Niels and his parents are sitting at the kitchen table in their house in Zeeland – Ovezande, that is. A tiny village, just over a thousand inhabitants, everyone knows each other. There is a drawer under that kitchen table. And it is in that drawer. Secure storage. Out of sight.
It is a bucket list. That could only make Niels better, the doctor said after he had told that Niels had a very rare, incurable form of lung cancer. That was seven months ago.
Mutation ALK
The doctors said that Niels might only have a few months, at most one, maybe two years. The cancer could not be removed because it is in his entire lung membrane. Also chemotherapy and radiation treatments would not work, because it is a mutation called ALK and that is better to treat with targeted treatment.
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“That was a very hard message,” says Niels now. His voice sounds soft, calm, his Zeeland accent is clearly audible.
“I went there because I was out of breath within five minutes while exercising – that was all. The doctor had seen a lot of fluid behind my lungs and had to be drained. He then said,” This can be very serious. ” you will not be told much later that you are dying. “
‘Serious?!’
Then there was a very long silence in the consultation room, the family remembers. “No one had words. We have all been crying. I also thought: I am 20 years old, never smoked, and get lung cancer? Seriously ?? !!”
His father, William, shakes his head. His mother Annemieke says: “You can’t make up something like that.”
Then Niels started to write, beaten and scared, but also sober and pragmatic. In particular, many cities were on his bucket list where he wants to see a football match again – Chelsea in London is at the top. Going there with his father, that’s the plan. And there are countries where Niels wants to go, he wants to travel, backpack on his back and go, far away, maybe long.
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Lung cancer mainly due to smoking
In more than 85 percent of all cases, lung cancer is the result of tobacco use. Cigarettes in particular are an important cause of lung cancer.
Non-smoking lung cancer patients often have a better prognosis than smokers. This is because lung cancer often looks different and behaves differently in patients who have barely smoked.
Source: Ministry of Health
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But when Niels finished his bucket list, he heard other news at the Erasmus MC in Rotterdam, where they specialize in cancer, and also the type of cancer from Niels. “We went there for a second opinion. And there we got hope again.”
Not pathetic
The doctors agreed that healing is not possible, but because fluid had entered Niels’s lungs (causing his anxiety symptoms), there were no metastases either. In addition, there were medicines, pills, that could reduce the cancer in his lung membrane. If he was lucky.
He was lucky. He likes to mention that too, because if Niels doesn’t want something, then it is pathetic to be found. “I am disappointed in my body. But we see more and more improvement in the lungs. That is good news, we hold on to that.”
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And of course: sometimes he thinks: “why does this happen to me?” “I remember looking for more information and fellow sufferers, and I registered with Lung Cancer Netherlands. They referred me to the department that was specifically aimed at young people with lung cancer. Do you know what age limit they use for that youth department? “
Well?
“It’s about people with lung cancer up to the age of 55. 55!” What Niels wants to indicate: he is one young, and therefore also an exception to the rule. 190 people in the Netherlands have his type of cancer.
Bit strict
“Yes … Yes. That is sometimes quite lonely. When I look at Facebook groups with fellow sufferers; all of them already work. Have a family. While I struggle how to finish my studies.”
Because, by the way, he just started doing that. Last year after the summer vacation, Niels started as a first-year student at the Technical University of Twente in Enschede. “I want to meet new people, learn a trade, attend college, maybe get into a relationship. I just want to live my life.”
When he says that, he looks a little strict – it is not because of his glasses, but because of his determination.
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Niels lives in a student house in Hengelo. He grins. “As far away as possible from my parents. I have to travel three hours by train to get here.” Mother Annemieke laughs: “Yes, sometimes we think that it matters.” Then, seriously: “But sometimes it is difficult. If he has bad days.”
Because they are certainly there. The side effects of the medication are severe. Niels is particularly troubled by fatigue. “If I have had a full day of lectures, I can no longer do anything the next day. I recently sat in the kitchen with my housemates. Everyone drank beer, but I didn’t because I really can’t do that with the pills that I have to take every day. Moreover: if I go through a night, I can’t do anything the next days. I can’t live the ‘normal’ student life. “
Zeeland sobriety
He sometimes finds that difficult. He was healthy. He lived a healthy life. “When people hear lung cancer, they think: you must have smoked. I am sorry to hear that, because I have never touched one cigarette.” Not that Niels thinks that people who do smoke ask for lung cancer. He emphasizes: “Nobody wants this disease. Smoking is an addiction. But I just want to say: you can get it if you don’t smoke.”
“But,” adds father William, “lung cancer does not immediately mean” death. “Many people think that when they hear that word. That you cannot be saved immediately. But look at Niels.”
Niels smiles satisfied. He feels fine. Is also not very scared or beaten up. Is it Zeeland sobriety? “Oh!” Annemieke shouts and she waves her hands. Like this: of course. Quite logical. “Our entire family is sober. Very sober.”
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But they did learn to talk, including Niels’s sister and his parents. “At a certain point you have to do that when such sad things happen,” says Niels. “If I’m scared, or I’m bothered by something, then I say so. That relieves.” Annemieke: “We all learned that together, I think. Say everything, name things.”
Father William nods. Yes. They certainly learned that. Actually when William had a heart attack and it was a real edge for a few days. That was a year before Niels made his diagnosis.
“You keep quiet, don’t you?”
“And the year before that I had a tia,” says Annemieke. “Yes, we have had a good period. Hopefully it will be quiet now.” She watches her daughter – Niels his sister – as a warning – watching TV on the living room couch. “You keep calm, don’t you, young lady!” Everyone is smiling.
“We remain positive,” says Niels. “And we make jokes.” That is how Niels sometimes calls himself ‘Alkje’. Alk is the medical name of the mutation that Niels has. “A friend of mine is studying biomedical sciences and came up with that term. He learned about it in his studies because it is so rare.”
And precisely because it is so rare, the medicines that ‘Alkje’ Niels takes are only available since 2013. “If they had researched it later, and those drugs didn’t exist yet, I might not have been there now.”
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According to Niels, it shows the need for research. More research. “A lot of attention is paid to diseases such as breast cancer, because that is one of the most common cancers. And that’s a good thing that research is being done on that. But I also want a greater chance to cure completely.”
Nobody can say how it goes. The tumor is still shrinking through the pills – but for how long? Nobody knows. Whether he can turn 90 with these drugs? Nobody knows. Whether he will suddenly hear bad news in one or two years? Again: nobody knows.
Finish list
That is why Niels hopes that one day – today rather than tomorrow – there will be a treatment that can completely cure him. “I want to be able to do everything I want to do again.”
With a gentle nod, he points to ‘somewhere’ under the kitchen table. To the drawer. With the bucket list. “I haven’t actually looked at it since there is hope again,” he says. “But I know by heart what it says. And I am going to finish that list.”
Not because he thinks he’s dying, by the way. Father William: “But just because it’s nice to do those things. Why wait?”
Yes, Niels nods. Indeed. Why wait?
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