Head & Neck Cancer Support Network Trust Community News

Written By Head and Neck Cancer Support Network

Head and Neck Cancer Support Trust News

This is our first newsletter for the year and we welcome those who joined our community over the break. We assure you we are a community that cares and understands your challenges in treatment, care and support. We were busy over the break advocating for you and we will continue in that work this year.
We have written to the Minister of Health to establish clarity and consistency on the provision of Therabites for those affected by trismus following their treatment. We continue to raise the issues of many of our community to access dental and rehabilitative support to enable them to fully participate in their communities. As part of that work we created a briefing for the incoming Minister of Health Hon. Simeon Brown. Link

Rare Disorders New Zealand Celebrates 25 Years
Many head and neck cancers are rare. In Aotearoa New Zealand a disorder is considered rare when it affects fewer than or equal to 1 in 2,000 people. An ultra-rare disorder affects fewer than or equal to 1 in 50,000 persons.
Rare Disorders New Zealand is the respected voice of rare disorders in Aotearoa New Zealand. They are the national peak body organisation, supporting the 300,000 New Zealanders with a rare disorder and the people who care for them. They offer a platform to link people to information and rare disorder groups specific to their disorder, and help people navigate the health system.

Like us they proudly advocate for public policy and services that work for those with rare disorders – using a strong and unified voice to collaborate with the Government, clinicians, researchers, and industry experts, to promote diagnosis, treatment, services, and research. We work closely with Rare Disorders New Zealand. We encourage you to get involved with their events in March 2025. Details can be found in our Upcoming Events below. There is something for everyone - temporary tattoos, a beer challenge and more. https://raredisorders.org.nz/get-involved/rare-disorders-month/

The Head and Neck Cancer Foundation Trek
The Foundation invites you to join them on an unforgettable trek along the Great Wall of China, where history, culture, and breathtaking landscapes come together. You will explore unrestored sections of the Wall, visit iconic landmarks like the Forbidden City, and enjoy scenic hikes through Jinshanling and Mutianyu —while raising vital funds for the Head and Neck Cancer Foundation Aotearoa..
Your participation will support groundbreaking research, providing resources for prevention and care, and advocating for strategies that improve patient outcomes. By taking part, you’ll help fund innovative research, promote awareness, and make a meaningful difference in the fight against head and neck cancers. https://inspiredadventures.com.au/event/hncfa-2025-gwc/

Donate Now
We had a good response to our Giving Tuesday fundraising campaign in December 2024. If you feel our work is of value to you please visit our website to make a tax-deductible donation and help us keep our programs running. https://www.headandneck.org.nz/donations or for those of you who prefer to donate by card https://buy.stripe.com/14kaGG70DeyFeJ29AA

UPCOMING EVENTS https://www.headandneck.org.nz/events

⛯ New Explorers Joining Our Community!

A warm welcome to new members, Louise Fox,, Michael Dance, Mary Wenham, Joshua Retterand Gene Andrew who recently joined our community Facebook page, "The Explorers".

Your presence enriches our network, bringing diverse experiences and perspectives. We encourage everyone to engage, share stories, and offer support as we navigate this journey together. We suggest you invite your partners and whāna to join us. They will learn more about your situation and be better able to support you.

We have a welcome pack for you click the link here to order. Link to Welcome Pack

🗞️ News: International Head and Neck Cancer

We know that you and your whānau and friends, who share your journey, want to have access to the latest reliable information on head and neck cancer treatment advances. We have created a catalogue of new developments for you to view. We will keep adding to these resources as time goes on. Please feel free to share; there is much advancement in treatments and hope.https://www.headandneck.org.nz/advancements

We have four new articles from the international head and neck community.

🌟Patient Story: A Mouth That Wouldn’t Open: Living with Trismus After Radiation

When Mark (named changed for privacy reasons) was diagnosed with head and neck cancer, he braced himself for the gruelling treatments ahead. Radiation therapy, he was told, would be his best chance at survival. What he wasn’t prepared for, however, was the lasting impact it would have on his ability to do something as simple as opening his mouth.

In the months following his treatment, Mark developed trismus, a condition that severely limited his jaw movement. At first, he dismissed it as temporary stiffness, but as time passed, the problem worsened. Eating became a challenge. Talking required extra effort. Even yawning felt impossible. His dentist struggled to examine his teeth, and any attempt at dental work left them both frustrated.

Desperate for a solution, Mark’s speech therapist recommended a Therabite, a device specifically designed to help patients like him regain jaw mobility. There was just one problem: the Therabite was expensive. For someone already burdened with medical bills, it wasn’t an option.

Instead, he was given a makeshift alternative—wooden ice block sticks bound together with a rubber band. He was instructed to insert the stack into his mouth and gradually add more sticks to increase the stretch. It was a crude method, but it was all he had.

Mark did his best to stay committed. Every morning, he performed the exercises in the shower, hoping the steam would help ease the tension. The first stretch of the day was always the worst—his jaw felt locked in place, and the pressure of the sticks was painful. The wood felt rough against his gums, and no matter how carefully he positioned them, they never sat quite right. Unlike the Therabite, which was designed for controlled, even stretching, the sticks felt unreliable and ineffective.

Some days, he would drop the stack mid-exercise, watching in frustration as they scattered across the floor. Other days, the sticks would press awkwardly against his already fragile teeth, causing sharp, shooting pain. It was an exhausting, frustrating process, and despite his best efforts, progress was painfully slow.

Mark couldn’t help but feel cheated. Others who had used the Therabite spoke of noticeable improvements, gaining valuable millimeters in their mouth opening. One woman in his support group had gone from 25mm to 35mm, making everyday activities much easier. Another patient called it “worth every cent.” Mark knew he needed a proper device, but without funding, it was out of reach.

Three years later, Mark’s jaw remained stubbornly tight, and his dental health had deteriorated. He often wondered how different things might have been if he’d had access to the right tool from the start.

For people like Mark, a Therabite isn’t a luxury—it’s a necessity. The makeshift solution of wooden sticks is inadequate and frustrating. If healthcare systems truly want to support head and neck cancer patients, funding essential recovery tools like Therabite should be a priority. No one should have to struggle with a mouth that won’t open simply because they can’t afford the right help.

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🌟 From the Chair

Kia ora whānau,

We know that progress can sometimes feel slow, and right now, much of our work with Te Aho O Te Kahu is stalled. We have briefed the incoming Minister of Health and will continue advocating for the needs of our head and neck cancer community. While this is frustrating, it certainly hasn’t dampened our commitment!

Through it all, our focus remains the same—supporting you. We are here to connect patients and whānau with others who truly understand, to stand alongside those in treatment, to share trusted resources, and to advocate fiercely for the best possible care.

Challenges come and go, but our community remains strong. Together, we keep moving forward.

Ngā mihi nui,
Diana Ayling
Head and Neck Cancer Support Network Trust

Donate Now: https://www.headandneck.org.nz/donations

Thank you for your continued support.

🫶🏽 Community Resources

If you are new to head and neck cancer, or back in treatment, we have a support pack for you. You can find all the details here. https://www.headandneck.org.nz/patient-planner
If you would like some brochures to introduce the Head and Neck Cancer Support Network Trust to your family and friends, please feel free to contact us headandnecknetwork@gmail.com

🫶🏽 Contact us

We welcome contact from our head and neck cancer community, including whānau and friends. Please feel welcome at any of these contact points. https://www.headandneck.org.nz/contact-us

Head and Neck Cancer Support Network
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Tackling the Impact of Cancer on Health, the Economy and Society