This blog piece is part of a one-off limited edition Capsule Collection inspired not by a quote but rather a cause. That cause is Head and Neck Cancer Australia who are making major efforts to raise awareness for this underfunded, largely unknown and less understood type of cancer.
I do want to caution that in this piece I have deliberately only included the dark side of my experience with head and neck cancer, albeit in a poetic way. As some readers may know, I actually traversed the challenge this diagnosis brought to my life with courage and have proudly kicked its ass. And I have been sharing all the wisdom I have learned in all in of the other pieces in The Haute Quoture ™ collection and will continue to do so.
However, it is World Head and Neck Cancer Day on 27 July. 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.
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.
If you want to know what you can do:
There is no screening for Head and Neck Cancer: early detection is key. Do you know the signs and symptoms? Find out more here.
Make a Donation. Head and Neck Cancer Australia is the only national charity dedicated to supporting the 17,000 people living with head and neck cancer and over 5,100 who are newly diagnosed in Australia each year. Your donation will help Head and Neck Cancer Australia provide information, education and support to people affected by head and neck cancer across Australia. Make a donation here.
#thehautequoture #wisdomyoucanwear #worldheadandneckcancerday #whncd #headandneckcancer #headandneckcanceraustralia #support #donatenow #mystory #whattheheck
I’m 4 years into my so called recovery. Side effects and all. Thankyou for your poem. truthfilly…… I felt like I wrote what I was reading .
All the same but different . I have 1/2 written things down here and there People say everyday . You should write a book . Well I wish I could and who knows , one day . .. but reading your poem made me felt like I did . This shit is real after all ??
Other people have felt this ? . New to me . I’m just starting to reach out and try and talk to some people at the moment. I’m at a bit of a crossroads and don’t know wh…
Love this x
Beautiful and poignant; the harrowing truth laid bare
How brave you are to fight this fight and still show up with care
To share your tale shows courage and refusal to give in
I’m so glad that our paths have crossed; you inspire me deep within
Sending love 💛