Byron and his fight against cancer
Last autumn, I met Byron. A young man who told me he wanted to organize a 12-hour DJ set in aid of Zoé4life.
I was very moved by his story, and he agreed to let me write down his testimony. He also explains what motivated him to support Zoé4life by DJing for 12 hours
It's May, Byron is 24 years old and three weeks out of cancer treatment. He tells me:
"Immunotherapy in itself is not a heavy treatment compared to chemotherapy. But I find it hard to concentrate and I'm very tired. This fatigue is inexplicable. I get up at 10 a.m. after a 12-hour sleep, and sometimes I have to go back to bed at midday. People think immunotherapy, which boosts the immune system, is like a shot of Red Bull. I should be on fire, but that's not how it works. It's just the opposite. People don't understand. They don't understand that sometimes I want to go out with my friends, have a drink or go dancing, but I can't concentrate, and I can't work."
When life turned upside down:
Byron earned his CFC in sales and then went off to military school. He dreamed of graduation. He was good and had every chance of success.
One day, he noticed a very swollen ganglion on the side of his face, and his ear hurt. After taking paracetamol for two days and not feeling any better, he went to see the army doctor, who recommended further tests.
A month later, he went to see an ENT specialist in Morges, who told him that he would need further tests at the CHUV. That was all that was said.
'But this doctor called the army doctor and told him I had cancer; skin cancer. He didn't say anything to me, though. And it was the army doctor who told me I had cancer..'
' They wanted me to leave the army, but I was afraid of finding myself alone. I was well looked after there with the social worker who helped me a lot. I asked to stay at least until the operation, which they agreed to. In the meantime, I had to go to several appointments at the CHUV.
Major surgery:
Byron underwent surgery in September 2021. He was 22 at the time, and the operation took 10 hours. The doctors removed an entire chain of ganglions from between his ear and chin. The mobility of his left arm and neck was severely reduced, and he lost his voice for a long time.
Byron then had a numerous appointments until December. Having barely recovered, he underwent another eight-hour procedure as the salivary glands had been affected, and some lymph nodes had to be removed.
"When I woke up, I felt no pain but I had staples all over my neck. It was very shocking and really ugly.That episode stuck with me. Seeing myself like that was very frightening. I spent four days in hospital, then a week later I started with the first dose of immunotherapy as an outpatient.
"After the operation, I lost my voice again, and the mobility of my arm and neck on the left side was reduced to a minimum. It was very tiring trying to speak. My friends and family were focused on the scar, but they couldn't see that I wanted to speak. I had to raise my hand to get everyone to be quiet so I could try to say a few words."
Looking at Byron, I see that his scar runs from his ear to his chin, but it's subtle. He tells me that the facial nerves were a little affected, as if paralyzed, but that it's healing well. I didn't notice anything during our discussions.
Immunotherapy ran from December 2021, every three weeks, until May 2023: 18 doses every three weeks.
"At first, I felt out of place in this adult world. I still think of myself as a child. Even though I was 22 when I was diagnosed, I'm still my parents' child after all. When I look at what my cancer did to those around me... my parents would come with me and have to take time off work. I saw what it meant for those around me. It wreaks havoc. Like a tsunami for uncles, aunts, grandparents, it affects everyone. I don't think I handled the disease too badly, emotionally. But I wonder how I would have reacted if I'd been younger. It was when I thought of the children who were going through the same thing as me, and the impact on those around them, that I thought of supporting Zoé4life with my DJ Set."
At first, Byron's parents came along while he got his bearings, but then he told them he wanted to go it alone—he wanted to protect them. He nevertheless agreed to be accompanied for important appointments, but not for immunotherapy treatments.
Byron explains that it was very difficult for the medical staff to give injections. His whole body would freeze up whenever it was time for a jab or a blood test.
"The first thing you think of when you think of cancer is death. Hypnosis helped me a lot because my body equated CHUV with SICKNESS. Hypnosis helped me to understand that CHUV meant HEALING. It was much easier to have injections after these sessions."
"Sometimes, what was frustrating was when you arrived at the CHUV for your treatment but the blood values didn't match the results. You'd have to leave without the treatment. Then you'd have to wait until your body recovered and the values were good enough. I understand it's for my own good, but it's annoying because I just wanted to get on with it."
"So my life was set by appointments at the CHUV and I had to learn to listen to my body. This fatigue, which is always there, is really difficult to manage. People may think I don't want to work, but it's quite the opposite. I'm 24 years old and I'm on social security with CHF 700 a month to live on!
"During the treatments, I took refuge in music and video games. Everyone was working, so I was alone and had to keep busy. Video games allowed me to identify with another character who wasn't sick. It took me out of my everyday life. "
Music was liberating for Byron.
Whatever his mood or physical state, music has helped him a great deal. He decided to get involved with the Back2Noize radio station, where he found a wonderful team who welcomed him and taught him what they knew. He says he's learned a lot, especially now that the station has gone DAB.
That's when the idea of a charity live show was born. " I'm a DJ, I love it and I wanted to tie my passion to a cause, so I thought of Zoé4life." This became a goal for Byron, and he contacted several DJs, who agreed to take part in the event. Partners had to be found, and he was very touched to see that the biggest clubs in French-speaking Switzerland responded positively to his request.
Byron wants to work
Unfortunately, Byron's body is so tired from the treatments that work is impossible. He knows he has to be patient. The doctors have explained to him that this is normal and that it will take time.
Byron had incredible support, and he says: "Sometimes it's stuffy when it's too crowded." It was in music that he found solace and the strength to fight on. The strength not to give up, not to give in. It was through music that he kept hope alive for better days when he would feel better. A self-professed introvert by nature, Byron is in a world where he feels at home behind a microphone or a turntable.
Eventually, those better days started to come. Not enough to last a day without a nap, not enough to work, but his body is recovering steadily and he's optimistic about the future.
Byron is very bitter about the system. He wanted a career in the army, and thought he had a chance when he was physically fit. After earning his CFC, he went straight into the army, but as soon as he fell ill, the army declared him unfit for life, even for the CP (civil defence).
"It disgusts me because I think that once I've recovered, I could contribute something to the army or CP. But no, the army refuses anyone who has had cancer. We're barred for life, we pay our taxes."
"Today, I wouldn't want to join the army. I was disgusted. They dismissed me on the pretext that the disease existed before I joined the army. Maybe so, but I didn't wait until I was in the army to be diagnosed with cancer. I appealed three times, to no avail. Two years earlier, I was working at 100% and now the AI (invalidity insurance) is considering my request for professional reintegration, and that's what scares me."
The financial side soon became a major concern for Byron. Having no employer before leaving for military school, he found himself with no income. He was lucky to be living with his parents, but he still had to pay for his health insurance.
He discovered the intricacies of the bureaucracy, and learned to negotiate with the health insurer to get payment accommodations and timings. The social services intervened to rule on his situation, but it took several months. If the army had retained him, the army's social services would have continued to look after him as they had done at the start. They have other resources and were very helpful. Above all, Byron would have been entitled to the army's loss-of-earnings allowance, which would have been much higher than what he receives today.
"I'm over 18, unemployed because I'm ill, and I'm on social welfare with CHF 700 a month to live on. Since I live with my mother, and my 18-year-old brother lives with us, both their incomes are taken into account by the social services. Knowing that my little brother is supposed to support me on an apprentice's salary is pretty ridiculous. There's a world of difference between social work and reality."
In the end, Byron secured a waiver of his health insurance premium. When you earn CHF 700 a month, it's impossible to spend CHF 350 just on health insurance.
Today, Byron's recovering day by day:
He hopes he'll soon be able to find another job, even if it's part-time at first. He remains hopeful that an employer will give him a chance and see in him the will that drives him.
"What's difficult is that we fall into extremes. You get a sore throat and think the worst. But I've had to learn to listen to my body. Something I didn't do before. I'd go for it and even if I knew it wasn't right, I wouldn't listen to myself. It's as if I've received a message. It's as if I'm trying to make sense of having had cancer."
Byron's DJ set took place. He was able to count on his friends to set it up, and for 12 hours several DJs took turns on the decks to raise funds for Zoé4life. It was a day full of emotion. Not only did Byron speak on Back2Noize radio, but he also took to the decks under the name SeydCore to share his passion for music.
The event raised a whopping CHF 2,000 for Zoé4life.
Behind this young man, who seemed so fragile at first glance, lies a person of great strength and will. A young man with a huge heart who thought of supporting children with cancer, while he himself was in the midst of his own battle for his health.
"Faced with two difficult years ahead from a financial point of view, I'm going to learn to live with little and make the most of it afterwards. I know that cancer allows me to appreciate all of life's little pleasures."
I was touched by this encounter, and I thank life for putting such beautiful people in my path.
Natalie Guignard-Nardin
