Head & Neck Cancer Support Network Trust Community News May 2026

Written By Head and Neck Cancer Support Network
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7 June Cancer Survivors’ Day

Finding Words That Reflect Our Reality

On 7 June, we acknowledge Cancer Survivors Day — a day intended to celebrate strength, resilience, and life beyond cancer. For many people affected by head and neck cancer, however, the word survivor can feel both meaningful and uncomfortable at the same time.

Some people embrace the word proudly. It reflects what they have endured and overcome. Others feel it does not fully capture the ongoing realities of living with and beyond head and neck cancer.

Head and neck cancer does not simply end when treatment finishes. Many people continue to live with the long-term effects of surgery, radiation, chemotherapy, or immunotherapy.

Difficulties with eating, speaking, swallowing, fatigue, appearance changes, dry mouth, anxiety, financial stress, and social isolation can continue for years. Some people live with an ongoing disease or uncertainty. Others are grieving changes to their identity, work, relationships, or independence.

For many in our community, there is no clear line between “during cancer” and “after cancer.”

That is why language matters.

The word survivor can unintentionally suggest that the experience is complete, or that there is a single “right” way to move forward. It can also create pressure to appear positive, grateful, or inspirational when many people are simply trying to get through each day.

Around the world, health organisations and support communities are increasingly using broader phrases such as:

  • Living with and beyond cancer

  • People affected by cancer

  • Cancer experience

    Cancer community

  • People navigating cancer

  • Thriving after cancer — for those who connect with a more hopeful framing

  • No evidence of disease (NED) — a term some people prefer medically

  • Cancer survivorship journey — recognising that the experience is ongoing and different for everyone

No single phrase will fit every person or every experience. What matters most is recognising that people affected by head and neck cancer deserve to define their own story in their own words.

At the Head and Neck Cancer Support Network Trust, we recognise the diversity of experiences within our community. Some people are newly diagnosed. Some are in treatment. Some are years beyond treatment. Some are living with recurrence or ongoing health challenges. Some are carers or whānau supporting loved ones through unimaginable change.

All belong here.

On Cancer Survivors Day, we honour not only survival, but courage, adaptation, connection, and hope. We acknowledge the complexity of living with and beyond head and neck cancer, and we celebrate every person finding their way through it — one day at a time.

If you or someone you love has been affected by head and neck cancer, please know that you are not alone. Our community continues to walk alongside one another through diagnosis, treatment, recovery, uncertainty, and the search for a new normal.

  • 6 June [ONLINE] Support Groups: What They Are, What They Aren’t, and How to Join

    7 June Cancer Survivors Day

    14 August Cancer Nurses Day

6 June 20264 pm [ONLINE] Support Groups: What They Are, What They Aren’t, and How to Join

New Online Session: Understanding Support Groups – and How to Join

The Head and Neck Cancer Support Network Trust is hosting a new online learning session to help people better understand support groups and how they can support them after a diagnosis of head and neck cancer.

Many people tell us they are unsure what support groups are like, or whether they are “for them.” This session is designed to answer those questions clearly and so people can make an informed choice about joining in.

IMPORTANT

We have changed the date of this event as it clashed with the King’s Birthday Weekend events. You can find all the information here. LINK

Register now

If you’ve ever wondered what support groups are like, or how to take the first step, we warmly invite you to join us.

👉 Register now to receive the Zoom link and session details. LINK

We look forward to seeing you there.

Another way to join a Support Group

Want to do something different than Facebook?

We know Facebook isn’t for everyone — and sometimes you just want something simpler, more private, and easier to keep up with.

That’s why we’ve created a WhatsApp group for our community 💚

It’s a space for real-time connection, quick check-ins, and support when you need it most — without the noise of social media. Whether you prefer reading quietly or joining the conversation, you’re very welcome.

If you’ve been looking for a more personal way to stay connected, this might be the right fit for you.

https://www.headandneck.org.nz/connect-with-us

The Trust’s Annual Report and AGM

May 2026

Thank you to everyone who continues to support the work of the Head and Neck Cancer Support Network Trust.

At our 2026 Annual General Meeting, we reflected on a year of connection, advocacy, peer support, awareness raising, and community growth. We are proud of what our small volunteer-led organisation continues to achieve alongside people affected by head and neck cancer across Aotearoa New Zealand.

Over the past year, we have:
• Continued supporting patients and whānau through our online community and peer support initiatives
• Expanded awareness and advocacy work
• Developed new regional support opportunities
• Shared patient voices to help improve cancer services and care
• Welcomed many new members into our community through our support packs and outreach

We know the challenges faced by people affected by head and neck cancer can be life-changing and long-lasting. Our commitment remains to ensure nobody has to face that journey alone.

You can now view our AGM reports and learn more about our work here:
Head and Neck Cancer Support Network Trust AGM Reports

Thank you for being part of our community.

A word from our Chair

Kia ora koutou,

Many of you in our community know that head and neck cancer is rarely a straightforward journey. It can involve unexpected turns, ongoing challenges, and difficult decisions long after initial treatment has finished.

I wanted to share personally that I am about to commence further treatment and will soon begin radiotherapy for the second time.

Like many people facing treatment, I have the normal anxieties and concerns that come with stepping back into the cancer system. Even when you have walked this path before, there is still uncertainty, worry, and the emotional weight of knowing what treatment can involve.

At the same time, this experience feels different for me now. I am much more knowledgeable than I was the first time around. I understand the system better, I know the importance of asking questions, accepting support, and taking things one step at a time. Experience does not remove fear entirely, but it does bring perspective.

One of the things I have learned through both my own experience and through leading the Head and Neck Cancer Support Network Trust is just how important community is. The understanding that comes from people who have “been there” cannot be overstated. Connection matters.

I also know that many members of our community are quietly facing similar moments — recurrence, additional treatment, ongoing side effects, scans, appointments, or simply the uncertainty that can accompany living with and beyond head and neck cancer.

Please know that you are not alone.

As I move through this next phase of treatment, I hope to keep our community updated with my progress. I want to share honestly about the experience, not only because transparency matters, but because I know how valuable it can be to hear from someone walking a similar road.

Thank you to everyone who continues to support one another so generously within this community. The kindness, encouragement, and understanding shown here every day make a real difference.

With warm regards,

Diana Ayling
Chair
Head and Neck Cancer Support Network Trust




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