LETTERS FROM FRIENDS (page 1)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
Thank you so much for your website. I'm a 54 year old female that was diagnosed with melanoma in my left eye on Oct. 25, 2000. It was a whirlwind of tests, second opinions and before I could turn around good I was in the hospital 2 weeks later to have my eye removed.
Like all of you, I was very afraid of having the wrong eye removed. My Dr. assured me that he intended to go all his career without doing that. He went thru all the steps that they would go thru. It was a tremendous help. Even though they had marked my eye to be removed with a dot-he came in and asked me which eye, he looked to make sure and then he took a big huge black marker and drew around my eye. That alone was reassuring.
The difference for me has been-he wanted to wait for 8 weeks to make sure my eye had healed to get my prosthesis. My eye has a clear plastic shield where the prosthesis will fit. I've worn an eye shield over the outside of my eye while I have been waiting. Things were ok until this past week when it just became too prolonged. I replaced the shield with an eye patch. It is much better. I'll be getting my prosthesis on Feb. 9. That will be one proud day for me-like Christmas, birthday and all the holidays wrapped into one.
Thanks so much to Jay for providing this website. I now know what to expect and am looking forward to it without any fear of the unknown.
Its really good to know all of you have gone thru this before me. It gives me hope and lets me know there is a lot of life left to live.
Thanks,
Frances
Hi,
My name is Minta I lost my eye at birth. All of the things that you have discussed has been natural to me. I feel myself lucky. Anyhow, I am 21 now and I just recently had my bad eye removed for a lovely prosthetic to take it's place. It has definitely been a transitional period for me which is not yet over. I had the enucleation last month and will receive my new eye just before Christmas this year. The best present I will ever have.=)!
I just wanted to drop you a line because I think your site is wonderful. The site is a great support resource for other people who are scared and don't know where to get the correct info. I applaud you... Take care and have a wonderful holiday
Hello,
I have recently found your web site. It is very inspiring, I must say.
However, I would like to comment on the depth perception and conception that some sports may be difficult. This includes the peripheral vision as well.
I lost my right eye to retinoblastoma as a child (5 months). I am 29 today. I am a Canadian National Equestrian Champion. I have been on some of the most vigorous cross-country jumping courses (on horse-back) in our Canadian provinces have been on most occasions one of the only members of our team to complete the course successfully. Along with this, I have completed Stadium Jumping, Dressage, Road Hack and various other equestrian sport divisions.
I am very proud of my success as a professional and an individual and continue to prove that having two eyes is hardly more advantageous. The depth perception and peripheral vision for the above mentioned sport is important and it is a fast paced sport. You are galloping up on these obstacles and have to know exactly when to ask that horse to get over the jump. You also have to judge the width and depth of the jump. Some courses have you jump in and jump out quickly of small areas which takes good timing and again, depth perception. I am also a Search and Rescue volunteer and find myself in the brush at night and for long hours searching for lost victims. This as well can demand depth perception and peripheral vision.
I have recently won a competition for employment to be a Conservation Officer (I presently hold a Admin. position with the same department). I had to undergo the conditions of employment which consisted of a medical, pshyc. and Physical Capabilities test. I passed two of three and the Department told me I did not pass the vision acuity standard which requires two eyes. I will NOT accept this, on a personal level and on behalf of every individual that has monocular vision.
It all boils down to determination and quality of life. A person can do anything if they put their mind to it. If it is in your heart, it will happen, you will make it happen.
I am currently fighting the Dept. and expect to have a good outcome. I hope that every individual with monocular vision can have the same outlook on life and live it the same as if they were binocular. There's simply no excuse not to.
God Bless
Kim
I have just read your website and am really impressed. I am 47 years old and was diagnosed on Jan 26th with melanoma of my right eye and the cancer was on my optic nerve too. I had my eye removed on 8.3.00 at Moorfields eye hospital in London. I agree with everything you say. I was terrified and my worst time was pre-op. Once it was over I was fine and what you say about depression and how everything is the same is so true. The only difference here is that we are fitted with a temporary eye for a few weeks which is not made for us and I found that the worst thing. Once I got my 'own' eye I was fine and I have super trendy tinted specs. I have pre-carbonated glass in them they are completely shatterproof.
I am on my daughters computer now and I have to go, I will be in touch again and tell you more about things here. I believe you may have had an e-mail from Wendy from North of England, I chat to her on the phone from time to time.
I had my right eye removed due to melanoma in March, 2000, and actually came across your site after the surgery and right before my visit to the ocularist. I found it extremely helpful in several areas and gave the web address to my ocularist as a resource for her patients. Being a nurse, I know that mistakes are made in the OR, and the first thing I said the morning of surgery to the nurses was, "RIGHT eye, not left...RIGHT eye, not left"....being an eye hospital, they marked my right eye with a black marker after asking me which one it was (to be sure we agreed). That was my worst anxiety, that my "better" eye would be removed accidentally and I would end up with no vision. Of course that did not happen. Your section for driving with monocular vision was also very helpful.
Right now I'm experiencing some additional challenges as I had to receive 6 weeks of radiation treatments prophylactically for extension of the tumor. I have very dry eye, yet it weeps all the time, no eyebrow, no eyelashes, a big "hole" of hair loss on the back of my head and very dry skin. Of course, I'm told the hair will all grow back evenually. But coping with the eye socket and prosthesis that is weepy at the same time it is dry drives me crazy at times. But through it all I know it could be worse many times over! Again I appreciate your site with its information.
Read your web-page with interest
In the summer of 1993 a routine eye test revealed an abnormality behind the pupil of my left eye and like you I was sent post-haste to my local hospital. After a second opinion and many tests malignant melanoma was diagnosed.
Six weeks after the initial diagnosis my left eye was removed. I wondered how I would cope. To my Knowledge I had never met anyone with one eye-apart from the lady the hospital asked to call on me just before I went in for the operation. Her diagnosis had been different from mine, but her artificial eye looked fine. She also had no qualms about removing it for inspection
In the early days worry about the cancer far outweighed the problems that resulted from losing an eye Though I recognise the need for speedy action in cases like mine, I do believe the mind needs time to adjust.
I don't suppose I have fully accepted how I look, although most people say they cannot tell the difference between my real and artificial eye. I shall know I have fully accepted it when I can leave home without my tinted glasses.
Because there was no one to talk to about my fears and how I felt seven years ago when it was happening to me, I set up a local group ( with the help of the local blind association ) called ONE VISION. We offer support information assistance and understanding to people with monocular vision. The word spread and soon calls were coming in thick and fast from all over the UK Our work continues and at present discussions are being held to decide if we should become a registered charity
I must say I really laughed when I read the bit about you writing on your forehead before the operation You seem to have a really good positive attitude, that really helps. I was very negative at the time and without the daily support of husband and family I would have found it difficult to cope.
I hope your web-site goes from strength to strength and I hope to set up something similar here in the UK.
Best wishes Wendy. [UK support group can be contacted at wendy.henley@ntlworld.com]
