Jono's story: Stuck abroad with testicular cancer

Having been a supporter of our hairy cause for over a decade, Mo Bro Jono had his world turned upside down in 2020 when he found a lump in his testicle. Despite being stuck in a foreign country during a global pandemic, Jono decided to get it checked out – a decision which turned out to be lifesaving. Two years later, and back on Australian soil, he now shares his story with us.

Jono, can you tell us a little about yourself?

I’m 30 years old and was born in Sydney; raised in the inner-west where I still live today, and I’m currently working for the University of Technology Sydney (UTS). On the side, I love music, art, and DJing, as well as teaching myself to produce electronic music. Music and art are vital aspects of my life and I’ll likely be spinning records all the way to the nursing home.

What do you think are some of the challenges facing men and their health today?

At the core of it, I believe most of the challenges that men face today are mental and emotional rather than physical. As a male, it’s often expected that we just ‘grin and bear it,’ push the feelings aside, and adopt a stern persona to avoid feeling vulnerable. Unfortunately, this mentality leads to the internalisation of a lot of pain and the unwillingness to express one’s emotions. It’s a toxic spiral that a lot of men get caught in, and one which can be damaging to our lives and personal relationships.

When did you first notice something was wrong with your testicle, and what was your initial reaction?

I was living in Bordeaux, France when I first noticed something different. Whilst showering, I felt a small hard lump on my right testicle. At first, I didn’t think much of it, but a couple of days later I felt a subtle pain in my lower abdomen as if someone very, very lightly kicked me in the balls. Putting two and two together, I decided to be proactive about it and seek a medical opinion. On reflection, I think subconsciously I knew something was wrong, however, no 28-year-old wants to think that they have cancer, and I was hoping it was nothing more than a vein or tissue. I ended up getting a referral to a urologist who did both a physical examination and an ultrasound, both of which confirmed that it was stage 1 testicular cancer.

At that moment your whole world comes crashing down. Your thoughts run rampant: “What am I going to do? I’m in another country, my friends and family aren’t here, I don’t have a visa, it’s a global pandemic, I can’t get on any flights.”

I cried. I was scared. Yet I knew I was going to be ok. I’m also extremely lucky and grateful to have an amazing partner who was there to support me throughout, organise the appointments, and navigate the French medical system.

Can you take us through your diagnosis and treatment?

After the appointment with the urologist, I was booked in one week later to have my right testicle removed – which is called an orchidectomy. It’s the first step to ensure that the cancer doesn’t spread. The operation itself takes roughly an hour and you walk out of the hospital the same day. Pop some painkillers and off you go! It was definitely painful but after two weeks I had almost full mobility. In the meantime, I had done several other tests which included blood, lung capacity, and fertility. Operations and chemotherapy run the risk of affecting both your lungs and fertility, so I opted to freeze some of my sperm as a back-up plan. Having one testicle doesn’t affect your testosterone levels (or your sex life) and you can still function as you normally would.

It turned out cancer cells were still floating around in my body even after the operation, so the next stage of treatment was chemotherapy over the course of three cycles (1 week on, 2 weeks off). These drugs were delivered intravenously over a three-to-four-month period. It’s bearable at first, but as the chemotherapy begins to accumulate in your body and your cells stop dividing, clumps of hair begin falling out, your appetite begins to wane, a metallic taste kicks in, and the nausea begins to take over. After three months, you’re exhausted, a few kilos lighter, and bald. As crappy as it was, it saved my life!

Can you talk a little about going through cancer in another country without your support network?

Being told you have cancer while on the other side of the world, during a global pandemic, isn’t the easiest news to digest. I was in a foreign country, in a foreign medical system, with an expired visa. I thought I was screwed. But the hospital staff and doctors at St André, Bordeaux were phenomenal, and their level of care was amazing. I definitely believe I was in the right place at the right time, and my amazing partner helped organise all the appointments and kept me company every day I was in hospital. Her French is leagues above mine and without someone doing the talking I probably would’ve had to do it all in sign language!

Why do you think you were so comfortable in talking about your health, and didn’t shy away from getting checked straight away?

I think testicular cancer is a somewhat sensitive topic for a lot of men. The idea that one of your testicles (or both) are now defunct and need to be removed is frightening, as a lot of men shape their identity around their balls. Even rhetoric statements like ‘you don’t have the balls mate,’ can have an adverse effect on a male who may be going through testicular cancer, or someone who’s noticed a lump but doesn’t want to speak openly about it out of the fear of feeling emasculated.

By talking about issues like these, I hope to inspire others who may be going through similar circumstances, so that they can speak openly about the physical or mental issues that might be plaguing them. Conversations around men’s health should be commonplace, and we should all actively work towards making that happen.

That said, I’ve found that there’s a disconnect between what I’m able to describe to friends and family about my experience, as they weren’t there to witness me go through it. I guess it was a journey that I had to undertake at that time, to help further my understanding of men’s health and to develop and grow from.

You’ve been a supporter of Movember for a long time, why do you think the Movember message/work is so important?

Without organisations like Movember, there wouldn’t be a platform that enables men to share their experiences and vulnerabilities in the hopes of inspiring others to talk about theirs. It’s given me the opportunity to talk about my experience, so that others who may have gone through or are going through the same thing, find comfort in a shared experience. We all go through hardship in some way, shape, or form, so why not help each other through it?

What is your main message when it comes to men’s health?

The message I want men, especially young men to take away from this, is to talk about their experiences more, whether positive or negative, and to be proactive about their health, whether mental or physical. It’s so important that we begin to discuss these issues openly, not only to be better men, but to be better partners, friends, or fathers.

Sometimes life throws you curveballs and you find yourself in a situation that you otherwise wouldn’t like to be in. However, to be able to talk about it and seek support shows tremendous courage, and will help ease the load that you carry inside. Life’s experiences are meant to be shared!

Despite the unfortunate experience I’ve had, I think it’s helped me grow as an individual. Along with this, talking about it has allowed me to better process my experience and in turn, help those who are going through similar struggles!

A year and three months on from his last dose of chemotherapy, Jono’s now back in Sydney and in good health, going for regular check-ups to make sure the cancer hasn’t come back. We’re so lucky to have people like Jono speaking up about their experiences, because as we know, testicular cancer is the most common cancer in young Australian men. Movember’s aim by 2030 is to halve the number of men dying from testicular cancer, and to halve the number of men facing serious ongoing side effects from its treatment.

One of the ways we’re doing this is through our Nuts & Bolts program, an online tool that provides support post-diagnosis and beyond. The site also provides the opportunity to pair up with a guide – someone who’s been through testicular cancer and knows what you’re going through, and who’s there for you every step of the way.

Click here find out more about the work we fund in testicular cancer, and most importantly, as Jono says, remember to check your balls on a regular basis – and if something doesn’t feel right, make sure to get it checked out.