head and neck cancer (49)

How we cope

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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 have really struggled with my emotions. But then on other days I am filled with happiness and laughter.”

“All I wished for during all these arduous treatments

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Network News - Monday 5 February 2018

Kia ora whanau,

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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 prepare for a day of celebrations, song, dance, and plenty of food! So Kiwis, get out there, and enjoy the day.

 

 

 

Our Network - update

2147783?profile=RESIZE_320x320Over the last few

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Network News 8 January 2018

Kia ora whanau,

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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 review. We will continue our work with our Facebook group providing online support for those affected by head and neck cancer. We are planning an even better World H

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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 service.

An Open Letter to Val Ireland

Dear Val,

Thank you, for courageously telling your sto

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Auckland/Northland Head and Neck Service Review

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A review of the provision of Head and Neck Cancer (HNC) services in the Northern region (Auckland/Northland) was commissioned by the Cancer Board and the Service Review Group, with the outputs to be presented to the Regional Executives Forum. The terms of reference for the review are included in Appendix 1 of the report but by way of summary the review objectives were to: 

 Review current service delivery provision arrangements for Head and Neck Cancer, identifying the strengths and issues w

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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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The Make Sense campaign is one of a series of head and neck cancer awareness movements that have taken place in the world this year. They are all using social media to adv

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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 participants. It is a powerful concept for those often marginalised f

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Network News 18 September, 2017

Responding to patients' post treatment concerns

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As I recover from my own surgery, I read the Facebook discussions of our members. One topic that continues to arise, and where patients, carers, and family express dissatisfaction, is the period of time where patients are post treatment. Concerns expressed cover issues of psychological support, dental care and rehabilitation, surveillance of ongoing health and well being, access to services, and clinicians, and the role

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Cosette's Story

Cosette Calder, who lives in Christchurch, had a lot to live for when she was diagnosed with head and neck cancer. Hard as her treatment was, she knew her cancer was curable and she had a five-year-old son to look after. Cosette’s early symptoms are interesting too. They show us how throat cancer can manifest itself.  

Here is her story.

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I was diagnosed with throat cancer a week after my 40th birthday in May of 2015. I started to feel unwell in mid-March, two m

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Network News - 10 July 2017

21st-century.png?versionId=SaK87TZSUO9Puc4tkIvbfNg7k00etz14&width=350Who said this about the New Zealand health system? "We have a world-class health system but third class treatment, and we have the capacity to make a big difference. Not enough people with the greatest need are getting access to our services because we're stuck in a 19th-century view, but it's the 21st century."

Not me, and I do agree. It was Dr Lance O'Sullivan, New Zealander of the year, Far North GP and public health champion. (Evans, 2017)

He went on to say, "I don't think we should be hav

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A small turnout on Thursday 6 July. The America's Cup parade was on and the weather was atrocious. Nevertheless we had a fruitful meeting, getting to know a new member of our network, Sharmayne and welcoming Marlene Evans back into our midst. 

We started with a video about WHNCD, a day of observance that started in 2014. It featured Jatin P. Shah who is the head of the International Federation of Head and Neck Oncological Societies as well as Michael Douglas and Catherine Zeta-Jones. Well worth

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2147238?profile=RESIZE_320x320How to raise awareness of our support network on World Head and Neck Cancer Day? How to make new head and neck cancer patients aware that we exist and they are not alone? Diana and Olwen came up with a plan: provide care packs for patients undergoing treatment. 

We had recently rebranded with our tui symbol as a logo and the international head and neck cancer burgundy and ivory colours. We had a trifold brochure, business cards and pens but needed something softer to add to the pack. Seeing the

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It often surprises just how many people get a head and neck cancer. I recently discovered a singer/song writer favourite, John Prine, had a cancer back in the 90s and Val Kilmer recently confirmed that he actually did have a cancer this year (after first denying it.) Both survived and are apparently going strong - something the stories below suggest are becoming more of the norm. However, as always, a little skepticism never hurts.

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Meanwhile consider;
The best example of the difference between

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Network News - 3 July 2017

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Since our last Network News one of our members, Udaya Kovvuru, passed away on 21st June 2017. We met Udaya, and his wife Shoba last year after his surgery. We have followed his journey through our Facebook group. Udaya, was fortunate to have wonderful support from Shoba. She is a wonderfully generous and wise person, sharing their story, and supporting many others. Udaya, had the benefit of hospice care over the last weeks of his life, and we thank everyone for their care and support. Shoba, o

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Path to Diagnosis, Part 1

With WHNCD less than a month away, I am replacing Friendly Friday with stories on aspects of head and neck cancer care. Olwen Williams collected and collated these stories.

Head and  neck cancers have a variety of symptoms and are often not recognised for some time.  Here’s how a number of people were diagnosed. These symptoms include a cough, a sore on the tongue, a swelling on the nose, swallowing problems, blocked sinuses. Other members, not described here, have mentioned unexplained toothach

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The disfiguring effects of treatment are well known to many patients who have been through it - scarring, missing teeth, muscle wastage and more. The story below however does suggest some help with one of the common effects - lymphedema - could be on the way.

Meanwhile consider:
The Prince from Cinderella must have had a serious foot fetish to not remember any other discernible characteristic about her or maybe the only difference between passion and addiction is if the thing you're doing is goo

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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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