John Chaloner Antoni Krasnodebski Bruce Hodges Peter Ewan Peter Tierney Brian Gardner
NSW emblem

BECOME A MEMBER TODAY!!! click here
Our next meeting is: 10:45am Wednesday February 17th, 2016
Note that no City meetings are scheduled for April, July and October this year.   Click for details.

First Floor, SMSA (Sydney Mechanics' School of Arts)   280 Pitt Street, SYDNEY  (click for map)
For the Meeting Schedule including other locations around NSW click here
CORRESPONDENCE :link to Officers & Secretary/Treasurer Email: lansw@stilltalking.org   admin@stilltalking.org

Welcome To StillTalking.org

After Laryngectomy surgery a person is confronted with a whole new way of life, no matter how much everything may seem to remain the same. Laryngectomees may become antisocial from experiencing difficulty in talking in group situations, in a noisy environment or where they feel they are breaking the flow of conversations through their difficulty with speaking. A Laryngectomee support group is the ideal place to practice socialising. Other Laryngectomees and their family and friends will be able to relate to any problems and provide a comfortable environment which encourages communication.

In addition, a Laryngectomee support group is the best place for a new Laryngectomee to receive information, exchange ideas and discuss problems with people who have been through the whole Laryngectomy experience. Hospital professionals give general advice and information immediately before and after a Laryngectomy to a person in a fairly traumatic situation and a lot can go in one ear and out the other. Also, ongoing problems may not become apparent until months after the operation and any associated radiotherapy or chemotherapy.

The Laryngectomee support group, possibly more importantly, is the place where spouses can meet other spouses of Laryngectomees to share frustrations and personal experiences that might seem like difficulties that only they, in all the world, are confronted with.

Our Association attempts to reach as many patients who undergo a Laryngectomy in New South Wales as possible, in order to let them know that support groups exist, their aims, purpose, when and where they meet along with contact numbers. Then, obviously, it is up to the new laryngectomee to make the effort to attend their most accessible support group to find out what benefits it can offer them and hopefully they can give their input in helping others who become Laryngectomees after them.

DON'T FORGET ONE OF YOUR BEST FRIENDS WILL BE YOUR SPEECH PATHOLOGIST!

Ten monthly newsletters are distributed by mail and/or email to members each year.
Back issues of LANSW newsletters 'Still Talking' are available here on the website as a resource for laryngectomees, carers and support groups and can be browsed or searched using keywords or phases for many helpful and informative articles. Our archives also contain a number of informative articles. Items no longer current are here.
Back Issues of "The New Voice", Newsletter of the Laryngectomee Association of Victoria Inc. have also been made available.


News: (click links to read)               modified
No City meeting is scheduled for July, the President and Secretary/Treasurer have opted to attend: The Conference room within the JRK Wellness Centre has been booked 12pm to 2pm July 18th for the LANSW meeting at Liverpool Hospital. The Centre is located on level 1 of the Cancer Therapy Centre. Tea and coffee are available within the Centre. Click for an reference map.   Onsite parking is available via Campbell street at a cost. Gregory Webb is "Looking forward to welcoming you the JRK Wellness Centre." Contact details here.    Show
For those interested in the potential application of modern technologies to aid laryngectomee communication, watch this space. The Association has recently (June/July 18) been contacted by groups from both MIT and a Singapore startup who are looking for feedback from larys re the application of subvocalisation and Brain-Computer Interface (BCI) to assist communication. A webpage is under development which will include the email conversations. This is in addition to the Bionic Voice project previously noted. You are invited to send comments/contributions to admin@stilltalking.org
July 2018 Newsletter Magnetic 'metal seed' that destroys brain tumours in ten minutes invented by British scientists. “The Telegraph”; July Meeting to be at Liverpool Hospital
June 2018 Newsletter July Meeting to be at Liverpool Hospital
May 2018 Newsletter Funding Announcement; Prevention of Oral Thrush By Itzhak Brook MD
May 2018 Newsletter Funding Announcement; Prevention of Oral Thrush By Itzhak Brook MD
Some quotes from the May 2018 The New Voicethe Newsletter of the Laryngectomee Association of Victoria:

"Lorrance then explained to our newcomers that the first part of our meeting was run like an open forum in order to encourage people to talk about what they may be going through following their surgery and recovery, their problems and concerns their successes that worked for them. Any topics that are subsequently arise will generally be a guide for content of future newsletters where relevant."

"Lorrance commented that there was a lot of wisdom mixed up with the chatter in this part of the meeting. He emphasized to our new members not to be frightened to ask questions. You may not always get an answer straight away, and it may not be a professional medical text book response either. In fact laryngectomees through their own personal experiences have sometimes found quite simple ways of fixing problems using plain commonsense. Lorrance said we are not mind readers unless you speak up and tell us about an issue you may be facing we can’t offer you help, so again, please don’t be frighten to speak up."

" annual subs from those who pay them (30% to 40% actually do pay their subs),"

"In regard to the New Laryngectomee Bag Presentation Pack Project initiated by Lorrance, we have put 50 odd bags in circulation via the hospital system in the past two and half years. We are trying to make these bags available to all new laryngectomees to help them. "

Some observations:    Show

No City meeting was held in April, the President chaired the Westmead Meeting
Apr 2018 Newsletter April Westmead meeting; Overcoming Depression; AGM Election of Officiers.
The president and treasurer would like all members to offer ideas for a new banner for the Stilltalking.org website.
RobertManne
IMAGE: ROI HUBERMAN

Robert Manne with Geraldine Doogue on ABC/RN Saturday Extra Saturday 24th March

La Trobe's Emeritus professor of politics, Robert Manne had his larynx removed after throat cancer. But that's not keeping him from contributing to the national discourse. After having his larynx removed, Professor of politics, Robert Manne believed his contribution in public discussions about the nation and international affairs, was over. He was contented though with continuing his writing. Robert is the author of several books, with the latest On Borrowed Time, and is a regular contributor to The Monthly and The Guardian and has written three Quarterly Essays. But, Robert is back in the public domain talking to Geraldine Doogue about finding his voice again and the current Australian political situation.
Link to ABC/RN or simply play below.

Mar 2018 Newsletter A Lary Guide To Better Sex by Les Byrnes; More Effective Than Chemotherapy?;
An article by Louis Trammell of the IAL on "Why Attending Support Group Meetings Might Be More Beneficial than than gleaning your relevant information from the internet" was contributed by Antoni Krasnodebski; Nomination Form for March 21 AGM Election of Officiers.
MikeGeorge A ‘Lary’ was on Melbourne 3AW Neil Mitchell Radio program (Mon 26 Feb) to discuss the lack of funding for essential equipment for patients following a laryngectomy in Victoria. Throat cancer survivor Mike George tells Neil about patients' silent suffering.
Link to 3AW playlist or simply play below.
Additionally, Mike George and Darron O'Connor appeared on WIN News Gippsland in mid March 'Tragedy & Triumph': Throat cancer survivors have shared their daily battle of living without a larynx. The men have banded together after overcoming life-saving surgery, hoping their story will give other survivors a new voice.
View on FaceBook or play controls here
Anyone interested in the history of the Association may like to browse archival Newsletters. Years 2006, 2005, 2004, 2003, 2002, 2001, 2000-07, 2000-01, 1999, 1998-1997, 1996, 1995, 1994, 1993, 1992, have been uploaded to yearly pdf's and available via the previous links but, as yet, content is not indexed on the Newsletter webpage. It is interesting to see how some themes have changed while others are just as topical.
June 1999 and earlier editions of LARO-LINK, the newsletter of the now defunct Queensland Association are interspersed with NSW's.
Jan 2018 Newsletter Xmas Lunch Photos; Nomination Form for March 21 AGM Election of Officiers; Laryngectomy And The Sense Of Smell. How It Works And How It Can Be Restored.
larySection

Dr Itzhak Brook has announced the publication of "The Laryngectomee Guide Expanded Edition”. The 254 pages Expanded Guide is an updated and expanded version of the earlier 2013 edition. It contains twice more information on all topics, and also describes newer devices and products available for laryngectomees. The Expanded Edition of the Guide can assist laryngectomees and their medical providers by providing information about side effects of radiation and chemotherapy; methods of speaking; airway, stoma, and voice prosthesis care; eating and swallowing; medical, dental and psychological concerns; respiration; anesthesia; and travel. It is available in paperback and eBook versions.
The eBook is available for Free reading and download at https://goo.gl/gecLgq
A paperback version can be obtained at: https://www.amazon.com/dp/1976852390
A Kindle version can be obtained at: https://www.amazon.com/dp/B078X283B8

I’ve always wondered: why is the flu virus so much worse than the common cold virus? "The Conversation" September 21, 2017 11.05am AEST
Since my laryngectomy in 2010, I haven't had a cold but I succumbed to the recent flu epidemic. An article in "The Conversation" contains an explanation. As a lary, I no longer breathe air through the upper respiratory tract so the viruses responsible for colds don't get easy access to the tissues lining the upper respiratory tract
Typically, rhinovirus binds to a receptor on the surface of cells in the nose and sinuses.(ie upper respiratory tract)
The flu virus can infect both the upper and lower respiratory tract, which in part explains its ability to cause severe disease.

Speech Aids Coordinator’s Report – April 2016: The Australian agent for the Nu Vois speech aid    Show
This year’s Christmas Party for the Laryngectomee Association of NSW
is to be was held on Saturday 25 November 2017   12 noon till 3pm
at Ryde Eastwood Leagues Club.
There is NO charge for Laryngectomees, their partner/carer.
There is NO charge for Speech Pathologists/Health Professionals
The cost for visitors is $35 and is subsidised by the Association
Use the form in the Newsletter below to register (or email the Treasurer/Secretary raymond.chappelow@bigpond.com).
Nov 2017 Newsletter Annual General Meeting March 21, 2018 Nomination Form; Christmas Party Saturday 25 November 2017; Do Viruses Cause Throat Cancer?
Oct 2017 Newsletter ... ; Head Cancer On The Rise
Sep 2017 Newsletter ... ;
Guest Speakers from EnableNSW at our February 2015 meeting, Felicity Mobbs and her colleague, Catherine Lockwood, discussed products available to laryngectomees, the conditions and forms that apply. These may be more generous than previously thought. An html version of a draft document current at the meeting date "Voice Prosthesis, Electrolarynx and Respiratory Consumables for Laryngectomy" is available here along with links to articles and forms on their website.
Aug 2013 Newsletter An article entitled "Price Gouging by Australian Medical Suppliers" extracted from an article on this website is of particular relevance to laryngectomees. The source article is here with links to supporting documents. The main response of Australia based suppliers has been to remove all pricing information from their websites, forcing clients to apply or make purchase before being able to see prices.

Our retired newsletter editor, Antoni Krasnodebski, emailed: a fantastic link with a host of resources for laryngectomees www.speechtherapytoolbox.com/laryngectomy.html Antoni, encourages all of you to visit the National Association of Laryngectomee Clubs (UK)(NALC) website: "it is certainly a humdinger". Antoni also suggests Laryngectomees Association of Peru "Even if you can't speak Spanish it is worth a visit. They put an impressive amount of effort into combatting the tobacco companies" Google Chrome does a good job of translation.

YouCanSayThatAgain
Our hardcopy booklet "YOU CAN SAY THAT AGAIN" printed in association with the Cancer Council of NSW
is available as a PDF file as of 25/02/2010 for VIEW or DOWNLOAD
It was produced as a reference, guide and helpline for those about to have, or have had, a laryngectomy, their families,friends, carers.
The purpose is to assist them towards a positive rehabilitation and future and to give confidence that they will speak again.

It is now available as an updated interactive WEBPAGE which is currently under development.
A PDF format copy of the A5 booklet that would be produced from the webpage can be viewed/ printed/ downloaded. Readers are invited to contribute their ideas. It will be used to produce the Fifth Edition hardcopy booklet.
FOR SUGGESTIONS, COMMENTS, CRITICISMS re this booklet or WEBSITE:   please email admin@stilltalking.org

SmoothAsSilk CookBook Our "Smooth As Silk CookBook"
is now available ONLINE in two forms:
for viewing as an updated WEBPAGE and
as a
EBook MOBI file as of 18/02/2012 for DOWNLOAD
It was compiled and produced by the
Laryngectomee Association of N.S.W..
FOR THOSE WITH SWALLOWING
AND/OR
CHEWING DIFFICULTIES

FOR SUGGESTIONS, COMMENTS, CRITICISMS re this WEBSITE or booklet:   please email admin@stilltalking.org

" General Information & First Aid " (for Lyngectomees & Carers), an excellent A4 double sided flyer entitled has been revised and made available as a webpage and a pdf in two versions. The second is mostly black and white.

Laryngectomy Supplies stocked by the LANSW and sold at cost: Show
John Czadrik's laryngectomy operation screened on TV Channel 9 is available for viewing on some browsers.
Medical Animation of a Laryngectomy, Surgical Voice Restoration, is available on YouTube
QUESTIONS TO ASK YOUR DOCTOR from the UK Throat Cancer Foundation website
Itzhak Brook's MD. (USA) blog site contains his books, manuscripts and videos about his personal experience as a patient with throat cancer and life as a laryngectomee.
Swallowing Research sponsored by LANSW (An article in a StGeorge newspaper)
See links page for more resources.
for CONTRIBUTIONS TO THE NEWSLETTER, email admin@stilltalking.org

SPbanner Strictly Speaking is a FaceBook group, based in Sydney Australia, for people who have had or are about to have a Laryngectomy. Their family, friends and of course health professionals are more than welcome also. Members can post questions and receive replies from each other, tell of their experiences, whether good or bad and generally help each other with the changes that affect us all on our journey as Laryngectomee's. In view of the sensitive nature of this group, posts on politics, religion or anything considered offensive or abuse of another member will not be tolerated and the offending member will be given a warning. Should this behaviour continue the member will be removed from the group without further warning. Your understanding in this matter is greatly appreciated. We hope you enjoy your experience in this group as your input and advice will be warmly sought and encourged. Have a great day!



Watch the Singing Cowboy's anti-smoking video
"You don't always die from tobacco"

For more information on the Singing Cowboy click here to read the pdf


Communication after laryngectomy

YakityYak

A video about communication, specifically after total laryngectomy (surgical removal of the larynx). This video also highlights good communication skills and can be used in training for anyone working with the public. Produced by the South East Coast Laryngectomy groups: YakityYak in Brighton and Necks Best in Eastbourne / Hastings.


Cancer Council 13 11 20