Head & Neck Cancer Support Network Trust Community News
We hope this newsletter finds you in a relaxed mode over this break. Today we share some updates from the Head and Neck Cancer Support Network Trust that highlight the issues faced by our community and upcoming events.
Urgent Government Action for Head and Neck Cancer Patients in Aotearoa New Zealand
Recently, a LinkedIn post from the Head and Neck Cancer Support Network (https://www.linkedin.com/feed/update/urn:li:activity:7166977120261328896/) attracted significant attention from clinical professionals and government advisors, as it shed light on the critical needs of individuals living with Rare Disorders such as Head and Neck Cancer in New Zealand. Over the last month Rare Disorders New Zealand have drawn attention to the needs of those of us living with rare disorders, including Head and Neck Cancer in Aotearoa New Zealand. Both organisations all the coalition government to consider how governmental support can alleviate the challenges faced by these communities.
In the realm of healthcare, particularly concerning head and neck cancer patients, the post underscored several pressing areas that necessitate attention and policy action.
Diagnosis and Awareness: One of the foremost challenges lies in timely and accurate diagnosis. The complexity of head and neck cancers often leads to delays, compounded by a lack of awareness among both healthcare professionals and the general public. Government intervention here can bolster education and training initiatives, coupled with awareness campaigns targeting all stakeholders.
Access to Specialised Care: Accessibility to specialised care remains uneven across regions, posing a significant barrier for patients. The call for establishing and supporting specialised centre(s) across the country echoes the need for comprehensive care, ensuring no patient is left without essential treatment options due to geographical constraints.
Affordability of Treatment: The financial burden associated with treatment is another stark reality for patients and their families. Subsidising treatment costs and establishing support programs can mitigate this burden, ensuring access to essential care remains equitable for all citizens.
Patient Advocacy and Support: Beyond medical care, patients grapple with psychological and social challenges. Government support for patient advocacy organisations and policies ensuring patient representation in decision-making processes are vital steps toward addressing these multifaceted needs.
Research and Development: Insufficient research plagues the field, limiting both understanding and treatment options. Government funding and incentives for research, particularly in the realm of rare diseases, are paramount to advancing care for these individuals.
Genetic Counselling and Testing: For certain cancers, genetic components necessitate specialised services. Affordable access to genetic counselling and testing, underpinned by robust regulations, is essential for informed decision-making and tailored treatment approaches.
Inclusive Policies: Inclusivity lies at the heart of effective policy-making, especially concerning Māori and Pasifika communities. Policies must be sensitive to cultural diversity and address the unique challenges faced by different segments of the population.
A strong collaboration between the government, healthcare professionals, advocacy groups, and affected individuals is indispensable in crafting and implementing policies that truly meet the needs of head and neck cancer patients in Aotearoa New Zealand. We look to Te Aho O Te Kahu(the Cancer Agency) to lead in this work.
⛯ New Explorers Joining Our Community!
A warm welcome to two new members who have 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.
March was Aotearoa New Zealand Rare Disorders Month. Rare Disorders Month focused on raising awareness and advocating for individuals living with rare diseases, which may not receive as much attention or funding as more common health conditions.
Many rare disorders, including those affecting the head and neck region, often face delays in diagnosis and limited treatment options due to lack of awareness among healthcare providers. By raising awareness about rare disorders during Rare Disorders Month, there are opportunities to shed light on the challenges faced by individuals with head and neck cancer in obtaining timely diagnosis and accessing appropriate treatments.
By raising awareness, advocating for research and funding, and providing support services, advocacy groups can work together to improve outcomes and quality of life for those living with rare disorders and head and neck cancer in New Zealand. Thanks Rare Disorders New Zealand for leading the way! To listen to the Rare Disorders podcast click here. https://www.rnz.co.nz/programmes/the-detail/story/2018928289/rare-disorders-aren-t-unusual-enough-to-ignore
HPV and Head and Neck Cancer
4 March was HPV awareness day. In this post we shed light on what HPV is, its connection to head and neck cancer, and how patients and their families can navigate this aspect of their diagnosis.
Patient Resources
Head and Neck Cancer Australia's FREE resources are there to support patients and families on their cancer journey. This resources on questions to ask is helpful for those beginning their journey and those of us further along. https://www.headandneckcancer.org.au/head-and-neck-cancer-definition/questions-to-ask/
🗞️ 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 this resources as time goes on. Please feel free to share, as there is much advancement in treatments and hope.
You can read about the relationship between healthcare and dentistry here. https://www.headandneck.org.nz/hnc-news/illuminating-health-the-lighthouse-of-oral-health-shines-its-spotlight-on-whole-body-wellness
You can read about a new break through treatment for head and neck cancer. https://www.headandneck.org.nz/hnc-news/empowering-hope-breakthrough-treatment-shows-promise-in-head-and-neck-cancer
💬 Member Chat
This month’s member chat is from one our members who recently lost their partner to head and neck cancer. She reflects on what she can take away from the experience of supporting a loved one and a family through the head and neck cancer journey.
🌟 Lessons Learned: A Partner's Reflection on Supporting a Loved One Through Head and Neck Cancer
As I sit down to reflect on the journey my partner and I have travelled through the harrowing landscape of head and neck cancer, I am filled with a mixture of emotions – gratitude for the progress we made, sorrow for the hardships endured, and a profound sense of awe for the resilience displayed by my beloved throughout it all. This journey has taught me invaluable lessons that have reshaped my perspective on life, love, and the human spirit.
The Diagnosis: A Shock to the System
The day we received the diagnosis is etched into my memory with painful clarity. It felt as though the ground had been ripped from beneath our feet, leaving us suspended in a state of disbelief and fear. Head and neck cancer – the words themselves carried a weight that seemed almost unbearable. In those initial moments, I grappled with a torrent of emotions, ranging from anger and denial to profound sadness.
Lesson 1: Strength in Vulnerability
Amidst the chaos of doctors' appointments, treatment plans, and endless uncertainty, I witnessed a strength within my husband that I never knew existed. But it wasn't the kind of strength defined by stoicism or unwavering resolve; rather, it was a strength found in vulnerability. My partner allowed himself to be seen – in moments of pain, fear, and despair – and in doing so, he opened the door for me to offer my unwavering support. Together, we learned that true strength lies not in the absence of weakness, but in the courage to confront it head-on.
Lesson 2: The Power of Presence
In the midst of medical procedures and invasive treatments, I often found myself grappling with a sense of helplessness. What could I possibly do to ease my loved ones suffering? It was during these moments that I discovered the profound power of presence. Simply being there – holding a hand, offering a listening ear, or sharing a quiet moment of connection – became my most potent form of support. In the face of adversity, the simple act of showing up spoke volumes more than any words ever could.
Lesson 3: Finding Joy in the Ordinary
Throughout the ups and downs of treatment, we learned to find joy in the seemingly mundane moments of everyday life. Whether it was sharing a meal together, basking in the warmth of the sun on a lazy afternoon, or simply relishing in the comfort of each other's company, we discovered that happiness need not be elusive, even in the darkest of times. In the midst of chaos, we learned to treasure the beauty of the ordinary. We found humour in even the darkest of times.
Lesson 4: Embracing Gratitude
Amidst the trials and tribulations of cancer treatment, it can be all too easy to succumb to despair and bitterness. Yet, amidst the darkness, we found flickers of light in the form of gratitude. Gratitude for the unwavering support of friends and family, for the compassionate care of healthcare professionals, and for the precious gift of each new day. In cultivating an attitude of gratitude, we discovered that even in the face of adversity, there is always something to be thankful for.
For my husband the journey is over. Our journey was fraught with challenges, but it has also been imbued with moments of profound beauty and grace. I have emerged stronger, wiser, and more deeply connected to friends and family than ever before. And for that, I am eternally grateful.
🫶🏽 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
🫶🏽 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
🌟 Our Wish for You
As we embark on these initiatives and celebrate our growing community, we extend our warmest wishes to every one of you. Your strength, resilience, and support continue to inspire us, and together, we are making a difference in the lives of those affected by head and neck cancer. Please feel free to make a donation to support our work at any time. https://www.headandneck.org.nz/donations
Let's continue to support each other, learn together, and ensure that no one walks alone in this journey. Together, we are a source of strength, understanding, and hope for those affected by head and neck cancer. Thank you for being an essential part of our supportive community!
Head and Neck Cancer Support Network Trust
