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Dedicated to the welfare of Laryngectomees and those with similar vocal disorders All Correspondence to: The Secretary, Laryngectomee Association of N.S.W No 200 July 09 MONTHLY MEETINGS N.S.W Association 3rd Wednesday of month Uniting Church Hall Carrington Avenue. Strathfield at 11am NEW ENGLAND: Meets at 2pm 1st Wed.. August Decem- ber Conference Room. Rehab Unit Tamworth Base Hosp. 02 67678369 NEWCASTLE: 3 rd Tues. Monthly Mayfield Bowling Club. Ingall St. Mayfield. Contact John Lovett 02 4954 8308 NORTHERN RIVERS: 4 times annually at rotating venues 67678377 Contact Speech Pathology Lismore Base Hospital ALBURY: Meets alternate months from Feb. Contact Norma Teasdale 02 60211749 CANBERRA: 1 st Thu. at 11am. Mar. June. Sep. Dec. Can- berra Hospital SOUTHERN DISTRICTS: Last Wed of month. 11am. Tho- mas Rachael Moore Education Centre. Liverpool Hospital. Contact Pres. Richard Patman 9607 6708 or John Peden 0422 543 036. MID NORTH COAST Port Macquarie Community Health Centre. Feb. May. Aug. Nov Contact : David Mc.Clymont President 6559 8383 CENTRAL COAST Meet at Central Coast Leagues Club. Co- ordinator(s) Vicky Kelly (S.P.) and Ann Moloney (Gosford Hospital ) assisted by Bill Byfield 0402 045048 OFFICE BEARERS 2008 PRESIDENT: Brian Gardner 4 Merelyn Road. Belrose 2085 02 9452- 2858 VICE PRESIDENT: Russell Green 17/765 Princes Hwy. Blakehurst 2221 Ph.95473669 VICE PRESIDENT (2) Peter M c Gregor 21/39 Cook Rd, Centennial Park 2021 0419 421324 SECRETARY Colin Bolton, 39/122 Saunders Street. Pyrmont 2009. 02 95719220 .0437 378747 Email [email protected] TREASURER / WELFARE OFFICER: Carol Gardner: P.O Box 380 Belrose 2085 NSW Fax & Phone 02 9451 7926. Email [email protected] ASSISTANT WELFARE OFFICER & Hospital packs. Bruce Hodges 31 Clack Rd Chester Hill 2162 0404 400 842 MINUTE SECRETARY: Wyn Bolton. 39/122 Saunders St Pyrmont 2009 SPEECH AIDS COORDINATOR: John Chaloner PO Box 31 Summer Hill 2130. 02 9799-1154 NEWS EDITOR Colin Bolton 39/122 Saunders St PYRMONT 2009 02 95719220 Mob 0437 378747 Email: [email protected] WHO TO CONTACT BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde North Curl Curl 2099. Ph 02 9939-1539 Ask for David personally SPEECH AIDS, BATTERIES PARTS, ADVICE ON REPAIRS John Chaloner PO Box 31 Summer Hill. 2130 Ph 02 9799-1154 SHOWER SHIELDS, STOMA COVER MATERIAL AND WEL- FARE MATTERS. Carol Gardner, P.O Box 380 Belrose 2085 NSW Fax & Phone 02 9451 7926 ACCOMMODATION ASSISTANCE WHEN NEEDING OUT PATIENT TREATMENT AND AWAY FROM HOME:- Can- cer Council of NSW 153 Dowling St WOOLLOOMOOLOO 2011 (PO BOX 572 KINGS CROSS 1340) Ph 02 9334- 1900 Fax 02 9357-2676 Or contact social worker at the hospital you will be attending Association web page www.stilltalking.org International Association of Laryngectomees.. http://www.larynxlink.com Web Whispers www.webwhispers.org NEXT MEETING Wednesday 15th July 2009 Sydney Mechanics Institute 280 Pitt Street at 10 am Continuing Trial of venue Sponsors of “Still Talking” www.mainmed.com.au 1300 005279 Importers of Blom Singer & Servona Electrolarynx
Transcript
Page 1: Sponsors of “Still Talking” 09.pdf · BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde North Curl Curl 2099. Ph 02 9939-1539 Ask for David personally SPEECH AIDS, BATTERIES

Dedicated to the welfare of Laryngectomees

and those with similar vocal disorders

All Correspondence to: The Secretary, Laryngectomee Association of N.S.W No 200 July 09

MONTHLY MEETINGS

N.S.W Association 3rd Wednesday of month Uniting Church Hall Carrington Avenue. Strathfield at 11am NEW ENGLAND: Meets at 2pm 1st Wed.. August Decem-ber Conference Room. Rehab Unit Tamworth Base Hosp. 02 67678369 NEWCASTLE: 3rd Tues. Monthly Mayfield Bowling Club. Ingall St. Mayfield. Contact John Lovett 02 4954 8308 NORTHERN RIVERS: 4 times annually at rotating venues 67678377 Contact Speech Pathology Lismore Base Hospital ALBURY: Meets alternate months from Feb. Contact Norma Teasdale 02 60211749 CANBERRA: 1st Thu. at 11am. Mar. June. Sep. Dec. Can-berra Hospital SOUTHERN DISTRICTS: Last Wed of month. 11am. Tho-mas Rachael Moore Education Centre. Liverpool Hospital. Contact Pres. Richard Patman 9607 6708 or John Peden 0422 543 036. MID NORTH COAST Port Macquarie Community Health Centre. Feb. May. Aug. Nov Contact : David Mc.Clymont President 6559 8383 CENTRAL COAST Meet at Central Coast Leagues Club. Co-ordinator(s) Vicky Kelly (S.P.) and Ann Moloney (Gosford Hospital ) assisted by Bill Byfield 0402 045048

OFFICE BEARERS 2008

PRESIDENT: Brian Gardner

4 Merelyn Road. Belrose 2085

02 9452- 2858

VICE PRESIDENT: Russell Green

17/765 Princes Hwy. Blakehurst 2221 Ph.95473669

VICE PRESIDENT (2) Peter McGregor

21/39 Cook Rd, Centennial Park 2021 0419 421324

SECRETARY Colin Bolton, 39/122 Saunders Street. Pyrmont

2009. 02 95719220 .0437 378747

Email [email protected]

TREASURER / WELFARE OFFICER:

Carol Gardner: P.O Box 380 Belrose 2085 NSW

Fax & Phone 02 9451 7926. Email [email protected]

ASSISTANT WELFARE OFFICER & Hospital packs. Bruce

Hodges 31 Clack Rd Chester Hill 2162 0404 400 842

MINUTE SECRETARY: Wyn Bolton. 39/122 Saunders St

Pyrmont 2009 SPEECH AIDS COORDINATOR: John Chaloner

PO Box 31 Summer Hill 2130. 02 9799-1154

NEWS EDITOR Colin Bolton 39/122 Saunders St

PYRMONT 2009 02 95719220 Mob 0437 378747

Email: [email protected]

WHO TO CONTACT

BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde

North Curl Curl 2099. Ph 02 9939-1539 Ask for David

personally

SPEECH AIDS, BATTERIES PARTS, ADVICE ON REPAIRS

John Chaloner PO Box 31 Summer Hill. 2130

Ph 02 9799-1154

SHOWER SHIELDS, STOMA COVER MATERIAL AND WEL-

FARE MATTERS. Carol Gardner, P.O Box 380 Belrose

2085 NSW Fax & Phone 02 9451 7926

ACCOMMODATION ASSISTANCE WHEN NEEDING OUT

PATIENT TREATMENT AND AWAY FROM HOME:- Can-

cer Council of NSW 153 Dowling St WOOLLOOMOOLOO

2011 (PO BOX 572 KINGS CROSS 1340) Ph 02 9334-

1900 Fax 02 9357-2676 Or contact social worker at the

hospital you will be attending

Association web page www.stilltalking.org

International Association of Laryngectomees..

http://www.larynxlink.com

Web Whispers www.webwhispers.org

NEXT MEETING

Wednesday 15th July 2009

Sydney Mechanics Institute

280 Pitt Street at 10 am

Continuing Trial of venue

Sponsors of “Still Talking” www.mainmed.com.au 1300 005279 Importers of Blom Singer & Servona Electrolarynx

Page 2: Sponsors of “Still Talking” 09.pdf · BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde North Curl Curl 2099. Ph 02 9939-1539 Ask for David personally SPEECH AIDS, BATTERIES

2

It’s that time of the month when I sit chewing the end of

a biro, staring at a blank sheet of paper or should I say

computer screen and trying to think of something to

write or include in the newsletter - some contribution

from our readers, no matter how small would help allay

my anxieties a great deal— how about it?

Winter is well and truly

upon us, I never worry what

sort of weather is dished up

these days - different

weather simply presents

me with different options

for doing things. In that re-

gard I remember my grand-

dad saying “There is no

such thing as bad weather - only the wrong clothes! As I

write this newsletter we approach the winter solstice on

the 21st - and the days will get longer and we have spring

starting to seem that little bit nearer.

The threats of Swine Flu seem to be still around, trying to

make light of what can become a serious issue I have in-

cluded a few funnies ( I hope) on the matter later in the

newsletter, at least we know the pigs don’t have to worry

about it - they will be ‘cured’ anyway. The scare does

seem in hindsight to have been exaggerated both by me-

dia and government— but still better safe than sorry. The

main threat now seems to be to the elderly and people

with chest problems—so take care out there. I suppose

as Larry’s one thing we have in our favour is the fact that

we permanently wear a mask!

The front page tells me I am writing/editing the 200th

Newsletter and although I have some back issues I don’t

really know when they started, however with 10 issues a

year (at present) that’s 20 years. I will have a look back

and see if I can find some ‘voices’ from the past to report

on

Till next time take care go well CB

We never know the worth of water 'til the

well is dry. - English proverb

What we obtain too cheap, we esteem too lightly. -

Price is what you pay. Value is what you get.

Editors Corners Engineers Patrick and Seamus ( Dublin mechanical

engineers) were standing at the base of a flagpole,

looking up. A blonde woman walked by and asked

what they were doing.

We're supposed to find the height of the flagpole,"

said Patrick "but we don't have a ladder."

The woman took a wrench from her purse, loosened a

few bolts, and laid the pole down. Then she took a

tape measure from her pocket, took a measurement,

announced, "5 metres," and walked away. Seamus

shook his head and laughed. "Ain't that just like a

blonde! We ask for the height and she gives us the

length!"

*******

A circus owner walked into a bar to see everyone

crowded about a table watching a little show. On the

table was an upside down pot and a duck tap dancing

on it.

The circus owner was so impressed that he offered to

buy the duck from its owner. After some negotiations,

they settled on a figure of $10,000 for the duck and

the pot.

Three days later the circus owner runs back to the bar

in anger, "Your duck is a rip off! I put him on the pot

before a whole audience, and he didn't dance a single

step!"

"So?" asked the ducks former owner, "did you remem-

ber to light the candle under the pot

*******

Swine Flu Update I called the Swine Flu hotline … all I

got was crackling

I heard that the first symptom is that you come out in

rashers.

Another is that you get the trotts.

But, I woke up with pig tails this morning ... Should I

be worried?

The doctor asked me how long I'd had the symptoms

of Swine Flu. I said it must have been about a

Weeeeeeeeeeeeeek!

Apparently my mate's got Swine Flu, I think he's just

telling porkies, though.

The only known cure for Swine Flu in humans has

been found to be the liberal application of oinkment

Page 3: Sponsors of “Still Talking” 09.pdf · BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde North Curl Curl 2099. Ph 02 9939-1539 Ask for David personally SPEECH AIDS, BATTERIES

3

As we know, the laryngectomy operation separates our trachea and

lungs from the upper part of the respiratory system--the nose,

mouth, and throat. A side effect of this is to stop the intake of res-

piratory air which also conveyed odors. In addition to being de-

prived of one of the senses, we also lose a portion of the role the

nose played in enhancing the taste sensation. The taste sensation is

a combination of sensations conveyed by the tongue and

nose. Additionally, not being able to smell can constitute a safety

concern in not being able to smell smoke or spoiled food. An addi-

tional function of smell is to trigger salivation, which aids in diges-

tion.

A session in Vancouver on restoring the ability for laryngec-

tomees to smell was conducted by Dr. Corina van As of the Nether-

lands Cancer Institute. Dr. van As, along with other researchers in

Europe, has shown considerable interest in helping laryngectomees

retain optimal breathing efficiency as well as restoring the ability to

smell. These aspects of the "total rehabilitation of laryngectomees"

has received less attention in North America. Dr. van As described

an experimental treatment program for laryngectomees which

taught them new ways of moving air into the nose for the purpose

of smelling.

The basic idea of the approach to learning to smell is to create a

vacuum in the

mouth area. The

method is taught

in three

stages. The first is

a very large

movement. The

jaw is lowered

while keeping the

lips closed. The

soft palate (roof of the mouth) is relaxed. The patient also focuses

on lowering the tongue along with the lower jaw. The movement

needs to be practiced in a relaxed manner with calm breathing. The

movement resembles a large chewing motion. It creates a vacuum,

and air moves into the nose. Nearly 90% of the patients in the

study could learn the movement after just one therapy session. But

since the movement is attention-getting, the same vacuum needs to

be created in a less obvious way.

The second step is to make it less obvious by not lowering the

jaw, but to create the vacuum primarily with the back of the

tongue. The back of the tongue is raised to the roof of the mouth

(back of the palate). Then it is lowered.

The third stage has been previously described as the "polite

yawn" method. If you yawn with your

mouth closed there is a subtle increase in

the size of the nasal and mouth cav-

ity. This creates the vacuum and permits

some air to enter the nose for the purpose

of smelling.

During the study patients were given

visual feedback that they were moving air

into the nose by means of a device called a

water manometer. The vacuum created in

the nose moves water contained in the device towards and then

away from the nose as air is moved in and out of the nose. This

helped the patients learn the methods.

Dr. van As concluded that patients in the study reported im-

proved taste and appetite, as well as increased ability to

smell. Approximately one half of the patients continued to use the

method over time.

*******

My Grandparents are funny, when they bend over; you

hear gas leaks, and they blame their dog.

The Varta batteries for the Servox speech aid in the latest delivery from our supplier have increased a little in price. “Your” Association still absorbs the GST and the postage & packaging costs but the net price to members is now $21.45

per battery" John Chaloner speech aids coordinator

News

Flash

Learning to Smell Again

Page 4: Sponsors of “Still Talking” 09.pdf · BLOM SINGER SUPPLIES:- David Smith. 27 Bellevue Pde North Curl Curl 2099. Ph 02 9939-1539 Ask for David personally SPEECH AIDS, BATTERIES

4

SMH Friday 29th May—Somehow seemed appropriate in NSW

In the June 24th issue of Newsweek an article reported

on technologies being worked on at Massachusetts Eye

and Ear Infirmary by Dr. Robert Hillman and oth-

ers. One project would attach a sensor to the neck

muscles of a Laryngectomy which would pick up the

impulse that the user was speaking. This signal would

be wirelessly transmitted to something resembling a

Walkman player worn on the waist. It would transmit

a signal to a very small and inconspicuous tone emit-

ting device which was attached to the neck. While the

technology is similar to an AL, efforts are being made

to make the voice more easily modified in both volume

and pitch.

While this hands-free technology is only now being

worked on and it will be some time before it is com-

mercially available, it is heartening to know that, de-

spite the fact that there are few Laryngectomees, that

improving our lives is on the agenda of the research

community.

Peter Mc.Gregor our senior vice president said at the

meeting he had recently flown with United Emirates

Airlines and that a flight attendant had approached

him and said “I see you are a Laryngectomee Sir - is

there anything I can do for you?” I can’t imagine this

Happening on Qantas or the other Australian Airlines

and probably none of the others either.

It reminded me of a reported situation on an airline

when the Oxygen masks dropped and the Larry passen-

ger put the mask to his stoma— the flight attendant

said “You have to put the mask on your nose sir” to

which the passenger replied, “That’s no good I’m a

Laryngectomee” our intrepid attendant replied “I don’t

care what religion to are sir it still needs to go on your

nose!”

At our last months meeting in the Mechanics Institute

my wife Wyn was catching the lift to the first floor and

along came a group of seniors also attending a meeting

in the building. One of them reading the notice in the

foyer said “What is a Laryngectomee” Having seen our

name on the list of meetings being held there. Another

of the group said “They must be the ones with the col-

lars!” Well at least we were recognised.

You will no doubt remember that in my last letter and

at the previous meeting I had asked for photographs of

people (Larry’s) getting on with their lives in everyday

pursuits. At home I found a mysterious note unsigned

saying ‘ME HAVING A BEER ON PACIFIC DAWN IN AU-

GUST 09’ But there was no picture with it!

My memory failing me (not unusual) I could not re-

member who gave it to me or to what it referred and

mentioned this at the June meeting. Ruth Gray admit-

ted to giving me the note said it referred to a picture

she was going to give me when she goes on her pro-

posed trip in August.

Ruth has had more than her fair share of problems

since her surgery and it is great that she is planning a

holiday ahead she is a determined lady and I look for-

ward to getting the picture and sharing it with you in

the newsletter.

Regarding the request I made for pictures of members

involved in every day activities, be it work, sport etc for

the booklet ‘You Can Say That Again’ the response has

been appalling - I have got none other than Brian Gard-

ner and myself, probably about 6 would suffice for the

project and I said I would publish all pictures used or

not in the newsletter.

Surely we can do better than this! The main aim of our

association is to help others and one thing that does

help is the distribution of this booklet to new Laryngec-

tomees.

New Technologies in the Works

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5

By Tudor Vieru, Science Editor Softpedia.com

27th of February 2009,14:35 GMT

As stem cell research is currently making impres-sive headway in the creation of artificial organs, doctors in the UK are starting to ponder the ethical implications of performing voice box transplants. This type of surgical procedure refers to replacing a human larynx, the organ that is responsible for giving each man and woman on the planet their individual voice. Cancer and violent trauma are the main reasons why nearly 1,000 people in the UK lose their voice boxes every year. For them, a transplant is the only way to regain their ability to speak.

On the other hand, a team of scientists believe that

they may be able to perform the operation without the patient having to take immuno-suppressive medication to inhibit their body's natural defences, so that the trans-plant won't get rejected. The trick is to use the patient's own stem cells for the procedure. The organ that needs replacing is harvested from a newly-deceased patient, and is then stripped of all its own cells. Thus, all that re-mains is a clean scaffolding, on which the patient's own stem cells are grown, using a bioreactor.

When the organ is ready, it's simply placed inside

the receiver's body, which has no problem in accepting it, because it's not viewed as a foreign object. This type of surgery was used successfully on one occasion, when a woman received a new windpipe, constructed from her own cells. She never had to take strong medication to force her body to accept the implant. Other transplant patients, such as those who get a new heart, a lung, or a kidney, need to take them, because, if not, there's a very high chance that the body will reject the new organ.

As side-effects, these drugs inhibit the immune system, which

means that the person is left completely defenceless even

against the most harmless bacteria. Countless infections can

find strong medication to force her body to accept the implant.

Other transplant patients, such as those who get a new heart, a

lung, or a kidney, need to take them, because, if not, there's a

very high chance that the body will reject the new organ.

As side-effects, these drugs inhibit the immune sys-

tem, which means that the person is left completely defenceless

even against the most harmless bacteria. Countless infections

can find

Thanks to IAL Newsletter

Tim Heidler was the first person to re-

ceive a larynx transplant. He had lost his

voice box due to an accident and not to

cancer.

The procedure was done at the

Cleveland Clinic which has had a difficult

time finding someone else willing to

undergo the procedure in part because

of the hundreds of thousands of dollars

needed to control the rejection of the

trans­planted larynx.

‘Voice Box’ Transplants Under Scrutiny

Doctors wondering if it’s ethical to do it

Report of meeting held at Sydney Mechanics

Institute - June 17th

Our trial meeting here got off to a good start when no sooner had we got into the meeting room and got organised when the fire alarm went off and we had to evacuate the building. It was fortunately a false alarm and we were soon back down to business.

The meeting had a better than average atten-dance but still not what I had hoped for, al-though the weather was bad on that day. One member had said he would not attend meet-ings held here and another who was present said that it was inconvenient to get there and that he would not attend in future, I can under-stand the latter one having given a go but I think the venue did at least deserve a try on the part of the other. The last thing we want to do is to lose long standing members but if we are to survive it is important we attract new mem-bers to meeting.

The general opinion was that it was more com-fortable and convenient for many, it was cer-tainly much easier to conduct a meeting and I found it much easier to hear people speak.

It was resolved that the trial continue and that the next two meeting be held there but held at our usual time of 11am

However there is a slight hitch to this proposal the rooms are all booked for the 3rd Wednes-day of August - I have asked to be notified of any cancellation.

Please note the July meeting will be held at

SYDNEY MECHANICS INSTITUTE 280 PITT STREET. SYDNEY AT 11am

Further notification will be given in the next newsletter re the August meeting

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6

"I'm a novelist. My work is human

nature. Real life is all I know. Don't

ever confuse the two, your life

and your work. You will walk out

of here this afternoon with only

one thing that no one else has.

There will be hundreds of people

out there with your same degree:

there will be thousands of people

doing what you want to do for a

living. But you will be the only per-

son alive who has sole custody of

your life. Your particular life. Your

entire life. Not just your life at a

desk, or your life on a bus, or in a

car, or at the computer. Not just

the life of your mind, but the life

of your heart. Not just your bank

accounts but also your soul.

People don't talk about the soul

very much anymore. It's so much

easier to write a resume than to

craft a spirit. But a resume is cold

comfort on a winter's night, or

when you're sad, or broke, or

lonely, or when you've received

your test results and they're not

so good.

Here is my resume: I am a good

mother to three children. I have

tried never to let my work stand in

the way of being a good parent. I

no longer consider myself the cen-

tre of the universe. I show up. I

listen. I try to laugh. I am a good

friend to my husband. I have tried

to make marriage vows mean

what they say. I am a good friend

to my friends and they to me.

Without them, there would be

nothing to say to you today, be-

cause I would be a cardboard cut

out. But I call them on the phone,

and I meet them for lunch. I would

be rotten, at best mediocre, at my

job if those other things were not

true.

You cannot be really first rate at

your work if your work is all you

are. So here's what I wanted to

tell you today: Get a life. A real

life, not a manic pursuit of the

next promotion, the bigger pay

cheque, the larger house. Do you

think you'd care so very much

about those things if you blew an

aneurysm one afternoon, or found

a lump in your breast?

Get a life in which you notice the

smell of salt water pushing itself

on a breeze at the seaside, a life in

which you stop and watch how a

red-tailed hawk circles over the

water, or the way a baby scowls

with concentration when she tries

to pick up a sweet with her thumb

and first finger.

Get a life in which you are not

alone. Find people you love, and

who love you. And remember that

love is not leisure, it is work. Pick

up the phone. Send an email.

Write a letter. Get a life in which

you are generous. And realize that

life is the best thing ever, and that

you have no business taking it for

granted. Care so deeply about its

goodness that you want to spread

it around. Take money you would

have spent on beer and give it to

charity. Work in a soup kitchen. Be

a big brother or sister. All of you

want to do well. But if you do not

do good too, then doing well will

never be enough. It is so easy to

waste our lives, our days, our

hours, and our minutes. It is so

easy to take for granted the colour

of our kids' eyes, the way the mel-

ody in a symphony rises and falls

and disappears and rises again. It

is so easy to exist instead of to

live.

I learned to live many years ago. I

learned to love the journey, not

the destination. I learned that it is

not a dress rehearsal, and that

today is the only guarantee you

get. I learned to look at all the

good in the world and try to give

some of it back because I believed

in it, completely and utterly. And I

tried to do that, in part, by telling

others what I had learned. By tell-

ing them this: Consider the lilies of

the field. Look at the fuzz on a

baby's ear. Read in the back yard

with the sun on your face.

Learn to be happy. And think of

life as a terminal illness, because if

you do, you will live it with joy and

passion as it ought to be lived."

*******

The world's reli-gious leaders have issued a joint decla-ration that the Swine Flu pandemic

is the start of the aporkalypse.

Swine flu has now mixed with bird flu. Scientists say they will find a cure when pigs fly.

I just heard on the news that, "Swine Flu could potentially be a threat to every single person in the world". Well it’s a good thing I’m married then, isn’t it? This is not a time for panic. It is no pig deal. It is a mild hamademic, don't believe the spam you're get-ting.

This was a speech made by Pulitzer Prize-winning author, Anna Quindlen at the graduation cere-

mony of an American university where she was awarded an Honorary PhD.

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7

MINUTES OF MEETING HELD 17th June at Sydney Mechanics Institute

ATTENDANCE : Brian Gardner. Peter Mc.Gregor. Colin Bolton. Anne Marie Misname. Don Newby. John Chaloner. Victor Stumbles. Jan Heapy. Ruth Gray. Barry Bunker. Jon Pyle. Noel Gildea. Bruce Hodges. Robert Seal. Non Laryngectomees: Carol Gardner. Patricia Betz. Bob Heapy. Pat Dawson. Wyn Bolton. Jan Pepe. Pat Lamont APOLOGIES Toni Krasnodebski. Lillian Walton. Peter Ewan. Fiona Jefferson. Ray Chappelow.

MINUTES: Resolved/John Chaloner That the minutes as presented in the newsletter be accepted as a true and correct re-cord of the May meeting with no matters arising.

SECRETARY’S REPORT: The editing of the booklet “You Can Say That Again” is progressing slowly and is now in the hands of Margaret Patterson and other speech pathologists for editing of medical issues.

Correspondence: From Cancer Council re support group training and application forms. Barbara Auswild advising of death of her father Ronald William on October 13th 08 John Czadric. Thanking association for git of starter pack. Outwards: Clare Mc.Gregor thanking her for proof reading of You Can Say That Again Today we are trying a new venue – the timing and the way refreshments are/have been dealt with have been a temporary measure. The first priority will be to decide if we accept the change in principle and that we have full and meaningful discussion on the matter. Resolved: Secretary’s Report be accepted/John Chaloner.

WELFARE REPORT: New members: Jennifer Jones of Wallsend, Peter Tierney of Bangor.

VALE – Barry JUDGE of Glen Innes. Kevin Waller, Mary HALLIBURTON of Carlingford. Mary died on 3/6/09 and an emotional and moving service was held at her Parish Church ( St Gerard Majella , Carlingford) where she had been a faithful member and tireless worker – there was a large congregation of relatives, friends and acquaintances present, testimony to the person and the way she had lived her life. Mary had brought her late husband, Pat, along to join our Association many years ago after he had a Laryngectomy operation following stroke related complications. They both then participated wholeheartedly, taking positions on Committee and helping with social functions. Mary has not enjoyed good health for a number of years herself but was still a very willing volunteer for her chosen charity work and of course, the loves of her life, her daughters Dione and Celia, son Ian and their respective families, including the three “special” grandsons. She will be missed by many, but never forgotten as a devoted daughter, sister, wife, mother, grandmother and friend. What more can anyone be!

John Lovett Hunter Valley branch reported that Ellen Privett had died aged 99. She has been a stalwart of the Newcastle Hunter branch and served as secretary for 20 years— retiring from that position at the of 84 years

As shown in the Finance Report we have replenished stocks of the Complimentary Packs given out to new members – they have been well received and acknowledged by many.

Julia Maclean is hoping to attend the July meeting to give us a presentation regarding her research funded by the Associa-tion. We look forward to what should be of interest to existing and future Laryngectomees, and validating the grant made for her work. Carol Gardner

SPEECH AIDS COORDINATOR’S REPORT– June 2009 . The Varta batteries for the Servox speech aid in the latest delivery from our supplier have increased a little in price. Y our Association still absorbs the GST and the postage & packaging costs but the net price to members is now $21.45 per battery.

On Thursday 11th June I attended the State Funeral of Professor Chris O’Brien AO at St Mary’s Cathedral in Sydney. I did so as a representative of the Association but mainly because he had done my operation way back in 1990. Even though I arrived at 9.20 for a 10.00 service the cathedral was already packed (the papers next day said there were 1200 in attendance). I managed to get a seat right down the back, near the open entrance doors (rather chilly!). There were plasma screens set up on some of the columns and also outside so everyone had a view of the speakers. Eulogies were made by Dr Mark Malouf, his best friend since childhood, and Prof Michael Boyer, a fellow doctor at RPA. Also prominent Sydney businessman Paul Cave who was a pa-tient of his (for melanoma skin and internal facial cancers) and who is now heavily involved in the setting up of the “Lifehouse at RPA” cancer centre. And of course the Prime Minister, Kevin Rudd. Readings were by Dr Alison Healey, his aunt, and Quentin Bryce, the Governor-General. Later prayers were read by his sons and the final eulogies made by his daughter and his wife Gail. It was a moving service and a fitting tribute to someone who did so much for the treatment and management of head & neck cancer, and cancer patients in general, in Australia and the world. John Chaloner,

PRESDIENT’S REPORT Welcomed Robert Seal of Orange a new member. Reported on visit to the opening of the Coffs Harbour branch and reported that $200 donation had been made to the branch as directed by the association. There was some fear that this donation has been absolved into hospital funds and this is being investigated. This association is going to meet quarterly.

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The Port Macqaurie branch had made application for a grant to the cancer council and had received sufficient funds to pur-chase a Servox for loan purposes.

GENERAL BUSINESS There was quite a long and meaningful discussion on the new meeting place at the Sydney Mechanics Insti-tute which in general was favourable it was resolved /John Chaloner that this venue be trialled for a further 2 months.

There being no further business the meeting closed at 11.40am

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