Maundy Thursday, March 23
But last week, as I was sitting at the table eating breakfast, I noticed that I couldn’t see the triptych above our sideboard. I moved to the other side of the table, and then I could see it. For me, that’s a sign that it’s time to stop by the optician’s.
So after the reception, I go to see him; he looks me in the eyes, and I can tell something isn’t right. He tells me to go straight to the family doctor tomorrow, on Good Friday. Yeah, but then I’ll have to see a substitute doctor, because our “old” family doctor’s replacement doesn’t start for about ten days. I don’t like that. I ask the optician what he saw. “The family doctor will tell you,” he says.
In the evening, I look it up on Google (which I never really used to do), and I get the feeling that something’s probably wrong.
Good Friday, March 24, 2008
The substitute family doctor examines my eyes and immediately refers me to an ophthalmologist. She calls the ophthalmologist in Veghel, and I’m able to go right away. This ophthalmologist immediately refers me to Nijmegen. I call my husband, and we drive there together. We don’t say much to each other, but all sorts of thoughts are running through my mind: could it really be that bad—maybe even an eye tumor??
In Nijmegen, my eyes are examined again; photos are taken, and they’re examined and measured once more. Then (it feels like) a long wait follows for the actual ophthalmologist, Dr. Klevering. Because up until now, everything has been handled by a resident. More examinations and checks. More waiting, and then the diagnosis comes: You have an ocular melanoma! Before the doctor can say anything else, I say, “So the eye will have to be removed.” The doctor confirms this. I then say, “Luckily, I have two, so I’ll still have one eye left!!” The conversation is just as matter-of-fact as I’m describing it now. I’m then told why treatment is likely not possible. The tumor is too large and is too close to the optic nerve. That’s why I’m given a referral to the ophthalmologist in Leiden for a second opinion. I have an appointment there on Tuesday, right after Easter. We say goodbye to Dr. Klevering, a kind and sympathetic doctor.
In the car, it all starts to sink in.
My mind is racing—first I have to tell the kids, then the school, my coworkers, and my students. My family and friends—I’m going to be really busy. I’ll find time for myself later.
First, we’re going to visit our children to tell them the news. Our youngest daughter is expecting her first child. She reacts quite emotionally. I comfort her and tell her that, even with just one eye, I’ll still be able to see her baby very clearly.
I’m calling my family and my close friends. I want to tell them myself. That’s how I started to come to terms with it.
Tuesday, March 28, 2008
Dr. Luyten in Leiden tells me the same thing I heard from Dr. Klevering in Nijmegen on Friday. Here, too, I am treated very politely and with understanding. During this week after Easter, I’m going to school. I tell my principal and ask him not to say or do anything. I’ll make sure there’s a letter for all my colleagues in their mailboxes tomorrow. I’m also writing a letter for my students, which the homeroom teachers will read aloud in each class. Because of the subject I teach, I know all of my students. I don’t even forget the students I’m mentoring. I’ll inform their parents by phone.
I want all my colleagues and all my students to hear the same message from me through these letters.
Then there won’t be any Wild West stories going around the school. Because I know how it goes—the stories get worse and worse, and before I know it, I’m dead and buried. That’s not the plan!!
I’ve noticed that writing things down helps me deal with them. I’m starting to write a letter to my “old” family doctor. And this letter will be followed by something else—I’m going to keep a journal for three months.
This week, I’m also going back to Nijmegen to take care of a few things. It’s not just for the surgery; I also need to have blood drawn and get chest X-rays. It’s becoming clear that I’m a healthy woman—with, well . . . an eye melanoma.
I meet Prof. Keunen, a truly wonderful doctor who knows everything there is to know about eyes and cancer. He explains things to me clearly and tells me that the surgery won’t take place for another few weeks. He tells me to do fun things in the coming weeks and get used to the fact that I’ll have to go on with just one eye afterward.
He tells me that if I have surgery right away (which is what I’d prefer—then the cancer will be out of my body), I might end up with serious mental health issues afterward. I’m willing to take this man’s word for it.
Well, I have indeed been doing some fun things. I have two weddings coming up in the next few months, so I’m going clothes shopping with some friends. And I’ve also been practicing seeing with just one eye.
I wore an eye patch for part of the day; for example, I stood there ironing. It wasn’t as bad as I thought it would be.
But… I was able to take the bandage off, and then I could see with both eyes again. That really does make a difference, if you know what I mean. . .
These past few weeks, I’ve been having intense conversations with my husband and the kids; there have been bouts of heavy crying and some very difficult moments. It’s all part of the process.
Sometimes I think to myself: Cancer—am I going to die now? NO WAY!!
April 10, 2008
I’m being admitted to the hospital.
In the evening, my husband and children come to visit. During that visit, Dr. Klevering also comes by and explains to all of us what’s going to happen tomorrow. I’m a little afraid that they might accidentally remove the healthy eye instead of the affected one. Dr. Klevering reassures me. I also say that I’ll be glad once the eye is removed—then, along with the eye, the cancer will be out of my body. Dr. Klevering corrects me. He explains that I might still have a higher risk of metastases, for example, in the liver. He’s honest with me. I’m glad about that.
With some acetaminophen, I’ll sleep well tonight.
April 11, 2008
The surgery takes place seven years and seven days ago. I’m feeling pretty calm about it. As I’m wheeled into the operating room, Dr. Klevering tells me he’s going to remove my right eye and marks it on my face. I’m now certain that the diseased eye is going to be removed. Then I fall asleep.
When I wake up, I have a bandage over my eye.
My husband will be back with me soon.
And in the evening, before he goes home (he’s already got his coat on), Dr. Klevering pops in to see me for a moment. He sees me as a little bundle of misery, because I’m having a intense crying fit. He tells me that’s okay and that it might happen again. That’s how the sadness comes out. I really appreciate that he’s showing so much concern.
During visiting hours, our son comes to visit with his daughter, Hannah. Our granddaughter is seven years old, and she must be staring at me quite a bit. Grandma looks like a pirate, with that patch over her eye.
The next morning, Prof. Keunen comes to remove my bandages himself. I hear from the nursing staff that he actually never does that himself. But he’s doing it today, and he’s very kind again. That makes me feel good. He tells me I can go home today. The “eye” looks good. I agree when he shows it to me in a mirror.
A few months later, my first ocular prosthesis was made at the eye lab in The Hague. When I was able to put it in on June 12, I felt like the king of the world. I looked so beautiful again.
Sometimes the eye prosthesis causes a few minor issues, but they’re always resolved very quickly.
It’s been two years now, and I haven’t had any problems with the eye prosthesis at all. That’s great.
The years that followed:
I reread my diary for this story. I realize that those first few months after the surgery weren’t always easy for me after all. I had actually forgotten that a little. . .
I read that all sorts of things are happening that I don’t know how to deal with. I’m scared—constantly having blood drawn to check if my liver is clear. Spots on my skin, and then the fear that a melanoma will develop from them. I read a lot of scary things online about eye melanomas. I worry too much. It doesn’t go away, even when I go on vacation. And it doesn’t go away even when I go back to work part-time after the vacation.
By November 2008, I was completely fed up with that. That’s when I made a very conscious decision to turn things around!
I am now under the care of an internist/oncologist, and I have checkups every six months.
Blood tests, sometimes a chest X-ray, and every now and then I get a scan. That’s fine. I’m also going to stop surfing the internet.
I take a hard look at myself, I talk to myself as I gaze into my brown eyes in the mirror (that eye prosthesis is so beautiful—you can’t even tell it’s there), and I say: “Han, don’t let the black hole consume you—focus on the other side, where there’s light. That’s what matters most!”
From that moment on, I no longer talk about the black hole, but about the light. And damn it, it helps!
I’m focusing more and more on the things I CAN do and much less on the (minor) inconveniences.
Every day is a gift—and has been for over seven years now. So many people I know—family, friends, and coworkers—have also been diagnosed with cancer; some of them are no longer with us. And I’m still here!
In my diary—which I had already finished typing on the computer at the end of June 2008—I added the following in December:
“I can get my life back on track. Nine months ago, I had to let go of that a little. Still, I want to close the chapter on ‘fear of cancer’ now.”
Easter 2008 (late March) was a sad time. . . Christmas 2008 is going to be one big celebration with the three kids, Jan, and the four grandkids!!
Yes, in 2009 and the years to come, I get to LIVE life again!! And I’ve promised myself: I’m going to live to be at least 80 years old. . .”
April 18, 2015
It’s 2015 now, and I have such a fulfilling life. And it really helps to stay positive in life.
Earlier this year, the (new) internist (the old one retired) declared me “cured.” I only need to see the eye doctor once a year to keep an eye on my good eye. And I see the dermatologist once a year, just to be on the safe side. Other than that, everything is normal! I’m retired now, and I do volunteer work. I give guided tours of the beautiful Heeswijk Castle. That gives me a sense of fulfillment.
Jan and I now have seven grandchildren. It’s wonderful that I get to experience this. My motto is: LIVE LIFE TO THE FULLEST!!!
