting off seeing a doctor with my testicular cancer, ended up saving my life with my bowel cancer. I am more passionate than ever to share my story and raise awareness to other young people to realise they aren’t invincible. Something like cancer doesn’t discriminate, and I am living proof of that.

Since sharing my story, I soon realised that there were so many other young people out there who had been affected by cancer. There seems to be so much emphasis on our health when we turn 50, almost as though that’s when we should start taking our health seriously.

But why 50? When I was diagnosed with testicular cancer at only 21, I knew NOTHING about cancer, let alone testicular cancer. Yet testicular cancer is the most common cancer in young men aged 16-30.

When I was diagnosed with bowel cancer at 26, I knew NOTHING about bowel cancer. Yet bowel cancer is one of the fastest growing cancers in young adults.

That is when I started 25StayAlive.

The mission of 25StayAlive is, “25 is the new 50…know your body, know yourself. Being proactive and in tune with your body at a younger age, might just save your life one day.”

Although ’25’ symbolises a typical young adult, and encompasses all ages, I would love one day for there to be a government initiative whereby when you turn 25, you are sent a full blood test in the mail. 25StayAlive aims to make you think differently. No different to when you turn 50 and you get sent a bowel cancer screening kit. (Editor’s Note: I am not sure if this is an Australian thing or not – Stay tuned!)

Similarly, the 25StayAlive Podcast was created to give other inspirational people a platform to share their stories.

One of those stories was from an amazing young lady called Dahlia, who is quite literally facing bowel cancer with a smile. I loved everything about her, and soon enough, she was on board as the co-host! We both experienced the devastating effects of cancer first hand. By sharing our own experiences, we hope to educate and inspire others from all walks of life. Life is precious, and you don’t want to take it for granted.

The 25StayAlive podcast isn’t all just about cancer either. Although we have both been affected by cancer, and we do get a lot of cancer survivors on the show, we have also interviewed a young quadriplegic, a war veteran who lost both of his legs, an AFL athlete, and a positive psychologist.

A lot of the topics we discuss can be quite intense, but there will always be a lot of laughs, and every episode finishes on a positive.

It has been so rewarding to not only meet such incredible people, but to receive messages from listeners who have said how the podcast has changed their life. It makes what we do worthwhile when you realise you are making a difference.

I hope these endeavors encourage a young 25 year old to start actively thinking about their health, and puts them in the mindset of looking after themselves. We shouldn’t “fear” going to our doctor.

There is no shame in seeking help.

Be sure to connect with Hugo by visiting him at 25StayAlive on Facebook, and Instagram and Twitter @25stayalive. Listen to the 25StayAlive Podcast on Apple Podcasts and Spotify.

Know someone (or even yourself!) who is supporting TC awareness and would be willing to share their story? Drop their name, contact, and why they should be featured into this Google Form and I’ll reach out to them and/or you!

Until next time, Carpe Scrotiem!