News

head and neck cancer (64)

How we cope

It’s time to remember”The Swallows” book, Australian Edition, which came out last year. It had two of our stories and an account of our group. Soon a 2019 book will be published in the same vein.

Below are some conclusions drawn by patients as they look back on their head and neck cancer pathway.

“I have good and bad days and some days I…

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World Head and Neck Cancer Day reminder

Now is time to have another look at the newsletter Olwen and I made last year to mark World Head and Neck Cancer Day on 27 July. 

It was our first WHNCD and we held a stall at North Shore Hospital as well as linking with private providers throughout the city and with people all over the world. 

This year there will be more events throughout New Zealand and for Aucklanders a stall on Level 5 of Auckland City Hospital on 25 July. We will make that whole week a dedicated…

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One of the side effects of radiotherapy and chemotherapy is mucositis -` the painful inflammation and ulceration of the mucous membranes' - particularly in the mouth and digestive system which makes swallowing a painful challenge. Lead story this week suggests help could be on the way.

Second story…

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Thinking abut Facebook: Friendly Friday

Diana and I presented a talk to a Regional ORL Meeting in Hamilton yesterday. Our role among the medical experts was to explain how we set up an online support group for their patients. Diana talked about our network in general and I concentrated on Facebook which has been a surprising (to me) player in our success as a support organisation.

While Diana spoke fluently with half a dozen slides, I had to write a speech and read from it trying to eyeball the audience…

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Network News - Monday 5 February 2018

Kia ora whanau,

 

 

6 February is a very special day for New Zealanders. All over the world we are celebrating the signing of the Treaty of Waitangi (te tiriti O Waitangi) in the Bay of Islands on 6 February 1840. It is from across the bay, from the treaty grounds I write this Network News. There is much excitment in the air as we…

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Get help to lift depression: Weds Weekly

A weekly collation of stories from one of our members

That old line about laughter being the best medicine may have some validity according to the lead story.   And, more practically,  it suggests perfectly understandable depression after a diagnosis  should not lead to missing treatment appointments.

The second story is a very up video suggesting advances in robotic surgery means there’s less to be depressed about anyway.

Meanwhile:
#…

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More on oral care products and Oral 7

There's some confusion in our head and neck cancer universe about the best regimen for oral care.

In many parts of the world, fluoride trays are used but not so much in New Zealand. Only one of our members has the trays, given to her by the Otago Dental School.

In most parts of NZ, we are advised to use Colgate Neutrafluor 5000 toothpaste, the toothpaste with the most fluoride. I believe "neutral" fluoride is a type that doesn't stain the teeth. We're not advised about…

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The number of after effects of cancer treatment are many and often an on-going challenge. Lymphoedema - that swollen, floppy jowls effect - and loss of hearing are two common examples and while not life threatening both detract from quality of life. The two stories this week suggest there may be, at least partial, solutions.

Meanwhile:

  • Good thing…
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Funding for Keytruda in 2018?

Keytruda, the immunotherapy drug, is expected to be registered in New Zealand this year for head and neck cancer, says a spokesperson from the drug company Merck.

Once it is registered Merck will make a submission to Pharmac for funding.

At the moment, it can be provided in private clinics but like all of these unfunded drugs it is very expensive. Givealittle accounts are often formed so that patients can access a…

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Network News 8 January 2018

Kia ora whanau,

Happy New Year

We wish you the very best for 2018. I hope all is well with you and your loved ones. The holiday break is over and the Network is ready for the challenges of the year ahead. We have committed to working with the Auckland/Northland District Health Board to implement the recommendations of the 2017…

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Open Letter to Val Ireland

Readers, Val Ireland made an impassioned plea for help following a series of poor outcomes from head and neck cancer treatment/reconstruction in Auckland.

You can read Val’s story here. http://nzh.tw/11966945

I have decided to openly respond to Val to encourage open discussion about the current service, and the steps we, at the Network are taking now, and in the future to improve the performance of the…

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A recent NZ Herald story about a young woman with recurrent nasopharyngeal cancer aroused our interest in the immunotherapy drugs Keytruda and Opdivo, approved in NZ but not funded for HNC. 

Eve McGauley was only 15 when she contracted the disease. She went through the awful treatments, was in remission and then the cancer struck again. Her family decided…

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Post treatment problems? Weds Weekly

Wednesday Weekly is a collection of recent stories about head and neck cancer from Google Alert, compiled and introduced by one of our members. 

Couple of stories this week about life after diagnosis and treatment – even if successful it’s not all roses.

Lead story suggests there’s a good chance of mental decline two years after…

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I’m in favour of patient attendance at the multidisciplinary meeting. The first time I attended one in October 2009, I felt quite humbled by the experience and got a secret thrill out of being the centre of attention. Wow, so many medical people looking at me and wanting to make me better.

Last time, though, in 2014, it was a more daunting experience. I had a recurrence and the meeting room seemed to have been turned into a theatre with me alone on the stage. I still think it was of…

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I am very impressed by the recent Make Sense Campaign run by the European Head and Neck Cancer society (EHNS). 

Here is an infographic they put out in September for the European Head and Neck Cancer Week.

(I used Docufreezer to convert the graphics below from PDF form so that you could see them without having to click.)…

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Network News 2 October 2017

Advocacy for people affected by head and neck cancer - "Nothing About Us Without Us!

The Latin phrase is,  Nihil de nobis, sine nobis. The idea; that no policy should be decided by any representative, without the full and direct participation of those affected by that policy. This principle extends to national, local and sector policy making. It gives the opportunity for full participation from service users, consumers, and…

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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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