Maya experienced changes to her vision in 2019, and soon after was diagnosed with eye cancer. She has kindly shared her story here of her experiences in the hopes of raising awareness and supporting others going through choroidal melanoma.
Hearing that you have a cancerous tumour in your eye is the worst nightmare possible. It's actually ironic as well, because I studied to become an optician back in Czech Republic. I also work in optics here in England, and in 2019 I found out that I have this rare cancer that affects part of the eye.
What is your diagnosis?
I was diagnosed with Malignant Choroidal Melanoma (eye cancer). It's a rare type of cancer, where only 6 people out of 1,000,000 people in general population are diagnosed. The cause of eye melanoma is not known. But there are risk factors that can increase your chance of developing it, such as fair or red hair, blue eyes, skin that burns easily, maybe even exposure to UV light..
Eye cancer is a general term used to describe many types of tumours that can start in various parts of the eye. It occurs when healthy cells in or around the eye change and grow uncontrollably, forming a mass called a tumour. The tumour is sadly malignant, which means that if the cells continue to grow and spread, the disease can become life threatening. Because the tumour unfortunately sits on my optic nerve, I started to inevitably lose vision in my right eye. Some ocular tumours can grow without any noticeable symptoms for quite some time, so not sure if I was fortunate in an unlucky situation?
There are couple of ways how to treat eye cancer. I had a proton beam therapy treatment done, and as you can imagine, it also pretty much damaged my optic nerve, so I know the sight in my right eye will never miraculously come back. As you know, the tumour can also spread (metastasize) to other parts of the body. The liver is the most common site for metastasis. If it spreads, this cancer can be unfortunately fatal.
I did receive a letter once that said that my prognosis for survival should be relatively good considering that I'm otherwise young & healthy. So yeah, let's get it, because life is calling!
How long have you been diagnosed for?
It's going to be 2 years soon, but I started experiencing my first symptoms in March 2019. At first I was diagnosed with large Central Serous Retinopathy in Brighton Eye Hospital, which was according to the ophthalmologist that I saw there, caused by nothing but stress.
CSR is a medical condition where fluid builds up behind the retina in the eye. It can cause sudden or gradual vision loss as the central retina detaches. A blurred or grey spot in the central visual field is common when the retina is detached. The disease is considered of unknown cause, but the doctors believe that it's probably caused by stress.
The ophthalmologist gave me some drops to use for three months, three times a day, and told me that after the fluid behind my eye will dissolves, my sight should come back. As time went by, I kind of got use to my little issue. My vision never got better. I started to see floaters and flashes that showed up randomly, disappeared for a while and then came back again. I was then referred by one optometrist at work to Horsham Hospital and from there to Moorfields Eye Hospital, where I was diagnosed a month later.
"Moorfields Eye Hospital is an international and globally renowned centre for ophthalmology. They have every speciality under the sun. You are being exceptional well looked after, so you can have peace of mind that everything is in motion now," I was told. And it's true! I'm so grateful to be seen in Moorfields!
What were your signs and symptoms/how did you come to be diagnosed?
It all started in March 2019 when I suddenly experienced slightly blurred vision in my right eye. At first I thought that it was just my dirty glasses and so I took them off and cleaned them couple of times. When I put them on again I figured that it's more like a fog in the centre of my vision. Then I started experiencing all the other symptoms. I was struggling to see even with my glasses on and my vision was very distorted. Letters I was suppose to read were tiny and bent. Straight line didn't look straight at all and colours were not quite the colours they should be. After that I started seeing shadows, and flashes of light also joined the chat. Flashes that looked like comets falling from the sky. Poetic, haha.
I visited quite a few hospitals before I was diagnosed. Brighton Eye hospital, Princess Royal Hospital, Horsham Hospital and eventually Moorfields Eye Hospital. I spent about 6 hours on my first day in Moorfields Eye Hospital, that started with filling tons of papers, questionnaires, following with blood tests, blood pressure, intraocular pressure, measuring my height, my weight, doing heart check, CT scans, ultrasounds of my eye etc. At the end of the day me & my person Ty, got to know the ugly truth.
Had you, or anyone around you, heard of your condition before you were diagnosed?
I honestly haven't even heard of uveal melanoma until I received my cancer diagnosis in November 2019. I mean, it is true that I studied to become an optician back in Czech Republic, so I probably briefly did, but it's honestly hard to remember. I'm also not an optometrist or ophthalmologist, where it goes more in depth. I also never heard of anyone dealing with anything similar. Now I definitely started to be more aware of eye conditions in general.
This is why I feel like we should try to raise more awareness about conditions like this, because it can not only save sight, but even lives. And that's why I'm sitting here at 3 am and writing this article, haha.
Have you had/been able to have or try any treatments at all?
I've actually already had 6 eye surgeries, plus the proton beam therapy treatment in Clatterbridge Cancer Centre, as I mentioned earlier. It's been a hell of a ride, I won't lie. My first surgery was in December 2019, when I had to have 4 tiny marker clips placed onto my eye. They are harmless and are suppose to mark boundary of the treatment area. That had to be done for the proton beam therapy treatment at the end of January 2020. I had some X-rays and scans taken that day as well as the doctors had to build up a model of my eye to make a treatment plan. The beginning of January 2020, I was sent to Liverpool to the Clatterbridge Cancer Centre for a simulation. The purpose was to carry out preparatory work. What happened during the simulation? Mouth piece and mask were made. Preparation for my treatment programme that included taking various measurements and also consultation with a clinical oncologist. At the end of January I was back in Liverpool for the actual treatment.
In March 2020, I had my second surgery. This time it was a vitrectomy & biopsy of the tumour. What happens during vitrectomy? During surgery, the ophthalmologist will make a small cut (incision) or use special blades to insert the instruments into the white of the eye (sclera). He or she will use a microscope to see inside your eye. Your surgeon will use tiny tools to do one or more of these steps: remove all cloudy vitreous, remove scar tissue from the retina, remove any cataracts, remove any object that should not be in the eye, return the retina to its proper position against the back of the eye, use a laser to repair a torn retina or other procedure, place an air or gas bubble in your eye to help the retina remain in its proper position (bubble goes away on its own) or place a silicone oil bubble in your eye (oil removed later during second surgery). This surgery was a case of a gas bubble. The funny part about this was, that I could see the bubble in my eye! It looked so strange! It covered my whole visual field and after few days, it started separating into smaller bubbles. As I was looking different directions, the bubbles were chasing each other. Yeah, until this point I genuinely thought, that I'm not crazy. After some time the bubbles dissolved completely. I felt like a cyborg with this personal videogame in my head. Yep, I'm definitely crazy. Not getting away with this one, haha.
In June 2020, I had my third surgery. This time for my retinal detachment that was treated again with vitrectomy, cryotherapy, laser and this time oil, instead of gas. This surgery was by far the most painful one. I mean.. They put oil in my eye! Not fun! The pain got so bad that I was squeezing my head with both my hands, crying and thinking of scratching my eye out..
In November 2020, I had my fourth one! Removal of oil. I was hoping that this surgery would be the last one, but I was wrong. Obviously my retina eventually detached again, but I also completely forgot that cataract sneaked in too. I remember that once I woke up, I put my clothes on immediately and asked the nurses if I can go home. I felt great! They completely did not understand how I managed to do that and how am I not asleep still. As always, they kind of force you to eat a sandwich, some cookies and drink loads of water before you go. You need to wait for at least an hour before you will be able to leave home and sadly I was not an exemption, uh.
As I already mentioned, the last surgery wasn't really successful, which I knew was definitely a possibility. Every time they reattach the retina there is a risk that it will detach again. Most of the time, the retina can be reattached with one surgery. However, some people will need several surgeries. Failure to repair the retina always results in loss of vision to some degree as well. I was told that I have a higher risk of retinal detachment due to my long history of surgeries and the radiation treatment. And that's mostly because of the scarring. I kind of started to lose hope that I'll be ever able to see on my right eye again, but honestly? I kind of got used to it! It's truly not that bad to see with only one eye. I feel like I can't stress this enough.
After the oil removal, I once again had a gas bubble put into my eye. My vision got better. My shadows came back! About 3 days later, I noticed, that my vision in that eye was completely gone again. My retina fully detached and was just floating around.. So yeah, I could see my shadows once again, just to lose them couple of days later. Didn't last long, huh? I know, I know, it's only shadows, but it was nice to have them, hah.
It was December 2020, and another surgery that awaited me. My eye started to randomly fill with blood (the anterior chamber). The explanation behind this was 2 retinal holes in the retina itself. As my eye was filling with blood, it caused discolouration of my iris that started to look green instead of blue. My eye was then cleaned from the blood and those 2 retinal holes were sealed as well. I got the oil put back into my eye and this time, it's for life. It will stay there, so the retina would not be possibly able to detach again. After the surgery, I was told, that it's not completely in place and it's still elevated under the oil, but the bubble will hold it in place, so it wouldn't be just floating around and causing more trouble. I'm glad it's all good now and my retinal tears are sealed, but I kind of miss the look, haha.
Weirdly enough.. It felt special. I felt special. Stupid, huh?
Last surgery was done in July 2021. The cataract surgery. Finally! Since my eye was inevitably turning grey due to the radiation treatment in Liverpool.. Well, the lens was turning grey.. I was hoping to have the cataract surgery done some time soon. It's true, that it wouldn't be a necessity, if the problem wasn't that no one could actually see inside my eye to monitor the actual tumour as the lens is getting stiffer and cloudy.
How has the condition impacted your life? / How does the condition affect you?
Few things I noticed since I lost vision in my right eye is, that I'm bumping into people much more often, hitting my hips into doors and tables and pouring water outside a mug or a glass. I always make this joke, that it's not my fault, that it's my bad depth perception! But the truth is, I was always a bit clumsy, haha. Sometimes it feels silly, but all you can do is literally just smile and move on.
I also accidentally sat on one guy on train while I was on my way to work. Sorry! I mean, I did start hysterically laughing because of the embarrassment I felt, but then I apologised and briefly explained, that I'm actually half blind and that I couldn't see him on that side, while trying to slowly back off. I turned around and ran, haha.. (I was also being a bit stuck on my phone which I guess didn't really help, ups) What a day!
Crossing roads is also a lot of fun sometimes. I guess you just have to move your head a bit more.
In addition, I get easily spooked when I can't see someone approaching me from my right side and then the person decides to speak to me. I jump almost every time it happens. Don't do that! It's not cool!
And I guess I will never be able to see Avatar 2 in 3D as well. That's a bit annoying when I think about it, haha.
As you can hopefully tell, I'm always trying to stay positive, but it is hard sometimes, I won't lie. I've been also diagnosed with anxiety & depression and having this condition certainly doesn't help. It can indeed get under your skin from time to time.
What have you learnt about yourself through having this condition?
Cancer is a strange thing. It scares you, makes you feel weak, broken, angry and numb all at the same time. But it also shows you the beauty around you that you didn’t see before, and brings around the awareness in your life that I honestly believe could not have been awaken in any other way. It’s a blessing and a curse. Both at the same time. I started to appreciate everything that I have in life, even the tiniest things and I don't take anything for granted.
I definitely started to appreciate myself & my body more. My body is so strong! The amount of surgeries I had done and how my body handled it, is incredible. But also my mind! My mind is playing games with me since I can remember and since I was diagnosed, I was constantly being pushed to my limits. I genuinely thought of giving up on life many times, because I felt like I'm being knocked down all the time, but then I always managed to somehow get up and fight back. Thank you!
I also got to learn a lot from other people with different eye conditions and a lot from visiting the hospitals in general and all that also helps me to employ my knowledge at work. It helps me to understand better how some patients feel & what are they going through. Especially when I'm dealing with visual problems. Believe it or not, but when you show that you are actually actively listening, people are more likely to share their struggles with you.
I found this whole journey more interesting than sad! I'm not saying that people don't feel sad throughout their journey, but I feel more interested in learning about this whole process than actually being sad. I caught myself thinking many times about the fact that I may not yet realise what this means for me and that deep at the back of my head I feel worried & scared of what is going to happen once I'll realise. Who knows.. Maybe big, huge, nothing, haha.
Do you have any advice for newly diagnosed people?
1) You are NOT alone! I know it sounds like cliché, but it's true. No matter how hard it is and no matter how alone it may feel, you are NOT alone!
2) Cancer doesn't mean a death sentence! That's something I had to realise and it took me quite a while to understand. I mean of course it can be fatal, but you can as well live for decades, no one knows! Live your life to the fullest and stop wasting your time and energy on these intrusive thoughts about death. Live your life to the fullest, while you can. Everyone is sadly going to die one day, there are no exceptions!
3) Don't give up on yourself. It may look like a lot is happening, because it probably is and so it's a hard pill to swallow, but you got this. We got this! Keep fighting!
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