An information packed newsletter from Geoffrey Reed in Plymouth UK. Lots of information for laryngectomees.
After talking about the Health and Disability Advocacy Service at the Auckland Meeting on 5 March, we discussed acts of human kindness that we had experienced while being treated for head and neck cancer.
Here they are, listed below:
- It was heaven to have my hair washed after…
This is the third instalment of Anne's story. This time it is about her radiotherapy treatment which was particularly hard for her because of the previous surgery. The aggressive nature of the cancer made extensive radiation necessary.
Next step on my journey is radiation and I have been told it is imperative that I have it within a 3 month time frame and have been warned me that it will be brutal. It has to be very intense due to the fact my tumour was aggressive and…
On Monday we published the first part of Anne Howe's amazing story covering the difficult path to diagnosis. Today we have the story of her two surgeries, one very long, one smaller to reconstruct her nostil.
Professor Tan, from the Gillies Research Institute, had asked permission for the remainder of my tumour after the necessary part had been sent to pathology. I had no need for my tumour and…
The Nationwide Health and Disability Advocacy Service is a free service that operates independently from all health and disability service providers, government agencies and HDC. If you want to know more about your rights when using health or disability services, get questions answered, or make a complaint, we can help.
Freephone: 0800 555 050
Even after successful treatment a head and neck cancer survivor is still likely to face a number of challenges – and not everyone can cope with them. Lead story this week is about post treatment suicides and why depression alone is not a warning sign.
The second story is another…
Kia ora whanau,
We know that some people do not "do" Facebook, and are unlikely to sign up to our website. These folk need to connect and receive support, so we are taking a new approach. We are introducing What's App, the Smartphone app, that connects people without the need for the…
Anne Howe is a much loved member of our Facebook group who lives in Dannevirke and gets her treatment in Palmerston North and at Hutt Hospital. Because her SCC tumour first looked like an abcess (pictured below) on her nose, Anne had a struggle to get a diagnosis. She hopes her story might help others. …
We are aware that many of our folk are having problems with their service providers. We do not have access to the Patient Feedback data collected by the District Health Boards. So we are going to collect our own information so that we know how well the Head and Neck Cancer service is doing…
We are bringing a new channel of communication to the Head and Neck Cancer Survivors' Support Network. We know there are some folk who do not use Facebook,https://www.facebook.com/groups/HNCSupport.Aotearoa/ and they are unlikely to become members of…
Big thanks to Waitemata District Health Board (my local) for encouraging our group and making this video about our network. Special thanks to Dr David Grayson, Jarrard O'Brien, a health anthropologist, and Baz the friendly filmmaker.
If you go to the bottom of the front story, you will…
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.…
A major challenge in fighting cancer is the number of types of the disease which all respond differently.
Lead story this week looks at progress being made in improving immunotherapy treatment – it has been working with melanoma and breast cancer but can, hopefully, apply to head and neck…
I've always enjoyed reading the stories of other patients. There's the basic human interest - it's pretty dramatic having treatment for a nasty cancer like this - and there are the aha moments when you realise the writer has felt exactly what you felt. You feel connected; less alone. The stories are informative -…
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…
Of the big three cancer treatments – chemotherapy, radiation and surgery – none are particularly much fun for the patient. Research suggesting one of the three – radiation – can in some cases be reduced is therefore good news all round.
The second story this week is another look at research aimed at halting growth of cancer tumours.
# Since cats are known to eat people when they die, is their cute kneading actually them tenderizing us?
Our next meeting is at 11.30, 5th March.
Where the place? Domain Lodge, diagonally opposite the hosptial.
We will have time for news, introductions, questions and discussion. Diana will be back and will update you on exciting developments in our network.
Our speaker, who will address us from 12 to approximately 12.50 am, is one of the advocates from the North Shore Health & Disablity Advocacy Serivice.
Two years ago, before we had our website,…
Kia ora whanau,
Global Cancer Report
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…
In light of the NZ government’s recent thumbs down to medical marijuana, lead story today takes a look at the issue from a medical point of view. Expect nothing definitive though.
That’s followed by a piece of promising research and a further (if still needed) plea for HPV vaccination.
# Nations can't come together to fight hunger, end oppression, or create lasting peace....but for bobsledding, no problem.
# A boomerang is just a socially anxious…
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