The first stage: the diagnosis
‘It's almost Christmas. I love that! If it was up to me, the decorations would never go away. Everything is enlightened: houses, streets, the city. That reminds me of something else entirely. It provides a distraction. It makes me go out of bed happy - every day.
It was also around Christmas, eight years ago, when my parents and I became very ill. My parents recovered, but I kept having headaches. I felt this especially in the morning when I bent down to get some breadout of the refridgerator. We decided to go to the family doctor, and later to the ophthalmologist. Maybe it was because I needed glasses, we thought.
I got those glasses, but that didn't help. After a while we went back to the ophthalmologist. In the evening he called us back because he saw that there was tension on my optic nerve. Immediately I was referred to the AMC for emergency admission. There, after an MRI, it became clear that there was a tumor in my head. They strongly suspected it would be malignant.'
My first question
‘At that moment I didn't really notice that I was sick. But when I threw up 24 times the next morning, I knew there was something there that didn't belong. The doctors showed me a picture of the tumor - it was six inches. I was ten years old at that moment, so then it is very difficult to realize what is happening to you. My first question was: Am I going to die? That question has stayed with me the most. The doctors told me that they couldn't answer that yet, and that they were going to do everything they could to prevent it.
An intens period followed, including a 12-hour surgery, radiation and chemo. Tough, but on Nov. 23, 2015, we were told the cancer was gone. That made November 23 a holiday for the past five years. Until now. Because in late November 2020, something did show up again on the MRI scan. The cancer was back. And although efforts are being made to control the cancer with chemo, I am no longer curable. It's just a matter of time. That makes me keep pinning my hopes on the next chemo, instead of being sad.'
Automatically positive
'One of the reasons I want to tell my story, is because I hope it can help others in such a situation to find that positivity too. After all, you can turn thoughts around and find a way.
This became clear to me after a visit from my sister in the AMC. She was very emotional. ‘Hey, I'm not laying under the green grass yet,’ I joked to her. We all laughed and from that moment on I turned out to be automatically positive.
I don't put anything away and talk about everything. Everything has to be discussed. For example, the other day we walked through a cemetery to see if this was a place I would want to lie. Crazy stuff, but at least I have a choice in that.
Of course, there are times when I can't be positive for a while. It's especially at night, right before bed, when negative thoughts start: What if in the future something does come along that works well on my tumor? The doctors know that they can't cure me with everything that is there now, but who knows, maybe something will be discovered in the future that will allow me to grow old?’
The Three Musketeers
'In a WhatsApp group with more than a hundred people, ‘The Three Musketeers,’ we are sharing news. 'The Three Musketeers' stands for my foster fathers Eric, Peter and me. We don't write sad messages, but we don't beat around the bush either. It has to be told, even if it's intense.
Every time we end on a positive note. For example, in one of the last messages, I tell very clearly that there are no more possibilities for healing, but that I hope there is still enough time to create beautiful moments.’
Living life
'Recently I bought night vision goggles. These kinds of gadgets, where you can really do something with them, help me create those beautiful moments. Personally, I love nature. Ideally, I would like to become a forest ranger. 'You have eagle eyes,' said a forester with whom I once walked. I see all kinds of things happening.
During a trip to Barcelona with the Make A Wish Foundation, we visited an FC Barcelona match, but also decided to go to the Sagrada Familia. It was so crowded, we couldn't get in. Suddenly a very beautiful colored bird caught my eye. No one else saw it, but it was the only thing that caught my eye.
This may not work that way for everyone, but I want to say that everyone can do things that he or she likes in order not to feel down. It's sad, but I just keep going. I want to live life.’