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Carer, caregiver, support person … when someone you love has head and neck cancer, it affects you too.

Research has shown that looking after the carer improves the outcome for the patient. Some patients say it is harder to be the onlooker than to be the one suffering the disease.

Interestingly, the famous Swallows book is for…

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What matters to you?

 

I've heard mention of the "What matters to you" question in health care but have never been able to figure out what it meant. It sounded hopeful, a way of establishing the patient's concerns and even values. Sounds like an awkward question to ask, though, and what do you do with the information once it is gathered? A bit of digging and…

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One of the first thoughts that ran through my head when I got cancer was that it was my fault. I’d been too stressed for too long and now my body had failed me. I’d let my immune system get too weak.

I now think that is wrong, wrong, wrong. Cancer is caused by random cell mutations that take place over decades. There are risk factors, yes, but there’s also a lot of plain bad luck. The immune system can’t protect you from most cancers because cancer evades the normal defences of the…

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Assume people will crash at some point and provide support. That’s what I think health care workers should do for newly diagnosed head and neck cancer patients. For a lot of the patients who end up at the multidisciplinary meeting, their lives will be changed forever. At the very least they are in for tough treatment.

A recent discussion on our Facebook…

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I’m a very sceptical person which often infuriates those who look at health care more holistically. If something sounds too good to be true, it probably is, my mind tells me.

Always felt dubious about the manuka honey craze which has shifted the price of a jar of this delicious, earthy honey from a few dollars to over $20 a jar - and $120 for the pure product.…

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 How many members do we have. 300? That’s our Facebook group membership. We have about 150 members on our website, many of whom overlap with the former. From 0 to about 300 in under two years is mindblowing to us but even better is the way we are linked to overseas groups.

The purpose of this blog is to inform you about the other groups so that you can avail yourselves of them too if we can’t answer your questions.…

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Pet scans: what, when, how and why

 

What they are
I know a PET stands for positron emission tomography. A PET scan is given post treatment to some patients but in my 11 years of experiencing this disease on and off, those three letters, PET, have never entered my realm of treatment and testing. I could tell you about CT scans, punch biopsies and fine needle aspiration under…

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The Cancer Society reviews its resources every few years. Here is the booklet on living with a dry mouth. It is geared at anybody with dry mouth not just post-radiotherapy people.  On pages 18 and 19 it gives a list of products out there to help us. What do you think? Have you tried these products? (An American member has used Gelclair powder and gel and considers it superb…

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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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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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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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How we started a support network

How did @HeadNeckNZ, also known as HNCSSN begin? Seems like a simple question to answer but it’s not. What occurred was a step by step process, a meeting of minds, a cluster of events.

Here are some key dates

2015 September. ACH support group member suggests we brand ourselves, become a charity and have an online presence.

2015 October.…

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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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