“For years, I’d had a kind of bruise in my eye, and it hadn’t bothered me. Until a small growth appeared on my eyeball. That was when I decided it was time to see an ophthalmologist after all. After using eye drops and undergoing repeated checkups, he decided to go ahead with a minor procedure to remove the growth. It was sent to the lab. Three days later, I received the results: there was a melanoma in my eye. This melanoma was the very rare ‘conjunctival melanoma,’ a form of cancer that occurs in soft tissues.”
I found out online that the Leiden University Medical Center (LUMC) specializes in the treatment of ocular melanomas. I underwent a series of surgeries there, but they did not produce the desired result. There was little choice left for me and the doctors. It was decided to remove the eye completely. That was a major step, especially because the consequences would be so visible. My daughter was getting married in November, and the thought of having to be in photos with an eye patch or a tinted lens in my glasses seemed like a very unpleasant prospect to me.
Epithesis
I shared this with my treating physician, Dr. Bisschop. She said, “Then we’ll start making an epithesis right away.” (An epithesis is a facial prosthesis, also known as an orbital prosthesis. It is custom-made and tailored to the shape and color of the face. Ed.) It’s truly remarkable how skillfully Dr. Bisschop and her assistant, Maureen, made sure I already had a beautiful epithesis on that special wedding day.
I felt radiant that day and was also very happy with the reactions of people who thought my eye looked beautiful. That gave me the self-confidence I needed to carry me through for years to come. Fortunately, others often can’t tell that I’m wearing the prosthesis.
Future
After that, I went to the LUMC regularly for checkups. Three years after I started wearing my first prosthesis, the LUMC found a new solution. Now I wear the prosthesis using a snap-on magnet. This became possible after two implants were placed in the lower part of my eye socket. Now I can simply click my prosthesis into place. I’m incredibly happy with this. No more hassle with the difficult process of attaching and keeping the prosthesis clean. I’m truly grateful to Dr. Bisschop because she really thinks and feels along with her patients!
My 4-year-old grandson says, “Grandma, can you click it in?” It’s perfectly normal to him. Even though he knows I’m lying when I say, “I’ll just click it into my eye so I can see better.”
The World Turned Upside Down
Still, last year my world was suddenly turned upside down. I had thought, “The five-year follow-up period is over, and I’ve beaten the cancer.” But suddenly I noticed a small lump in my eye socket. I called Dr. Marinkovic and, despite the Covid-related chaos, had to go straight to the LUMC. A minor procedure followed, in the hope that it would be just a small fatty lump. Nothing could have been further from the truth. A new recurrence of the ocular melanoma was a reality. My world did come crashing down a little bit after all.
Fortunately, I was able to have surgery fairly quickly. If I found my first surgery five years ago to be very intense, I don’t even know how to describe this procedure. Five years ago, my eye socket was closed using the eyelid, but that wasn’t an option this time. The entire eye socket had to be removed down to the bone, and that was very traumatic for me. Also, no skin graft was performed this time, because it was better to let the skin heal on its own. After three days, I was allowed to go home. We had already prepared the kind ladies from home health care for what they would see. They’re certainly used to seeing a lot, but even they found it very intense.
Nine months
The recovery period was expected to take about nine months, but fortunately, the eye socket had almost completely closed after just five months. At that point, you really just want to get your “eye” back in as soon as possible. In early November, the implants were removed during a minor procedure. Shortly afterward, the snap mechanism was reinserted, and my eye was back in place. At first, the skin was still very sensitive and fragile, but now it’s getting better and better. It was a real celebration when I finally saw two eyes in the mirror again!
Of course, the shape of my eye socket has changed now. They’re working hard to make a new prosthesis that fits well. This will take a few more weeks because Dr. Bisschop isn’t easily satisfied with how it looks right now. I’m glad she’s so critical. The new prosthesis is being made at a dental laboratory, and it really has to look nice and natural.
A turbulent year
2020 was a tough year. Because even your everyday life goes on with people close to you who are affected by COVID-19. I’ve lost loved ones, even without COVID-19. And yet, as I write this article, the sun is shining, even though just a week ago we were still walking in the snow. By mid-March, I hope to bring this period to a close with a positive outlook on the future alongside everyone who is dear to me. What I’ve learned is to pay close attention to and listen to your body. I hope that together we can get back on track soon and that we’ll be able to meet many of you again—not via Zoom, but in person at the always wonderful and enjoyable Peer Support Day organized by the OOG in OOG Association.
“Best wishes from Nellie Kooijman and… above all, stay healthy!”
