NEWS

Network News - 28 January 2019

Kia ora tatou,

this week our Network News celebrates a new year.  As always, our website is the place to go for all your news, resources, and support information. Be sure to check it out, and if you not yet a member, now is a good time! http://headandneck.org.nz/

Network News

Auckland Support Group Meetings 2019

Here at the Network we seek to respond to head and neckers needs. One thing that has become apparent in Auckland is the need for a support group to meet outside work hours. This year we will offer meetings in the day time and evening. These will alternate through the months of the year commencing 4 February 2019 at Domain Lodge, Grafton at 11m. The March meeting will be on 18 March, 2019 at Domain Lodge, Grafton at 6pm. We look forward to meeting many more of our members and helping to provide connection with others and support through treatment and post treatment.

You can view our schedule here.

Let’s Talk

We realise that many of you are unable to attend Support Group meetings. We are going to trial an online Support Group. The first one will be held on 11 March at 10 am. More details to follow. We are using Zoom technology to enable to online support to happen, and you can read about it here. https://zoom.us/  We will send out an invitation to you soon. All you need to participate is a computer with a  camera and microphone. Alternatively, you can use your phone.

Let's Chat!

In response to our mission to connect and support people affected by head and neck ccancer we are providing online chat for Network members.  This creates real-time, fun and easy communication possibilities. If you are logged in to the our website http://headandneck.org.nz  You can chat to other members in other parts of New Zealand, who share the same cancer experience as yourself. We are hopeful that this Chat feature will encourage more peer to peer support. We will run online chat for one hour every week from Monday, 11 am to 12pm. If you have a burning question, then get online and ask it. Our first live chat will begin 18 February 2019.

The Chat feature allows you to participate in a live chatroom and private chats. The Chat provides you with additional options:

  • Customizable notifications
  • Message counter
  • Ability to create and manage your groups
  • Ability to send files

You can find out more here.....

New Members

We welcome the following new members. 

Pauline Elizabeth Wood, Auckland

Chris Flaherty, Hastings. Chris has blogged about his cancer journey with great humour and insight. He has called it "Bulletproof", A baby-boomer's story about getting, and getting rid of, cancer. You can read it here. www.chrisflaherty.blogspot.com

Deborah Anne van Heerden, Auckland

Kay Taylor, Hamilton

Peter Smith, Auckland

New Support Resources for You

Support Group Resources

We have created a new tab on our website for Support Group Resources. As more and more head and neck cancer support groups spring up around Aotearoa New Zealand there is a need to provide support. These excellent resources are from Australia, and add great value to existing support groups. If you want to make sure your group is on track and giving good value take a look. http://headandneck.org.nz/support-group-resources/a-guide-to-running-a-peer-facilitated-support-group

End of Life Resources

We have added some additional resources for carers, family/whanau who at the close of a head and neck cancer journey. 

http://headandneck.org.nz/end-of-days

Head and Neck Cancer National News

Top Kiwi jazz musician Nathan Haines one year on from shock cancer diagnosis: 'I've learnt an incredible amount about my priorities'

A year ago chart-topping Kiwi jazz musician Nathan Haines was weeks into a months-long fight against throat cancer, a battle that would at times rob him of his voice, his energy and his immediate plans for the future.

But it's a new year and while it's not a completely new Haines - he remains the ambitious young man who left New Zealand in his teens and put out the first of 10 solo albums at age 22 - there's been some changes.

There's also some big plans for the 46-year-old, who is cancer free but is still dealing with the after effects of the illness — on Wednesday he had surgery to "bulk up" a vocal chord damaged after his December 2017 diagnosis.

Read more here...

https://www.nzherald.co.nz/entertainment/news/article.cfm?c_id=1501119&objectid=12187829

Healthy Heart Food Guide

The old food pyramid has been replaced by the healthy heart visual food guide.

This new healthy eating guide shows heart-healthy amounts of foods to eat during your day. Put the Healthy Heart on your fridge, use it as a guide at the supermarket, or use it for help with the meals you make during your day. Read more here… http://headandneck.org.nz/food/healthy-heart-visual-food-guide

From Neela Bhana Waitemata DHB

Kia ora koutou, my name is Neela Bhana, I am from the National Institute of Health Innovation at the University of Auckland, who you may be aware are working with Waitemata District Health Board to develop a chatbot to support head and neck cancer patients and their whanau engage with the health sector.

In order to develop the chatbot, we are in the process of developing a library of common questions people have with regards to their condition, treatment and post-op care. As part of our research, we would like to create an online focus group of sorts, where members of your group are able to join and share their experiences, and questions with us to help us build this library.

https://www.facebook.com/groups/314193695974991/

The focus group is private, a copy of the participant information sheet is available on the group page. It would be great to discuss this project with you further, as the voices of your group members will be extremely valuable to developing the chat. I am currently only working 2 days per weeks, so email would be best method of contact: n.bhana@auckland.ac.nz, or if needed (09) 923 3461.

International News

The Institute for Cancer Research has some positive news for head and neck cancer patients. Read here for the summary https://www.icr.ac.uk/news-archive/immunotherapy-keeps-some-patients-with-advanced-head-and-neck-cancer-alive-for-more-than-three-years

App brings back the voice of 34-year-old cancer patient

Craig Robinson was diagnosed with extensive tongue and throat cancer earlier this year. As a result, he had to have his voice box removed at the age of 34. But thanks to smartphone technology, the resident of Bedworth, Warwickshire, is still able to communicate using his own voice.

Macmillan Cancer Support staff at University Hospitals Coventry and Warwickshire Trust helped him access technology in the US that allowed him to record 1,400 sentences before his operation. 

There is a great video with this article. Read more….

Jay: My tears at beating cancer

FORMER Bucks Fizz star Jay Aston By Gillian Crawley revealed she cried “tears of joy” when doctors told her she was cancer-free. In June, Jay, 57, who shot to fame in 1981 when the band won the Eurovision Song Contest with Making Your Mind Up, announced she had been diagnosed with mouth cancer. Read more...

Fierce Health Care

This group sends out regular newsletter on a range of topics related to healthcare. The latest newsletter has an interesting article for clinicians.

Want to make patients better partners in their care? Physicians group offers 4 guiding principles

The principles outlined by the committee are:

  1. Treat patients and their families with respect and dignity.
  2. Include patients and families as active partners in care planning.
  3. Patients and families should play a role in reforming and improving delivery systems.
  4. Bring the patient voice into medical training and education.

You can read more here.  

What’s new with Patient Empowerment

The healthcare industry is changing. Every day it becomes more vital to get patients to take active roles in their care. Patient empowerment is a critical component to operating profitably in this new world. This framework provides a model to help organizations make informed decisions about the future of our businesses and our industry. You can read more about the recently developed Patient Empowerment Framework here.

Save The Date!

 

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

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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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