Katie Kaars
- When a kiss from Sarah’s husband gave her an extreme electric shock it revealed a sinister truth.
- Doctors discovered a gumball sized cystic carcinoma, a rare form of head and neck cancer.
- Surgery to remove the cancer left Sarah with a gaping hole in her nose and missing seven teeth.
- Sarah penned a book about her amazing battle back to health thanking her daughter and husband, whose kiss saved her life.
Here Sarah Susak, 48, from Castlecrag. NSW, shares her story in her own words.
Blow-drying my hair in the bathroom, I saw my husband Halan, then 48, come in.
‘I’m off to work,’ he said, kissing me goodbye.
‘Ouch,’ I yelped, recoiling in pain as I felt a sharp electrical current shoot down the left side of my face. ‘I know we’ve always had chemistry, but that was one hell of an electric shock!’ I joked.
It was August 2017, and we’d been married for four years. After eight heartbreaking rounds of IVF, we’d finally welcomed our miracle baby Stella, 18 months before and were on cloud nine.
But the pain from Halan’s kiss was something I’d never felt before, so I nipped to the doctors that day to get checked out.
Diagnosed with nerve pain in my face, I was told to manage it with painkillers.
‘I know we’ve always had chemistry, but that was one hell of an electric shock!’
But the shocks returned with a vengeance whenever I touched my face or felt a breeze.
Back at the GP, I was referred to an ear, nose and throat specialist. After spotting a gumball-sized lump on the left side of my mouth, he took a biopsy and sent me for an MRI.
Returning for the results a few days later, I had Halan and my mum, Judy, then 67, by my side.
‘I’m afraid you have adenoid cystic carcinoma,’ the specialist said, explaining it was a rare form of head and neck cancer.
‘It’s likely it’ll spread and although treatment will prolong your life, it won’t save you,’ he warned.
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What is Adenoid cystic carcinoma (ACC)?
Adenoid cystic carcinoma (ACC) is a rare type of cancer developing in glandular tissues, commonly in the head and neck, often starting in the salivary glands of the mouth, throat, and neck. Malignant (cancerous) tumours can spread to other parts of the body.
ACC can develop at any age but is more common between 40 to 60 years.
Symptoms:
- Salivary gland (produces saliva) – painless lump in the mouth, face or neck; numbness in the face; weakness in facial muscles or drooping in the face; problems swallowing or opening mouth
- Lacrimal gland (produces tears) – bulging eye; changes in vision
- Larynx (voice box) and trachea (windpipe) – hoarseness; changes in speech and difficulty breathing
- Skin – increased sensitivity and pain, pus and/or blood discharge
- Breast – slow growing lump that may be tender or cause pain
- www.cancer.org.au
The news hit me like a ton of bricks.
I’d always been healthy – why had I been dealt such a cruel twist of fate?
‘Dying is not an option,’ I said to Halan. ‘We fought so hard to have Stella, I’m surviving for her.’
Referred to a specialist surgeon in Brisbane for treatment, I was filled with fear, but also hope. To survive I needed highly complicated, risky surgery to remove the tumour, that’d likely result in losing my hearing and an eye.
‘I’ll never look the same again,’ I said to Halan.
‘You’ll always be beautiful to me,’ he replied, hugging me.
‘I knew my wounds were proof I’d survived.’
Three weeks later, I was admitted to the Princess Alexandra Hospital in Brisbane for the gruelling 19-hour op.
As I waited to go into theatre I couldn’t believe a kiss from my hubby had lead to my diagnosis and hospitalisation.
When I woke, Halan was at my bedside.
I had a tracheotomy in my throat to help me breath, and my face was incredibly swollen.
Stitched up like a patchwork doll, I had a gaping hole in my nose and was missing seven teeth.
Surgeons had taken my fibula bone and skin from my left leg to reconstruct my palate and jaw.
They’d also taken veins from my feet to reconnect the muscles and nerves. It was mind-blowing to think surgeons had built me a new face out of my legs and feet.
Miraculously, they’d managed to save my eye and, although I’d lost most of the hearing in my left ear and needed a hearing aid, I could hear perfectly well on the right side.
Despite being shocked when I looked in the mirror, I knew my wounds were proof I’d survived.
Surgeons utilised fibula bone and skin from Sarah’s left leg to reconstruct her palate and jaw. (Credit: Supplied)
Unable to eat or talk, I wrote notes with a pen and paper to communicate.
I underwent six weeks of radiotherapy to keep the cancer at bay.
During this time, I was finally able to talk again.
It was weird hearing my voice – it sounded raspy and I couldn’t say much as my throat was so sore after having a hole in it. Slowly one word turned into sentences and then conversations.
‘ I was just grateful to be alive.’
Back at home nine months later, I made up for lost time with Stella, giving her cuddles, playing with her and reading her books.
I also turned to Vedic Meditation – a mantra-based form of meditation – to help cope with the trauma I’d endured.
Three months after being discharged – a year after the op – I went back to my legal job at a food manufacturer. I also became a Vedic practitioner, starting my own business, Medi Steady Go.
I learned to be unfazed by the stares in the street, and other issues like my inability to taste or smell food, after the op and radiotherapy.
I even got used to plucking the shin hairs growing inside my mouth!
Unfortunately, radiotherapy disintegrated the fibula bone in my mouth, meaning I couldn’t have my missing teeth replaced.
Still, I was just grateful to be alive.
Then in April 2024, a routine scan showed the cancer had metastasised in my lungs. Three weeks later, I had an op to remove the growth, which thankfully was a success.
But during that time, I experienced paralysis from my neck down and was on life support for four days.
Diagnosed with Guillain-Barre syndrome – a rare neurological disorder where your body’s immune system turns on its nervous system, I spent two and a half months in hospital and six months as an outpatient relearning to swallow, talk and walk.
Now one year on, I’m cancer-free and focused on the future.
To inspire others, I wrote a book – YOURU: Find the Guru within You – about my journey.
‘His kiss saved my life.’
Recently, Stella, now nine, gave a speech at school on role models, and she chose me.
‘My mum is the bravest person I know,’ she said. ‘She has taught me you can get through anything and still find happiness in every way.’
I couldn’t fight the tears of pride.
I made a promise to survive for Stella and I cherish every day with her and my hubby.
After all, it was his kiss that saved my life.
Visit sarahsusak.com for more information on learning meditation and to buy her book. Also follow Sarah on Instagram @sarah_susak
