Sarah Susak

Sarah's poem, "Dear Head and Neck Cancer.. What the Heck?" was written for World Head and Neck Cancer Day on 27 July 2023 and dedicated to Head and Neck Cancer Australia, "making major efforts to raise awareness for this underfunded, largely unknown and less understood type of cancer."

In 2017, Sarah had an 18 hour-long surgery to remove a rare Adenoid Cystic Carcinoma that was growing on the inside the left side of her face.

Her upper left palette was removed entirely, a new one created using bones and skin from her leg.

But six weeks of radiation therapy to that new bone left her with bone necrosis - or bone death - meaning that getting new teeth with permanent dental implants is not safe for the time being.

Dear Head and Neck Cancer - What the Heck?

The poem below is from Sarah's blog, written to coincide with World Head and Neck Cancer Day on 27 July 2023 and dedicated to helping raise awareness of Head and Neck Cancer and the work of Head and Neck Cancer Australia.  

"To truly raise awareness, to truly explain what having Head and Neck Cancer really means, one has to share the darker and raw side. It is not written with my usual humour and positive mindset at all. But this piece reflects the real-life, hard-core facts of what the last 6 years of my life has been like since being diagnosed. I want to shine a light on this rare but highly impactful cancer. I hope it encourages people to support the great work of Head and Neck Cancer Australia as they launch their “What the Heck?” campaign." Sarah Susak, July 2023

Dear Head & Neck Cancer,

I have just endured 7 rounds of IVF to finally have my baby,
This pain neuralgia in my face might be cancer, maybe?
But she is only 1.5 years old, my miracle is finally here
One biopsy. One knowing look. I’m afraid it’s what you fear

What the heck?

You have a rare head and neck cancer, it’s a very serious case
The tumour is large and attached to nerves inside your face
We can operate immediately to remove it, we promise you to try
But the chances are it will metastasise, with a high chance you could die

What the heck?

You will need to move to Brisbane, the specialist you need is there
He is known as the “nerve chaser”, you will be under the best of care
But you must go now, and leave your job, this really is quite urgent
It is critical that we operate now, there can be no deferment

What the heck?

The surgery will take 19 hours, we will need to open up your face
We cannot say how you will look after, this is a very difficult case
Be prepared to lose an eye and possibly some of your ability to hear
Little did I know that half my mouth palette and teeth would disappear

What the heck?

My leg bone fibula entirely removed and used to rebuild my jaw
Skin from my leg, now my new mouth palette, it all feels so hard core
Veins from my feet used to connect it all and one nostril completely collapsed
Hearing in one ear lost and seven of my teeth thrown out as scraps

What the heck?

The tumour is gone, but I wouldn’t know because now I am in ICU
For 7 days, that were so touch and go, I almost didn’t make it through
The drugs, hallucinations, pain, dread and fear will forever haunt my mind The tracheotomy and inability to speak, a torture of an unexplainable kind

What the heck?

Seeing the look of distress on my husbands’ face and his helplessness and despair
But at the same time hating his guts for not rescuing me from there
No talking or eating for over a month, I’m starting to go mad
To feel water again down the back of my throat, I am longing for that so bad

What the heck?

A short respite back home in Sydney to gear up for what was to come
Then back to Brisbane but this time with my beautiful and devoted mum
She travels with me to the hospital, every day in a taxi to and fro
For six weeks of daily radiation, my energy so low

What the heck?

In a suffocating face mask, head and body locked down on a narrow bed
Then slid inside a narrow tube for forty minutes of noise and dread
The nausea, fatigue and ulcerations intensified with each painful burn
My face raw red, my body lifeless, I struggle each day to return

What the heck?

It doesn’t end after all of the treatment, the side effects are long term and real
I can no longer open my mouth wide enough to just eat a normal meal
My new jaw radiated to the point of bone death causing small bones to poke out of my gum
Slicing up my tongue to the point where talking is impossible, another unexpected outcome

What the heck?

You cannot imagine the joy to hear after five years that you’re in remission
But unfortunately for everyone in my life, that does not end the survival mission
No teeth, hearing aids, 18 dentures that fall out with no back teeth to keep them stable
Can’t get permanent implants due to the bone death, it’s all too fragile to be able

What the heck?

Smells are harder to enjoy, all my taste buds have been burned
They might come back one day I’m told, but it’s hard not to be concerned
The intense and ongoing nerve pain in my face that literally stops me in my track
Can’t talk, can’t work, cant socialise, I’m slowly starting to crack

What the heck?

People think that it’s over 6 years on, but nothing for me is the same
I feel I’m always letting everyone down, managing daily feelings of guilt and shame
Scans every six months with agonising waits for the news from my Doc
The fear of cancer recurrence lives with me daily, around the clock

What the heck?

Afraid to look weak, afraid to complain
Afraid to tell people I am going insane
Afraid to appear anything but grateful
Resisting the natural urge to be toxic and hateful

What the heck?

Seeing the impact on my family, friends and those who love me dearly
My spurts of rage, fear, pain and anxiety affecting them all severely
The impact on my confidence, the lingering looks as people pass you
The realisation of how intense it is what my family and I have gone through

What the heck?

No-one should have to go through this, we need to find a way
To research it more, raise awareness, and keep this cancer at bay
Please support the work Head and Neck Cancer Australia do, we know this cancer is rare
But surely you'll agree with me, that doesn’t mean we shouldn’t care.

Thank you Sarah for sharing your story and heartfelt poem to help raise awareness and advocate for improved funding to support people living with Head and Neck Cancer.