Head & Neck Cancer Support Network Trust Community News March 2025

Written By Head and Neck Cancer Support Network

🌟Patient Story: The Wait for a Crucial Scan

When I was first diagnosed with head and neck cancer, I quickly learned that time is everything. The sooner a test is done, the sooner a diagnosis is confirmed, and the sooner treatment can begin. But what happens when the system doesn't work the way it should? When a simple routine scan turns into weeks of uncertainty and anxiety?

I recently faced this reality firsthand. A routine scan was scheduled for me at Greenlane Clinical Centre, something that should have been straightforward. But then, I received the news that the machine was broken. "We’ll reschedule soon," they assured me. I waited a week. Then another. And another. Over two weeks passed with no scan, no updates, and no clear answers.

Each day that went by, my worry grew. What if my condition was changing? What if something new was developing? For those of us who have faced cancer, the fear of the unknown can be overwhelming. Every delay feels like a gamble with our health.

I tried calling to get more information, but the responses were vague. "We’re doing our best to get the machine fixed," I was told. "We’re working through a backlog of patients." I understand that healthcare services are under immense pressure, but for patients, the waiting is excruciating.

After weeks of waiting, I was finally given an appointment. The relief was immense, but the experience left me shaken. It shouldn’t take this long for a crucial scan. We shouldn’t have to chase answers when our health is on the line.

For many head and neck cancer patients, timely scans are critical. They can mean the difference between catching something early or facing more invasive treatments later. When delays like this happen, patients aren’t just left waiting—they are left worrying, wondering, and feeling forgotten by the system meant to care for them.

Our healthcare system needs to do better. Whether it's improving access to alternative facilities, ensuring faster repairs, or simply keeping patients informed, something must change. Because behind every delayed scan is a patient, waiting, hoping, and fearing the worst.

If you've faced similar delays, speak up. Our voices matter, and together, we can push for a healthcare system that truly prioritises timely care for all.

Why We Are the Explorers

If you’ve been part of our online community for a while, you may have wondered why our closed Facebook group is called The Explorers. The name is no accident—it reflects our shared commitment to curiosity, discovery, and learning in the journey through head and neck cancer.

A Culture of Curiosity

In The Explorers, we foster a culture of curiosity. This means we value open discussions, new ideas, and the latest advancements in treatment and care. Head and neck cancer is a complex and evolving field, and by staying informed, we empower ourselves and each other to navigate the journey with confidence.

We welcome respectful conversations about innovative treatments, new clinical trials, and research developments. Every member brings a unique perspective, and we believe that we all grow stronger by sharing knowledge.

Committed to Quality Research and Advancements

As a Trust, we are dedicated to supporting quality research projects that improve the lives of those affected by head and neck cancer. We actively follow developments in treatment and care, and we advocate for evidence-based advancements.

When new treatments emerge, it’s natural to have questions. In The Explorers, we encourage thoughtful discussion—what works, what doesn’t, and what shows promise for the future. We also recognise the importance of reliable sources and are committed to ensuring that the information shared within our community is accurate and trustworthy.

See our https://www.headandneck.org.nz/advancements

Join the Exploration

Whether you’re a patient, survivor, caregiver, or supporter, you are an important part of this community. We encourage you to ask questions, share experiences, and stay curious. Together, as Explorers, we continue to seek out the best possible care and support for everyone affected by head and neck cancer.

If you haven’t yet joined The Explorers Facebook group, we welcome you to become part of this supportive and forward-thinking space. Let’s keep exploring—because knowledge is power, and together, we can make a difference. https://www.facebook.com/groups/headnecknz

🌟 From the Chair

Kia ora whānau,

As we move through 2025, we find ourselves in a period of waiting. Due to ongoing health system changes and resets, there has been little progress on new policies for head and neck cancer surgery and the optimal cancer care pathway. While this is disappointing, we understand that these things take time, and we remain hopeful that the important work for our community will resume once the system finds its feet.

In the meantime, we focus on strengthening the Head and Neck Cancer Support Network Trust. We are actively seeking funding to support our charitable work, ensuring we can continue to provide resources, advocacy, and connection for those affected by head and neck cancer. Additionally, we are looking at ways to grow our Board with committed individuals who can help guide us forward.

Your support and engagement remain vital, and we appreciate your patience as we navigate this period of transition. If you have ideas, want to get involved, or can help in any way, please reach out—we would love to hear from you.

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

Head and Neck Cancer Support Network
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