From the Editor
Another dynamic meeting with three outside speakers and several newcomers. We’re bursting at the seams now and might need to book a bigger room sometime in the future. |
| Kevin, Amy, Kenny, Ken and Trevor listen to the presentations |
Again we were given valuable inside information. It’s gratifying to be able to summarise and share this material with a wider audience. If you can attend one of our meetings, you’ll get even more benefit. You’ll see the barriers between medical professionals and patients breaking down as we collaborate for the good of all. Sometimes patients are given individual advice that might not be appropriate to put in the newsletter although we try to cover the most important points.
We all know that cancer diagnosis and treatment can be a nightmare but spare a thought for advanced melanoma patients. Pharmac has just announced that it will make the funding of Keytruda a low priority. This is a breakthrough drug that can reduce tumours significantly in 30% of cases and bring about improvement in another 30%. It’s funded in Australia and the UK. In our country, oncologists have their hands tied. As my local pharmacist said, “Pharmac does a good job of saving the country money but New Zealanders get yesterday’s drugs.” Melanoma patients’ battle is our battle too.
Present: Earl, Alan, Marlene, Merle, David, Jill, Diana, Amy, Kevin, Kenny, Trevor, Noelle, Michael, Alison, Peter, Hamid, Kim, Graham, Mac, Jane, Losl, Paul, Jo, Ramona, Maureen, Esther
Dental plans for all
After open discussion within the support network meeting, everyone was in agreement that every Head and Necker who has had radiotherapy should have a booklet containing their dental plan. This plan should have input from the radiation oncologist who knows exactly which areas received the most radiation and from the Oral Health unit itself in order to optimise the long term oral health of each person. |
| Kim Gear in action |
Ideally all people who have had radiotherapy to the head and neck region will have the opportunity to access dental care at the hospital for a year after finishing treatment. You will then be encouraged to liaise with your own dentist who will be contacted by the Oral Health Unit for handover of care.
This, however, will not mean that you are unable to access hospital care if you experience problems. The aim would be to encourage six monthly consultations and a full mouth scale to optimise the number of good bacteria in the mouth and minimise the bad bacteria. In order to streamline treatment access, you can email oralmed@adhb.govt.nz if you have any questions or concerns.
Unfortunately, there is much to be learnt about osteoradionecrosis and the risk factors and management. However, Hyperbaric Oxygen (HBO) is still the preferred treatment to guard against osteoradionecrosis (ORN) for those who have teeth extracted in the radiation field. It is carried out on the North Shore and is under review.
Kim said there were over 700 species of bacteria in our mouths, some good and some bad. The University of Auckland is looking at commencing a formal trial to determine if the good bugs are optimised in the mouth through the use of a well-researched probiotic, and whether overall oral health improves.
Kim acknowledges that the prosthodontic section of Oral Health is under pressure but also announced that they had employed a new prosthodontist. Implants are not routinely provided but can be considered on a case by case basis.
Finally, she advised us to buy Neutrafluor products online or at the supermarket where they are $5 cheaper. Her department will try to make chewable/dissolvable fluoride tablets available to patients in the near future.
People mentioned Waterpiks and air flossers as new ways to clean between the teeth. I can recommend investing in a Waterpik if you find it very hard to clean your mouth. They are expensive at $250 at Smile Store online but my Waterpik is the best investment I’ve made. The hospital might be able to provide or advise where to buy syringes instead for people in this position.
Big thanks to Kim for the breakthroughs she is making for us.
Head and Neckers News
These are our goals. Below is a summary of decisions to be made in 2016
Head and Neckers have two big decisions for early 2016.
Diana Ayling, from the Planning Committee, explained how the Network will adopt a constitution and appoint officers at the first meeting of 2016. The constitution are the rules from which Head and Neckers will operate. The elected officers will include a Chair, Secretary, Treasurer and three more members. These officers elected annually will take over from the Planning Committee. The new committee will manage the Network in its first year.
The foundation of the constitution is the goals or purpose of Head and Neckers. (See above.) These will drive the strategy and operations of the Network. The draft constitution can be viewed here. Link to Draft Rules.
If you are willing to stand for office, or you wish to give some feedback on the Draft Rules, please contact the Planning Committee. dianaayling@outlook.com.
How to get hold of us
- Diana: dianaayling@outlook.com
- Maureen: mjansener@gmail.com
- Noelle:noellef@adhb.govt.nz
- Temporary website: http://headandnecknetwork.blogspot.co.nz/
- Our meeting place is Domain Lodge, 1 Boyle Crescent, Grafton, Auckland,.
- 09 308 0161
Restoring the natural voice: Hamid Sharifzadeh
Network members were invited to take part in a ground-breaking research project. Laryngectomees, those whose larynx was removed, are invited to give their time and voice for research.Dr Jacqui Allen and Hamid are working on a device for laryngectomees. The device turns a whisper into a normal speaking voice. The speaker uses a small speaker at their shoulder or hip and microphone device. The microphone applies an algorithm (mathematical calculation) to take a whisper to natural speech.
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| Hamid explains his research |
The aim of the research is to replace existing voice replacement technologies. Many laryngectomees use the electro larynx, which distorts the voice making it sound robotic.
Hamid explained that much of our identity is in our voice and speech patterns. Returning to natural voice and speech will enhance quality of life for laryngectomees.
Hamid Sharifzadeh is a computing lecturer at Unitec Institute of Technology. He is working with project director, Jacqui Allen, the medical director of Auckland Voice and Swallow.
If you are interested in volunteering for this project, contact Hamid for more information. hsharifzadeh@unitec.ac.nz
To find out more about Hamid’s project -
Article from the New Zealand Herald
Radio New Zealand National
Coping with cancer: Jo Moor
It can be difficult to talk to a family member about the rush of emotions felt at the time of diagnosis but a social worker like Jo is more distanced, making it easier for patients to speak to her.Jo is attached to ORL and assists with both emotional and practical issues. She helps patients adjust to their diagnosis, tell their stories, problem solve and cope with relationship issues.
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| Social worker, Jo Moor |
She deals with financial questions. If a partner is working, a patient is usually not eligible for a benefit. A lot of people are just over the income threshold. She can remind people that they can take certain steps to cope with the financial burden of being sick with cancer. Some examples are breaking into Kiwisaver, reducing your mortgage to interest only and taking a mortgage holiday.
Resources she can refer people to are the Cancer Society psychologists and Dove House. The latter has a male counsellor. Dove House also offers therapeutic treatments.
Older people who are frail already might need support at home. The Waitemata District Health Board and ADHB offer slightly different services.
Transport is a big problem for some. Jo can help make sure that appointments are made when the Volunteer Driver Service is operating between 9.30 and 2.30. There is a National Travel Assistance Fund for people who have 22 visits in two months.
Noelle said that people should talk to Jo first before going home.
Questions
* Is there home help after surgery? Help with personal care like showering is provided. Help with housework, however, is means tested. If you have a Community Services Card you might get it. The WDHB is harder than the ADHB in this respect.
* One patient said that the company Geneva will provide home care at $32 an hour. He recommends trauma insurance to guard against this sort of expense.
Thank you Jo, for your valuable information.
Exciting momentum in 2015: Noelle
Noelle is excited by the momentum we have built up this year. She said that John Chaplin who is convening next year’s international head and neck conference is keen to use our voice. It will be a great platform from which to acknowledge unmet needs.There are a lot of other centres with radiotherapy departments where our support could also be welcome. Examples are Waikato and Palmerston North. There are certainly unmet needs in the rural areas.
Susan Comber who started this group sends us a big hullo. Diana will contact her to find out more about our history.
Professor Randal Morton, whose vision this was in the first place, is keen to talk to us. We would like to invite him to be our patron. He wants to find out about what we expect from a person in such a role.
Patient Story: David Stevenson
My name is David Stevenson from Howick aged 79 years . Together with best friend and wife Jill I attempt religiously to attend every meeting of the Head and Neck Survivors Support group each month. |
| David, right, with wife, Jill |
Asked to submit a personal background and history, I trust the request came from a human motive as well as for any clinical or medical or statistical interest.
Anyway - my story. I came from a farming background when, aged eighteen, grown weary of the silence of paddocks except for bird song I strayed. Seven years in the strait-jacket ranks of a trading bank followed. Never lured by a gold watch after 40 years loyal service,
When aged 26, I met Jill. We soon married and moved to Dargaville where I was Town Clerk and where we spent idyllic and memorable years far from any maddening city crowds. Next a move to the New Hebrides (Vanuatu) where I worked for the British Government as Registrar of the British High Court. Next it was five years in Fiji with an Australian gold mining company. A last minute decision to not accept a position in Zambia on the copper belt and we returned home to New Zealand permanently in 1976 armed with four children.
In 2009 I became aware of a growth protruding from my neck. Cavalier about it initially until one son who was then a doctor, now a psychiatrist in Australia, in effect warned me to see a specialist.
It proved to be a secondary growth from a primary basaloid squamous cell carcinoma in the tonsils. Operation followed and 35 treatments of radiation.
That became a crossroads in my life. Until then I had felt, perhaps arrogantly, invincible and master of my own destiny. That biopsy cut me down to size proving to be a catalyst for massive changes in my life thereon with me but a witness..
While I would never make light of the personal and devastating aspect of cancer on others - yet I have my own views. There is a wonderful video on YouTube titled "Dry Bones from the Singing Detective" played by Michael Gambon developed from the late Dennis Potter`s play.
That video and its lampooning of an eccentric pompous specialist and his sycophantic trainee doctors doing the rounds of the hospital wards should be viewed in the right light. They were the fictional but humorous opposite and stark contrast of my real life encounters.
But funny. However, it was the position of that confused patient in the hospital bed with whom I resonated. Where he was a bystander to events around him. I too had experienced those surreal months when I felt myself spiralling into some psychological tail spin.
It is perhaps my fault that I always try to see humour, no matter how difficult, in that stark fact that we must choose how we face the realities of the human condition - being alive. I have found that there are no better alternatives to protect our psyche than laughter and plenty of it.
There must have been times when I was impossible to live with. But Jill`s patience and care during those months and the six years since should qualify her for some Florence Nightingale Nurse award.
The spin-off benefit from attending these monthly meetings with friends and special people similarly placed to myself has also been a significant factor in my rehabilitation towards normality. They prove right the truism about shared empathy. When we can truthfully say we have actually walked that same mile in one another's shoes.
My experience of the public health system throughout this period could not have been better. Did I deserve all that special care and cost as a mere taxpayer? I count myself so lucky that it was not until I reached 73 years of age that all this happened . An age when one`s horizon is not as distant as that of a younger person with the responsibilities of a young family saddled with mortgages. Without being melodramatic - My heart goes out to them.
I thank everybody for bringing me to the place I am at today.
Head and Neck Cancer in the News
“Adding sparkle to your life” by Nicky Pellegrino in NZ Listener
I can’t include this article December12-18, because it is behind a paywall but this link takes you there (http://www.listener.co.nz/lifestyle/health/adding-sparkle-to-your-life/) and after a few weeks you’ll have free access. Pellegrino writes about acidic drinks and includes fizzy water in this category. “Tap water has a healthy pH of 7, soda water a less ideal 5.1 and sparkling mineral water 3.9.” The article refers to research conducted at Birmingham University and echoes what Kim Gear has been telling us.
Depression Lowers Survival Rates in Head, Neck Cancer Patients – Study
A small study at MD Anderson, Texas, found that depressed OSCC (oropharyngeal squamous cell carcinoma) patients had a significantly lower survival rate than other patients. I have quoted some paragraphs from the end of the long article.“While the researchers stress caution in generalizing these results to other cancer types, the results do suggest an important role for depression in influencing OSCC patient outcome. Although the current study does not address potential psychotherapy interventions, screening for depression in this population may be appropriate, explained Shinn.
"Regardless of depression's impact on cancer outcome, all patients should seek help for prolonged and elevated levels of depression as effective medications and therapeutic options are available," said Shinn.
Looking ahead, the researchers would like not only to replicate the findings in a larger sample but also to determine the biological reason depression makes this cancer more lethal.
Possible mechanisms include poor lifestyle behaviors associated with depression, or a different biological response to chronic inflammation that affects cancer biology. These questions, however, will need to be answered in future research.”
http://www.healthnewsline.net/depression-lowers-survival-rates-in-head-neck-cancer-patients-study/2534068/
Conclusion
We’re thinking of holding the April meeting away from Domain Lodge, somewhere like Cornwall Park where there is plenty of parking. How do people feel about that? Kevin mentioned it to give you plenty of warning.
This newsletter was put together with MUCH input from Diana, who took the photos as well and has forced me to use Google Docs so that we can collaborate. It is still a work in progress. The aim is to have an email newsletter which we can also print out as an A5 booklet. Such a booklet will look better in a hospital waiting room than a sheaf of A4 papers. Thanks to Diana and to Kevin for the logos.
See you on 3 March 2016
Maureen
© Head and Neck Cancer Survivors’ Support Network /8
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