Cancer light (because weight may also have light)

15:33 – The bell no one wants to hear

It was a call on Friday afternoon at 15:33. I was just preparing a kwis beer tasting. A night I've been looking forward to with Evert for months. The glasses were ready, the questions were sharp, the mood excellent.
A private number called. I don't normally pick it up, but I was in a good mood. On the line: a doctor. He said that “Bad and Dead Cells” were found. And that “We need to find out where they come from, because they don't belong there. There's a source somewhere. I would like to call the Antoni van Leeuwenhoek now, so you can go there immediately on Monday. Hello, sir, we'll meet on Monday.’

First you go on autopilot. Your hands are shifting chairs, but your head is elsewhere. Until you realize: I have to go home to Sylvia.
And then you think: I've lost all control... everything is uncertain. Except this night. I've got it under control. And I'll keep it, too. Tomorrow may be chaos, but tonight I'm in control.

I decided to do everything I could to make it a great night. Difficult, because I hadn't told Sylvia. And believe me: no matter how fun it was, no matter how hard the adrenaline screamed, no matter how full the glasses were.... A phone call like that won't leave your head for a second. I saw Sylvia laugh, enjoy, and that made me happy. But it also felt unfair. I told her right after the show was done.

“Some words weigh more than any glass you can lift.”

The swelling I didn't feel

I've had a headache for weeks. Probably tense, I thought. But when it stayed, even after the stress disappeared, I decided to go to the doctor. Because I once had a tumor (in 2000), an MRI was made just to be sure. In my head everything looked neat but at the edge of the image: Something crazy. A swelling of three centimeters in my neck.
The neurologist thought of a lymph node, but that wasn't his terrain. Go to the ENT doctor. He felt, looked and frowned. “I'm requesting a puncture.’
From that moment on, I suddenly felt that swelling. As if my body thought: Now it can stand out.

The puncture was on Thursday. The result would take a week, but I was called the next day. That's never good news.

“There are words that sound heavier even over the phone.”

The source, the conjectures and the reality

The cells turned out to be squamous cells, some of which died. This means: metastasized. There is a source somewhere. And they have to find them now. Based on the cells found, the doctors think that the primary tumor is somewhere in the mucous membrane or the skin.

Monday I was at the Antoni van Leeuwenhoek in Amsterdam for explanation and research. The best cancer hospital in the Netherlands. There is no definitive diagnosis yet, but the most likely scenario is throat cancer, at the base of my tongue. This type of cancer is often caused by a virus.
Women have been vaccinated against this in the Netherlands for more than thirty years. Not men of my generation. Right now, but vaccination rates are falling, and that's worrying. Because this virus does not discriminate on gender. Thank you.

“Sometimes prevention seems to work mainly for the people who come after you.”

What's next

The next few days will bring more clarity. Thursday morning an ultrasound, then in the afternoon a PET scan. An MRI on Friday morning. If those investigations are not conclusive, a viewing operation will follow on Friday. At best, everything can be removed with a simple procedure. In the less favorable case, a course of six to seven weeks with daily irradiation follows.

The side effects sound like something from a science fiction movie: burning throat, hoarse voice, altered taste, bald spots in your beard. But if that's the price for a few more beer tastings, I'll sign for that.

“Control is an illusion, but optimism can be planned.”

The fear that is not medical

Everyone asks how goes, They usually mean: ‘Physical’.
But honestly, I'm more afraid of something else right now.
I'm an entrepreneur, and the past year has been tough enough. The DBA Act It hasn't made it any easier for the self-employed, and I've felt that right. There were months when I wondered if I shouldn't just go back to permanent employment. Something I used to think was unthinkable, but now sounded attractive.

And now? These social safety nets are of no use to me now.
For the time being, I have to pay attention to what I have built up, to some savings and to the little work that I may still be able to do. And that, frankly, makes me more frightened than my physical condition.
The thought that my family will soon have to carry not only the stress of my illness, but also of an empty wallet. That fear keeps me up at night.

It is often said that cancer teaches you to put everything into perspective. That's true. But not everything can be put into perspective. Fear of loss of security sometimes feels as raw as fear of loss of health.

“The economy of fear is always running at full speed.”

⁇ About the title Cancer light

The title Cancer light It is a conscious contradiction.
Cancer is heavy. The word alone pulls conversations down, makes people quiet, uncomfortable or scared. Yet I believe that light can also shine on the dark sides of life. Not to make it smaller, but to make it more bearable.

Light does not mean ‘unimportant’ or ‘funny’ here, but ‘clear’, ‘fair’, ‘breathable’.
I want to write about what is happening. Without drama, without self-pity, but also without reluctance to laugh at the absurdity of the whole process.
The tone of this blog is not heavy or gloomy, but rather human, sober and sometimes dry comic.

Cancer light It's about everything that comes with this disease: the confusion, the humor, the love, the waiting, the small daily moments that suddenly take on meaning.
Gravity can have light, and sometimes light helps to maintain the heaviness.

“I don’t write about cancer because I want to have it, but because I already have it and it doesn’t have to be everything.”

For now

This is the first chapter of Cancer light; A series in which I will share my experiences, thoughts and discoveries. Not as a medical report, but as a person who tries to keep the balance between gravity and air. This first one is a bit longer than the rest will be. 
My wife Sylvia tells her side of this story on Instagram, under the name @stayf_bijmij

PS: The name Stay with me It was not chosen by chance. It was the song that played when Sylvia and I first kissed. Now that she says she wants me to stay with her, it brings happy tears to my eyes. It feels like that song, that moment, has quietly imprinted itself in our lives, and is now gently on repeat.

“Some songs last longer than their last note.”