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A 30-year-old woman who has been given two years to live after she was diagnosed with terminal cancer has revealed lessons she wants other people to know as she faces death.

Megan McClay, from Wymondham in Norfolk, has ocular melanoma, a type of eye cancer that forms in the cells that produce pigment. It is extremely rare – affecting around five in one million adults.

The Aviva pensioners worker was 26 when she noticed a small flashing light in the corner of her eye, which she initially put down to being a migraine. 

But a year and a half ago, she was told that her cancer had spread to her liver and had become terminal – with doctors giving her two years to live. 

Megan is now being featured in the What Matters Most? exhibition at the Senedd Oriel at the Welsh Parliament in Cardiff, which tells the stories of those with terminal illnesses. 

Megan McClay has been diagnosed with terminal cancer at just 30 years old, and is telling her  story as part of the What Matters Most? exhibition

Megan McClay has been diagnosed with terminal cancer at just 30 years old, and is telling her  story as part of the What Matters Most? exhibition

Megan’s diagnosis, which has left her blind in her left eye after undergoing intensive stereotactic radiotherapy, has meant she has re-evaluated her priorities in life. 

‘I want to be remembered when life becomes a huge rush, and things become too quick, and you’re jumping careers, and you’ve got children running around,’ she said, as part of the exhibition.

‘I want to remind people to stop and pause, put the phone down and take time with the people around you.

‘I feel like we’re always striving for more, a bigger home, a bigger car, a bigger this and a bigger that but we forget to see what we actually have in front of us.’

Megan was 26 when she first noticed a small flashing light in her eye, but assumed it was a migraine

Megan was 26 when she first noticed a small flashing light in her eye, but assumed it was a migraine

She has revealed what she has learned since having her diagnosis - including learning to 'stop and pause' rather than always 'striving for more'

She has revealed what she has learned since having her diagnosis – including learning to ‘stop and pause’ rather than always ‘striving for more’

Another thing Megan has learned is how best to talk about her illness with other people. 

She hopes that by joking about her illness and not avoiding the topic by using ‘fluffy’ language, she will help other people to feel more ‘comfortable’ in talking about it with her. 

Megan herself is comfortable talking about facing the end of her life and has even made plans for her care in a local hospice, but says some of her friends and family are still struggling to come to terms with it.

Megan met her partner Dimitar Kashchiev in 2018 and was diagnosed with the cancer less than a year into the relationship. She has not told her 10-year-old sister. 

And although she says her prognosis of two years is always ‘very loud’ in her mind, she sees the idea of a bucket list as ‘overwhelming’ and wants to spend her time in the way she chooses. 

She said: ‘What matters most to me when facing death is to spend the time that you have in the ways that you want to and not in the ways that you think you should be.

‘If you want to spend the next however long you have sitting at home with your cat and your daughter, do that. 

‘If you want to go travelling to every country in the world, do that, but don’t put a pressure or an expectation on yourself just because you are dying. You are still you. You are still the person you were before.’

Megan met her partner Dimitar Kashchiev (pictured together) in 2018 and was diagnosed with the cancer less than a year into the relationship

Megan met her partner Dimitar Kashchiev (pictured together) in 2018 and was diagnosed with the cancer less than a year into the relationship

Megan's main physical symptom is feeling exhausted - as cleaning the house can tire her out for a number of days

Megan’s main physical symptom is feeling exhausted – as cleaning the house can tire her out for a number of days 

When she was first diagnosed with cancer, her treatment seemed to be effective and the tumour was shrinking. 

After researching ocular melanoma further with the UK-based charity Ocumel, she discovered that it had a 50 per cent chance of spreading to her liver and, if it did, it would mean the cancer was terminal.  

Eighteen months ago, it was confirmed that the cancer had spread to her liver.

‘When I talk about it I try to focus on the positives, which sounds so silly when you’re talking about terminal cancer, but there are positives like the fact they found it really early and I’m eligible for treatment,’ Megan explained. 

‘With ocular melanoma around 15 to 20 per cent of people wouldn’t even make it to a year and because I’m in the ocular melanoma community, I see how many people we lose so frequently. 

‘The biggest positive is that I’m alive, which is something that a lot of people don’t get to say. I also see more and more people defying the odds, people living four, five, six years after diagnosis, and treatments are progressing.

Although her cancer cannot be cured, she is receiving immunotherapy to try to contain it for as long as possible

Although her cancer cannot be cured, she is receiving immunotherapy to try to contain it for as long as possible

‘In the very beginning I didn’t understand the severity of the diagnosis at all. Of course, I knew that a cancer diagnosis is bad but when you look at the tumour it’s the size of millimetres, it’s tiny.

‘In my mind you can treat it and move on unscathed. I was naive, very naive. I didn’t understand the volume of it. 

WHAT IS OCULAR MELANOMA?

Ocular melanoma is a type of cancer that develops from melanocytes, cells that produce melanin – a pigment that gives skin, hair, and eyes their color.

While melanoma usually affects the skin, appearing as brown moles, melanocytes can also be found in the eyes.

Ocular melanoma can affect any part of the eye, though it’s most commonly found in the eyeball’s middle layer, the uvea, which contains the colored part of the eye known as the iris.

Symptoms include a change in shape or size of the pupil, changes in the eyeball’s position or movements, bulging eyes, dark spots on the iris, flashing lights in your field of vision, and blurry vision.

Though nearly 100,000 Americans are diagnosed with melanoma every year, according to the American Cancer Society (ACS), ocular melanoma is much more rare.

The estimated incidence is about five to six per every one million people, and those who are while or have lightly coloured eyes are deemed to be more at risk. 

If the cancer spreads, there is a 15 percent survival rate and if it does not chances of survival are 80 percent.

Although produced from the same cells in the body, called melanocytes, OM is different from skin melanoma and is not related to sun exposure.

‘I think it is difficult for people because I don’t look unwell. Sometimes I feel like it’s not actually happening to me, it’s kind of surreal.’

Megan’s main noticeable symptom is fatigue – and even cleaning the house can mean she needs to rest for a couple of days. 

She said she feels frustrated at her ‘new body’ and the fact she finds it more difficult to do things she used to find easy. 

She is receiving immunotherapy each week, which cannot treat her cancer but can help to contain it for as long as possible. 

But because ocular melanoma is so rare, it is difficult for her to get hold of treatment.  

Through fundraisers and appearing in the media, Megan has raised over £80,000 so she can receive chemosaturation treatment, which is unavailable on the NHS. 

It isolates the liver from the rest of the body and ‘bathes’ it in chemotherapy, proving effective on almost 90 per cent of patients.  

The What Matters Most? exhibition is photographed by Ceridwen Hughes, who was inspired by her own experience of end-of-life care, when her mother did from cancer in 2020. 

It is a collaboration between non-profit organisation Same But Different, end of life charities Marie Curie and Hospice UK and supported by the National Lottery Community Fund

It is on at the Senedd Oriel until February 15. 

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This post first appeared on Daily mail