Hugo Toovey: Living with “one nut and half a gut”
Two-time cancer survivor Hugo Toovey shares his recovery journey and how he’s now dedicating his life to helping others.
By Hugo Toovey, two-time cancer survivor and founder of 25 STAY ALIVE, a global movement to encourage young people to be proactive with their physical and mental health.
In 2013, I was a young, fit, and naive 21-year-old in my final year of army training at the Royal Military College in Duntroon, Australia. My life was, by all accounts, relatively normal.
That was until it took an unexpected turn in June, when I received the news 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. I felt lost. I felt so vulnerable. I knew I had a long journey ahead, and at the time, 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, and 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.
For most testicular cancers, surgery to remove the affected testicle is usually the only treatment that is required. That’s why early detection is crucial – and something I 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, and 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. 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 took the next couple of years to completely recover and build my strength and fitness back. My body had been smashed by the chemotherapy, and my core strength was severely impacted by the open abdominal surgery.
Fortunately, I had the support of the Army, and my goal was to be physically and mentally fit enough to be medically upgraded for deployment overseas. It wasn’t until the end of 2017, when I was finally medically upgraded, and this coincided with a promotion to Captain. It was a huge milestone in my life, and I was extremely proud.
My partner and I moved to Brisbane, and we embarked on a new journey together. The next major milestone came in June 2018 when I had my 5-yearly scan… which was all clear! 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? I am too young? I just had 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 doctor’s rooms and completely broke down. I was devastated. It was so much to take in emotionally.
Once I had time to process everything, I broke the news to my family. Saying “I have bowel cancer” to my family, while 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. I guess you could say I now had a ‘semicolon…’
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 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 (45 pounds).
I never admitted it at the time, but I was 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 finally discharged. It was honestly a day that I did not think would ever come, and there was no greater feeling than leaving the hospital with my beautiful partner, Amber.
I wasn’t out of the woods just yet, and I required 6 months of active immunotherapy treatment. Unfortunately the treatment did not do its job, and I still had signs of dysplasia in my remaining colon. The next step was to have the remaining 10% of my colon removed and my entire rectum. Deep down I knew this day would come, and by removing the rest of my large bowel, it meant that I would never get bowel cancer again.
I found myself back in hospital, and after another lengthy surgery, I woke up with an ileostomy bag (stoma) aka Ted. It was quite difficult to adjust to my new “normal”, and it took me a few days before I could even look at Ted. The next few months went by, and I slowly learned to accept Ted. We developed a love-hate relationship, and although some days he was quite temperamental, I reminded myself that he essentially saved my life.
In April 2020 I said farewell to Ted, and I had what was hopefully my last ever major surgery. My surgeon reversed the stoma, and created a ‘j’ shaped pouch from my small bowel. Over time this j-pouch will expand and act as my large bowel. The human body is pretty remarkable.
This surgery was complication free (better late than never), and I am now recovering at home and doing pretty well. I will never have “normal” bowel movements again, and my life will forever be different, but what I eventually realised, is that I’m one of the lucky ones. Yes I might be missing a testicle, an appendix, all my abdominal lymph nodes, my colon and my rectum, but I am still here.
If I have learnt anything over my two battles with cancer, it’s the importance of early detection.
What I learned from putting off seeing a doctor with my testicular cancer, ended up saving my life with bowel cancer.
I am more passionate than ever to share my story and raise awareness so other young people realise they aren’t invincible. Something like cancer and mental illness doesn’t discriminate, and I’m living proof of that.
Since sharing my story, I realised there were so many other young people out there who had been affected by cancer and mental illness.
That is when I started 25 STAY ALIVE
25 STAY ALIVE is a global movement on a mission to educate and inspire the younger generation to be proactive with their health. There seems to be so much emphasis on our health when we turn 50, almost as though that’s when we should start taking it 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 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.
Although ‘25’ symbolises a typical young adult, 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. No different to when you turn 50 and you get sent a bowel cancer screening kit. Along with this blood test would be a list of local GPs, to encourage you to book in for a check up. Through my own research, I discovered that so many people in their 20s don’t actually have a regular GP. It is so important that you build up a good relationship with a GP so you feel confident to go and see them.
Similarly, the 25 STAY ALIVE Podcast was created to give other inspirational people a platform to share their stories.
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.
I hope these endeavours encourage young people to start actively thinking about their health and puts them in the mindset of looking after themselves. We shouldn’t fear going to the doctor.
There is no shame in seeking help.
The 25 STAY ALIVE Podcast is available on Apple Podcasts and Spotify. You can follow 25 STAY ALIVE on instagram @25stayalive