My fight with ‘Ivan the Terrible’
23 November 2024
Shelley Bird is in a fight for her life with an incredibly rare and aggressive cancer that’s turned her quiet country life in regional NSW upside down.
She’s named her tumour “Ivan the terrible” and she’s determined to “kill the b*stard” and see her grandson start school.
Shelley has vaginal mucosal melanoma – it’s so rare that it only accounts for two in every one-million cases of melanoma globally.
That delivers some big challenges for doctors as little is known about it and few will ever see a case of it come across their desk.
Mucosal melanoma is an “internal melanoma” in the inner moist tissue that line the cavities inside the body such as mouth, nose, sinuses, and pelvic organs – areas where the sun certainly doesn’t shine.
Shelley’s first sign something was wrong was constant bleeding – that was over a year ago.
As soon as she heard the words “mucosal melanoma”, she hit Google to find out as much as she could about it – she knew it was rare and wanted to try and get on the front foot, find out everything she possibly could.
She’s now done well over “500 hours of research”.
She also hit social media and spoke to people with the disease across the globe – hearing many stories of death, but also many of survival, from as far away as the United States where one woman has been living with the disease for eight years.
Peter Mac is a long way from Shelley’s home in Culcairn in NSW where she lives with her partner Graeme – the pair making the trip to Melbourne every three or four-weeks for treatment.
It’s a 375km drive each way but Shelley won’t go anywhere but Peter Mac - she says the staff are now her second family and she’s “not come across one stinker yet”.
Her medical team has hit Ivan with immunotherapy and radiation – so far, it’s not spread and some of her symptoms (like bleeding) have abated.
“This type of melanoma forms from pigment-producing cells called melanocytes which are unexpectedly found in mucosal tissues creating an aggressive tumour that can quickly spread to other organs,” explains Peter Mac Medical Oncologist Julia Lai Kwon, one of Shelley’s extensive multidisciplinary team says.
“It’s often diagnosed at advanced stages because they remain hidden inside the body and don’t often present visible warning signs like skin melanomas.”
“Whilst immunotherapy works very effectively for people with melanomas of the skin, mucosal melanomas behave quite differently, and immunotherapy may not be as effective.”
Shelley is responding to the immunotherapy so far and is currently no evidence of disease – something that’s given Shelley and Graeme hope they can beat it.
The two of them are both on the frontline in this battle against Ivan together – Graeme by her side for every single biopsy, blood test, MRI, PET scan and immunotherapy treatment – helping to carry her through the really tough days.
Her life, once defined by long-term plans, has shifted to living from scan to scan.
What matters now is the everyday moments, like spending time with her grandson.
“I want to take my grandson for his first day of school. I want to see him go in. I want to be there when he comes out and says, ‘Nana, I had a wonderful day and I made friends’,” Shelley says fighting back tears.
Shelley’s cancer has tested every aspect of her life, but it has also revealed her strength – a self-described “tough old bit*h”, she’s determined to kill Ivan and also to get mucosal melanoma on the radar.
The journey has also brought reflections on legacy and how she can help others who are diagnosed with this terrible cancer in years to come.
She says she wants to donate her body to science, ensuring future generations benefit from what’s she’s living through.
“This isn’t about me—it’s about my daughters, granddaughters, sisters, nieces - for all women. If they get this disease, research needs to be there to help them.”
For now, Shelley is determined to see the birth of her next grandchild.
“I won’t stop fighting, ever,” she exclaims.
“Not until Ivan the Terrible is gone for good.”