They’ve had invasive, life-altering surgeries on their face, tongue, throat, sinuses and salivary glands as victims of head and neck cancer. They’ve experienced the life-saving pain of radiotherapy. They’ve endured rounds of chemotherapy and immunotherapy.
Now, as members of the club no one wants to join, over 60 people from around Australia who have experienced Head and Neck Cancer have come together for Australia’s first-ever Head and Neck Cancer Virtual Christmas Choir.
Chief Executive of the organisation, Nadia Rosin, says the choir’s voices include the real voices of survivors and the people who love them in an effort to raise awareness of one of the lesser known cancers which is unfortunately on the rise.
For choir members who could not sing because of surgery, pain, side effects or even fear of singing, they were welcome to clap, dance, play an instrument or even hold up a sign.
In the past 30 years there has been an alarming 385% increase in oral cancers in young women under 45 and the cause is unknown with many of the patients non smokers.
“Our choir is elevating the voices of survivors and advocating for the 5,100 Australians diagnosed every year, and the 17,000 Australians living with the effects of head and neck cancer, so that we can raise awareness and deliver the right support and treatment for our Head and Neck Cancer community,” she says.
She adds that the reality of Head and Neck Cancer in Australia is that it is a life-altering and for some a life limiting cancer.
“People who survive are forever changed. And many people don’t survive, with over 1,000 people dying each year from a type of head and neck cancer. But unlike some more common cancers, head and neck cancer receives no government funding for prevention, early diagnosis or to improve patient outcomes.”
“Many people haven’t even heard of head and neck cancers until they, or someone they love, is diagnosed with one of these cancers. Think sinus cancer, salivary gland cancer, throat cancer, tongue cancer, laryngeal cancer and lip or mouth cancer.”
Whilst high uses of tobacco and alcohol use are responsible for over 75% of cases, what many people do not know is that the human papilloma virus (HPV), the same virus that causes cervical cancer, is the most common cause of tonsil cancer and base of tongue cancer.
“It may seem strange that given that many people’s voices and ability to speak is changed by this cancer, or its treatment, we’ve decided to form a pop-up, virtual choir,” says Ms Rosin.
“But we worked very closely with an experienced choir master, speech pathologist and mixing engineer so that everyone who wanted to participate could participate and we believe it is a powerful way to demonstrate the incredible strength they have shown to survive and that everyone’s voice matters, and everyone deserves to be heard. We are singing our hearts out for better outcomes for patients and an improved quality of life for people diagnosed with head and neck cancer.”
CEO of the Melbourne Fashion Festival and HANCA Ambassador, Graeme Lewsey, was diagnosed with a human papilloma virus (HPV) related to Head and Neck Cancer in 2020.
“I felt a lump on my neck. I thought it was unusual but because it wasn’t a hard lump I didn’t worry. It blindsided me. I was so fit and healthy.”
“I’m 12 months out from treatment but I know some of the side effects like having a dry mouth which affects my teeth and tinnitus that affects my hearing will last the next few years, possibly forever.”
Head and neck cancers are such a sinister disease and the effects of the cancer and their treatment can stay with people for the rest of their lives. It is displayed on their faces for the world to see and it cannot be hidden by clothing.
Unlike some more common cancers, there is no screening test for head and neck cancer so all Australians, particularly men, need to be aware of the signs and symptoms and act quickly if they notice something unusual.
Some of the more common symptoms include a sore in the mouth that doesn’t heal, pain swallowing, a sore throat or a lump in the neck. Other symptoms can include ear pain, a blocked nose on one side and/or bloody discharge or a bulging or watery eye.
The best thing people can do to reduce their risks around head and neck cancer to is to be aware of the symptoms and get them checked out by their local doctor or dentist without delay. An early diagnosis can make all the difference.
“My personal journey highlighted many gaps and opportunities to improve support for people living with head and neck cancer. Cancer doesn’t discriminate. More desperately needs to be done to help people in this community like other more common cancers.”
Given changing restrictions around gathering and singing because of COVID-19, and especially that many of our patients are immunocompromised and especially vulnerable to illness, the Head and Neck Cancer Choir was entirely virtual. It meant that everyone who wanted to take part could do so. And join they did! The choir transcended borders with people joining from Queensland, NSW, Victoria, South Australia and Western Australia.
The finished song – Deck the Halls, a much-loved Christmas carol – is now available here and will be sent to every politician in Australia to advocate for funding support. We encourage everyone across the country to share it far and wide. Funding for awareness and patient support is the way we’ll improve health outcomes – and literally change lives – for people diagnosed with it.
Audio grabs are available.