Diary of an ocular melanoma patient

By Illana Klevansky, Perth

Seeing the light!

Three years ago, in 2021, I was diagnosed with ocular (eye) melanoma. The news was so traumatic. I began dealing with it in the only way that I tend to deal with things, and that’s by writing down my thoughts and fears. So, I started a journal. This excerpt chronicles the events leading up to having my eye surgically removed and my post-operative experience along this life-changing journey.

10 February - 11 June 2021: Diagnosis

It began in February when I had my annual eye health checkup at Specsavers. The optometrist, who I’d seen several times in the past, showed me photos of my eye over the previous couple of years. She pointed out that there was a tiny freckle in my right eye. A little freckle. A naevus. So benign. But at this latest visit she shocked me by saying that something serious was happening and that I needed to urgently consult an ophthalmic specialist as I could have an ocular melanoma on the rim of my optic nerve.


There and then, she referred me to Dr Tim Isaacs at the Perth Retina Clinic, and three days later I had an appointment with him.

I feel like all my senses have shut down! I still cannot believe it! I had my first consultation with Dr Isaacs, who wants to run a few more tests, as well as giving me some time to digest all this information. He discussed experiences of other patients, people like me who desperately hoped to hang on to their binocular vision.

But he explained that the probability with an ocular melanoma such as this, there were few options ahead. The most drastic, and the only way to prevent the cancer from spreading, is to remove my right eye. As hard a prognosis as it is now, Dr Isaacs says that I will cope very well if my eye is removed.

I’m senseless! Can’t describe my terror. I’m blindsided. Can’t stop crying. I feel I’m in a dark tunnel, without seeing any light ahead. Will I still be able to cry from both sides when one eye is gone? I have cancer. And I must face it.

Dr Isaacs referred me to Artificial Eye Services, who make prosthetic eyes for people in my situation. So, I’ve now met with Jenny, Paul and Emily Geelen. They explained how their ocularist services have successfully helped many patients over a long period of time. They’ve assured me that they’ll make a temporary prosthetic, which will be inserted during the surgery. Then, after a few weeks, they’ll manufacture a permanent prosthetic, which will be moulded to fit my eye socket, and which will give me greater confidence.

14 June 2021: Before the surgery

I’m immobilised. It’s so big to comprehend. The operation looms. Feeling fragile and fragmented. Today was my final consult with Dr Isaacs. He was very kind and careful with me, because he realises that I’m so anxious about what’s ahead. We are lucky to have Dr Isaacs give us as much information as possible. At the end of the day, my wonderful husband Ian and I are acutely aware that Dr Isaacs is trying to save my life.

I’m doing everything automatically, but I am treading water in a state of suspended animation. I cannot speak to anyone around me because my fear is crystalized into silence.

This time next Friday I’ll only have one eye. But I won’t have cancer. Can’t think. Am terrified. My new reality. Disfigured. Distraught. I’m diffused with sadness.

Most of all, I’m consumed with fear. I’m trying to think ahead but worry about how my world will look for the rest of my life.

A one-eyed view of the world, no pun intended. Wish I could laugh at my own stupid witticisms. Wish I could stop crying. Wish I could go back. Wish my parents were here. Thank God they don’t have to see me like this. So many regrets. So many memories. I need to stop wallowing! Ian and I lie awake at night, not daring to voice our fears to each other. Yet I know what he’s thinking…

I keep looking at my eyes in the magnifying mirror. They look perfect. Blue. Beautiful. Deadly.

I keep thinking of everything I need to do with both eyes. Books to read. Stories to write. Movies, things, places to see. Wish I could stop thinking. Wish I could turn off the words whirling inside me. Wish this wasn’t happening.

How will I look? Will I be able to look at my half face? It’s so confrontational!

Will those around me look at me and recoil? I’ve had many health issues over the years: a melanoma on my scalp, a melanoma on my leg, now a melanoma within my eye! Each time, I’ve bounced back, but this time I don’t feel very strong. I must keep reminding myself: I’m NOT a victim! I’m just SO SAD!

I don’t want to wake up next Friday to face what’s happened to my face. Don’t want to think how to be calm. How to glibly chat and reassure everyone that I’m coping, acting as though everything is fine. Yet I’m devastated! I don’t want to alarm my family that I’m terrified, immobilised with fear, but I need to show them that I’m strong.

Donate to ocular melanoma research to help patients like Illana

15 June 2021: Surgery is only days away

I’ve rationalised my fear into three areas:

  1. I have cancer. That’s HUGE to deal with.
  2. I’m going to have one eye with which to see. That’s daunting. And this is for the rest of my life.
  3. I’ll be disfigured. My new face will be very different to my previous face.

So, these last few days before surgery, I’m taking photos of my eyes so that I remember how I used to look.

I still can’t believe this is happening to me, it’s quite surreal. It’s inconceivable that I look so normal, yet there are deadly cells growing inside me!

I keep crying.

I CANNOT CONTROL MYSELF. Every couple of hours it hits me, and I think OMG, this time next Saturday I won’t have my right eye. Never could I have imagined that I would accede to having my eye cut out of my face!

8 July 2021: Three weeks after surgery

NEVER! Inconceivable! Unacceptable! Yet here I am, nearly three horrible weeks later, with only one eye! I must keep reminding myself that this was done to give me a second chance. That this will give me and my family a healthier way to live our lives together. My bruises are healing. In the next week, Artificial Eye Services will fit me with my made-to-measure new eye.

I’M SO GRATEFUL THE WORST PART OF THE LAST FEW MONTHS ARE BEHIND ME! Thank God for Ian. I don’t know how he’s put up with me through all this. I’m lucky!

With each visit to the Geelens, as confronting as it is to force myself to look at my unfamiliar new self, it’s incredible to watch them at work as they spend so much time fashioning my permanent prosthetic. They are so painstaking in the way they look at every colour striation in my left eye. Their artistry is simply awesome.

2 February 2022: Six months after surgery

IT’S MY 70TH BIRTHDAY. What a year this has been! But I’m healthy!

When I reflect on the last few months, I realise that I’ve learned to trust my own intuition. I’m becoming accustomed to the fact that my left eye is compensating for whatever I used to do with binocular vision. Thank goodness that after six months, I started driving again. Very cautiously. I work out where I need to go, which roads I need to negotiate. When will I need to change lanes.

This is what upsets me the most: It’s taken time for me to look at myself in the mirror with my new prosthetic eye, which was perfectly created by Jenny, Paul and Emily Geelen. For me, it’s very confronting when my prosthetic needs to be removed for cleaning.

I still can’t look at myself without being very emotional. There are still moments when I can’t reconcile the visual ruin of my right eye. But when my prosthetic is in place, and over time, I’m getting accustomed to presenting my new face to the world. Friends come up to me and inspect my face, trying to determine which eye looks different. My artificial eye is very comfortable, and perfectly colour-matched to my left eye, which is due to the amazing and professional artistry of the Geelens.

12 May 2023: A new health concern

As I was starting to move on from my ocular melanoma experience, I suffered an aortic dissection, requiring emergency cardiac surgery, and then I had two small strokes. I’m still not allowed to drive, but that’s a minor temporary setback. The best news of all: after worrying about the health of my heart and brain, I NEVER think about the loss of my right eye!

12 May 2024: Three years on

I need to express my everlasting thanks to the incredible support given to me by Dr Tim Isaacs at the Perth Retina Clinic, and to Jenny, Paul and Emily Geelen at Artificial Eye Services. Between this team, my ocular melanoma was handled with complete professionalism and kindness, as they guided me through the darkness of my trauma to seeing the light!

After three years, I’ve come from a drastic diagnosis to the light of living. I now have follow-up PET scans every six months and am completely comfortable with monocular vision.

I’m extremely grateful that I’ve been given TWO life-saving chances to live with my incredible husband Ian, watch my children and grandchildren grow, and to thank everyone who is still involved in safeguarding my health.

Sharing her journey at the 2024 Australasian Ocular Melanoma Alliance Virtual Summit

Illana will talk about her ocular melanoma journey at the 2024 Australasian Ocular Melanoma Alliance (AOMA) Virtual Summit on Saturday 15 June 2024. Registration is free and open to anyone, anywhere in the world. For more information visit the AOMA Summit webpage.

Donate to ocular melanoma research to help patients like Illana