Sarah Susak was getting ready for work one morning, applying her makeup in the bathroom mirror, when her husband Halan popped his head around the door. 

As he gave Sarah a goodbye kiss, a zap startled her.

It felt like an electric shocked had jolted her right in the face.

‘I knew we had chemistry but that was intense,’ Sarah, now 48, tells me with a laugh.

While Sarah had made a similar joke at the time, she decided to see a doctor. She’d been suffering facial pain for weeks and was now worried something might be seriously wrong. 

Later that day, her doctor told her that it was simply nerve pain and would go away on its own. 

Sarah was fit and healthy, with no other symptoms, so her GP wasn’t remotely concerned.

But the pain was impossible for her to ignore. 

When Sarah Susak felt an electric shock sensation after kissing her husband Halan, she rushed to the doctor. (Sarah is pictured on the right, before her diagnosis, alongside her mother, left)

Only 18 months prior to her diagnosis, she welcomed a beautiful baby girl into the world via IVF

‘I always wanted to be a mum,’ says Sarah

‘I let it go for another week but it was too obvious something was wrong,’ Sarah, from Sydney, adds.

A few days later, she went to see a specialist and when she opened her mouth, the doctor told her he could see a visible mass inside.

‘I don’t know how I didn’t see it before but you could see the tumour in my mouth sticking out of the palate. If I had been to the dentist, they would’ve spotted it,’ Sarah explains.

A biopsy was carried out and Sarah was asked to return for the results.

She was diagnosed with adenoid cystic carcinoma, an extremely rare and aggressive form of head and neck cancer. The tumour was dangerously close to nerve endings in her neck and growing in the direction of her brain.

Sarah’s world came crashing down as the doctor explained the prognosis.

‘We can operate to remove the tumour and then treat you with radiation, which should give you another five or so years, but then it will likely metastasise to another part of your body and you could die,’ they said.

‘The only word in my head when the doctor told me I have cancer was “Stella”. That’s what broke me the most – thinking she wouldn’t have a mother,’ she says.

Sarah’s daughter Stella was just 18 months old at the time. She was a miracle baby for Sarah and Halan, having been conceived after eight rounds of IVF treatment. 

Sarah was diagnosed with with adenoid cystic carcinoma, an extremely rare and aggressive form of head and neck cancer 

Sarah went to Brisbane for 19-hour facial surgery. Doctors warned she could lose her left eye, risked becoming deaf in one ear and that a nostril would collapse. Her one request was to live

‘I always wanted to be a mum. I didn’t know what my life would be like if I didn’t have a child. I probably would’ve had more if I didn’t have cancer,’ she adds.

Sarah and her family went to Brisbane for her gruelling 19-hour facial surgery. Doctors warned she could lose her left eye, risked becoming deaf in one ear and that a nostril would collapse.

Despite fearing the worst, Sarah gave the surgeons permission to do whatever was necessary to remove the cancer, regardless of what happened to her appearance as a result. 

Her one request was to survive – for her daughter.

‘The plastic surgeon said he would try his best to avoid a visual “train wreck”,’ she says.

‘The original plan was open-face surgery, but when the surgeons commenced, they realised they could avoid that if they sought to remove the tumour by accessing it through my mouth.

‘That would require them to literally cut out half of my upper mouth and teeth.’ 

Surgeons successfully removed the tumour and used the entire fibula bone in her leg, as well as veins from her feet, to reconstruct a new palette and left jaw.

After the surgery, Sarah rested at home for a month.

She then returned to hospital for six weeks of radiotherapy, which she reveals was far tougher than recovering from surgery.

‘I was basically burnt for six weeks. They were such severe burns, plus illness and fatigue. Looking back, I wonder if it was really necessary,’ she tells me.  

Since the type of cancer Sarah had was so rare, its cause remains unknown. But during her treatment and recovery, Sarah did a lot of soul searching as to why this might have happened to her. 

‘There were a lot of things about my life that I can now say in hindsight were not the healthiest ways to live,’ she says. 

Sarah’s demanding corporate job meant she often worked until 1am, ate fast food for dinner because it was convenient, and drank alcohol recreationally. 

In her younger years while living in Paris, she smoked cigarettes without considering the consequences. 

‘Everything changed after I got cancer and I’m now the healthiest I’ve ever been,’ she adds. 

After her ordeal, Sarah was ready to move on with her life – but fate had other plans. 

In April last year, she suffered another blow when doctors found cancer cells had spread to her lungs. 

Though the lesion was safely removed, she developed a rare autoimmune condition called Guillain-Barré Syndrome (GBS) where the body’s immune system turns on the nervous system. 

‘I came home from surgery and felt happy as Larry. Then, all of a sudden, my body felt like a human refrigerator. It was freezing cold and I couldn’t feel anything I touched,’ she explains. 

‘I went to the hospital and was told I was having a panic attack – I wasn’t. I was sent home but my symptoms continued so I took myself back to the ER where I stayed for two days – even as they ignored me.’

Sarah was finally admitted to see a specialist who ‘never came’ so all she could do was sit on the floor of the hospital corridor. 

‘I said, “I’m not moving until someone sees me,”‘ she tells me.

A sympathetic nurse eventually found a neurologist who almost immediately realised the severity of her condition and rushed her intensive care.

Within four hours, she was paralysed from the neck down. She spent four days on life support while receiving round-the-clock care.

They were able to save her life – but she had to learn to walk and swallow again. 

Incredibly, the cancer and Guillain-Barré Syndrome weren’t linked – it was simply ‘bad luck’. 

In April last year, she suffered another blow when doctors found cancer cells had spread to her lungs. She also developed a rare autoimmune condition called Guillain-Barré Syndrome

Now, Sarah can only eat soft foods, one nostril doesn’t work, she wears a hearing aid and swallowing can be challenging

Today, Sarah is in remission, but her face still bears scars of what she’s been through.

The teeth on the left side of her mouth are missing and cannot be replaced.

‘I can’t get dentures and I can’t get implants because there’s nowhere to clip a denture into one side, and the implants would probably ruin the bone that’s been damaged from radiation, so it’s too difficult,’ she says.

Eight years on, Sarah says she is ‘used to’ her new appearance, as is daughter Stella.

‘Stella’s grown up with me looking this way. She has never known any different, but she’s remarkable. When I was in hospital last year, everyone said, “You can’t let Stella see you like this,” but I did. When she came in, she just looked at me and said, “Well, you look weird, don’t you?” We both laughed.

‘She’s a wonderful daughter.’

‘I do still get funny looks when chatting to strangers in public, but it’s more awkward than embarrassing.

‘But I’m grateful to be alive – that’s all that matters.’

Sarah has released a book titled ‘YOURU: Find the Guru within You’ to share her story and help others seek the light through dark times