Author: Tessa Parry-Wingfield

T minus 51 days….

On 1 February, Mount Kilimanjaro beckons – with its dusty welcome and icy roof. From jungle beginnings (shorts and malaria tablets at the ready) to arctic endings (outfits worthy of lunar explorations) – and more than a smattering of oxygen deficit.

Kili is Africa’s highest peak at 5,895 metres or 19,341 feet. A dormant volcano, it’s also the world’s highest free-standing peak. And while friends have confused me with climbing Everest (I will leave that to the pros), it’s no mean feat.

Dust, wind, cold – and determination.

I am not here for the sympathy vote. No, siree. No pity, please. But I do have an added challenge. Namely, I have monocular vision; blindness on my left side and various stuff that comes with wearing an eye prosthetic is playing on my mind – that wouldn’t even cross yours. Mostly, dust, wind, cold – and the need to protect my good eye at all costs. Because…it’s all I’ve got. I’ve read tales of corneal abrasion. Of freezing of eye sockets. Anything eye-related and scary, I’ve consumed.

This is also making me more determined. Fighting talk! To show that my eye cancer isn’t going to hold me back. To prove that to myself. And to give hope to others going through adversity. That there can be bright, after the dull numbness of trauma. I have struggled to ‘feel’ following everything I’ve been through. To be happy, to be sad. I am sure it’s ‘normal’ of sorts. But I am hoping to find ‘feeling’ again, if that makes any sense.

Put simply, Kilimanjaro isn’t ‘just’ a mountain to me. It’s a statement. I lost an eye to cancer. Living with monocular vision changes everything – depth perception, balance, confidence – and, at times, it feels like the world assumes you can’t do certain things.

"Kilimanjaro isn’t ‘just’ a mountain to me..."

Six: The Summit

But I am far from alone. Five incredible friends are joining me on this epic adventure, each carrying their own emotional bag of rocks as we climb. See here for how our training kicked off in September. New boots on, sun out. Perhaps a far cry from reality. Together, we will face exhaustion, cold, altitude sickness, and the very real fear that climbs like this demand. The camaraderie, the shared mission, and the laughter along the way will be what keeps us moving when our legs – and lungs – beg us to stop.

But this climb isn’t just personal. It’s also deeply purposeful. I’m raising money for Ocular Melanoma UK and the Victoria Cohen Eye Cancer Charitable Trust, two charities that do vital work supporting patients and aspiring ocular oncologists in areas of world that don’t have them. Every step I take up that mountain will also be a step towards better awareness, support, and hope for others affected by this rarity. The fundraising gives me an added sense of responsibility.

Fear still sneaks in. Will my body cope? Will I get altitude sickness? Will I make it to the summit? Doubt hovers, but that’s to be expected when you push yourself beyond your comfort zone.

"Every step I take will also be a step towards better awareness, support, and hope for others affected by this."

Purposeful fear

There’s something a little different about fear when it’s paired with purpose. Each time I look at the mountain looming ahead of me in pictures – like you see in these specs here – I remind myself: this climb is bigger than my fear. It’s about proving that life doesn’t end when circumstances change. It’s about showing resilience, grit, and the power of mindset. And it’s about hope – hope for me, hope for those with monocular vision, hope for the people who will benefit from the charities we are supporting.

Kilimanjaro will test me and my group physically, mentally, and emotionally. There will be moments of doubt, moments where I think I can’t go on. But I also know there will be moments of triumph, moments of pure awe, and moments of connection with my friends – and myself – that are irreplaceable.

If you’d like to support this climb and the incredible work of Ocular Melanoma UK and the Victoria Cohen Eye Cancer Charitable Trust, you can donate here. And we’d be very grateful.

For now, I will keep putting my boots on, keep getting on that stair master, and keep visualising the summit, hoping I make it to the top of Africa. And return tired, proud, and possibly a little changed.

This is a question I am asked a lot. So, I thought it worth writing about. The quick answer is – it doesn’t work at all. But here I divulge what I’ve experienced when I lost an eye to rare eye cancer – and eyesight on one side – and gained a prosthetic one.

I went on a steep learning curve when I found out I had ocular melanoma and had to have my left eye whipped out in its entirety just two weeks’ later. Think Everest-like incline. I didn’t have much time to prep; I certainly learnt on the job, at meteoric speed. A little too quick for my liking. But no choice. Life and death stuff.

No choice. Life and death stuff.

I’d never met anyone with eye cancer before. Anyone with an eye prosthetic. Anyone with monocular vision. I simply had no reference point.

Many friends were swift to verbally rescue me.

“My mum’s sister knows someone who she sees at the supermarket who has a fake eye. And you never could tell!”

“Technology is amazing these days. It’s incredible what they can do with prosthetics.”

Neither statement turned out to be true. But that, in a moment.

The eye must come out. Soon.

Enucleation is the type of surgery I had. Such a macabre word. And a bit Chernobyl-esque. My eye was removed – but my eyelids and lashes remain. And an implant was placed in the socket, with my eye muscles attached to it, so a prosthetic can move. A bit. Not as much as I’d yearned for and still do.

When I awoke from the surgery, I had flashing lights on my left – an urgent signal of mourning, a sign of loss. I’ve written about it here in The Times. And when the anaesthetic wore off, a flinching, tugging pain persisted – as the muscles got used to their new roommate: a small acrylic ball.

I had flashing lights on my left – an urgent signal of mourning, a sign of loss.

Sevens weeks of no eye at all. An eery see-through conformer lens kept my eye socket in place. That was a bleak time indeed. Very big, very sunglasses became my new BFF. Inseparable, from dawn to dusk.

Have you ever heard of an ocularist? No, me neither…

I was then invited into the weird and wonderful – and I can say weird as this is now my life – world of ocular prosthetics. An old fashion dentist chair awaits. And the kindest man; thank God. An ‘ocularist’. Who knew such a word existed?

He opened a draw full of prosthetics. The ‘blue’ drawer. 10 acrylic (yes, more acrylic; I’m quite synthetic these days) eyes stared up at me and at all corners of the room. Rattling around. A ‘WTF has happened to my actual life?’ moment. He picked a few up, compared them to my real eye, and sighed. ‘I’m sorry, we don’t quite have your blue. But this is the closest match.’ A bit of carpentry-like re-sizing later, and he popped the prosthesis in my eye for the first time.

10 acrylic eyes stared up at me and at all corners of the room. A ‘WTF has happened to my actual life?’ moment.

I wasn’t prepared, as I looked in the mirror. The blue was icy and bright; my blue is puddle grey. The iris felt huge and goggly. Like the Halloween stick on ones for biscuits. Cirque du Soleil might welcome me with open arms. But I couldn’t accept myself; it was simply too different. And different isn’t freaky. But I did feel like a freak. My loved ones had dubbed this moment ‘Liberation Day’ – and yet, I felt locked in a world I didn’t belong. And although just cosmetic, it was seriously dampening my normal cheery demeanour.

Sunglasses back on

Seven weeks later – healing all the way – I was ready for my new eye. That’s entirely untrue. I would never be ready. But it was awaiting me.

Was it the product of whizzy 21^st century technology? Unfortunately, not. Artisan in nature, prosthetic eye making, I’m told, hasn’t really changed in half a century. Oh joy! More sucker punch news.

Prosthetic eye making, I’m told, hasn’t really changed in half a century. Oh joy!

You see, pardon the pun, a fake eye is an acrylic shell. Not glass. A little like a giant contact lens. Complete with mini red blood vessels, my ocularist hand painted my iris and pupil on. In this respect, it was a work of art. If it wasn’t intended to replace a living part of my body, and I could admire it objectively, I would say it’s extraordinary. So life-like. He captured so much of the nuance of my iris colour, the flickers of yellow.

But it wasn’t living. And it could only move slightly; maximum 50 per cent.

Changing faces – and behaviours

Gawping in the mirror at weird angles, I knew straight away this was going to get some getting used to. About a year, in fact, of not being shocked and sad when I looked at my reflection.

Communications is the line of work I am in. And I’ve had to learn to communicate completely differently. I lock people’s stare front on. I no longer gesticulate, which would result in me flinging my head – and eyes – akimbo. That would reveal the lack of movement in an instance. I am still, measured and calculated. Which is at total odds with my normal M.O.

I no longer gesticulate, which would result in me flinging my head – and eyes – akimbo.

Does this all boil down to vanity? Perhaps so. As a broadcast journalist, on the telly, you could say I’ve always worked in an aesthetic- oriented industry. But my fake eye is also a permanent reminder of the sinister turn my life suddenly took. And the scary future I face – now one-eyed and blind on the left.

Seeing life differently

To answer the question someone asked me: “Can you see through it?” That’s a definite no. And you can read here about what life with monocular vision is like. But I do read with great interest, news reports about improving the eyesight of visually impaired people. It won’t benefit me. But it means the future might ‘look’ different – perhaps someday, some sight can be saved, while a life is also saved.

For me, having my eye enucleated means I am alive today. And there would be a very big question mark over that, had I not noticed my eyesight go slightly wonky. So me, myself and m-eye fake eye must push on – with gratitude and a big dollop of resilience.

When a rare illness barges into your life, it has a habit of moving the furniture without asking. In my case, it felt like I’d moved house. I’ve spent years working in communications and as a broadcast journalist, handling crises, unpicking complex stories, making sense of the noise. Yet nothing in my professional career suitcase prepared me for the moment I first heard two strange, alien words: ocular melanoma.

I had never heard of it. Not once. And in the space of a fortnight, between diagnosis and surgery, I found myself on an accelerated crash-course in a disease so niche, so particular, that even seasoned medical professionals often speak of it with caution. There was the cancer itself, certainly, but also the world it ushered in: prosthetic eyes, monocular vision, blurred data and a sense of isolation that was new an unwelcome.

Recently, I joined former journalist Mike Kinnaird on his podcast “Cancer Can Do One!”, which explores how we talk about cancer and how we support those living through it. Our conversation was frank and surprisingly cathartic. In telling my story, I realised how much of it speaks to the wider experience of we rare disease-bies, navigating systems never quite designed with us in mind.

Shock, awe – and a strange silence

You might imagine that someone who has spent a career in communications would instinctively reach for words when the worst happens. I didn’t. My first instinct was to go inward. Survive the day. Manage the logistics. Preserve what little emotional energy remained. My close friends gently teased me that I’d slipped into “crisis comms mode”, briefing them as if they were attending a media training session: “This is what you say. This is what you don’t say. This is how I’ll probably react.” They found it helpful, they told me, though slightly terrifying.

It took more than a year before I was ready to speak to the public, and when I eventually wrote about my experience in The Times, I thought I was prepared for the response. I wasn’t. The impact was overwhelming, at times almost disorientating. But there was also extraordinary comfort in it. People with ocular melanoma reached out, relieved that someone had articulated their story. People without it reached out too, especially men who admitted that they had never quite managed to express their own emotional responses to cancer.

Misguided misinformation

One of the first surprises was how little reliable information exists online. My ocular oncologist warned me early on that the data around ocular melanoma is inconsistent or incomplete; skewed. It is simply too rare. When I did venture into the digital wilderness, I discovered very quickly how terrifying and misleading it could be. So, I stepped back. I chose instead to rely on my consultants, including the brilliant Professor Mandeep Sagoo at Moorfields, who would, with refreshing honesty, sometimes say, “We just don’t know.”

This is the reality of rare cancers: fewer clinical trials, less funding, less commercial incentive for pharmaceutical companies. It is a numbers game, and on paper, the numbers don’t work. By contrast, skin melanoma has benefited from extraordinary breakthroughs in immunotherapy. But those developments don’t translate neatly to the eye. For us, options remain limited. Even promising treatments, such as chemo-saturation therapy for liver metastases, remain caught in limbo when it comes to NHS access. It is progress, yes, but slow, incremental and uneven.

Accidental support

One of the most astonishing chapters of my story is that I found another ocular melanoma patient living less than a mile away from me in southwest London. So unique is our story that we’ve been written about in The Times and invited on the BBC Woman’s Hour to tell our story.

Jo and I share not only the same cancer, but the same eye removed, the same surgical team, the same prosthetic specialist and, in a delightful piece of cosmic symmetry, two two-eyed cats each. And partners called Mark. She went through it a year after I did, and a mutual friend put us in touch. Our parallel lives still amaze our consultants. The only difference is the side of eye we had out.

Yet this coincidence points to something missing. Unlike those with more common cancers, I wasn’t ushered towards a ready-made support network. Of course, I could have sought one out, but the truth is that you often don’t know what you need until you feel its absence. The care I received was excellent, but emotionally and psychologically, there is a strange solitude to rare cancers. You are discharged back into your life, told to return for surveillance scans every six months, and left with the uneasy knowledge that if your disease returns, the next steps may involve clinical trials or treatments on the edge of established science. It leaves you vulnerable, suspended in a kind of medical grey zone.

Facing the physical reality

People often ask about the physical side, though they rarely phrase it directly. So let me. How would you feel if you were given two weeks’ notice that your eye would be removed? It feels medieval, even when you know it’s lifesaving. At one point, during the chaos of COVID, sedation was suggested instead of a general anaesthetic. I refused. Obviously.

We live in a society intensely focused on appearance, and I’d spent years on television as a journalist. Losing an eye is not something you glide through gracefully. The shock of waking up bandaged, bruised, swollen, and knowing that you’ll soon have to meet your own reflection is indescribable. I approached it slowly, glancing for a second a day, then two, then three. A quiet, private challenge.

When I received my interim prosthetic, friends excitedly called it “Liberation Day”. But the reality was harsh. It didn’t match my other eye; the iris was larger and a bright, unfamiliar blue. I felt like a circus act. Seven weeks of that. Being stared at, feeling conspicuous, adjusting again and again. The bespoke prosthetic was different. Remarkably close to my real eye, it finally allowed me to move through the world with something approaching normality. Though, even now, I sometimes feel as though it stands out more than it does.

Are you newly diagnosed?

When people ask what I’d say to someone diagnosed today, I offer a few truths. Firstly, you will be more will be okay than you can possibly believe at the start. Secondly, communities do exist. They may be smaller, less visible and harder to find, but they are there when you’re ready.

And finally, a warning. Information is not always illumination. In the age of algorithms, much of what appears online is skewed, recycled or stripped of context. Hold it lightly. Trust your medical team. Protect your emotional bandwidth.

A line from Salman Rushdie’s Knife stays with me: “We would not be who we are today without the calamities of yesterday.” I’ve come to see something quietly empowering in that. Those of us with rare cancers occupy a peculiar space. But there is strength in it too. We are, in our own way, distinctive. Unique. Special.

It took me days to look in the mirror after having an eye entirely removed. Could you imagine? How would you feel?

I went into hospital with two eyes. Just 29 hours later, I emerge with just one – now blind on my left and flashing limb syndrome in full drive, sounding the alarm to the disappearance of this critical part of my anatomy.

To begin with, after the bandages were removed, I looked like I’d had a run in with Floyd Mayweather. Bruised, swollen and shut; perhaps nature’s way of delaying seeing something rather unfathomable until I’d gained some strength.

Protecting my children – and vanity

In the weeks after surgery, I mostly avoided mirrors and I wore giant dark, dark sunglasses – even in the dingy basement of my home – to protect my children, and perhaps, my vanity.

Or maybe myself the murmuring fear of confronting a face that was mine, yet not quite. The world continued its noisy spin: clients to advise, children to feed, emails to answer. But I felt like I was having an out of body experience – as though I were moving through someone else’s life.

Finally mustering the courage, I briefly glanced in the mirror – each time trying to add on a few seconds to allow my brain to adapt, somehow. I saw loss. I also saw a version of myself I hadn’t yet met; altered, but alive. That moment marked the beginning of something new: recovery and recognition.

Second self

At first, this sort of ‘second self’ felt fragile, uncertain, but I could mask her behind the Chanel shades. Once I had my prosthetic made and ‘installed’, I had to confront friends, colleagues, strangers. Their eyes reflected unsaid emotions I had never had to navigate before. Some looked at me with pity, others with surprise, and a few – unintentionally – with discomfort. A couple of people couldn’t even look at me. That was hard. To feel like a freak was quite diminishing. Gruelling. Sad.

Each reaction, however subtle, forced me to confront a question I had never asked myself: who am I now?

It wasn’t dramatic or sudden; there was no lightning bolt of realisation. Instead, it was in the quiet hours, in small domestic moments, that the conversation with me, myself and I began. Brushing my hair in the morning, I would pause mid-motion and see the subtle shifts in my features. The angle of my gaze, the way shadows fell across my face, the tiny compensations my body had made; they all whispered change. An unwelcome transformation, but one that I couldn’t run away from.

A sort of self-flagellation

Some mornings, I could stomach the new me. But on other days, I recoiled slightly, surprised by a reflection that was familiar, and yet foreign. Worst of all, I’d try out different angles that would never be favourable or kind. A sort of self-flagellation, for some unknown reason.

This would be an opportune moment to describe the prosthetic – its mechanics, materials, strengths and weaknesses. Prosthetic eyes are made by an ocularist. It’s an artisan trade that hasn’t changed in half a century. They are acrylic – and eyes are painted on a white shell, like a thick giant contact lens (complete with some natural looking pink veins) – based on some photos taken. That’s it.

Luckily my ocularist is a deft painter. But it was a far cry that the ‘amazing technology’ I was promised by kind friends just waiting to make me feel better while I waited for my socket to heal. Significantly, they can only move about 50% MAX – because they sit on an orbit that’s been attached to the eye’s muscles. But the lack of movement is very challenging; this, for me, was the hardest to acclimatise to.

Curiosity over judgement

Back to the mirror, and I tried to approach these moments with curiosity rather than judgement. Not an easy task, and not something I’ve mastered, even now.

Slowly, I started to notice the resilience of my new self, the calmness in the way I now held my head, the deliberate care in my movements. I had to re-learn body language and gesticulations. I now fix my gaze on someone’s eyes, while they might be flinging theirs around as they tell stories or just go about their normal life.

My small victories were often imperceptible to others, yet transformative to me. The first time I laughed without checking my reflection. The moment I realised I could go on a Zoom without rehearsing expressions or walk into the coffee shop without compensating for perceived difference.

Patience and perspective

It’s been a cruel but rather clever lesson in patience and perspective. Recovery for me, has never been solely about healing my body. It has been about learning to see, to meet, and to accept – first the reflection in the mirror, and then the reflection in the world. It has been about understanding that identity is layered, nuanced and capable of evolution. My second self doesn’t eradicate the old me. They bumble along in tandem. Together, on this wild, unwanted ride – that’s far from over.

***

Do reach out…

Any questions about living with ocular melanoma, please do ping me an email. And follow my story on Instagram: @seeing_life_clearly.

Rare cancers are, by definition, unusual. But living with one feels completely universal – the fear, the uncertainty, the fight to reclaim your life. My journey with ocular melanoma has been a lesson in loss, resilience – and the power of telling my own story to help others and raise awareness.

A diagnosis I’d never ever heard of

I’ll never forget the moment I was told I had ocular melanoma. It was a grey humdrum day, and I remember staring at the consultant as the words landed, not really understanding. A rare cancer. In the eye. I’d never even heard of it before. Cancer, yes – we all know someone, I my case my mum and best friend – but in the eye? It felt surreal. Scary. And certainly shocking.

When the dust settled a little, the word ‘rare’ made the volatile situation feel even more uncertain. We often use rare in our lexicon for things that are positive: rare diamonds, rare sightings, rare talent.

But I knew straight away that ‘rare’ in the context of cancer means fewer answers, less research, and not many people who’ve trodden this path before. It’s as if the ground falls away beneath you and you’re left without a map.

What ‘rare’ really means

Having a rare cancer means you carry two battles at once. The first is with the disease itself, the second is with the uncertainty. With common cancers, there are established treatments, endless resources, support groups bursting with people who understand. With ocular melanoma, there are fewer trials. Less data. More questions than answers. Telling friends and family is akin to being a schoolteacher – educating on new subjects. And yet, I’d only just learnt the topic myself.

And then there’s the isolation. You don’t bump into someone in the waiting room who says, “Oh yes, me too.” You can feel like the only one. I found myself scouring the internet late at night, searching for stories, blogs, anything to prove I wasn’t alone. Until I met my (now) one-eyed comrade, Jo – you can read about our parallel rare eye cancer stories here in The Times.

Facing enucleation

Nothing prepared me for the word enucleation. I had to Google it – surgical removal of the eye. When the doctors explained why it was necessary, they were calm, professional, careful. I listened, nodding, but inside I was reeling. How do you begin to process losing an eye? All with two weeks’ notice?

The day of the operation, I felt as though part of me was being erased. Waking up afterwards was brutal. I touched the dressing, I looked in the mirror, and I felt the absence where there had once been presence. It was grief, pure and simple. The loss of an eye isn’t just physical – it shakes your identity; it challenges your sense of self.

But strangely, in that same moment, something else stirred: determination. I realised that if this rare cancer was going to strip me of something, I had to find something else to hold onto.

Turning to storytelling

I’ve always worked with words. As a journalist and communicator, language has been my craft, my way of understanding the world. After the diagnosis, writing became my therapy. At first, it was just scribbles in a notebook, emails to family, private words to make sense of the chaos. Then slowly, I began to share more publicly. And always, candidly. Starting with ‘going global’ with this piece I wrote for The Times.

Storytelling gave me power back. When so much felt uncertain, I could at least take ownership of my narrative. I could write honestly about fear, about loss, about resilience. And in doing so, I began to connect with others. People reached out – some with the same diagnosis, some with different rare cancers, all wanting to say: “I understand. You’re not alone.”

That’s when I realised my story wasn’t just about me. It was about visibility. Rare cancers need voices. We can’t stay hidden in statistics and medical journals. We need to be heard.

The hidden weight

What most people don’t see is the long shadow rare cancer casts. The surgery heals, the socket recovers, but the emotional impact lingers. Every scan appointment carries dread. Every twinge makes you wonder: is it spreading?

And then there’s the everyday challenge of how people respond. Some avoid the subject, uncomfortable. Others offer platitudes. Very few ask, “How are you, really?” I’ve learnt to carry both bravery and vulnerability. Some days I feel strong, other days the sadness comes back sharply. Unfortunately, my diagnosis never quite leaves the room.

Why rare cancers matter

If I’ve become outspoken, it’s because I’ve seen the gaps up close. Rare cancers often fall through the cracks. Great work is being done by the likes of Ocular Melanoma UK and in the US, A Cure in Sight – you can listen to my ‘Eye Believe’ podcast here. But research funding is harder to secure. Clinical trials are fewer. Patients end up advocating for themselves, campaigning for awareness, seeking out the specialists hidden around the country.

But our lives are no less valuable for being rare. We deserve the same attention, the same urgency, the same compassion. Raising awareness isn’t just about me – it’s about every person who gets that lifechanging diagnosis and wonders, “What now?”

Reclaiming my story

Yes, I’ve lost an eye. Yes, I live with a rare cancer. But I refuse to let that be the end of the story. What cancer took physically, storytelling gave back emotionally. Sharing my journey has connected me to others and, I hope, offered them some of the reassurance I craved at the start: that you are not alone, even when your cancer is rare.

***

Do reach out…

Any questions about monocular vision or living with ocular melanoma, please do ping me an email. And do follow my story on Instagram: seeing_life_clearly.

My alarm went off at 4am, but I didn’t sleep a wink anyway. It was perhaps the most nerve-racking night of my life, awaiting eye ‘enucleation’ – a grim, almost militaristic word for having one’s eyeball entirely removed. This was to be my fate that morning at Moorfields specialist eye hospital in London, after a diagnosis of ocular melanoma (rare eye cancer) just 15 days before.

As my husband drove me through the dank, dark March streets, weaving our way across London while most people were still sleeping, an advert came on the radio. It was a cancer charity asking people to leave money in their will. Or something like that. Details escape me now, but the message was loud and clear in my mind then. You have cancer and your life is in jeopardy.

‘Enucleation’

My surgeon came to see me, and drew a big, black arrow on my forehead pointing at the correct eye to remove. I am grateful there is no room for error. My left one has a tumour the size of a pea hidden in the back of it. Soon, it will all have been surgically taken out – along with the vision on that side.

Here’s the medical bit. Enucleation is the complete removal of the eyeball (the globe), while preserving the surrounding structures – the eyelids, eyelashes, eye muscles, and the bony orbit remain untouched. It feels medieval and macabre, but left in, survival would be out of the equation.

In place of the removed eye, a sphericalacrylic implant is placed deep in the orbit. This maintains the natural shape of the eye socket and allows the eye muscles to be reattached. Over time, this implant integrates with the surrounding tissue, helping to restore natural movement.

Waking up with just one eye

Fast-forward 24 hours and I had my bandages removed by a nurse. Looking like I’d done a few rounds in the ring with Muhammed Ali, I was sent on my merry way. Except merry was the antithesis of my emotions that day. My eye muscles – having been reattached to the acrylic implant I mentioned above – were tugging deep within my head, and also, at my soul. I did feel grief for my eye, immediately. And for the sight out of my left eye which was now just a black cavernous blind spot.

Why is sight so important?

I’ve contemplated this a lot since my diagnosis and surgery. Sight is the primary way we interpret, navigate and connect with the world around us. It’s not just a practical tool; it’s deeply psychological, social and emotional. Yes, it’s our brain’s primary data feed – the majority of the information we process about our environment is visual. Distances, movement, colour, shape, and light; spatial awareness and swift decision making.

But eyes, as they say, are also windows to our souls. Much of human connection is visual – such as the nuance of expression, the flicker of recognition and unspoken empathy. In short, sight is not simply seeing; it is understanding.

Monocular recovery – and living

And this is what worried me most as I returned home, just 30 hours after my operation – minus an eye and embarking on life with monocular vision. I knew I would do my best to overcome practical hurdles. But would a piece of me be lost? Would my ability to connect emotionally be half what it was? This may sound bananas to you if you have full vision, but anxiety was running high – and it felt like a huge leap into the unknown.

The mountainous task of making tea

The greatest challenge I remember was making a mug of tea – simply boiling a kettle and pouring hot water into a cup. In the immediate aftermath of my surgery, depth of field was dodgy; distances hard to gauge. Our brains are wired to function binocularly. And so, this transition takes time. Reaching for things also proved challenging. The pen simply wasn’t where it seemed to be. Letters on the keyboard are also out of place. As a writer, that was particularly worrying to me.

And then there’s the obvious total loss of some peripheral vision. Apparently, I have 20-30% less on my left side now. What’s wonderful is that my friends know to walk on my right. They often move themselves when the penny drops – anxious, perhaps, that I may tread on them! Which, to begin with, I did. My first visit to Waterloo was a thing of madness – constantly bumping into people. And still, when I cross the road, I have to turn the whole top half of my body and head to make sure I don’t get run over.

But, talking of cars, I am driving again; I was behind the wheel again just a few months after surgery. I had specific vision field tests at the opticians. Apparently, I have a higher score than many people on the road. And I overcompensate to make sure no-one is in my blind spot. Perhaps it’s made me more careful – as my husband says, my driving has improved since surgery.

Seeing things clearly

On this World Sight Day – 2026 – I feel deeply sorry for those who can’t see. And I am deeply grateful I still can. It’s forced me to contemplate what life would be like without vision. As I grow older, the reality that I face is that I only have my myopic ‘good’ eye to rely on.

My message to anyone reading this is: value your eyes above all else. To see opticians for eye checks frequently, to question if anything seems different or unusual – immediately. To not leave a niggle because it’s inconvenient, or because you’re worried. And to always seek a second opinion if something doesn’t sound quite right.

***

Do reach out…

Any questions about monocular vision or living with ocular melanoma, please do ping me an email. And do follow my story on Instagram: seeing_life_clearly.

Here I talk about my unexpected feelings two and a half years after I was diagnosed with ocular melanoma, forcing me to have my left eye removed, suddenly. Namely, the unanticipated adrenalin void left behind that’s hard to fill. 

A cancer diagnosis is horrifying. That’s not breaking news. But how it’s inextricably changed my emotions and feelings is entirely unexpected and quite mixed up.

Cancer forces you to exist on heightened sensations. Augmented anxiety speckled with inordinate amounts of love. Frenzied fear and a cascade of ‘what ifs?’. So much noise, while time seemingly stands still. 

Messages, flowers, food, hugs, reluctance, gratitude, panic, terror, kindness.

Living on the edge

For a while, you live on the edge of what’s mentally – and physically – manageable. Everything at full throttle. The bad, and there’s a lot of bad. But also, the good. The urgency feels energising. The sense that you’re fighting for your life gives you a sense of purpose. You are, essentially, on a mission to survive. And there’s nothing that carries greater gravitas than that.

You are on a mission to survive. And there’s nothing that carries greater gravitas than that.

When the dust settles – perhaps after surgery or treatment – something strange and unexpected happens. Well, it did to me, anyway. And this, I’d never heard of or anticipated, after months longing for the humdrum of normal life.

What’s left is a sense of flatness; difficulty finding joy.  Is it sadness? Or depression? It could be. That would certainly make sense. Grief for my carefree life pre-ocular melanoma diagnosis? Perhaps. I do yearn for those days. But I think it’s more than this. And that’s let me to another theory altogether.

Feeling truly seen

I am no psychologist, but I’ve thought about this a lot. I wouldn’t wish my cancer diagnosis and surgery on anyone. But it did push me to feel in a way I hadn’t before- with profundity, clarity and discernment. The love that envelopes you from all angles is also quite addictive. You feel truly seen. And you know who has your back. And who you’d do anything for, if push came to shove. 

Then there’s the adrenalin of life-or-death medical scans and appointments. 

“You have a large tumour in your eye. We have to remove in as soon as possible. As in, the eye. It may have spread to your liver. Or may do in the future. It’s a very aggressive type of cancer. How many children have you got?”

Conversations like this – so dark and deep – make it hard to go back to small talk or shallow relationships. And this concept or rather, seismic shift, I’d never heard of or anticipated, after months longing for the humdrum of normal life, before that fateful jog.

I went from out running one grey day, to weird vision, to rare eye cancer diagnosis (ocular melanoma) …to having my left eye removed within just three weeks. (I’ve written for The Times about this aspect of my story). I then had to find out whether the cancer had spread. Hideous scans, appointments, discussions. All terrifying and of grave importance; ultimately to discover whether I was going to see my daughters grow up. Or whether I was going to die early – and perhaps, quite swiftly.

Ultimately to discover whether I was going to see my daughters grow up. Or whether I was going to die early – and perhaps, quite swiftly.

All the while, in the early shock and awe phase, I was staggering round our neighbourhood river towpaths with just one eye, while I tried to heal physically enough to be able to have a prosthetic. Those walks, however, were also my mental lifeline. Pounding the pavements to stamp out the noise. Chatting to friends to keep the horror and dread from bubbling away in my brain.

Flatness pervades

Two and a half years on, a sort of flatness pervades. I don’t think it’s depression. It’s a dull state of post-cancer monocular monotony. After living in a constant start of alert – fuelled by adrenaline, cortisol and compassion – I feel disorientated and a little bored, if I’m honest. This, despite training for Mount Kilimanjaro, running a business and writing a book. 

After living in a constant start of alert – fuelled by adrenaline, cortisol and compassion – I feel disorientated and a little bored, if I’m honest.

Don’t get me wrong. I don’t want to relive the horrors of yesterday. And for those reading who have a cancer diagnosis, we can’t live freely; we’re never really off the hook. That’s the stuff of nightmares. But maybe some of this resonates? For now, I am learning to navigate this weird vacuum I find myself in – constantly grateful I am alive and kicking. But also, constantly contemplating how bloody complicated cancer is, beyond the disease itself.

Do follow me on Instagram: @seeing_life_clearly.

Welcome to my ‘views’ (pardon the pun). Here I will house my musings on all things eye related. 

As any good communicator knows, it’s best to go back to basics. Namely, who am I and why should people care?

I am a former journalist turned comms specialist – CEO of my own business, The Power of Words.

An odd and unusual sensation

Until March 2023, life was ticking along fairly normally. Whatever normal is, as a busy business owner and mum of two girls. Until, that is, I was out running one grey day along the river towpath in pretty suburban south-west London where I live, when I noticed my eyes weren’t working together. Sounds like a strange thing to say. And the sensation was certainly odd and unusual.

Off I trotted to the local optician, where I often go as a shortsighted ‘myop’ (made up word), assuming they’d suggest a contact lens prescription tweak. I sat in the chair, with my coat still on, blissfully unaware that my life was about to take a serious nosedive. A colleague is called for a second opinion. “Yes, there’s something there.” My heart starts racing. What could possibly be there inside my eye?

What, cancer?

“You have a choroidal freckle or a melanoma in your left eye.”

“Cancer?” I blurted out.

“We are sorry these aren’t the words you wanted to hear.”

My smart watch starts to flash stress alerts. My heartbeat, clearly struggling to cope with the enormity and gravitas of the sudden turn of events.

I realised that I’d never felt true terror before. Sadness, yes. Grief, certainly. But not sheer horror that feels like it’s in your bones, rattling you at your very core. 

I was ushered to a suburban eye hospital, told it was a tumour of some sort, warned it could be leaking from my brain. Something I later discovered simply wasn’t possible. And then shipped off to an ocular oncologist, and a lexical journey of discovery – learning words like enucleation, ocularist and the like, for the first time. Words you’d rather never hear. 

How many children have you got?

“You do have ocular melanoma, and the only option is to remove your entire left eye. We have no time to waste. It may have spread to your liver. You’ll need full body CT scans to find out. How many children have you got? See you in two weeks for enucleation surgery.”

This is a brief synopsis of my diagnosis from my ocular oncologist – and extraordinarily gifted man, who’s ultimately saved my life. Even if just for now.

If you haven’t guessed it, enucleation = eye removal. Not your average everyday chat or verbiage.

I will save writing about my ‘shock and awe’ surgery for another time; it warrants its own place. Suffice to say for now, those 14 days were filled with horror, heartbreak – but also heartfelt gratitude. For discovering the cancer, not early, but before it was too late. For my friends and family, whose love I could feel palpably and who carried me through the fear and foreboding; in a heartbeat I discovered who my ‘ride or dies’ were.  For my girls and my husband, who helped me keep a sense of humour in the dark hours. And who never treated me differently – even when I returned home from my operation with just one eye (and a glamorous pair of very dark, very big sunglasses).

Trauma clarity

It’s simply that I now see life clearly, despite my -8 one eyed shortsighted and less than great vision. There’s huge clarity in trauma; it hones the senses and reveals what matters most. It’s a shame that it’s taken the loss of my left eye and a cancer diagnosis to have this sharpened vision. 

I will be writing about all these emotions, but also, what it’s like having an eye removed and living with a prosthetic. What monocular vision entails. About ocular melanoma – and why rare cancers aren’t given enough priority. Cancer stigma and stereotypes. And so much more.

In the meantime, please do follow me on Instagram. I’d love to hear from:

@seeing_life_clearly.