A new Cancer Council online support group for people with mouth, nose and throat cancer (sometimes called head and neck cancer) will help give a ‘voice' to people who face unique and debilitating issues after treatment.
Accessed via the Cancer Connections website, this group will be the first of its kind to provide specialised support to mouth, nose and throat patients who face complex communication challenges on a daily basis.
No-one knows this more than Karen. Her symptoms started with a mouth ulcer that wouldn't go away.
"I was finding it more and more difficult to eat and my tongue was becoming painful whenever I was speaking," Karen said.
"I told my employer that I would be back in the office in a couple of hours, expecting to be given some super strong antibiotics and then return to the office and resume my life."
But Karen's life was about to change forever - tests revealed tongue cancer.
It has now been more than three years since Karen's diagnosis. Treatments have left her unable to speak clearly after having 80% of her tongue removed. She lives with a feeding tube and has great difficulty eating and drinking. Karen has also had to deal with the loss of her physical identity and grieves for her changed facial appearance.
"The difficulties a head and neck cancer patient struggles with are unique and debilitating - it can be very isolating and lonely," Karen said.
"This new group will give us somewhere to go. Just to know that there are other people in a similar situation is a relief in itself.
"People can share their experiences and reassure others that many of the things that are happening to them are actually 'the norm' and help them to work through any difficulties," she said.
Despite still undergoing treatments and procedures to improve the condition of her mouth, Karen is staying positive and focusing on an improved future.
"Those who have travelled down the same path are truly the only people who can understand the difficulties and how brutal it is," she said.
"The online group will give us a ‘voice' and help people like me feel less isolated in our experience."
Every year, more than 660 Victorians are diagnosed with head and neck cancer. Men are around three times more likely to develop the disease and while smoking and alcohol consumption are common causes, other risk factors can lead to head and neck cancer including the Human Papillomavirus (HPV).
The new online support group is open to anyone affected by mouth, nose and throat cancer across Australia. General online support groups are also available. Visit www.cancerconnections.com.au or email firstname.lastname@example.org for more information or to join a group today.
www.cancerconnections.com.au is an initiative of Cancer Council New South Wales.