Head and neck cancer increasing in New Zealand. A new support and Advocacy group is now working to help people and their families. The Head and Neck Cancer Survivor’s Support Network is an incorporated society.
The Network is establishing a presence nationwide through a newsletter, blog and monthly meetings. It has a Facebook group to connect people around New Zealand.
The Network spokesperson Maureen Jansen says head and neck cancer survivors in the Auckland area formed the Network. It was these people who recognised the increasing need for connection, support and advocacy.
"More and more people are diagnosed, especially young men,’’ says Maureen. "In the past heavy smoking and drinking were cited as the main triggers for head and neck cancer. Now it’s the HPV virus that’s the main cause.’’
The HPV virus is the one that causes cervical cancer in women. The Network is keen to see the existing free vaccination regime for girls extended to boys as well.
Last year (2015) men and women over 500 in New Zealand were diagnosed with head and neck cancer. This year that number will rise.
"Even if initial radiation and chemotherapy treatment is successful there are likely to be many ongoing effects", says Maureen.
"Radiotherapy can wreak havoc on survivors' teeth and salivary glands. Advocating for subsidised dental care is of the Network's top priorities."
As Maureen says, head and neck cancer "Can rip your life apart. Eating is such a social ability that losing the ability to eat is devastating. It takes a lot of courage to go back in to society with a scarred face and missing teeth. Losing speech is also isolating.’’
Maureen says the Auckland patients who form the basis of the network are typical survivors. Many have speech and eating challenges. The memories of acute radiation side effects are still raw. There a lot of scars. Some members have significant disfigurements from surgery. Some members have undergone laryngectomies. They now speak through an artificial voicebox or electro-larynx.
The Network's motto is `strength through sharing’. The mission is to `connect, support and advocate’.
"We have a databank of medical information, gleaned over the years from our meetings. We can make this available to patients and their families. Most importantly we can provide someone for patients or family to talk to,’’ she says.
