I am a 26 year old woman who recently chose to have her eye removed to stop the spread of a rare and aggressive cancer. Ask me anything
I had adenocarcinoma in my lacrimal gland and I chose the best option for seeing my young children grow up. I have adapted well and I am using this rubbish year to start an eyepatch business to help others feel confident after surgery or injury.
Post surgery, orbital exenteration
[Edit] Thank you to everyone for the wonderful comments, hilarious jokes and brilliant ideas. I can't believe how much interest this received and thank you for the gold kind stranger. I've added the example prosthetic I was shown, mine will look younger and be matched to my skin tones, eye colour etc.
I had been getting headaches for a while, my eye started to swell up and I had double and blurred vision. I said at the time it felt like my eye was pushed forwards and it turned out it was. I have put a few pictures on my Facebook to raise awareness.
I'm hoping I can have some coloured eyes made up, match my eye to my outfit!
How easy is to change eyes?
They pop in and out of the silicone that will make up my eyelids, so very easy I imagine
Wait you lost your eyelids too?
I had an orbital exenteration, it's the whole contents of the socket removed and the eyelid, due to the position of the tumours
Will you be getting a bionic eye now?
That would be nice.
I'm sorry to hear about your rare cancer! Losing an eye is something I can't relate to, but I'm glad you're able to keep your life and family and press forward to a better, healthier future!
You're very brave to not only endure all of the procedures and share it with Reddit, but can you see why kids love the taste of Cinnamon Toast Crunch?
Aye, I can half see ...
I was coincidentally just wondering about this on my lunch break, dunno if you're still answering but if you're not maybe someone else can answer even...
Does the vision from that eye go black (or whatever colour it might be) or does it just..... disappear? I don't know how to describe what I mean really.
I love this question, I wondered the same before my op. It was strange, to begin with it was almost white, then static now black. But it's not the same as having both closed when I wink if that makes sense.
Was everything, even the prosthesis, covered under insurance for you?
I'm in the UK. Big up the NHS. I'd never have been able to afford any of this without them.
I'm glad the NHS took care of you. If you don't mind my asking, what is the process like? Did it take a long time to get appointments and procedures?
Thanks in advance and I wish you the very best recovery and success with your eye patches :)
Cancer operations have special priority in the NHS (must be seen by a specialist within 2 weeks of referral, often much sooner and there's a similar thing for treatment which I think is within 6 weeks from presentation) . OP was probably seen and treated within days-weeks or presenting to her GP.
This is correct, An urgent referral must be seen within two weeks, it was all very quick.
Were you previously the type to wink at people? How will you address this issue now? Are you worried about people mistaking blinks for winks? Do you notice your nose more now? Oh god now Im dying to know. If you answer any of my questions let it be the nose question...
I didn't tend to wink at people but ironically I could only wink with the left eye so I still can but it looks like I am blinking to other people. Feels the same to me though, so does blinking. I really didn't notice my nose more but thanks for pointing that out for me! Haha it doesn't really get in the way though.
You mentioned earlier you are also missing the eyelid. Do you have a "phantom eyelid"? Does it feel normal? Or do you feel like you can't blink that side?
I do, it's twitched a few times in the past, drives me crazy.
Do you rock a stylish headband over your eye?
You need to check out my pages above. I rock a customised eyepatch, I make a new one for everyday
My wife was diagnosed and treated for the same condition in 2010. It was quite and ordeal but her recovery is complete. Now living a normal life minus a bit of peripheral vision. Depth perception at short distances was tough at first but you adapt.
Where did you receive your treatment? We are from Canada but travelled to Miami to the Bascom Palmer for specialized treatment.
Good luck with your continued recovery. If you ever want to chat with a fellow survivor PM me and I will pass it along to her.
I am from the UK so most of my treatment was London or my local hospitals. Thank you for your kind words and I wish you both the best for the future. It good to hear she has recovered well.
I worked with a guy at Kings and St Thomas hospital on a project about restoring peripheral vision in people who had lost an eye - he was one of the maxillofacial surgeons there. If you are interested, drop me a pm and I'll see if he's still working on it.
That's amazing thank you.
Got any pirate themed eyepatches? Or are all eyepatches pirate themed by default?
Most other patches I could find were pirate themed which is why I started making a wider variety. I have made an anchor patch for a pirate pantomime though so anything is possible. I make them to order so I can customise them to suit the customer.
Fellow one eye person here. Honestly, if I could have got a cool eye patch at the age of 12 when I lost my eye, it may have made middle school a little little less hellish for those few months. So best of luck to you and what you're doing!
This is the reason I am doing this, thank you for your well wishes.
Have you ever used the "I have my eye on you" joke as of yet?
I have so many eye - deas. I can't wait until it's fully healed the pranks will be immense
sorry to hear about your eye firstly. How has this affected your daily life?
For the first few weeks it was very painful and I was very self conscious but now I have lost some peripheral on my right side but it doesn't really affect me massively. It's a small price to pay I feel.
oh that sucks, i hope everything works out for you!!
Thank you, it was the right choice to make in my situation so I feel very positive about it.
Yikes that's rough Sorry to hear it Are you considering getting maybe holiday themed glass eyes? Like ornament eyes? I think that would be pretty shwanky
I saw a picture of a rainbow eye and I want one, I wonder if I could get a festive eyeball.
OK, since you seem to have a sense of humor, are you going to prank people and say things like "I'll keep an eye out for you"?
It was one of the first things I joked about after finding out I needed the eye removed. The pranks I can play and the jokes that can be made.
So all of us one eyed Redditors are planning an uprising, you down?
But seriously, from a fellow eye patch enthusiast, way to channel something terrible into something awesome.
Thank you fellow cyclops
Have you ever thought about a glass eye? If so, what's the process for getting one?
I am getting a prothesis, I had titanium implants fitted during my exenteration and once I am fully healed I will have magnets attached which will hold my prosthetic eye. As I am missing my eyelid, that is going to be made out of silicone and the glass eye will sit inside that. The prosthetic team will be making a mould of the cavity soon and they will use a computer to match the skin tone. The eye will be painted to match my other one.
Have you considered getting a cool chrome eye or something not designed to mimic a human eye? (This is a serious question due to the 'uncanny valley' effect.)
I hadn't, I expect it would get rather cold! It would look pretty cool though
Are implants and magnets standard now, or is this because you lost the surrounding tissue? From old movies, I thought glass eyes were just balls you could pop in and out.
I had an exenteration, which is the eyeball, eyelid, and all the muscles, tissues and optic nerve removed. I was informed by my surgeon that the eyeball is one third of what fills the socket the other two thirds are mainly muscles and tissue. Therefore I'm having more of a facial prosthesis than a fake eye.
Did you get to keep the eye? I like to think if I had one of my eyes removed I'd have it in a jar on my desk for the rest of my life.
Unfortunately not, it got chopped up and tested for cancer
Depending on the circumstances, they generally do let you keep tissue or hardware that is removed from your body. We've had patients request the remains of their body parts after we've done testing on them (I work in a pathology/histology lab). Sometimes I wonder why, but it is their right. It depends on the hospital or clinic, I'd say.
Maybe I should have asked, haha
Is there any chance in hell you get bionic, see-through walls, laser beam eye?!!
P.S. You're incredibly brave!! Wish you all the best!
If they start making them I'll be first in line,
Real sorry about loosing your eye. I would like to know how long did it take to get you diagnosed from the time you had eye pain and headaches and seen a doctor. What kind of test did the doctors order?
I went to see an optician within about 3 weeks of it being noticeable, I had to chase a bit for the MRI as my referral was lost the first time luckily I had a fantastic g.p. who listened to me and sent me urgently for a scan. The results took 2 weeks and then from there it was so quick. I had a call to say I had to visit a local hospital that day as my scan results were in, they then referred me to a specialist eye hospital that had me in for a needle biopsy, blood tests, chest x ray, CT scan and a debulking operation. Once it came back as cancer I was referred to an oncologist for a full body scan, which took a further two weeks to be confirmed clear, and a MRI of my eyes again. This then showed I still had tumour left behind and due to the very aggressive type the full orbital exenteration was recommended by all my doctors as the best choice.
Have you considered putting a small display on an eyepatch with a low-power bluetooth receiver and battery hidden in your eye socket (or wired through the band to something hidden in your hair), and using your phone to animate the patch while you're talking to people? It could be hilarious to have an eye show up on the patch and slowly get angrier and angrier (or turn into the eye of sauron) while in the middle of a conversation.
That is such an awesome idea, I hadn't but I want one now!
Firstly, sorry about your eye! I can't relate to that, but I've known people who have gone blind, deaf, etc. (Which aren't really the same) but anyway, 1. Kind of disgusting question, but what happens to your eyelids when you don't have an eye? Do they just fall into the socket?shudders Do they remove them in surgery? 2. How does depth perception work for you now, since you don't have two perspectives of vision? How do you manage in places you've never been?
I had mine removed so I don't know, I had an exenteration but some people have just the eye removed. I read an interesting article about this actually, depth perception isn't fully dependent on two eyes, I have to be careful pouring drinks and sometimes things are further away than I think but all in all its not too bad.
Follow up question, which I just thought about, do you wear the white cover in the picture all the time? Also, (I'm having a little trouble understanding your particular circumstance) if you took any covers off, is it just a socket? Sorry I'm just having trouble picturing this
That picture was whilst I still had plaster packing inside so I still have the white dressing but it's not as big now. As its healing inside its just a hole, the skin is healing over like scar tissue and it's very neat, my 3 yr old thinks it's fascinating so it can't be too scary.
Since your operation, how is your depth perception now? Have you noticed any of your other senses being higher then what they were (i.e. Hearing, smell)
My hearing has always been my rubbish sense, I've always suffered with my ears and slight hearing loss so I do think it helped my hearing in some ways. I think I'm getting better with my sense of feel, I feel the floor better, if that makes sense at all, I'm more aware of my right side now too.
Those designs are actually really cute, have you considered taking commissions from people? Do you do sewing-based designs as well, and if not is it something you're looking to incorporate?
How do you feel about people who aren't blind purchasing your eyepatches for stuff like cosplay? Would you be ok with that?
I've sold one for a panto, I would be fine with cos play, I can custom make them to order so anything is possible
We have a family friend who lost an eye on a skiing accident and said adjusting to depth perception was difficult.
Do you know if you will be able to drive again?
I've never learnt to drive anyway but you don't even have to inform DVLA in the UK when losing one eye. I don't know why I find it easy it just seems fine to me.
I lost vision in my right eye as an infant, so I never knew what it was like to lose my vision because it was never there. A few questions for you:
Q: Have you noticed depth perception issues like struggling to pour a glass of water or parking a car?
Q: Have you developed your "Spidey Sense" yet? By this I mean an inexplicable realization that something is getting close to you on your blind side even though you cannot see it?
Omg I didn't know this was a real thing but I really do, that's so cool! The spidey sense that is, spilling water everywhere is not so great.
Have you thought about getting a glass eye? Or do you think that would look too goofy and you're going more for badass?
I'm getting a prothesis but I'll miss my patch
What does it feel like to see with 1 eye? Do you "see" anything different or does it feel the same? I've had these questions since I was a kid.
Looking at a whole room is frustrating as I can't see everything or everyone, but my finer vision is better I feel. It's only a small amount of the right side I can't see, I tend to walk my kids on my blind side so people walk round them and don't startle me
Will you ever dress as Leela for Halloween?
I have thought about it, I have so many possibilities now.
Is it hard for you to read/process information. Since you only have 1 eye now, do you only communicate with one side of your brain, or does it just know that you have one eye now and stills functions the same?
I'm still as slow as ever, haha. I've not noticed any difference with reading or anything.
How has this affected your depth perception? Is it something you get used to fairly quickly, or does it take months/years to become fully accustomed to (if at all)?
Personally I think I'd adapted quite quickly.
I'm sorry to hear about your cancer, but you're an inspiration! I love how your experience created a business that will possibly make this experience a little more bearable for others. :)
What is your eye color? Did you consider getting your prosthesis painted a color different from your other eye?
I have, purely because it sounds dodgy telling people about my brown eye
Not a question but I'm so terrified of cancer that if I get it in any part of my body my first response will be to cut the thing out. Cancer in the shoulder? Bye bye arm.
Doesn't always work like that. Melanoma in my lung. Begged them to take the lung but since melanoma travels through the bloodstream doc said no. Sun screen is your friend!
I'm so sorry, this is exactly why I know I'm so lucky
What do you think of stem cells?
Awesome, I really think more research needs to be done, the possibilities could be fantastic
Assuming you haven't already due to the bandage, how do you feel about being able to see in your eye socket? Is it something you'd rather avoid due to squeamishness or does it not bother you?
I have seen it, it shocked me at first but I've been cleaning and dressing it in between appointments to speed up the healing so I'm used to it now. I think it's insanely cool.
What odds of beating the cancer were you given with removing the eye and not removing it? Given the odds, was it an easy choice? (I can't think of a better word than "easy". I know it wouldn't be easy... Obvious? Clear cut?)
I could have had just the gland removed but if the margins were not clear, which was very likely, I would have needed radiotherapy behind my eye. This would have left me with a painful and useless eye. So it was a pretty easy decision once I knew all the facts.
I really admire you for making a hard decision like that! I hope your recovery is speedy :)
Your eyepatches are so cute! Have you thought about doing some fabric covered ones? For times when bedazzling is just a bit too much. You could also sell like, matching scarves out of the same fabric?
I have been planning some fabric ones. I've just started with the glitter ones and I think fabric would be give me even more options, A fluffy one would be really cute too.
If forced to make a decision to give up your only remaining eyeball, would you do it?
I would if it meant my life, I have kids, I had a massive panic and got my doctors to check but they assured me I'd have to be incredibly unlucky as I had it removed with clear margins.
I'm curious as to what they do with the surrounding area inside where your eye used to be when they remove it. Do they basically just remove the eye and that's that? Or do they do anything to the inner area where your eye was since it's now an open hole in your head? I would think that just leaving it as is would be potentially dangerous for stuff getting in there (particularly infectious things) since it's so close to your brain etc. Is just having any eyepatch over it (or prosthetic in it) all they have you do or is there some sort of cleaning procedure you have to do with the socket?
What they did with mine was amazing, my bottom eyelid was stretched up and sewn into place to form the back of the cavity. I had a plaster packing for a week so it healed to the correct shape and since then I've been cleaning it myself inbetween appointments. I had gauze for the second week and then silver packing for two weeks and since then it's just keep it clean with cotton buds and boiled water and a dressing pad over the top.
Where you able to, literally, see it coming?
No but I'm brilliant at keeping an eye out now.
Did the thought that you'll never be able to enjoy 3D movies again ever cross your mind when deciding to have your eye removed?
I didn't really think about it until recently and it's slightly disappointing but not enough for me to regret my decision.
What was the give away that something was wrong with your eye? Let's trigger the hypochondria in all of us!
But on a serious note, hope you recover quick. And when you get your prosthesis you should get one freaky looking eye too! For special occasions!
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