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Malignant melanoma - choroid

kelkins
Posts: 2
Joined: Sep 2008

In March, I lost an eye to cancer. I have tried very hard to gain a "normal life" back. But, I am tired of being brave and sane. I want to scream, cry, and have a temper tantrum. I hate waking up every day. My doctor and family act like its no big deal and I should just get on with life. I want to play the "poor me" card and just crawl into a hole. I wish I had never had the surgery and let the cancer spread to my liver. I pray every day that God will just let me die. Is there life after eye cancer?

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Your CSN Staff
Posts: 200
Joined: May 2008

Hello,

We are sorry to hear you are going through such a difficult time. We encourage you to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with support resources in your area. They can be reached at 1-800-227-2345.

We wish you the best,

Your CSN Staff

TereB
Posts: 288
Joined: May 2003

Yes, kelkins, there is life after eye cancer or any cancer. Don't lose hope just yet and find your life. It may be a little different, your priorities may have changed but you can enjoy it. Cancer is not just the surgery and treatment, it affects us emotionally too. We may be scared, angry, depressed, etc. and it is okay, normal for cancer survivors. The trick is not to stay there. Give yourself time to heal, time to be angry, time to be depressed or whatever else you are feeling now. Then leave it behind. If you think you cannot do it on your own, get some help. It is possible to live a fulfilling life, a life that you can enjoy after cancer.

Don't be brave and sane for other people. If you are going to do it, do it for yourself. Allow yourself to have feelings, feelings that come naturally. If you want to scream, go outside and give a big yell. I think you might feel better. If you feel like crying, that is okay too. Like I said, the thing is not to stay there for a long time.

If you believe in a Superior Being, faith will help you. A sense of humor helps too. There are many funny movies out there. If at first you do not feel like laughing, fake it. Before you know it you will be laughing. I dance... not in a group, not in a class, just dance by myself, with the dog, the cat, my son or daughter and I feel good. I sway with the music when I am in a store and I like it, nobody cares except my sister... it drives her crazy... maybe she is embarrased but I am enjoying myself too much to stop.

I was very depressed at one time (I have a rare incurable cancer) and psychotherapy helped me a lot. Many oncology depts. have social workers experienced with cancer patients so they can help.

Check this video: www.thesurvivormovie.com

Here are a few places where you may find some help and support:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. Check their website too, www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support.

Live Strong - www.livestrong.org - offers one-on-one support.

If you choose therapy or support groups, it really works and if you are feeling better emotionally, you heal faster. If you are not comfortable with a particular therapist, you should try another one and not give up.

Hugs and best wishes,
TereB

nocon
Posts: 1
Joined: Nov 2008

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.
******************

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!

kelkins
Posts: 2
Joined: Sep 2008

I turned 56 Tuesday. My eyes are also hazel/green. I have worn glassed since I was ten so that part was not a big deal to me. My prosthesis was made by a specialist at the University of Michigan and it is very good. To me, it looks bigger than my other eye but, like most people, I can be very self-critical. I was down-sized from my job in 2005 and had been working temp jobs, the economy is very depressed in Michigan. So, I have no insurance and no follow up care. I am fairly certain I need to have my lungs and stomach checked but cannot afford it. I am still looking for help with medical costs. Thank you for the words or encouragement. I will ask my husband of 38 years to wear a patch for a few days and maybe he will understand why I get so afraid to do certain things.

incogjsm
Posts: 6
Joined: Jun 2009

I had this cancer too although I didn't lose the eye. And it IS a big thing. And you deserve to have time where you just let yourself feel bad. It's a really, really hard thing. And while I try to be positive about it, sometimes I just get tired of being spunky and upbeat. So I let myself just feel bad. But I am also a total advoate for antidepressants if the feelings are taking over and interfering with life. Once I went on them I wondered why I hadn't done it early.

There is definately life after eye cancer...although it is different. But it takes time to work through the feelings about this....and you may go through cycles of different feelings more than once. But it will get better. Tell your family it IS a big thing.s and that they have to give you some space to deal with this. Explain how you're feeling. From a support group I go to at Gilda's Club (which I totally, totally recommend) it is not uncommon for family to have the "Ok, it's over now, let's go back to normal" reaction. Also, if thre is a support group in your area I would recommend it, it really helps to talk with people who understand what you're going through. Good luck!

springm
Posts: 6
Joined: Jan 2010

i also have been dealing with eye cancer this past year and fianlly started looking for support online. my friends and family have been great but i need others who have been going through what i have to talk to. i am in another depressed mode since i did get good news that the cancer is gone! but now the radation killed good blood vessels in my eye and i am getting injections in my eye to treat macular degeneration to try and slow the process of me going blind. i am 28 and i am sick of going through all this already. all the doctor visits, tests, poking, pictures and what not. it is never ending. and to top it off my liver is stressed so they have to try and figure out what is going on there! it is just a very stressful year and tiring. at times i just wish they would have taked my eye and i would have been done with it. if i didnt have my therapist and my anti depressants and my fiance to keep me sane i dont know what i would do!

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