Warning: contains graphic images and medical content of the everyday lives of people living with the effects of Head and Neck Cancer treatment.
My message to anyone reading this is if you have a BCC get it checked. Not every person’s skin cancer is going to be the same. Some will be aggressive. Jo, Queensland
In 2003 Jo Coombes, now 57, was a 37-year-old mum of two living in Queanbeyan, NSW and working at Coles when her partner noticed two tiny crusty spots on her upper lip. She didn’t think much of them but went to her GP who froze them off.
But back they came. Jo went back to her doctor who gave her vitamin E. It didn’t work and the spots were frozen off again. In 2004 Jo’s GP sent her to a skin cancer specialist who recommended Aldara cream. She used it as directed for six weeks all over her upper lip area, and, although it made her skin very sore, the spots disappeared.
Six months later both spots were back, and she was finally sent for a biopsy. The diagnosis: Basal Cell Carcinoma or BCC – the most common form of Skin Cancer, considered curable and minor. Jo was told it was the "cancer you want to get if you’re going to get a cancer”.
But Jo’s experience turned out to be very different.
She was referred to a Plastic Surgeon in Canberra who organised an MRI which confirmed that her three BCCs were infiltrating.
“I was told because my BCCs were not superficial I should never have been recommended Aldara cream. The cream had made them spread like a spiderweb. They hadn’t even done a biopsy.”
2006 was Jo’s first round of three surgeries to remove the three BCCs. Over the next 20 years Jo has endured over 25 surgeries, three lots of radiation therapy and various forms of chemotherapy.
“With each surgery they took skin from different parts of my neck, face and body. I felt like a patchwork quilt.“
Throughout it all, Jo continued to work at Coles.
In 2011 Jo and her family moved to Queensland for a fresh start, but in 2012 the cancer was back, and Jo’s new GP sent her straight to Ipswich Hospital.
“That was my first appointment with a Head and Neck Multidisciplinary Team. I remember thinking, ‘WOW! Are they all here for me?”
“I met ENT and plastic surgeons, radiation oncologist, dentist, nurses - the works. They wanted to do surgery, but I had no skin left for them to graft and so it was decided to do two lots of radiation at the Mater Hospital in Brisbane, one for the inside of my nose and the other for the general lip and nose area.”
“I was told I would need to have my back teeth removed before I started radiation, and I had two radiation therapy immobilisation masks fitted.”
Following treatment an MRI revealed the cancer was gone and Jo, still working at Coles, went for a “blissful” two years cancer free.
“I loved my job and the customers and management were very understanding and supportive.”
But at the end of 2014 a biopsy on the side of her nose revealed the cancer had returned and Jo was told she needed to have her nose removed.
“I thought ‘Oh No! How much more can I take. I used to dance and sing on my register. I’d sometimes sing on the PA and make up words to the songs that were playing and do a good morning shout out to everyone saying, ‘Don’t let life get to you.’
Still Jo battled on, continuing to work at Coles and in 2018 she married her long-term partner, Mark.
Fast forward to 2019 Jo was told the cancer was back and growing at a rapid pace, now just centimeters from her brain. Drastic surgery was planned.
“I spent a lot of time from June 2019 shedding tears. Work was my only respite and I had no choice but to resign. My poor son Ryan was only in Year 8 when these surgeries began.
“I woke up after surgery on October 31 - Halloween - looking like a Halloween character. I’d had a 16 hour surgery: my nose, eye, eye socket and cheekbone all removed. They used skin and tissue from my left leg leaving me with a 50 cm scar. I spent 16 days in hospital.”
“My daughter brought my then 9-year-old granddaughter in to see me. I hadn’t looked in the mirror at that stage. But when I finally saw my face, I was devastated that she’d witnessed that. I thought she’d have nightmares forever.”
“I remember the Occupational Therapist wanting me to get up and walk around the ward. But I didn’t want people to see me. I wanted the curtains around my bed closed and to hide.”
“A lot of health professionals don’t understand – I know they think they’ve seen everything – but they need to have respect for the person who’s woken up with pieces of their face missing. Give them time to adjust.”
Jo was not offered any psychological help to get through the adjustment of living with a major facial deformity.
"I can’t stress enough the need for a psychologist to be part of the MDT looking after patients and their families, particular people like me."
“They ask you what your major concerns are for surgery. I said, ‘Being able to see, being able to put my glasses on my face.’ None of that was addressed.”
You would hope Jo’s story would end here. Awful and gruelling but finally an end to the brutal surgery and treatment, but in 2020 a new biopsy showed the skin cancer was back.
“Mark was devastated, we all were. The surgeons had to find an operating room that had a 10-hour time-slot available for ENT and Plastics to do their thing ASAP.”
The year finished with another 30 treatments of radiation and radiation therapy mask number three.
In 2021 Jo met Sophie Fleming from Prosthetic Art Technology and, at the time of sharing her story, was hopeful that with the help of further surgery she may be able to have a prosthetic nose and potentially a prosthetic eye made.
“Cancer hasn’t killed me, but it’s killed a lot of me. I’ve buried parts of my face. I mourn the person I used to be. I miss me. I’d love to put on some makeup and go out, but I’ve lost all of that. From being a bright, bubbly person, it has affected my speech, what I can eat, my sight, my hearing, my job.
“To have it come back each time and be even more disfigured…” Jo trails off.
I had to fight to get NDIS to prove I was disabled but I couldn’t go back to work because of my eyesight. Then I had to prove that my cancer was genetic so I could get immunotherapy.”
“Cancer has taken my lifestyle. It’s taken who I was. I’ve lost friends, I have no photos with my grandchildren. I don’t go to their birthday parties because I want the focus to be on them, not on me.
“As a woman having all this done… sometimes you want to feel beautiful and look beautiful. I don’t have that option. It has been completely taken away.
“My message to anyone reading this is if you have a BCC get it checked. Not every person’s skin cancer is going to be the same. Some will be aggressive. It’s worth getting it removed and having a small scar.
“And it’s not always lifestyle and sun exposure that causes it, it may be in your genes, like me.
“I’ve spent a lot of time crying. I lie awake and wonder if it will come back. Mark has been there every step of the way.
“For me it was a decision. Do I get the cancer taken out and lose my face and a huge part of me, or do I let it go to my brain where it will affect all my loved ones?
“But I wasn’t ready to die.
“I still go for morning tea every Tuesday with a group of old customers from Coles Redbank Plains – their friendship and support is so important to me. A support carer takes me, we do my groceries and I have coffee with the ladies.
My husband, kids and grandkids are what keep me going. What I want to see is a cure and more support for people like me.”
Jo, you are an inspiration. Thank you for sharing your story.
To learn more about Skin Cancer on the Face, Nose and Lip click here.
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