Malignant melanoma - choroid

nocon said:

same thing for me - left eye went after melanoma in choroid
Hi Kelkins,

Hang in there! There is a rich, funny, happy, meaningful life after they take your eye! Should take about a year to feel like yourself again. At the end of this post I have a list of things for you to make sure you do.

They found a melanoma in the choroid of my left eye in 1996, and took the eye. Then, 10 years later, regular CT Scan found metastatic tumors in my lung and liver. (These were removed surgically - oh, what a big advernture that was! - and now I'm fine.) I know exactly what you are going through. I went through exactly the same thing when they took my eye. I am the Queen of Vain and when they told me I would always have to wear glasses to protect the right eye I cried and cried. I, too, felt like I wanted to stay under the covers. I had a bad depression for about a month. They took the eye in May and I had the depression in August.

It is very, very difficult. Many people do act like it's no big deal. After the ennucleation, I asked my surgeon if I should get a special handicap driving instructor to teach me to drive with one eye, and he laughed and said "Get in your car and drive!" Thanks, guy. However, there are many people who will be kind and loving if you crawl out from under your covers and let them! I had to force myself out into public. And, I found out who really did love me, whatever my condition, and it was a lot more people and more love than I would have suspected.

Not everyone is going to be able to understand how you feel, and your family are just trying to do their best for you. Loving someone is not the same thing as being able to understand them completely. Know they love you. Don't expect they will be able to understand everything perfectly.

Figure out a few accommodations you want made for you in the home (like, not coming up to you on your blind side without warning!!) and list them and ask for them clearly. Demonstrate them if you have to. Outside in the wide world, no one is going to make accomodations for you and you can't expect it. But in your home, your loved ones can be expected to make a few accommodations for you. That's legitimate. I'm talking about nitty-gritty, specific physical accommodations, like letting you have the seat at dinner or watching TV that is most comfortable for you. I'm not talking about letting you stay under the covers! Everyone who lives in your home, and everyone who considers himself or herself your family, should spend two full days (and two overnights) with a patch over one eye. Yes, in public, and driving, and at home, and reading, and having it on when they wake up. This will help them understand what monocular vision is like, and it will help them understand the feeling of everyone looking at you because you're different. This is really a must for everyone who lives with you or has holidays with you - that should be your whole family! I am 51 years old and I know there is no excuse for any of them to get out of doing this.

Things to do*************************

Get the book "A Singular Vision" about living after losing an eye.

Groom, groom groom. Making yourself nice and polished and elegant really, really keeps you from that feeling of being disfigured. It's not superficial. It is really important.

Exercise. Use every part of your good healthy body. Be as fit as you can be.

Go to every one of your follow-up CT Scans. Don't miss a single one.

If they gave you glasses to wear, wear them!! Don't take a chance and go without them!

Force yourself out for walks and drives. Go shopping, get in crowds, go to movies and read books, and go out to eat a few times. The more experience you get under your belt living with your new vision, the sooner you'll take it all in stride.

Ask your Primary Care Physician (not your family!) about antidepressants. These do not make you feel sluggish or zombie-like. They just give you bounce-back-ability and confidence. If your doctor thinks they would be effective for you, take them. Call your doctor and tell him/her how you are feeling and make an appointment to discuss antidepressant medication.

Keep a My Melanoma Story diary. What you and I went through is a big deal, and don't let anyone convince you it's "no biggie." It's a big biggie, so let it be one. Write up your whole experience like a big saga, from the discovery of the melanoma to the oncologist visits to the hospital stay and the mean, wicked nurse (everyone gets one, you must have had one) to your life now. Pick the perfect actors and actresses to play the people in the story and the people in your life. My cast: Patrick Stewart, my liver surgeon; Rob Lowe, my lung surgeon; Daniel Craig, my first oncologist; Paula Abdul, my PPC; Catherine Deneuve, my friend Isabelle; Sean Connery, my husband because he doesn't have a lot of hair either. Haven't decided on the Kathy Bates role yet.
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Kelkins, I really thought I didn't want to go on after they took the eye. It was far more traumatic than the surgery for the metastases. How old are you? If you are very young, it is much, much more difficult for you than it was for me at 38, but you will also adjust to it sooner and better in the long run. Do not wish you hadn't had the surgery! You did the right thing and so did your doctors. You are going to feel very diffent in a year than you feel now, and you are going to feel better soon. I had the eye taken in May, and it was in August that I had a really bad depression.

Which eye did you lose? Did you get a good prosthesis? How did they make the prosthesis? What's your eye color? My right eye is greenish hazel, and my left eye had a large brown spot in it, so it looked like I had two different colored eyes. They painted the prosthesis for the left side from the right eye, so now both "eyes" are the same color!