Sleeper cells preying on the young

Statistics reveal that more young people are succumbing to cancer. How do people in the prime of life cope when these sleeper cells go on the rampage?

Jaason von Bannisseht is a creative, artistic and sensitive Dutch-Indonesian. Despite being gay, his boyish good looks and soft, jet-black hair made him a hit with the girls as much as the boys. “Ahh, isn’t he gorgeous?” I’ve heard women whisper, “I wish I had hair like that!”

After a drawn-out problem over transferred credits at the Belgian university where he was studying, he decided to move back to Holland and finish his master’s degree there. Just as he was finding his feet – with a job he loved at an arts organisation and working on a number of his own experimental video projects – he began having splitting headaches in the spring of 2006.

After weeks of suffering, his doctor advised him to go for a brain scan, or MRI, and it revealed that he had a couple of tumours growing in his 26-year-old brain.

“This all occurred at a moment in my life in which my dreams were coming true after a turbulent adolescence, years of serious setbacks and depression,” Jaason confides. “This aspect of my life has been quite drastically pre-empted. I’ve been forced to exercise an unbelievable amount of patience.”

Cancer occurs when cells in your body start behaving badly, and copying themselves incorrectly. While we all host defective, or cancerous cells of this type in our bodies, our immune system usually keeps them under control. For any of a number of genetic, environmental and lifestyle reasons, this process can go haywire, triggering cancer.

Although cancer is still rare among young people, statistics reveal the incidence is on the rise. This is particularly so when it comes to brain cancer, one of the most deadly forms of the disease. In adults, the number of brain tumour cases in the United States and Europe has increased by up to 40% over the past two decades, with men between the ages of 20 and 40 the most affected.

However, experts are divided on whether more young people are actually succumbing to cancer or whether the difference can be explained away by advances in diagnostic techniques.

“When the neuro-oncologist told me that I had two rather large brain tumours, my first thought was surprisingly logical: there are two growths in my head that don’t belong there, and they’ve got to be removed,” he confesses. “In retrospect, I think this approach was a mechanism to avoid complete panic.”

In addition to the shock it caused Jaason, the news left his friends stunned and in disbelief. We couldn’t quite grasp how someone so young, healthy and vibrant could suddenly discover, out of the blue, that he had cancer – and one of the most dangerous forms of it. We worried about our friend and how this disease would affect his young life.

Of course, cancer is a tragedy at any age. When one of my best friend’s father, who was the picture of good health and had barely ever had a cold, was given six months before the cancer in his stomach would spread and kill him, the concern and grief this sparked in his loved ones was acute, particularly as they watched on helplessly as he wasted away.

Nevertheless, there is an extra element of tragedy when the person is young – it is like they are being robbed of their youth and sapped of the vigour which should define this most productive, and perhaps rewarding, phase of their lives.

For Jaason, relatively good news was to follow after further tests. “The tumours weren’t melanoma – in which case I had a grim 2% survival chance – but, actually, a very rare condition called melanocytoma.”

Being hundreds of miles away from his boyfriend in Belgium and thousands of miles away from his estranged parents living in the United States, Jaason at first felt lonely and apprehensive, despite the support of his friends in Holland. “My parents, closest friends, and other family members were spread out through five different countries. Being so far removed from each other wasn’t easy for any of us,” he recalls.

Being far away at such times is equally tough for loved ones. I recall how difficult it was to be in another country when my mother was diagnosed with breast cancer a few years ago. Luckily for her, her lifelong obsession with good health and self-diagnosis – which irked us as children with our “Mum, don’t fuss” attitude – served her well: she’d found the cancer in the very earliest stages of development.

Although her tumour was malignant and she had to have one of her breasts removed, she didn’t require any further therapy. Concerned at the psychological impact of losing a breast, I suggested reconstructive surgery, which my mum dismissed with her usual absence of vanity – and her obsession with good health. “At my age, I don’t need to worry too much about looking pretty,” she said. “Besides, I’m not having artificial substances pumped into my body.”

Fortunately for Jaason, his boyfriend, Dimitri, decided to take unpaid leave to move up to Holland and support him through the toughest period. “My partner stopped his own life in its tracks and focused on me and my needs,” Jaason explains. “Taking care of an ill person is absolutely draining, and implies that you focus less on yourself. This is not sustainable.”

Even at its grimmest, life can deliver some unexpected rewards. Jaason had been reluctant to inform his parents about his condition. Being conservative Protestants, they had been unable to come to terms with his homosexuality and their relationship was extremely strained the preceding seven years. He feared that if they learnt about his condition, they might not be sympathetic – which would’ve been devastating. But needing some familial love and fearful that he might die before seeing them again, he got in touch.

“My relationship with my parents improved almost infinitely,” Jaason says, recalling a scene in which his conservative Christian parents sat in the waiting room with his queer friends. “An impossible scenario had taken place: radically differing spheres of my life were overlapping. I thought at that moment: if this is possible, then I can survive this operation!”

Jaason’s surgery was to prove to be a profound and turbulent time for him. “I begrudgingly accepted the hand of cards I’d been dealt,” he explains. “Of course, I also thought ‘but why now?’ At some point, however, you realise that this is a fleeting and a rather senseless question.”

On the day of the operation, determined to survive, he refused to bid farewell to anyone, even though the tumour pushing against his brain stem could well have killed him once he went under the knife.

“The cliché of seeing a film of your life history is actually not so cliché. I processed my past, smiled at seeing mental images of being a child at home with my parents and countless other beautiful memories,” he says. “I felt satisfied with life and not afraid to die.”

Jaason survived and his robust recovery was to be tempered by another serving of bad news. A month after surgery, during his radiotherapy, he learnt that he had developed other cancerous growths on his spinal column. “Walking around with two tumours on your spine feels not unlike two time bombs that are ticking away,” he compares. “On the other hand, I could get killed in a cycling accident tomorrow. I suppose I’ve become more sharply aware of my fate and vulnerability.”

For the last year or so, Jaason has been in recovery. In addition to causing him pain and discomfort, the debilitating effects of his radiotherapy have had a profound effect on his work and social life. He can only work on his studies and video projects at a mild pace, and when he overexerts himself, as he is prone to do, he spends days recovering.

On the social side, his condition has cemented and strengthened his relationship with many of his friends. However, it has had a downside. “I feel that I lost some friendships in this process … May be some of my friends in my age group are occupied with realising their own plans and ambitions, and may be feel uncomfortable confronted by disease,” Jaason speculates.

This is not uncommon for young cancer patients. Dr Archie Bleyer, a specialist in adolescent and young-adult cancer at the CureSearch National Childhood Cancer Foundation, explains that young adults are more likely to feel stigmatised, since fewer of their peers have had experience with cancer. “One of the biggest struggles in doing anything medically is to overcome the psychosocial challenges,” he noted.

Even during his recovery, Jaason is trying to get on with life as best he can. At his boyfriend’s recent 30th birthday party, he spent hours DJ-ing and whipping the revellers into a frenzy. Later, we sat together for a long chat in a quieter corner. Lighting up a pipe, he said with an ironic smile: “Can you believe it, some of my friends are upset that I’m smoking? They tell me it’s not good for my health.”

“What? Are they afraid you’ll get cancer or something?” I replied, and he chuckled. Charged up with positivism, he told me about his determination to revive his life. “I’ll soon be turning 28. My dream job and a master’s degree, among other ambitions, are waiting for me.”

“There isn’t yet a cure for my disease, but I can’t let this ‘kill’ me before it actually does,” is his sensible conclusion.

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This article first appeared in The Guardian on 30 November 2007.