Carolyn Alkemade planned to cap off her recent 30th wedding anniversary with her husband Mick over a special dinner and a show in East Gippsland.
Instead, courtesy of a simple eye test, she found herself at Melbourne’s Royal Victorian Eye and Ear Hospital dealing with a horrifying diagnosis.
Still, Carolyn says it could have been worse.
Carolyn, a nurse, is the Care Coordinator with Bairnsdale Regional Health Service’s Aboriginal Health Unit.
She and Mick live away from Bairnsdale in a coastal town, so a night of celebration on Friday 28 March was an excuse complete a few of life’s more mundane tasks during the day while they were in the regional centre.
Both had their annual skin check. Then, to “kill some time”, Carolyn said, she went to an optometrist in the same street and opted to take an additional test with dilated pupils to give the optometrist a better view of the back of her eyes.
It was a life-changing and potentially life-saving decision. The optometrist initially diagnosed a detached retina.
“I said, ‘What? I’m fine. That doesn’t make sense’. She said, ‘You have to go to the Eye and Ear Hospital right now. I was like, ‘We’ve got dinner and a show’. She said, ‘No. Straight down to the Eye and Ear’.”
SHOCK
By 8.30pm, Carolyn was in the Emergency Department at the Eye and Ear Hospital, more than 300km from home. Within hours, Carolyn learned she had an ocular melanoma, an extremely rare cancer affecting 5 to 6 Australian per million, attached to the retina in her right eye.
These statistics only reflect people who are diagnosed. It’s possible others have the tumour and have no idea.
The seasoned nursing professional said she had never heard of ocular melanoma.
“I had no sleep. I was exhausted. I was wondering, ‘Is this really happening?’. I was in shock. Then the junior doctor came back and asked us to explain what we understood about this, and it felt like I was giving a (nursing) handover about some other person. I couldn’t believe I was saying it. This was about me,” she said.
Carolyn and Mick drove 4.5 hours home to break the news to loved ones and prepare to return to the Eye and Ear the following week for tests.
Back home, Carolyn went back to her skin specialist and explained what happened. “She’d never seen it. She gave me a lot of resources. Everyone’s been really good but it’s really scary when you don’t know where to start. You want the evidence, and you’ve got to try to find that, but you can’t really think straight. It was a full-time job trying to work it out.”
TREATMENT
At the Eye and Ear, Carolyn had consultations with specialists, and ultrasounds of the tumour in preparation for brachytherapy surgery.
In brachytherapy, a piece of radioactive material is placed directly on the tumour to burn it out. This surgery will take place soon at the Eye and Ear.
Because she will be radioactive for a few days, Carolyn will be largely isolated.
A CT scan determined if Carolyn’s cancer had spread (thankfully, it had not). This reinforced the importance of screening, early detection and lifelong monitoring.
The rare nature of the cancer made it difficult to find information about it, Carolyn said, but her own research paid off and helped her to have conversations with her two children, her parents and other loved ones about the road ahead.
“The thing is I had absolutely no signs and symptoms. Nothing at all,” she said.
“I was able to find reputable resources. I was able to sit with my family and go through all of that together and explain it so they understood. As a nurse, I can process it but it’s quite difficult to navigate.”
Part of that research led in an unexpected direction. Carolyn found the Ocular Melanoma Awareness Support Group on Facebook and began asking questions.
FRIENDLY ADVICE
Then, a friend phoned, saying she’s a member of the group and also had ocular melanoma.
“It was just so good in the group to know that other people are in the same boat as me, because it’s so rare, and then I got that call,” Carolyn said.
“She had the brachytherapy, that same radiation treatment, and that’s just been amazing for me. She’s told me so much. She’s talked to me about what to expect when I go into hospital and some tips and tricks of how to get through those days in hospital. She said what I went through in that first week, that’s the hardest thing. That’s a relief.”
Carolyn and Mick had hiked the challenging South Coast Walk in Tasmania over nine days just before her diagnosis.
Since then, they took time with a group on an eight-day hike down the NSW south coast to Cape Howe, where the Victoria-NSW border meets the sea.
“It was just beautiful. Listening to the birds, feeling the sand in my feet as I’m walking along the beach and being quite mindful. I was very much paying attention to my other senses,” Carolyn said.
SHARING HER STORY
“I’ve come back to work. Now I just want to share the story – because if this story can help anyone else, if somebody could just get the extra eye test I had, and that might save their life, I’d be really happy.”
Carolyn’s advice – an alert to family, friends, colleagues and community
- Book in for a DILATED EYE EXAMINATION today – It could save your life
- Get screened
- Ask for a dilated eye examination with your optometrist
Get the story
Knowledge is power. Ensure the information is from a reliable source:
- Cancer Council – Understanding-Ocular-Melanoma.pdf
- The Eye and Ear Hospital – What is Plaque Radiotherapy/Brachytherapy? Plaque Brachytherapy surgery – The Royal Victorian Eye and Ear Hospital
- Direct access to your health information My Health Record
Get the support
- Family, friends, colleagues and community
- Contact cancer support – Cancer Council Victoria
- Support Services – Melanoma Patients Australia
- Eye and Ear Hospital multidisciplinary team
- See your GP
- Visit an optometrist
- Ocular Melanoma Awareness – AUS | Facebook
- Peer support
- Use work’s Employee Assistance Program, if you have one
Get the treatment
