On a February morning in 2020, a few days before the World Health Organisation would issue an official name for a deadly virus that was working its way across the world, Joni van der Leeuw was standing in a dimly lit room, confronting his own mortality, an empty semen jar in his hand.
Given the uninspiring nature of the pornographic material displayed on an old touch-screen computer provided by the Amsterdam University Medical Center, he felt grateful he had taken his smartphone with him. However, acute pain and sleep deprivation – not to mention the awareness of his family and girlfriend’s presence in the next room – made it tedious work.
Joni, then 31, had been sent to have his sperm sampled and stored at the Amsterdam UMC. The day before, he had been given a diagnosis for Stage III testicular cancer. The day after, he would have the first of five rounds of chemotherapy, which has the potential to permanently damage semen production.
“It was probably the hardest masturbation I’ve ever done, but I did it!”Joni laughs. He is now sitting by a window in De Pomp, a former gas station turned into a trendy restaurant in Utrecht. It is a crisp day, November is around the corner and the late morning light is pouring into the restaurant through large glass windows, making Joni squint as he is looking back on the last couple of years.
A Nijmegen native, Joni lives in Utrecht, where he has built a career as a business developer and producer in the video game industry. In February 2021, pathologist Hugo Horlings from the Antoni van Leeuwenhoek hospital (the Netherlands Cancer Institute) emailed Joni, asking him for guidance in his attempt to develop a game that would encourage and reward its players for collecting and providing data facilitating cancer research and prevention. After a series of meetings, Joni brought the digital agency Innovattic in, which resulted in the creation of a game prototype. They are now pitching the project to potential investors.
Joni’s cancer had been treated at the Antoni van Leeuwenhoek, but it was the hospital’s communications department who referred him to Horlings. Back in November 2020, Joni had organised an awareness talk in partnership with the Cancer Institute and the Dutch Game Garden, a Utrecht-based organisation dedicated to improving the video game industry in the Netherlands. Joni conducted this project in the context of Movember, a worldwide annual event created by the Movember Foundation with the intention to raise money and shed light on men’s health issues, particularly “prostate cancer, testicular cancer, and mental health and suicide prevention.” In November, men are then encouraged to grow a moustache in order to spark conversations around men’s health.
Before his own experience with cancer, Joni had vaguely heard of Movember but didn’t really know what it was for. “The first day I was at the hospital, a friend of mine called me and asked if I knew about it,” Joni recalls. “If I had known, that would have helped,” he says sternly. “That could have saved me a couple of months of chemotherapy.”
In July 2019, Joni noticed a hardening of his right nipple. His doctor in Utrecht told him it was probably harmless and advised him to come back if it persisted. A month later, a second doctor told him it looked like gynecomastia (breast development) and suggested he get it checked by ultrasound. A week later, the radiologist confirmed it was gynecomastia and told Joni not to worry about it. So he didn’t.
Later in November, Joni felt like his life had been turned upside down. He had just lost his job and had decided to move to Amsterdam to live with his new girlfriend. Around the same time, he started suffering from deeply uncomfortable cramps in his lower belly, “like my pants were a size too small,” he detailed in a blog post. He swept it under the rug – probably stress.
A month later, not only had the cramps gotten stronger, but the pain had also spread to Joni’s lower back, which severely affected his sleep. When the new year came, he went to see a doctor in Amsterdam, who advised him to follow a healthy diet and exercise more. Joni stifled his frustration and obliged. He had never been one to worry about his health, but he started believing that what was happening to him was a reaction to having overworked. He was heading fast towards burnout and that prospect gnawed at him.
Cancer first crossed Joni’s mind two weeks later, when he felt a sharp pain in his right testicle: it was a small hard lump. However, the doctor said the odds were higher it was something else. He referred him for a urine test and an ultrasound in February.
When Joni saw the look on the radiologist’s face during the ultrasound, he realised for the first time this might not bode well. A trip to the urology department later, he received a diagnosis for testicular cancer. Somehow, Joni was relieved. It wasn’t burnout. “The urologist’s prospect was that it was still very small,” recalls Joni. His right testicle would have to be removed but there was no talk of chemotherapy.
That changed the following day. Joni went through blood tests and a CT scan at the Antoni van Leeuwenhoek. “I saw the urologist there looking at me with an expression of increasing worry,” he recalls. He was told that cancer had metastasized and that it had spread at least up to his lungs. It finally hit Joni like a ton of bricks. After an MRI scan ruled out that cancer had reached the brain, the green light for chemotherapy was given for the following afternoon, but the doctors advised a dazed Joni to visit the sperm bank at the Amsterdam UMC before that, in the event that chemotherapy would make him infertile. It was a short window to think about a future that had just seemed to disintegrate.
Joni was quickly hooked on an IV at the Antoni van Leeuwenhoek. Three days: chemicals during the day, water at night. After a five-day recovery at home, he went on for four other batches – each time five days at the hospital and two weeks at home, all the way until May. “They let you rest only just enough so you can handle the next one, but not too much so that you don’t grow resistant against the treatment.”
Chemotherapy is as aggressive as it is efficient, wreaking havoc across the body. In Joni’s case, a months-long debilitating fatigue made him feel like he was barely alive anymore. He had lost all of his hair, had developed tinnitus – a constant ringing sound in his ear – and he was completely dependent on other people for his basic needs.
By June, Joni’s right testicle was removed along with the tumor that had developed close to his spine. He had been to hell and back. He was now cancer-free.
“I often compare it to Gandalf from Lord of the Rings. Because he dies and comes back and he’s the same guy, but not quite the same guy,” Joni laughs. He is still the same hard-working and passionate man he was before, but he has gained a sense of perspective, especially regarding speaking up when things are not going well.
According to the Antoni van Leeuwenhoek Institute, “testicular cancer is very rare” but is “the most common cancer type in young men between the ages of 15 and 35.” The survival rates are very high – in the vicinity of 90% – especially when detected early. This last part sticks with Joni for many reasons. “Weird belly cramps and pain in the back are signs of testicular cancer spreading to the lymph nodes in the belly. And breast-development in men can be a hormonal side-effect of testicular cancer,” he wrote in his blog. Joni could not possibly have connected the dots alone. Even though he had seen different doctors for different complaints, the fact that none of them had brought up cancer was alarming.
On the other hand, Joni realised nothing in his environment could have made him aware. “I’d never heard about testicular cancer in any shape or form before.” A poster about self-examination in an office bathroom, a November conversation about that weird peach fuzz a coworker is growing – maybe this would have been all it would have taken. “The Dutch game industry is like 80% of men between the age of 20 and 40. So why are we not talking about it?” He remembered his friend telling him about Movember, so he picked up the phone and contacted the Dutch Game Garden. “The best thing I could do was to start the conversation.”
It is Joni’s second Movember as a cancer survivor, and he is not stopping the good work. On top of their game project, Horlings and he gathered a team at the Cancer Institute that meets every week to explore the niche intersection between cancer awareness, gaming, and business. Besides, a documentary series project about cancer survivors getting their first haircut post-chemo is in the works – after Joni himself received his first haircut and decided to have it filmed. That was his Gandalf moment; a giddy and heartfelt day when he realised how wholesome it was to do normal things again.
Another normal thing he experienced recently was being sick again – a bladder infection. “But I have a new doctor now, who I’m really happy with.” She quickly figured out that Joni is a patient she has to keep on probing. This means no more sweeping it under the rug.
“It’s okay to be a little worried about your health,” Joni smiles, as we head out into the open air.