Woman had to have her eye removed when she developed ocular melanoma

Woman, 25, who lost her eye to cancer and was diagnosed with five tumours in her brain after having a seizure shares pictures of how she matches her elaborate eye patches to her outfits

  • Jess Van Zeil was diagnosed with ocular melanoma in January 2015 
  • Surgeons removed her eye and eyelid, and closed off the socket
  • Seizure led to doctors discovering at least five cancerous tumours
  • Endured brain surgery and £66,000 immunotherapy, is now cancer free 

A 25-year-old woman who lost her eye to cancer takes her new look in her stride by matching her elaborate eye patches to her outfits.

Jess Van Zeil, from Melbourne, was forced to have her left eye removed when she was diagnosed with an aggressive eye cancer called ocular melanoma in 2015.  

Doctors said her only hope of survival was to go under the knife, and surgeons removed her eye and eyelid, and closed off the socket. 

In another cruel turn of events, Ms Van Zeil was diagnosed with five cancerous tumours on her brain after going to the hospital when she had a seizure at home.

After battling for her life once again, enduring grueling brain surgery and £66,000 of immunotherapy treatment, Ms Van Zeil is now disease free.

Jess Van Zeil, from Melbourne, lost her eye to ocular malcancer but takes her new look in her stride by matching her elaborate eye patches to her outfits. 

Ms Van Zeil’s life changed when she was diagnosed with eye cancer in 2015 when she noticed a red spot on the white of her eye. Pictured, before her diagnosis.

Ms Van Zeil’s only option was to go under the knife, doctors said. Surgeons removed her eye and eyelid, and closed off the socket 

Ms Van Zeil, pictured in hospital before her surgery, had a seizure at home a year after her eye removal.  Doctors later discovering at least five cancerous tumours on her brain

She crowdfunded to pay for her treatment, and has now successfully campaigned to get it added to the ‘government funded’ list in Australia.

Ms Van Zeil said: ‘The thought of seeing myself without an eye for the first time was quite daunting.


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What is conjunctival eye cancer? 

Also known as conjunctival ocular melanoma, this cancer affects the conjunctiva – a thin, clear, moist membrane which coats the inner surfaces of the eyelids and the outer surface of the eye.  

Eye cancer most commonly affects the middle layer of the organ, the choroid.

Conjunctival ocular melanoma comprises about 5 per cent of all ocular melanomas, which is the second most common form of eye cancer.

Conjunctival melanoma cases aren’t very common, however cases are increasing, especially among white men and older than 60 years. 

It almost exclusively occurs in whites people and only less than 1 per cent are African-American patients.  

Around 750 new people in the UK are diagnosed with eye cancer every year. 

Almost 25 per cent of eye cancers in the UK each year are diagnosed in people aged 75 and over. 

It affects approximately 3,500 new people annually in the US.

Common symptoms include:

  • Bulging
  • Complete or partial sight loss
  • Pain
  • A pale, raised lump on the eye surface
  • Blurred vision
  • Change in eye appearance

The main cause is over exposure to UV light, leading to melanoma.

Melanoma develops in cells called melanocytes, which are found in our skin, lips and the lining of organs such as the eye. 

It is more common in people with fair skin, hair and eyes, as well as those with a large number of moles.

Treatment depends on the type and size of the cancer, as well as whether it has spread.

It may involve radio or chemotherapy and surgery. 

‘The nurse and doctor that removed the bandaging were incredible and made me feel so comfortable. I was shocked at how “normal” I looked. It wasn’t gory – it was clean and in its own way beautiful.

‘I don’t wear a patch at home or around my friends – the main reason now is I actually enjoy my unique little fashion statement and have fun matching the patch to my outfit!’

Ms Van Zeil was diagnosed with conjunctival ocular melanoma in January 2015 after she noticed a red spot on the white of her eye.

She was against getting her eye removed at first, but changed her mind when doctors said: ‘If you don’t have the surgery you won’t be here in five years.’

‘I went home and just sat in my room and stared at the wall and tried to comprehend this situation I was being handed,’ she added.  

‘I had two main stories of how my life could play out just running through my head.

‘One was Jess the 22-year-old freak – the girl who was going to retreat to her bedroom, would never be loved, never be accepted, who needed to hide herself from the world in order to avoid being judged.

‘Or option two, powerfully positive Jess, the confident, fun loving, bubbly young woman who is surrounded by love and support.

‘By the next day I had come to the conclusion that I had to do the surgery because I was being handed a second chance at life and I refused to waste it.’

Ms Van Zeil had the two-hour surgery to remove her eye in October 2015 and got back to her normal life.

But in September 2016 she had a seizure at home after noticing her little toe on her right foot was ‘twitching’.

The spasm moved up her leg and soon she couldn’t breathe and fell unconscious, convulsing for three minutes in front of her worried mother.

Tests revealed the cancer had spread to her brain and a tumour had haemorrhaged.


After enduring grueling brain surgery and £66,000 of immunotherapy treatment, Ms Van Zeil is now disease free and embraces her new look by decorating her eye patch

Ms Van Zeil noticed a red spot on her eye. She was diagnosed with conjunctival ocular melanoma, which affects the thin coating of the inner surfaces of the eyelids and the outer surface of the eye. 

She said: ‘When I was diagnosed with the brain tumour I was in shock.

‘I was meant to be finishing my degree and moving on with my life. I had plans for my future and I was not ready for all of that to get side lined.

‘I went into the operation with a 5 per cent chance of losing all movement on the right side and 10 per cent chance of long term weakness on the right.

‘I spent the first eight hours after surgery just focused on getting the right side of my body moving, even just an inch – because I knew if I could just do that my dream of running again one day was in reach.’

Doctors couldn’t say exactly how many tumours were there – because some were just 1mm in size – but they estimate she had between five and eight other cancerous spots. 

Ms Van Zeil before her brain surgery to remove five tumours. Ms Van Zeil said she was ‘in shock’ to be told the news whilst finishing her university degree 

After the brain surgery, Ms Van Zeil spent three weeks learning to walk again 

A team of 40 doctors recommended dual-immunotherapy treatment – two different drugs at the same time to boost the body’s natural defences to fight cancer.

It wasn’t covered by the government, and Ms Van Zeil and her supporters raised AUD$120,000 (£65,000) to cover her treatment.

After the op, she spent three weeks learning to walk, and then a few months learning to run again.

Now her tumours have not grown any more and Ms Van Zeil is now a resilience expert, author, speaker and coach.

She said: ‘Two years post brain surgery my life is completely different.

‘I own my own business as a resilience expert, speaker and coach, where I empower youth and young adults to become more resilient so that when they are faced with challenges in their school, work or home lives they have the skills and tools available to thrive.

‘I believe that too many people are just surviving through life, and having resilience and a deep confidence in yourself to overcome challenges, is the stepping stone to creating a life full of excitement, fulfilment and joy.’ 

Two years after her brain surgery, Ms Van Zeil says her life is ‘completely different’, and she is now a resilience expert, author, speaker and coach. Pictured, trekking in Papua New Guinea

Her campaign saw the treatment added to the Pharmaceutical Benefit Scheme (PBS) – the Australian Government’s subsidised prescription drugs programme.

Ms Van Zeil finished her degree in nutrition last year and this month completed a 60 mile trek in Papua New Guinea – called the Kokoda Track.

‘My first steps on the track marked exactly two years from when I was taking my first steps in the hospital,’ she said.

‘This is a massive milestone for me and stands as proof to myself that cancer can’t stop me from living my dream life, and that I am capable of achieving anything I set my mind to.’ 

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Rapper tries neuroscience experiment to get over her messy breakup

‘I wanted to remove love from my brain’: Rapper tries neuroscience experiment to rewire her neurons with musical chimes after her decade-long messy breakup

  • Dessa, a Minneapolis rapper, was in a year-long relationship with another member of her rap group over 15 years ago, when she was just 21
  • After the initial breakup, the two kept working together, getting together, and splitting up again  
  • For over a decade, Dessa says she’s begin struggling with ‘heartbreak’ 
  • After seeing a TED Talk by neuroscientist Dr Helen Fisher on what love looks like in the brain, Dessa decided wanted to see her own brain – and change it
  • At 36, an fMRI revealed the love centers of Dessa’s brain still lit up when she saw pictures of her ex  – over 15 years after they broke up 
  • She tried neurofeedback therapy, a way of subconsciously re-training the brain
  • After nine sessions, another fMRI did not show the same love neural activity when Dessa saw pictures of her ex  

Minneapolis rapper Dessa’s career started taking off when she was just 21, thanks to a breakup that that inspired so many of her songs. 

But by the time she was 36, and had spent over a decade alternately dating or collaborating with her ex, Dessa was tired having the breakup on her mind.  

So, following in the footsteps of Kate Winslet in Eternal Sunshine Of The Spotless Mind, Dessa sought to ‘take out’ the part of her brain that was dedicated to loving a person she was no longer with. 

In reality, getting past her last relationships would not involve ‘zapping’ memories’ (as in Eternal Sunshine of the Spotless Mind), nor like lobotomizing herself. 

But you really can see the neural signature of being in love in the brain, and you can reprogram that circuit using, in Dessa’s case, a technique called neurofeedback. 

In her new book, My Own Devices, Dessa describes doing exactly that, and how getting hooked up to electrodes, and watching her own brain respond to light flashes, beeps and whistles helped her retrain her brain to stop fixating on love. 

Dessa, 37, is a Minneapolis rapper who has struggled with heartbreak after her relationships with a fellow rapper ended more than 15 years ago. Finally, seeing what love looked like in her brain and undergoing neurofeedback training has helped her break the spell, she says 


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WHAT DOES LOVE LOOK LIKE IN THE BRAIN? 

We talk about many of our emotions as being ‘of the heart,’ but really the heart is just a muscle pumping blood through our veins.

It’s the brain that manages our experiences and perceptions of emotions. 

Specifically, love makes its home in the temporal lobe, which spans between the two temples and is key to the way we process sensory information. 

One of its components is the limbic system, which is primarily responsible for emotions, most notably love and fear. The system’s pieces include the hippocampus, hypothalamus, and the amygdala, which acts like the brain’s emotional-processing command center. 

In the cult classic film, Eternal Sunshine of the Spotless Mind, Kate Winslet’s character (left) tries to have her ex (played by Jim Carrrey, right) erased from her memory

Dr Helen Fisher, a biological anthropologist at Rutgers University, breaks down the experience of love in the brain into three parts: lust, attraction and attachment. 

Each of these are associated with different hormones, which act like biological text messages from the brain to the body. Lust comes with testosterone (for men) and estrogen (for women), attraction with dopamine, norepinephrine and serotonin (the ‘reward’ hormones) and attachment comes with oxytocin and vasopressin (the ‘feel good,’ warm and fuzzy hormones). 

Dr Fisher was the first person to use functional magnetic resonance imaging (fMRI) to watch the activity of these hormones in the brain, and other research revealed which brain regions light up when a person thinks of their loved one. 

As it turns out, the attachment phase involves the brain activity of dependence, which looks essentially the same whether you are dependent upon a person or a drug. 

For Dessa, that neural ‘dependence’ lingered for over a decade after the initial breakup, like a drawn out love-withdrawal. 

SEEING RED: BRAIN SCANS REVEAL ‘LOVE’ STILL LINGERING IN A RAPPER’S BRAIN 

Dessa fell in love with the man she calls ‘X’ more than a decade ago, when she was just under 21. 

They were working together in the same rap group, and have continued to do so on and off since their initial breakup, about a year after they started dating. 

Despite their best intentions to transition to collaborators, their relationship has followed the typical on-again-off-again trajectory, and it was becoming a problem in Dessa’s personal life, and in the efforts she and X made to work together. 

An fMRI revealed that love really was on Dessa’s brain when she say pictures of her ex 

‘I had exhausted the more traditional interventions for heart-brokenness – distance, booze, friend, dates – and I was still feeling pretty shook,’ Dessa told Daily Mail Online.  

She saw Dr Fisher’s TED Talk by chance, and it sparked not only some hope, but Dessa’s intellectual curiosity. 

‘It hadn’t occurred to me that their might be biomarkers that correspond to these feelings,’ Dessa said. 

‘I was excited by the idea of being able to capture some definitive evidence of this feeling that had dogged me for so long.’ 

Dessa went in for an FMRIs at the University of Minnesota. When the scientists there showed her pictures of her ex, X, sure enough, all of those love areas lit up. 

‘I thought, “if I can find love in my brain, maybe I can find some intervention that can remove it,”‘ Dessa said.  

‘CUT IT OUT’: HOW A RAPPER SOUGHT TO ‘REMOVE’ LOVE FROM HER BRAIN 

The tool Dessa chose was called neurofeedback therapy.  

Neurofeedback therapy is not new – it’s been around since the 1960s – but it remains experimental and studies of its efficacy yield mixed results.  

It has shown the most promise in treating ADHD and, more recently, PTSD. 

Each session of neurofeedback therapy is meant to subconsciously train the brain by rewarding ‘healthy’ neural activity. 

Dessa undertook this process with Penijean Gracefire, a ‘neural frequency analyst’ who specializes in helping people learn ‘resiliency in romantic relationships.’ 

‘It’s not like math where you memorize facts and manipulate concepts,’ Dessa said, explaining her experience. 

‘Instead a person sits ther connected by a series of a electrodes which are connected to a real-time visualization of the workings of your brain. 

‘So it’s measuring my brainwaves through my bone and hair and skin and I can see, in real time, which parts of my brain are hyperactive and hypoactive or operating in a relatively normal way for a 36.5-year-old, right-handed female patient.’ 

When Dessa and Penijean saw the ‘healthy’ activity, displayed in green on the flat screen, the software Penijean had programmed played a chime, a cue to draw Dessa’s attention to the fact that whatever was going on in the romantic centers of her brain at that moment was good. 

This is basically a form of classical conditioning, as pioneered by Ivan Pavlov in experiments with dogs in 1902 – but higher tech and more finely tuned to an individual’s brain activity.

‘When Pavlov’s dogs salivated, they didn’t do so because they were trained cognitively, it was just pairing the stimuli,’ explains Dessa, who has a deep curiousity for science, but no formal education in it. 

‘That kind of unconscious learning is the same idea that underlies neurofeedback: if attention is called to the moment in which the brain is operating in a desirable way, it helps the brain get trained to do that,’ Dessa said. 

Penijean Gracefire (center) places electrodes that monitor brain activity (right) on Dessa’s (left) head during a 2017 performance with the Minnesota Orchestra, just as she did during neurofeedback treatments 

LIFE AFTER LOVE: HOW TONES AND ELECTRODES CHANGED DESSA’S BRAIN   

Dessa went to nine sessions with Penijean in 2017. 

Gradually, her brain started meeting its ‘range of normal operating goals.’ 

So Penijean would recalibrate the software, so that Dessa was only getting the reward chime when her brain activity was operating even more optimally, signaling she might be more resilient to romantic relationships. 

‘The bar is set a little higher as your brain gets better at the tasks its asked to do,’ she said. 

After those nine sessions, Dessa went back to the University of Minnesota to test her training. 

Again, she underwent Dr Fisher’s fMRI protocol. Again she was shown pictures of her ex-boyfriend. 

But this time, ‘there was a really distinct difference in the way that my brain operated before and after,’ she said. 

Those romantic centers weren’t lighting up like fireworks the way they had before – and for over a decade before that. 

And Dessa felt the difference, too – and, actually, it was nothing like Eternal Sunshine of the Spotless Mind. 

‘It’s not like the memories were gone, or blunted,’ Dessa said, her brain was just better at coping at them.

Dessa feels like her brain-training worked, and on the fMRI looked like it worked, but science nerd that she is, the rapper and author acknowledges that her experience is hardly proof that neurofeedback is a cure for a broken heart.

‘This is not a double-blinded, randomized trial,’ she said. 

‘It’s not an experiment, just a curious person trying to understand.’  

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