I feel useless

Hi, I am 24yrs old and was diagnosed and lost my eye within a month last year with Choridal Melanoma. I had never heard of such a thing before it happened to me and that makes me angry. I had never been an angry person up until then. June 2010 is when my vision in my right eye went blury. I hadnt been to the eye dac in 3 yrs at that time due to lack of money and time. I know excuses excuses, we all have them. Well to make that long story short a massive amount of appointments later it was determined that my Choroidal Melanoma was 1 and a half mm big and my option was radiation or enucleation. Now the kicker was that I was 11weeks pregnant at diagnosis. So I had decisions to make according to my doctor. Abortion "which by the way I was STRONGLY against." Radiation, which could harm my son, or chance enucleation which my son may not survive because he was so early in the pregnancy. I chose enucleation. My vision was already blurred and if I had radiation my baby could be harmed. Also according to the doc id have to be seen every 3 months for the rest of my life for radiation and I would lose my eye sight completes because of radiation in a few years anyway. Yeah, so I picked eye removal. It's coming up on a year on July 8th since my eye removal and I still struggle. My son is now 6 months old and my Prosthetic looks great. I see an eye doctor regularly because I was recently diagnosed with Glaucoma in my left eye and am losing sight there as well. I also see an oncologist. Phew.....Anyways, I wanted to tell my story. I have a battle going on inside me. I wake up every day scared that I'll either go fully blind, or they will find more Melanoma. I dont know. Im to blind to drive and can barely see a thing. 24 and I feel useless.

Comments

  • theycallmemomma86
    theycallmemomma86 Member Posts: 7
    Sorry for all the spelling
    Sorry for all the spelling errors. Its a blind thing lol. Also forgot to add that my melanoma ended up being over 2cm big. So yeah, I made the right choice.
  • tanker sgv
    tanker sgv Member Posts: 124 Member

    Sorry for all the spelling
    Sorry for all the spelling errors. Its a blind thing lol. Also forgot to add that my melanoma ended up being over 2cm big. So yeah, I made the right choice.

    Have you contacted guide
    Have you contacted guide dogs of the desert? My grandmother was blind and they gave her all kinds of assistance. Also have you learned how to read Braille? I couldn't imagine how you must feel, I'm 27 and don't know what I would do if that happened to me. I do know that my grandma would catch me sneaking candy from the kitchen no matter where she was in the house. So in some ways she saw more than most. But I just wanted to tell you your not useless and their are many things you can still do like skiing or riding a bike useing echolocation. But most of all you can teach your son that life is so much more then the eyes can see; its the sounds of a child's laugh or the warmth the heart feels knowing it is loved or better yet the sensation of comfort and security from touch as a mother embraces her child ; those are just a few things that you can't get from sight. On another note I'm not sure if you have Facebook but I have a cause on their that is about raising equal awareness for all cancers, hope you check it out and "like" it. https://www.facebook.com/pages/A-Ribbon-For-All-Cancers/186052438109112
  • theycallmemomma86
    theycallmemomma86 Member Posts: 7

    Have you contacted guide
    Have you contacted guide dogs of the desert? My grandmother was blind and they gave her all kinds of assistance. Also have you learned how to read Braille? I couldn't imagine how you must feel, I'm 27 and don't know what I would do if that happened to me. I do know that my grandma would catch me sneaking candy from the kitchen no matter where she was in the house. So in some ways she saw more than most. But I just wanted to tell you your not useless and their are many things you can still do like skiing or riding a bike useing echolocation. But most of all you can teach your son that life is so much more then the eyes can see; its the sounds of a child's laugh or the warmth the heart feels knowing it is loved or better yet the sensation of comfort and security from touch as a mother embraces her child ; those are just a few things that you can't get from sight. On another note I'm not sure if you have Facebook but I have a cause on their that is about raising equal awareness for all cancers, hope you check it out and "like" it. https://www.facebook.com/pages/A-Ribbon-For-All-Cancers/186052438109112

    Oh I will definitely check
    Oh I will definitely check out the facebook page. And thank you for the words of encouragement. I've been considering learning braille. Im not fully blind yet, but figured Id get a head start considering I have only one eye. Luckily im able to still see my sons. I also like the fact that you seem adamant on equal support for ALL cancers. It very much angers me that I see absolutely nothing anywhere about Choroidal Melanoma. Then again, about 1 in 1600 people in the WORLD are diagnosed a year. I dont know. I actually created a page on Facebook today because im that serious about awareness. I cant imagine how many people out there may have it. I was to late, and lucky that mine hadnt spread. Although they removed my eye and all the optic nerve, there is always a chance for it to show up somewhere else. Im just so glad to have someone to talk to that understands on a first hand level. I have a wonderful support group of family members and my husband is my best friend, but some days I feel like no one REALLY understands.
  • tanker sgv
    tanker sgv Member Posts: 124 Member

    Oh I will definitely check
    Oh I will definitely check out the facebook page. And thank you for the words of encouragement. I've been considering learning braille. Im not fully blind yet, but figured Id get a head start considering I have only one eye. Luckily im able to still see my sons. I also like the fact that you seem adamant on equal support for ALL cancers. It very much angers me that I see absolutely nothing anywhere about Choroidal Melanoma. Then again, about 1 in 1600 people in the WORLD are diagnosed a year. I dont know. I actually created a page on Facebook today because im that serious about awareness. I cant imagine how many people out there may have it. I was to late, and lucky that mine hadnt spread. Although they removed my eye and all the optic nerve, there is always a chance for it to show up somewhere else. Im just so glad to have someone to talk to that understands on a first hand level. I have a wonderful support group of family members and my husband is my best friend, but some days I feel like no one REALLY understands.

    Anytime, feel free to always
    Anytime, feel free to always vent. Send me your link and I'll add it to my page also you can go to the resources area on this site and post your page for others to link over to. I would consider learning Braille if for nothing you might be able to turn this negative into a positive and become a translator for the blind, look at it this way you have a unique position as you can "see" both sides of the issue....lol (I hope that wasn't offensive as I know laughter is often the best medicine) good luck and thank you for advocating for yet another "unpopular" cancer
  • theycallmemomma86
    theycallmemomma86 Member Posts: 7

    Anytime, feel free to always
    Anytime, feel free to always vent. Send me your link and I'll add it to my page also you can go to the resources area on this site and post your page for others to link over to. I would consider learning Braille if for nothing you might be able to turn this negative into a positive and become a translator for the blind, look at it this way you have a unique position as you can "see" both sides of the issue....lol (I hope that wasn't offensive as I know laughter is often the best medicine) good luck and thank you for advocating for yet another "unpopular" cancer

    Lol that was not offensive.
    Lol that was not offensive. You would not believe the amount of humor I find in my situation. I use a lot of pirate jokes and I tend to tell people when they piss me off that im going to throw my "eye" at them.
  • thomasman
    thomasman Member Posts: 20

    Lol that was not offensive.
    Lol that was not offensive. You would not believe the amount of humor I find in my situation. I use a lot of pirate jokes and I tend to tell people when they piss me off that im going to throw my "eye" at them.

    you'll do good on national
    you'll do good on national talk like a pirate day! my back has a LOT of scars from wide area excisions and cutting out other tumors, plus a pretty scar under my arm from lymph node removal. i once had a friend at my house see me without my shirt and didnt know i have melanoma or what i've been through. when he asked what happened, i said," shark attck...out in lake michigan." i dont know about him, but it sure humored me!! you are a child of God and god dont make useless junk. you have a lot of experience to help others out, and have helped me already tonight.
  • formymother
    formymother Member Posts: 1

    Lol that was not offensive.
    Lol that was not offensive. You would not believe the amount of humor I find in my situation. I use a lot of pirate jokes and I tend to tell people when they piss me off that im going to throw my "eye" at them.

    salute you
    my mother has recently been diagonosed with Choroidal Melanoma in her right eye. She is so worried about the removal of her eye. I cant tell you how I am feeling for her. Her melanoma is 1.8cm, she says that she want to save her eye at any cost!!! and as you have said, that there is a possibility of spreading in the body, doctors recommending for removal. though they say that there is cure in some countries such as singapore..
    Anyway, I also wanted to tell you that the hope that you prvoided by sharing your story is commendable. Perhaps you can give some advice to my mother ( around 70yrs of age) that there are some tough decissions to be made in life, and that life is full of trials and tests. One who overcomes these trials will be gifted and rewarded in hereafter, tremendously. Also, it is a trial for the people around you, as God will test them how supportive or not the relatives and friends became after the disease hit.
    I hope that you I can share my and my mothers concerns, and perhaps you could advise us from your experience and intellect.
    Thanks,