NEWS

Network News Monday 17 September 2018

 

Your Head and Neck Cancer Support Network is working hard for you

HNCSN recently completed a governance transition. We would like to once again thank those who made the effort to get the Network off the ground. Now it is time to move into a new phase and to future proof the Network, to have the Network as the driving force for all those who are affected by HNC, cancer patients, whanau, friends, and caregivers.
 
We remain committed to fulfilling our mission of connecting, supporting, and advocating for people affected by head and neck cancer.
 
Meet the team –
Diana Ayling, Chair – A person of integrity, compassion, knowledge, understanding and personal experience of the difficulties involved with HNC, she brings a wealth of experience in governance and advocacy, she is exceptional at networking and is passionate about improving the health outcomes for our members.
 
Heather Anderson – Secretary/treasurer – a person with years of experience in service to the community, both working with youth, governance and forward planning. Her experience of HNC, though not as difficult as most, does not lessen her ability to empathise with and try to understand the difficulties of others.  Caring nature, is supportive, listens to all and acknowledges those around her for the value they add.  Stands up for the right for all to be heard and explores new ideas with enthusiasm.  Heather can see the “big picture” and is focused on future proofing the Network so it is current and relevant to those who need it. 
 
Brian Sheppard, Programs / Support –

Brian Sheppard is a cancer survivor, having experienced cancer in the tongue in 2005.  This was successfully treated with surgery, reconstruction and radiotherapy.

Since 2011, he has been a consumer representative for the Central Cancer Network and a Cancer Connect volunteer for the Cancer Society.  On the Central Cancer Network, Brian has served on a number of working groups, including those for the Government’s Faster Cancer Treatment initiative and is currently a member of the CCN Governance Board and Cancer Consumers New Zealand (CCNZ).

 
The team have been working on the governance rules and will be looking for volunteers to help develop the path forward. Keep a watch for developments.
 

Please contact us at headandnecknetwork@gmail.com with any comments or suggestions. 

 

Get Involved and Support Our Efforts

YOU have the power to help raise awareness of HNC and advocate for improved services. Interested in contributing your time or supporting HNCSN? We offer a variety of ways to get involved:

  • Organize a fundraising event in your community;
  • Become a regional supporter, and lead support in your area.
  • Donate. Your unrestricted gift is key to supporting our mission;
  • Become a Corporate Partner of events and/or patient-focused or clinician education programs;
  • Partner with us and host an education evening or screening in your community (only available to clinicians).

For more information on the Head and Neck Cancer Support Network, click here.

WELCOME NEW MEMBERS

Natalie Screen, Northland., Karin selman, Auckland., Angela Dillon-Jarvis, Hawkes Bay., Nicky MacDonald, Titirangi., G M Rigg, Wanganui., Rowan Jones, Auckland. 

 

SAVE THE DATE

Auckland Support Group meeting 

Monday, October 1
11:30am – 12:30pm
Domain Lodge
1 Boyle Cres, Grafton, Auckland 1023, New Zealand
 
Purchasing Tristar Products
We are no longer purchasing products on patients' behalf. We recommend you use the following websites:
 
https://www.toothshop.co.nz/ for Neutrafluor $16.95 and Spry gum at $7.00 a tub if you buy four.
https://www.smilestore.co.nz/ for Neutrafluor $22.50.
 

Your Patient Experience Can Help Advance Research and Treatments

Did you know that your own experience as a cancer patient, and especially your opinions about treatments and side effects, can help shape the future of the patient experience for other head and neck cancer patients? 

We continue to have our Open Survey available to collect your thoughts, and experiences about your HNC treatment. If you feel you need to get something of your chest you can do so here. https://www.surveymonkey.com/r/PatientNZ
 
HNC Patient Book - Order your FREE copy now! 

The 2018 Second Edition of the Australian Head and Neck Cancer Patient & Carers Book was launched in July 2018 at the ANZHNCS Conference in Melbourne. The book is a patient led initiative coordinated by former patient and Beyond Five Ambassador, Julie McCrossin, and fellow former patient Marty Doyle, coordinator of the Head and Neck Cancer Patient Support Group in Queensland.

The book shares many personal head and neck cancer stories from patients, family and carers from all over Australia and New Zealand. In addition, the book highlights some of the people who work in the head and neck multidisciplinary team who talk about important aspects of care at specific points in the head and neck cancer journey.
To order FREE hard copies of the 2018 Australian issue email: juliemccrossin@bigpond.com or text 0408 699 166 (text messages only please) or to download an e-copy visit: http://ow.ly/W40I50ib3LS Back to top. 
 

Eating Well with Head and Neck Cancer

The Cancer Support Community (CSC) has created a new Frankly Speaking About Cancer® (FSAC) booklet called Eating Well with Head and Neck Cancer, which includes tips on how to cope with common eating problems and provides easy-to-make recipes. This booklet can be downloaded or ordered, and used as a tool to help stay healthy before, during, and after treatment.

CSC presented a webinar of the same name in June, featuring Amanda Hollinger, Head and Neck Cancer Alliance; Jessica Iannotta MS, RD, CSO, CDN, Savor Health; and Dave & Thea Roff, Head and Neck Cancer Survivor and Caregiver. The webinar can be accessed online

Frankly Speaking About Cancer® is the Cancer Support Community’s renowned resource for cancer education. FSAC provides innovative health education through print and digital publicationseLearning coursesonline materialswebinars, in-person workshops, and a weekly radio show. To learn more about FSAC and the educational resources they provide, visit their webpage.

 

Melanoma, lymphoedema and "extra size" beyond the basics

 This is a great seminar to help you understand lymphoedema. Get comfortable, make a cuppa and get ready to learn.

http://www.webcasts.com.au/mnz220818/ 57 mins

 Support Starts Here

Living with head and neck cancer isn’t easy, but having access to information and resources will help guide you through your journey. Create your own cancer game plan today to get healthy recipes, helpful tips on things like managing your health, coping strategies, partnering with caregivers and more. It is a US plan, and there is plenty in it of value for New Zealanders. Click here to get started...

 
  
 
 
Laryngectomee Guide
 

The Laryngectomee Guidewritten by HNCA board member and throat cancer survivor, Dr. Itzhak Brook, is a very helpful resource for laryngectomees, their caregivers, and medical professionals. It contains information about the side effects of radiation and chemotherapy; methods of speaking; airway, stoma, and voice prosthesis care; eating and swallowing; medical, dental and psychological concerns; respiration; anesthesia; and travelling.

The Guide is available now in nine languages (English, Italian, Bulgarian, Turkish, Arabic, Chinese, Russian, Portuguese, and Persian (Farsi)).

 

Helpline

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm. 

 
 Thank You to our Corporate and Community Partners
 
 
 
 
 
 
 
 

 

 

 

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

E-mail me when people leave their comments –

Diana Ayling

You need to be a member of Head & Neck Cancer Support Network to add comments!

Join Head & Neck Cancer Support Network

Happy with your treatment experience?

Please share your thoughts on your recent treatment experience. This can be at any stage of your cancer journey, pre treatment, treatment, post treatment, and survivorship. 

You can take our survey as many times as you like, and we encourage you to have your family/whanau and carers share their thoughts as well. Click the link to share your thoughts.

https://www.surveymonkey.com/r/PatientNZ

 

 

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