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Head & Neck Cancer Support Charitable Trust

  • Where our money goes

      14 February 2024
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    The Head & Neck Cancer Support Aotearoa Charitable Trust is relatively new and was set up in 2020 just as the pandemic hit. It is also the only head and neck cancer support charity in New Zealand. Unlike breast, prostate, bowel and blood cancers, head and neck cancer awareness and funding goes pretty much under the radar. Because of this we are overlooked when it comes to financial support and our charity was set up to do our best to fill that gap and need. To date we have been operating on private donations from fellow patients together with their family and friends. Donors help us to offer practical support to some of our most vulnerable patients who might have little or no financial or emotional support.

    We started providing patient packs for all new patients attending Multi-Disciplinary Meetings (MDMs) at Auckland Hospital back in 2020 as a trial and then branched out to Dunedin and Waikato and have recently added Christchurch and Hutt Hospitals as well.

    Our goal is to continue extending our reach so that every patient in New Zealand attending an MDM will receive the pack and know right from the start, that as daunting and impossible that their treatment will seem, we are there to help with (and understand) the fear and anxiety that they are going to be experiencing.

    Toni Davis

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  • Patient Pack Fundraiser for World Head and Neck Cancer Day

      25 July 2022
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    This Wednesday, the 27th of July 2022, is World Head and Neck Cancer Day.

    Head and neck cancer patients remember the day when they were given their diagnosis. Just thinking about it now, five years later still affects me.

    So many people in the head and neck cancer comminity have wanted to make a difference and make sure that other people never go through what we have and also want to help educate people about this cancer so that they can at least pick it up early, or even better still, prevent it.

    For this reason, a charity was set up by some of the members in the HNCSA Facebook group in 2020. One of the aims is to try and find ways to help newly diagnosed people to let them know that they were not alone and there were people out there who had been through it and survived and thrived.

    It is not an easy road as we all know and there are times when it can be traumatic.

    One of the things that the funds from the charity covers is making and putting together patient packs to be given to new patients at their Multi-Disciplinary Meeting. This includes a tote bag for the enormous amounts of paper work and information we are given on this day, plus a notebook and pen to write down all the information we are given (or as much as our shocked brains can process), plus being able to write down questions that we think of as they arise. Each answer to a question seems to raise even more questions. We also include a brochure letting them know about our lovely group of people plus a lip balm as the hospital climate can be pretty hot and dry.

    Each pack costs approximately $10 and current numbers of head and neck patients attending Multi-Disciplinary meetings nationwide is sitting at around 1000 per year.

    We are asking if people would be prepared to support one new patient by donating $10 for World Head and Neck Cancer Day. If you want to support more new patients then that is absolutely fine as well! Feel free to give as much or as little as you are comfortable with as it all counts and makes a huge difference.

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  • You don't want to get head and neck cancer

      19 June 2022
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    Head and neck cancer is so horrible that it became my life’s work in 2014 to support fellow sufferers and their families and advocate for early detection and HPV vaccination.

    I’ve never wavered from this purpose because HNC keeps attacking me. You can’t put it behind you if you get recurrences or if your quality of life is impacted every single day.

    My story started mildly in 2007 when a lichen planus lesion turned malignant and I had a small tongue surgery. 2009 it was back and I had a hemiglossectomy with a forearm flap. I recovered about 80% of my speech and eating function. 2014 and it was back again at the worst possible time when I was supporting my husband through his long decline into dementia. This time I lost my front teeth, a lot of bottom teeth and lost lip function on the left because of a severed nerve. I never was one to wear lipstick but now I had hardly any visible lip left!

    Between 2014 and 2021 I had a top dental plate that allowed me to look halfway decent. However, I kept biting on the surgical site on my lower left gum causing a grim build-up of scar tissue which was biopsied many times. The solution was to make me a bottom plate anchored by implants which would also push my paralyed lip out and stop me biting it!

    I’d had radiotherapy in 2014 to stop the cancer coming back and this worked until 2021 when the cancer reappeared at the side of my throat. This time I had another major surgery and my second almost intolerable tracheostomy. The defect in my throat was filled by a huge flap of tissue taken from my thigh. The two previous ops had harvested the more useful tissue from my left and right forearm. Almost Frankensteinian.

    BUT the surgeons went ahead with the implant placement to aid the problems with my bottom gums and lip. They thought the new cancer was curable.

    Unfortunately my beautiful top plate no longer fits. The implants at this point have been osseointegrating for six months. I’ve had the abutments put on my implants but there is a hold up in getting an impression and plate made because I have slowed the healing by biting (can’t feel it) on the gum and it looks like I am going to go for a very long time with no more than 4 teeth and a vampirish appearance. Masks are good but hard to wear 100% of the time when eating, drinking and talking.

    To sum up, head and neck cancer has disabled and disfigured me and caused me to go through some thoroughly ghastly procedures. And there are people worse off than me! Many die, many are tube fed and don’t even have the joy of a cup of coffee or a cold glass of water.

    All serious head and neck cancer patients have their lives changed in some way and it is not a sexy cancer. We are the only head and neck cancer charity in Aotearoa/New Zealand and I hope my tale of woe will encourage people to donate to us to provide peer support and practical help to those who join me on this rocky pathway.

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  • We are starting to make a difference

      8 April 2021
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    Hi to all our lovely people.

    Many of you have generously donated to our Givealittle Page with the funds going to our new charity.

    Our charity has many goals with one of them being able to support our fellow head and neck cancer patients who are experiencing a high level of financial hardship. We all know that any cancer can cause financial strain but we somehow muddle along. We have been made aware though that there are a number of patients who genuinely can not afford the petrol to get to treatments and follow-up consultations, and they opt out of treatment as they can not afford to take the time off work.

    This is something that with help from our group and the wider community, we can change. As we have all experienced, our circumstances can change in an instant. I can not imagine what it would be like to have to forgo treatments as you couldn't afford to stop working as your family would not survive without your income.

    As a charity, we have also been raising awareness of support services such as our FB support group and want to continue to improve the experience for new patients. This has been able to be achieved through the funds people have so kindly donated and here is what we have done with some of these funds so far. We have been printing bags with our logo on them to give new patients at their MDM so they can put all their info into it. We all remember how many pieces of paper flashed before our eyes in our dazed conditions! Secondly is some lip balm sticks to put into these packs as well as to give to people on the wards. And last but not least are 10 brand new blenders for people who are going to need to blend their food but can not afford to purchase this vital piece of equipment to aid their recovery. Our clinical nurse specialist, speech and swallowing therapist, and dietician will collectively decide which of their patients has the most urgent need of them.

    Please feel free to share the Givealittle page with your friends and family so we can continue to expand our range of support, and we will keep you updated with how your donations are being used. Any ideas and suggestions that people have that could help our patients would be gratefully received and thank you all again.

    Thanks from us all

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  • So grateful to our donors

      7 March 2021

    Our Givealittle donors have enabled our charity to begin its assistance projects for head and neck cancer patients . Watch this space for details in the near future. There is nothing more satisfying than giving back when you have been through this cancer and are in a position to help others.

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  • Raising awareness and supporting patients and whanau

      28 January 2021
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    Many thanks to all the people who have donated so far. We have five charitable aims: to support people, raise awareness, provide some financial aid, run meetings and provide information. All of these aims have running costs and one thing we can do is to save lives by making people aware of the warning signs of head and neck cancer and of prevention measures that can be taken.

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  • Thank you to our supporters

      28 December 2020
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    It has been gratifying to receive donations from people in what has been a difficult year. We are very grateful. As we enter the new year we have organised a planning day to set up specific targets for funding, for example to provide blenders to head and neck cancer patients who can't eat solid food after treatment and are unable to afford an effective blender for soft food.

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  • Thank you

      25 November 2020
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    Many thanks for your donations. It has been fabulous to receive $1000 in such a short time.

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