Learning about life with Ocular Melanoma

On 28th November 2017, I was diagnosed with Ocular Melanoma. It’s been a totally life-changing diagnosis, a massive readjustment to my way of thinking – and in many ways, a positive one.

older woman having eye test with opticianMy name is Joanne Morgan, 45 years old, mother to three children and a TV make-up artist and business owner.

I’d been experiencing a strange flickering and flashing in my peripheral vision and made an appointment with my optician, where I was given a prescription for new glasses. The visual disturbances continued, and, following my instincts, I went to an ophthalmologist. The diagnosis I received was definitely not the one I expected, but I always knew I was one in a million!

Post-diagnosis

Ocular Melanoma is an incurable cancer. Even after it has been treated with Plaque Radiotherapy, there follows a lifetime of check ups for a secondary reoccurrence. I have a 6 monthly body scan for metastatic humours.

Struggling for information and resources to understand it just adds to the trauma, as does the constant explaining that we are not ‘fixed’ post treatment. Then there is the permanent worry caused by each niggle in your body, niggles that at one time you would have ignored.

Life becomes a revolving calendar of medical appointments, interspersed with visits from friends and family who, frankly, haven’t got a clue what’s really going on inside an OMie. Ninety nine per cent of medical professionals find you ‘fascinating’, when all you want is compassion.

Throughout it all the days continue. Juggling family, home and the wonderful team of make-up artists who work in my agency, Make-Up for TV, a whirlwind of media, TV and fashion.

Photo credit Rob Parfitt. Working through my troubled eye.

Photo credit Rob Parfitt. Working through my troubled eye.

From the chaos, I have learned to accept and adjust. I’ve met incredible people because of my diagnosis, and I’m doing things that I never imagined I could. Live TV, radio interviews, even writing this piece now.

Ocumel UK

OcuMel UK is a charity that supports patients and families living with Ocular Melanoma. Patients need resources for experienced nurses, access to MRI scans for early metastatic (secondary tumours) detection and research. Only 450-600 people are diagnosed each year in the UK, although when broken down to the 10-15 people a week statistic it does feel a little less rare. As yet there is no cure.

Being involved with raising awareness and fundraising, desperately needed, has given me incredible focus. And, by sharing my story I hope you’ll take a moment to listen to your body and ask yourself, “Is everything ok?”.

Your eyes are so important, after all, they are the windows to your soul. Regular eye tests are important – as well as age-related deterioration of our sight, eye tests can detect signs of medical problems such as blood pressure, glaucoma, cataracts and diabetes.

Go have an eye test. Book one for every member of the family, children as well. The medical recommendation is every 18-24 months unless you notice anything unusual, then go straight away. It could save your life.

OcuMel UK are planning a fundraising Gala Dinner in June. If you would like to become involved in any of their fundraising events, or their organisation, or feel you can provide them with any help, please contact OcuMel UK on 0300 790 0512 or email [email protected]

Joanne Morgan

About Joanne Morgan

My name is Joanne Morgan, 45 years old, mother to 3 children and a TV make-up artist and business owner. I was diagnosed with Ocular Melanoma on the 28th November 2017 following an ophthalmologist appointment. It’s been a totally life changing diagnosis. You can read more on my blog. Following my diagnosis, I have become actively involved in raising awareness and fundraising for OcuMel UK. If you would like to donate, visit my fundraising page