A PARTNER'S VIEWPOINT

I am not here to instruct anyone - I am going to talk about some experiences we have had and how we have coped. My solutions are not necessarily anyone else's - my problems are not necessarily the same as anyone else's - after all I've only ever lived with one laryngectomee.

It is now almost eleven years since my husband was given the choice between a hole in the neck or a hole in the ground. I consider myself fortunate that he chose the former - we have had some pretty good times in the last eleven years. Not that there haven't been times since when I haven't wondered - but then show me a woman who hasn't wondered at times why she married the man she did and I'll show you a liar.

By the time he had the choice we had been through what most of you here have been through; the suspicion that the hoarseness was more than laryngitis, the tests and the confirmation of our worst fears, the ray treatment that 'We are quite sure will get rid of the growth sir' but which didn't, and eventually the options being put.

Now when a person is told he has cancer his partner suffers greatly - for different reasons but suffers nonetheless - so spare a thought for the partner please. My suffering was in two categories - firstly the feeling of utter helplessness, here was something I couldn't kiss better - had I done all I could in the past? Then the feeling of guilt - guilt because I was glad it wasn't me and guilt because so many of my feelings were self centred - how was I going to cope with this challenge - how would I cope if he got worse. I did cope but I didn't- like myself much.

Now Nick had never reacted well to any indisposition - men don't do they - you all know what it is like - one sneeze is sure to be double pneumonia. The kids and I were a mite worried about how he would react to this -- but this time it was serious and he rose to the challenge and made it easier for us all.

The surgeon had allowed him three weeks to complete the project on which he was working - a very busy three weeks it was and went very quickly - we did not keep his condition a secret and with his help friends accepted it well too. The night before he went into hospital his co-workers all gathered around at work and a very good party was enjoyed by all - the warmth of that night was a great help to us both.

Four weeks later he was back at work as though he had hardly been away, albeit with a somewhat different voice.

It certainly hasn't all been easy since then but we have had an enormous amount of luck - and don't allow anyone to tell you luck doesn't come into it - it plays a big part - hard work is necessary too but luck is important.

Firstly his surgery went well and he recovered fairly quickly - I must admit we were both a bit shocked at the amount of plumbing to which he was connected but that soon was removed and he was able to get around.

I must mention one of the finest nurses I have ever seen and I have seen a few - she looked after Nick on his first day after surgery and talked to him all the time - explaining what she was doing and why she was doing it - why he felt like he did and what she could do about it etc. etc. - in other words did not assume that because he was groggy and dumb he was also stupid and unfeeling - that he was more than a hole in the neck. Actually most of the treatment he received was good but she was out of the box.

We encouraged visitors - short cheerful visits are the best - and those that couldn't visit sent flowers. Never assume that women are the only ones that appreciate beauty - those flowers cheered up the whole ward and reminded Nick that there were many whose thoughts were with him.

His next hurdle was looking at himself in the mirror - he found this most difficult and still does not like the look of his stoma - personally I think it is the most beautiful hole in the world because it means I still have him - not that I expect anyone else to enjoy it so I'm glad his personal pride is such that he keeps it covered at all times - something for his doctor and I to enjoy.

Then off to speech therapy and once again luck was with him and he was able to produce sound using oesophageal speech at his first lesson - enough for one word but this triumph made him feel and look so much better - he was able to verbally communicate again!! - his excitement was enormous and he didn't stop all day in case he forgot how.

A few days later I took him home - able at least to greet his friends with a brief 'Hello' and on the way to recovery. Of course speech was halting and slow but he had a letter of referral to the local Health Centre. Now speech pathologists are pretty thin on the ground out our way but our luck was in again and at the time we needed one there was one on staff and a very determined young lady she was. She would call in each morning (our place she found quieter than her office) before Nick went to work and she did not take any nonsense. A week after she started she told him she had put his name down to present a paper at the Laryngectomee Seminar to be held in October that year - Now he has always loved making speeches and he wasn't going to pass up this chance so he worked very hard - I just wish I could control him as well as she did. This daily lesson for the first couple of months did him the world of good. I admit his practice since hasn't been as consistent but I soon found out that nagging by me doesn't help so I don't.

A week after coming home he returned to work (part time at first). He was wary of answering the phone as often the person on the other end hung up before he was able to produce that important first word so I went with him for the first few weeks to answer the phone like a switch girl and then hand it to him - I refused to carry out the business end of the calls as frankly my knowledge wasn't good enough and a three way conversation is not satisfactory to anyone.

In this manner of trial and error I discovered the rules I needed to follow to make my life easier - I'm a pretty - no, very selfish person and wasn't prepared for a life with a dependant husband when I felt it wasn't necessary. I am also good at rationalising my actions and tell myself this has been good for Nick too - after all he is still the man I chose forty years ago - a stubborn, bad tempered and very loveable male chauvinist.

The rules I worked out for myself (not necessarily in order of importance are:

1. Don't accept sign language - expect the courtesy he extends to others.

2. Tell him if I don't understand or can't hear properly. All wives will recognise this situation whether or not you are married to laryngectomee - if I can't hear him its my fault for not listening properly - if he can't hear me its my fault for not talking properly! The difficulty is getting this message over to others - we all know the frustration of talking to a person who nods when it is obvious they have not understood what has been said. It is less hurtful to say "What did you say?" than to nod with a glassy stare of incomprehension.

3. When in company NEVER, NEVER answer for him - if he is asked a question it is for him to answer - occasionally in very noisy circumstances he will use me as an amplifier - he will speak the answer mouth to ear to me and I will repeat it but it must be his words I use. If he is coping I wander off and find someone more interesting to talk to.

4. Never pretend his voice is not different to other peoples - it is - he knows it - I know it - and the people to whom we are talking know it. It's not difficult to put people at ease over this and you don't have to go into details - I usually say something to the effect that "my husband is the one with the sexy voice" Nick usually tells people he has a throat problem and that is all that is necessary to put people at ease - and when they are relaxed they can concentrate better.

I well remember one day in the office (I go in to work at busy times) Nick spoke to a child who was there with her mother. The child looked at him with big round eyes but said nothing - the mother, most embarrassed said "Answer the man" but the kid was still speechless so I said "You were listening to his funny voice instead of listening to what he said weren't you?" she nodded, Nick repeated the question and they carried on quite a conversation in a relaxed atmosphere.

5. Don't do things for him unless asked (and not even then if I think he is just being lazy). The first time we arrived at a motel after he had had his operation I was tempted to go into the office with him to book in - but I stopped myself and he did what he had always done and did the booking - another problem overcome. 6. And this is probably my most important rule - HAVE CONFIDENCE IN HIM - I know that there is nothing (except swim, surf and hit a high note) that he can't do as well or better than before he had his throat cut - and this knowledge is sometimes what keeps us going even on his down days and they do have them don't they? The first local council election after he had his laryngectomy I heard the wife of another candidate (we were handing out `how to votes' at the time) say to a voter "You can't vote for John Nicholson, he can't even talk properly" - boy did I work hard that day - I knew he could do the job -after all he had not missed a council meeting in three years - and he knew he could do the job. Now I am not a vindictive person but when the votes were counted I was very happy when Nick was elected and her husband wasn't!!!

As I said earlier - life with a Laryngectomee is not always easy but in my case once the initial drama was over it has proved to be pretty much the same as life before he had his throat cut - there are times when he tries to blame his unreasonableness on the fact that he has had a laryngectomy but I refuse to accept that excuse and we have a ding donq row which does us both (or me anyway) the world of good - its amazing what volume he can produce when he is mad and making up is just as much fun as it was forty years ago - he is still the same man I chose then.

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COMMUNICARDS

The September issue of CLAN newsletter had a story about a blind person who underwent a Laryngectomee. For John Wylie it was a very anxious time not being able to see or speak and the nursing staff had difficulty in understanding his finger writing. Particularly frightening was not being able to locate his alarm when he had breathing difficulties.

After his operation John started to develop a system to communicate. He used a 'Perkins Brailler' to produce Braille which was then stuck on the back of a card, friends then printed the message on the other side of the card which can be clearly read by any person he wants to communicate with.

Some messages on the cards include 'Please don't move my alarm', 'Where is my alarm', 'I feel very sick', 'My stoma is blocked', 'I am in pain' etc. He also produced some more personal cards such as 'Can you make a phone call for me, please', 'I need radio batteries', 'Can you put a bet on for me, please?'. So there are different sets of cards for different stages of recovery.

Since John developed the cards another visually impaired patient who had a tracheostomy has used them. She reported feeling reassured having the cards and found them useful to communicate her needs. However, many visually impaired patients are not able to read Braille but apparently there are other devices available such as an 'Alphatalker'. Some sighted or partially sighted patients who have mobility problems, for example, could find cards such as these useful for communicating their needs.

Anyway, this concept could well be borne in mind by Speech Pathologists and Hospital Visitors if they are ever confronted with a patient who has communication problems.

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DEPRESSION

Last year, the Western Australian Support Group newsletter ran an article from the 'West Australian' newspaper of October 11 that I think is worth repeating here, as I am sure the situation would be replicated in NSW.

Doctors Learn To Deal With Hidden Depression Of Cancer Patients

More than half the people diagnosed with cancer then suffer clinical depression or anxiety, which often is not diagnosed and can have severe ramifications, according to cancer experts.

The National Cancer Control Initiative will begin a series of national workshops in Perth today to teach GP's and medical specialists how to detect and deal with emotional problems a diagnosis of cancer can cause. The workshops will use world-first clinical guidelines approved by the National Health and Medical Research Council covering psychological, physical and social problems and sexuality and fertility issues.

NCCI director Mark Elwood said health professionals often underestimated the impact on mental health of a cancer diagnosis. "This often undetected and untreated emotional fallout can have severe long-term effects, not just for the person with cancer but for their family, social networks and employment," he said.

WA Cancer Council clinical oncology group executive officer Paul Katris said better treatments for cancer meant people were living with the disease for longer and needed continuing help.

Jane Turner, the head of the Psychological Guidelines Development and Implementation Group, said doctors were trained to treat physical symptoms and traditionally had not looked for emotional problems. It was normal for patients to feel sad or anxious for a few days after diagnosis but they did not have to put up with long-term depression.

WA Cancer Council counselor Karen Anderson said the council provided counseling for patients and had a phone service for people in remote and regional areas or who were house-bound.

A report accompanying the guidelines said up to 50,000 people diagnosed with cancer each year would suffer clinical anxiety or depression.

People felt distressed and fearful about the diagnosis and up to two-thirds experienced long-term emotional distress.

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ELECTRONIC LARYNXES

The following information on electronic speech aids has been collated and compiled by our Speech Aids Coordinator, John Chaloner. Prices are approximate and you should check with the agent - sometimes it's cheaper if you order over the internet.

ROMET is made in Las Vegas, Nevada, USA. Their web site is - www.rometspeechaid.com. As far as I know they are no longer available in Australia.

SERVOX is made in Germany. Their web site is - www.servox.de. but it's a bit slow and even when you click on the 'English' page there isn't much information there. It is available in Australia for about $1159.00 from Auditory Services or about $1195.00 from Monarch Medical (addresses below).

NU-VOIS is made in Boise, Idaho, USA by Mountain Precision Manufacturing. Their web site is - www.mtnprecision.com. The Nu-Vois 2 and the Nu-Vois 3 are both available in Australia for about $1159.00 from Pacific Medical (address below).

TruTone & SolaTone are made in Temecula, California, USA by Griffin Laboratories. Their web site is - www.griffinlab.com. The TruTone is about $960.00 and the SolaTone is about $790.00 from Pacific Medical.

Auditory Services
Croydon Hearing Centre,
Shop 4, 50 Main Street,
Croydon VIC 3136.
Toll free - 1800-035.047 or STD - 03-9886.3206. Web site - www.servox.com.au

Monarch Medical
1/32 Windorah Street,
Stafford QLD 4053.
STD - 07-3352.6100

Pacific Medical
Level 1, 263 Mary Street,
Richmond VIC 3121.
Toll free - 1800-656.059 or STD - 03-8416.0333. Web site - www.lmapacmed.com.

The Romet and the Servox both use the same type of special rechargeable battery.

The Nu-Vois, TruTone and SolaTone all use an ordinary 9 volt rechargeable battery.

Note that this information is current as at May 2004.

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FUTURE OF ARTIFICIAL LARYNXES?

A few years ago, Brian Shute of Communicative Medical, suggested that artificial larynges of today have become smaller, lighter, more efficient and user friendly, and should this trend continue into the future, we will likely encounter electronic devices that are more compact and energy efficient. They will possibly be implanted at the time of surgery and recharged monthly by way of a subcutaneous recharging coupler while the patient sleeps. They might utilize the existing musculature to control voice initiation and intonation.

Such devices might even harness the naturally existing electrical voltage of the body for operation. Devices in the future might allow for more sound production and vocal inflection, making it difficult to differentiate between normal and synthetic a laryngeal voice.

An artificial larynx implant would seem to still be a long way off but, as reported in March issue of 'Still talking', a hands-free artificial larynx is already on the market.

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GENE PROFILING

In January, Reuters reported that researchers at the University Medical Centre at Utrecht, Holland, have determined that certain cancers, such as head and neck squamous carcinomas, can be more readily identified by gene expression profiling than by a normal diagnosis. These cancers are often difficult to detect which can result in inappropriate treatment for some individuals.

Optimal prediction was achieved using the profiles of 102 genes in a set of tumours. Gene profiling correctly determined the metastatic state of 19 of 22 tumours analyzed. Further testing has shown that genetic profiling outperformed clinical diagnosis.

The Dutch researchers suggest that expression profiling will improve diagnosis and treatment of head and neck squamous cell carcinomas, both by reducing adverse side effects related to over treatment and also reducing the risk of fatalities due to overlooked metastases in the case of "watch and wait" strategies.

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GET CONTROL OF YOUR MUCUS
by Mark R. Finfrock R.R.T.

What can mucus control have to do with daily living? To a laryngectomised person everything!

Having that persistent and irritating tickle, the thought of "blasting" uncontrollably at the most inopportune time can affect ones image of themselves, not to mention draw unwanted attention their direction. Taking control is just a matter of understanding and recognising what's happening in your body and why.

In this article I will attempt to give the reader a better feel for the things they can do to improve their respiratory hygiene and therefore improve the quality of life.

I'll start with the fact that mucus is normal, everybody has it. It is part of the respiratory systems protection and defense mechanism. After the laryngectomy surgery, the individual has had components and functions of the system removed and bypassed, increasing the workload on the rest of the system. Systems lost include the "air conditioning" system (the nose), the "waste removal" system (cough) and bypass of the "disposal system" (swallow), this will all start to come together as we proceeded.

Mucus is made up of mucins (a complex group of glycosylated proteins), inorganic salts all suspended in water. Water is the prominent and key ingredient. Mucus is produced by goblet cells in the respiratory mucosa and provides a functional and protective barrier to these delicate tissues.

The Nose and Upper Respiratory Tract

The nose is the primary "air conditioning" system for the respiratory tract. It heats and or cools the incoming air to body temperature. It filters the air to remove particulate and debris, and it humidifies the air to close to 100% relative humidity.

The air needs to be "conditioned" before it reaches the alveoli (the part of the respiratory system where gas exchange takes place). Without the nose these functions need to be performed by the remaining airway. These structures were not designed to carry this burden, so they can use some help.

The upper respiratory system is lined with a unique tissue structure. The cells are all lined up and covered with small "hair-like" structures called Cilia. The Cilia beat in rhythmic pattern, like a wave to move mucus one direction towards the larynx to be removed.

There are two layers of mucus. The gel layer which is like a sticky blanket to hold inhaled particles and a thinner and less viscous sol layer to allow the cilia to move. This blanket of mucus evaporates and loses water to add humidity to the inspired air, causing a loss of efficiency in mucus movement.

The Cough

When mucus travels to the vicinity of the larynx, a cough can be triggered to expel the mucus.

A cough is another of the body's defense mechanisms aimed at protecting the respiratory system from aspiration of foreign bodies and removing excess secretions. Cont’d on Page 5 The cough is triggered by nerve endings in the respiratory tract, causing a well-coordinated and fixed pattern of events which consist of a deep inspiration followed by a strong expiratory effort against a closed larynx, which then suddenly opens releasing a strong blast of pressurised air at a high velocity, thereby moving the irritant away. With a Laryngectomee the pressurisation component of the cough is missing, greatly reducing the efficiency of the cough effort.

The laryngectomised person can be taught to mimic the larynx closure by using digital occlusion. The person takes a deep inspiration, digitally occludes the stoma (using a handkerchief or other non deteriorating wipe) starts to exhale, building back-pressure then rapidly releases the closure thereby increasing the velocity of the airflow and improving the efficiency of the cough and secretion removal.

The Swallow

In the non Laryngectomised person when the mucus hits the larynx it can be expectorated or most likely swallowed, how handy! A convenience totally lost to the Laryngectomee.

Therefore the Laryngectomee must compensate by doing everything possible to keep mucus production stable.

Because mucus is a defense mechanism, when in trouble the body produces more!

Factors that cause an increase in mucus production include:

Dehydration

When the Sol layer gets to thin the cilia can't move so the Gel layer stops and dries out even more, causing a crusting. When the "crusts" break free they can take some of the tissues with it. This can cause more irritation, some slight bleeding (blood streaks in the mucus) and yes…more mucus production!

Irritants

When dust, pollen, bacteria or any other irritant is inhaled, it triggers the production of more mucus to attempt to eliminate the irritants.

Your mucus can be a very good indicator of your respiratory health. Mucus is typically a thin clear to slightly opaque consistency. Changes in quantity, color or consistency can be an important indicator of an underlying problem. Be diligent and keep alert to changes!

What can be done to keep mucus in check?

Replace the functions of the nose! Filter the air before it gets to the airway. Be aware of your surroundings and take precautions to protect your airway. Use air filtration in your home.

Humidity and hydration is paramount in good respiratory health. Drink plenty of water and be conscientious of your environmental humidity level, an air conditioned environment has a very low humidity level, as does a cold winter day. A simple hygrometer can quickly tell you what the relative humidity level is.

A "steamy" shower or bath can help hydrate and loosen mucus as can room humidifiers.

Direct instillation of saline solution can help hydrate and loosen thickened mucus. Misting the saline in an atomizer or spray bottle will improve the deposition of the solution and reduce the "instantaneous" cough.

When using saline, make sure that is a "saline for inhalation", other products have preservatives that can be irritating and yes, increase mucus production!

Use of a HME (heat moisture exchanger) replaces the functions of the nose by filtering the air, condensing moisture and returning it back to you, reducing the evaporation water loss. They are also "closed" systems so all air is processed. There will be more written about HME's in the future.

Conclusions

Always protect your stoma!

Be aware of your surrounding, humidity levels, dust and debris levels, filter accordingly.

Keep yourself hydrated, drink plenty of water. Coffee, tea and alcohol don't count as they are diuretics and cause you to eliminate water.

Be diligent about noticing any changes in your mucus and take appropriate actions.

Ask questions if you are unsure or unclear.

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HOW TO SET THE INDIVIDUAL BUTTONS ON A DIGITAL SERVOX
by Randy Lempster

1 Unscrew the bottom of the Servox and remove the battery.

2 Slide off the cover – hold onto the top of the unit.

3 Replace the battery and the end cap.

4 Looking at the electronic circuit board you will see 2 very small switches – these are called DIP switches.

5 To set the level of the upper button of the Servox, slide the 2nd (right hand) switch to the down position and leave the 1st in the up position.

6 To increase the frequency of the sound, press the upper button as many times as necessary to get the right tone. To lower the frequency, press the lower button.

7 When you have the desired levels for the upper button, reverse the order of the DIP switches – 1st down & 2nd up. Then repeat Step 6 for the lower button.

8 You will have to adjust these levels quite a bit as each push of the buttons only increases/decreases the frequency by 1 hertz.

9 Once you are satisfied, set both DIP switches to the down position, remove the end cap & battery and replace the cover – then replace the battery and end cap.

10 You will probably find that the tones will change when the cover is replaced so you may want to replace the cover from time to time to see what things sound like.

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This information was taken from the “Headlines” monthly newsletter published by Pat Sanders of Alabama. This and other newsletters can be found on the IAL Larynxlink web site in their Newsletter section.

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IPTAAS
By Brian Gardner

That's an unusual word - what does it mean? I didn't know myself until the other day. It turns out that as far as laryngectomees are concerned it is a very important word, especially for our country members. In brief, it all started last month when I received a letter from John Lovett, Secretary of our Hunter Valley Branch. John was seeking assistance for Colin and Robin Laird, who live at Forster. Colin had his laryngectomy last November and then earlier this year had to start post-operative radiotherapy treatment. Colin had to travel from his home in Forster to the Mater Hospital, Newcastle, a distance of 176km each day for five weeks. Obviously Robin could not drive Colin down and up every day so it meant a week stop over, home for the weekend and back again etc. etc.

That's when IPTAAS comes in or at least should have, but NO! Let me explain……. IPTAAS is the Isolated Patient Transport Accommodation Assistance Scheme. In principle it means that whilst you are receiving specialist medical treatment at the discretion of your local Area Health services you are eligible to receive financial assistance, albeit that assistance is $33 per night per single room, or $40 per double room, and a fuel subsidy of 12.7c per kilometre where travel to the specialist is by private car or economy class surface rail or bus ticket. But wait, there's more to come. The Lairds found themselves ineligible for the financial assistance because they lived 176km from Newcastle, not 200km as required by the NSW Government. In Victoria, South Australia and Western Australia the distance is only 100km one way, in Tasmania it is 75km while in Queensland it is only 50km.

But wait, it's not over yet. It appears that under the Scheme your local hospital's Welfare Officer retains a discretionary power in special circumstances. I don't want to turn this into an attack on the poor state of affairs in the State Health Department but I do have to be critical of same. As you know the system has been regionalised and a number of centres are under the one umbrella, administration and budget-wise. In doing so the Health Minister has been smart enough to totally isolate himself, surrounded by bureaucrats. Any lobbying, letters and/or requests are simply referred back to your Regional Administrator's office.

So what the Lairds were required to do was approach the Welfare Officer at the Mater Hospital Newcastle and present their case for special dispensation. The Welfare Officer has the power to make a decision or forward the application with her comments and recommendations to the Regional office for a final decision and we all know what that would have been - the 24km short would have raised its ugly head.

We all know that most stories have a happy ending and in this case the compassionate and devout Sisters at the Mater Hospital found a way to assist and with the help of other friends and family the Laird's problem was resolved. But this story should not end there. You watch, now the Association is aware of the IPTAAS problem it will reappear again. Members traveling from the country for their operations and having to return to the city or a regional centre for their therapy and the 200km will come into play.

On a more positive note I can report that the Cancer Council of NSW is acutely aware of this problem and the significant limitations of the NSW Scheme, in relation to the distance eligibility criteria and is campaigning strongly to have the IPTAAS guidelines amended to reduce the disadvantage and burden of NSW patients who need to travel for specialist treatment. The Cancer Council of NSW has scheduled a forum in the immediate future to further raise awareness of the problem and yours truly has been invited to attend and speak.

If you have any constructive information or have a specific problem in this area let the Association know. Better still, you can contact Anita Tang, Director - Health Strategies, at the Cancer Council on 9334 1963, fax 9326 9328, or her Assistant, Sarah Ford on 9334 1753 and talk to them personally.

Some time this week I am to receive brochures and postcards and other resources about the IPTAAS saga which I intend to mail out to all the Branches and hopefully receive some useful feedback to present at the upcoming forum.

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IPTAAS CONT'D

Following last month’s article by Brian Gardner on the Isolated Patients Travel Accommodation Assistance Scheme, we have been forwarded a copy of a letter from the office of the New South Wales Minister For Health, signed by Cherie Burton MP, Parliamentary Secretary for Health. This letter demonstrates that there is a little bit of wiggle room around the 200km limit.

I write in response to your representations of 24 January 2005 to the Minister for Health, the Hon Morris Iemma MP, concerning distance calculations made for the purpose of assessing a person’s eligibility for the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS). The Minister has asked that I reply on his behalf. The delay in responding is regretted.

I am advised that IPTAAS Offices use a modified version of the software relied upon by the Ambulance Service of NSW for determining distances for their billing purposes. This system ensures that there is a consistent and impartial means of calculating distances traveled for the purpose of assessing a person's IPTAAS eligibility.

IPTAAS budgets are finite and there is a consistently high demand for assistance under this Scheme. Guidelines are in place to ensure that all applications are assessed in a fair and equitable manner so that there is a consistent approach across the state and that assistance is maximized to those people who are most disadvantaged by where they live in accessing specialist health care.

The IPTAAS Guidelines state that the primary target group for IPTAAS is patients in isolated and remote regions of NSW who need to travel more than 200kms (one way) from where they live to access inpatient or outpatient specialist medical treatment not available locally. Flexibility may be applied for specific categories of patients who reside marginally inside the 200km distance limit. Specifically, these are patients/guardians who are pensioners, Health Care Card holders or people with a weekly income equivalent to or less than the pension who reside within 180-200km (one way) and those with chronic medical conditions who travel 150-200km (one way) more than twice a week to access specialist medical treatment.

I trust that this information clarifies the situation. Should any of your constituents wish to discuss IPTAAS further, please advise them to contact Ms Janice Moreland, Statewide Coordinator for IPTAAS, on 1300 762 279.

Yours sincerely

So we now have a little more clarity regarding IPTAAS, and a contact.

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IPTAAS REVISITED

Back in June 2005, Brian Gardner wrote an article about the Isolated Patient Transport Accommodation Assistance Scheme (IPTAAS), relating the problems being experienced by the Laird family of Forster having to travel to Newcastle for radiotherapy.

The Daily Telegraph on 14th, March ran a story on a young girl, also from the Hunter Valley, with leukemia who has to travel to Newcastle, 120km away, for treatment.

Patients in NSW must travel over 200km before they can access IPTAAS, which is double the next highest threshold in Victoria, and four times the 50km benchmark in Queensland. The Cancer Council in alliance with eight other organisations is lobbying the State Government to reduce the travel-to-treatment guidelines to 80km.

A spokesperson for Health Minister John Hatzistergos confirmed they were considering amending the program to make it easier for people to obtain transport assistance and to increase the amount of transport assistance.

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JUSTMED HANDS-FREE ARTIFICIAL LARYNX

A U.S. Company named Just Med, Inc., has developed a hands-free artificial larynx. At the time of writing this, it is not available in Australia but it would appear to be a step in the right direction for users of electro-larynges.

The JusTalk Digital Audio Larynx is the world's first hands-free, switchless artificial larynx. You wear a headset which is held on firmly with cheek pads with a boom microphone that sits in front of your mouth. The headset is connected to a speaker which can be positioned anywhere on your body or clothing. Once you have your settings organised; pitch - high, medium, low, and volume for the speaker and headset from a whisper to very loud, you are in business. The system switches itself on when you talk and off when there is a pause.

As this is very new technology I imagine that there will be a few initial hiccups with the system before it is on a par with a proficient ordinary artificial larynx user. However, Just Talk will have a software upgrade capability which should mean improvements can be incorporated at a low cost without having to replace the entire unit. Anyone who requires the use of both hands and to talk at the same time, this gadget could prove a godsend. The rechargeable battery used with Just Talk should provide about 20 hours of continuous operation. Also, should you be somewhere with no facilities to use the battery pack recharger, the battery pack can be replaced with 3 AA alkaline batteries.

The company is working on a phone adapter that will allow you to plug into a cell phone giving hands-free use of both the phone and the artificial larynx.

So it is early days yet, but this looks to be the future of artificial larynges. If you would like to see the full details of the Just Talk Digital Audio Larynx go to www.justmed.com.

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LARYNGECTOMEES AND ALCOHOL

Looking through old newsletters the other day I came across this article written by an Anthony Duffy, a nurse at St George's Hospital, Tooting, London, which had originally appeared in the British CLAN newsletter.

Not many people would argue with the statement that the majority of cancers of the head and neck occur in people who smoke and/or drink heavily. Certainly the larynx has shown itself to be rather susceptible to the effects of tobacco and alcohol and, in my experience, few laryngectomees have not indulged, at some point, in both.

Following a laryngectomy smoking is very difficult and most (but certainly not all) laryngectomees never smoke again. However the ability to drink has not changed and any dependency on alcohol, whether psychological or physiological, can be continued virtually unhindered.

Coping with loss.

In nursing we are taught to be closely aware of our patients' awareness of self body image.

Frequently following surgery involving the loss of something - for example the amputation of a limb, a mastectomy and so on - the patient feels inadequate and "less human" than before.

There are recognized stages of loss - denial, anger, depression and reconciliation - which the surgical patient experiences and it is a nurse's role to assist the patient through them.

The patient may need to reassess his social, professional and private relationships, an activity that can cause much doubt and stress.

If the discharge occurs too early without the stages of loss being completed, then the patient will also be discharged full of insecurity and worry. So the comfort that proper counseling could have given may be sought elsewhere, often from the bottle.

I am sure laryngectomees will remember the stages of loss they felt and the difficulties they faced coming to terms with being "neck breathers".

Some may feel they were discharged before they were ready, and may have escaped from their worries by indulging in old habits such as alcohol.

But whether the cause of heavy post-laryngectomy drinking is either dependency, escapism and stress relief, or pure delight with alcohol, my conversations with laryngectomees lead me to believe that many drink heavily, thus necessitating this article.

The damaging effects

Having a laryngectomy you will understand the physically damaging effects high intakes of alcohol can have. It can also cause damage to, and cancer of, other organs such as the oesophagus, stomach, bladder, liver and so on. It can cause, not cure, psychological problems and induce high blood pressure, heart and brain problems, poor nutrition and poverty.

Stoma care will suffer during long drinking sessions and unnecessary accidents may occur.

Alcohol is not inherently wrong, but over-indulged it is. All drinkers should recognize the difference between safe and dangerous consumption.

The safe limit for men is up to 21 units a week, and up to 14 units for women.

How much is one unit worth? - one small glass of wine, or one glass of sherry, a middy of beer or cider or one measure of spirit.

When to reduce

If you are a regular drinker it is a good exercise to add up the amount you consume over a seven-day period.

If you are over the 21 or 14 unit limit you should consider reducing your drinking.

If you are over 40 units a week then you are damaging yourself and should definitely cut down your intake.

If reducing is a problem because alcohol is an instrument used to hide from problems and difficulties (whether or not they are related to your laryngectomy) then you may wish to seek external help.

When I asked the local Drugs and Alcohol Liaison Team for a list of local clubs and agencies organised to help problem drinkers, I was amazed to be given a list of more than 20 different organizations for all different types of people and social groups.

If you feel that you, or a fellow laryngectomee would benefit from such help, then I am sure that similar lists are available from your local hospital or GP.

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LARRYS AND BREATHING
by David Blevins

David Blevins is a retired college professor. He is the former editor of the "WebWhispers Journal" (now called "Whispers on the Web")—the newsletter of the Internet-based laryngectomee support group, and the newsletter of the International Association of Laryngectomees, "The IAL News." He lives in Virginia Beach, Virginia on the Atlantic Ocean side of the U.S., continues to be active in his local laryngectomee support group, and enjoys speaking to high school students about the dangers of smoking and to medical and speech pathology students about laryngectomee rehabilitation.

The Problem

The least understood consequence of becoming a laryngectomee is the gradual decrease most of us experience in lung capacity and the efficiency of our breathing process. The respiratory process where oxygen is taken in and carbon dioxide is expelled declines in larys along with the volume of air our lungs can hold in the months and years after our surgery, unless we work to keep this from happening. This hidden side-effect for laryngectomees stands in stark contrast to the consequences which are more obvious such as loss of the original voice and having to breathe through the stoma.

We notice other consequences soon after surgery such as not being able to smell much and having to deal with a flow of mucus coming from the stoma. But this loss of breathing capacity and efficiency is not as obvious, and is not even well understood by many medical professionals, particularly in the U.S., since much of the research on this issue has been done in Europe and Japan. Some medical personnel even continue to hold outmoded beliefs including, for example, that laryngectomees are actually better off since they use less energy to breathe than non-larys. Research during the last couple of decades has clearly shown this idea to be wrong.

Why it Develops

To understand why we lose lung capacity and breathing efficiency requires that we understand the changes in our anatomy which occur with the larygectomy surgery. The before and after diagrams below show that the surgery permanently separates the lungs and most of the trachea (windpipe) from the upper part of the respiratory system—the nose, mouth, and throat (pharynx). This bypassing of the nose, mouth and throat actually does make it easier for us to breathe, assuming that the stoma is of adequate size. But rather than being an advantage, this turns out to produce the problem. Because it is easier for us to breathe our lungs no longer inflate and deflate as fully as they did before the surgery. And over time, this reduces the useable capacity, or volume, of our lungs. An expression from physical fitness applies here—"Use it or lose it".

The reason it is easier to breathe and we lose lung capacity is that the upper part of the respiratory system also provided resistance to the flow of air. Our incoming air had to enter the two small nostrils and move in an upward and then curved direction past nose hairs and sticky mucus lined tissues on its way down to the lungs. The lungs had to work harder by more fully inflating to move air through that long pathway. Now it takes a shortcut in and out the stoma, there is much less resistance, and the lungs do not fully inflate. According to the experts, the critical factor occurs with exhalation (called "back pressure" or PEEP-Positive End Expiratory Pressure). It is this part of the breathing process which prevents the collapse of the alveoli, or little air sacks, in our lungs.

A related idea is referred to as dead air. Before becoming a larygectomee, in order to push the carbon dioxide out from our lungs we first had to push the dead air already in the trachea, throat, mouth and nose out ahead of lung air. When we were ready to inhale, we had to first inhale all of that dead air which did not contain much oxygen before the fresh air containing more of it reached our lungs. In order to get the oxygen we needed we had to more fully expand our lungs to make room for the dead air and the fresh oxygen-rich air. You might be able to visualise the dead air issue by imagining that you are breathing through a long tube. Then imagine how much easier it would be to breathe if the tube were much shorter.

What Can Be Done About It

There are at least three ways in which laryngectomees can lessen the deterioration of their respiratory systems: exercise, wearing a type of HME (Heat/Moisture Exchange) filter which has the resistance feature, and practicing with a modified incentive spirometer. I will emphasize the use of the incentive spirometer here, but briefly discuss the other two approaches.

Along with "use it or lose it," another expression used in physical fitness is "no pain, no gain." And the more times you engage in activities which cause you to have to catch your breath, the better for your lungs. Laryngectomees do engage in all kinds of strenuous physical activities. There was a recent article on a Larry from the Netherlands who competed and finished the New York City marathon this past autumn, and at least some larys participate in virtually any physical activity you can imagine.

If your idea of exercise is to get out of bed or make the journey to the refrigerator for a cold beer, you may need to begin with a modest exercise program. Walking is a good way to start a physical fitness regimen. The faster you walk the more your heart and breathing rates go up. And the more you exercise your lungs the more they retain volume and efficiency. If you have any doubts about your ability to exercise safely, get a physical check-up with your doctor before beginning. But frequent exercise obviously helps to maintain lung capacity and breathing efficiency.

HME (Heat/Moisture Exchange) filters have been referred to as "artificial noses". They perform several functions of the nose such as filtering the air we breathe, warming it up, and retaining some of the moisture in exhaled breath within the filter until we inhale again. It turns out that before becoming a laryngectomee the ideal condition for air in our lungs was air filtered clean of impurities, at close to the body temperature of about 98 degrees Fahrenheit (36 C), and close to 100% relative humidity. HMEs cannot duplicate our pre-lary air conditioning system, but can significantly improve it.

In addition to these three functions of filtering, warming and humidifying, HMEs can also provide some resistance to incoming air and make us work a little harder to breathe and thereby retain better lung capacity and efficiency. Research has demonstrated that the sooner after the laryngectomy surgery an HME with resistance is used the more it is tolerated and likely to continue to be used. After the lung capacity has decreased it is more difficult to get laryngectomees to use the HMEs since they may make it feel like it is too difficult to get their breath. Several brands of HMEs are also available for use by hands-free TEP prosthesis speakers (ATOS Provox, InHealth and Kapitex).

HME brands which are specifically designed to emphasize resistance are the Provox finger occluded cassette which comes in two levels of resistance (regular and high flow), and the Kapitex brand which comes with three levels of resistance (night-greatest resistance; day-regular resistance; and a minimum resistance one for use when exercising). Some larys can use the Provox Trichinaze Plus HME system which can be used without an adhesive base plate. This is similar to the use of the ATOS or the In Health filters with the Barton-Mayo Button (Larry tube). Both the Barton-Mayo and Trachinaze Plus must be measured by a clinician for both diameter and length. By making you work a little harder to breathe, the HME forces your lungs to more fully deflate, and then expand.

A third approach to retaining lung capacity is the use of the incentive spirometer. The one shown in the photograph costs about $12 U.S. Choose the type with a one way valve. Hospitals often provide patients with these instruments to work with prior to discharge, particularly if the person was on oxygen while in hospital. The incentive spirometer can be modified for laryngectomee use by substituting a large diameter baby bottle nipple for the mouthpiece. Just cut the nipple part off the baby bottle nipple making the hole smaller than the diameter of the spirometer’s breathing tube. Slip it over the tube.

To use the spirometer, (1) hold it upright (2) exhale (3) place the nipple over your stoma (make a good seal) (4) inhale slowly to raise the piston in the chamber. The spirometer shown will indicate if you are inhaling at the recommended rate, or speed. Continue inhaling and try to raise the top of the piston as high as you can (5) when you cannot inhale any more, remove the mouthpiece and hold your breath for at least 10 seconds (this part of the process has been shown to cause the lungs to inflate to their maximum extent). Rest, and then repeat the process. Cough when you need to. Doing this exercise throughout the day is most beneficial. Move the indicators on the spirometer when you increase the volume, and chart your progress.

The amount of decrease in lung volume and breathing efficiency laryngectomees experience depends on the individual and his or her general activity level. But since many of us became laryngectomees as a result of smoking and are vulnerable to developing additional breathing problems, doing what can be done to retain the best and most efficient respiratory systems makes a lot of sense.

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NECK SPASM

A while ago David Blevins wrote on a laryngectomee support site that cricopharangeal spasm, also called hypertonicity, is excessive resistance to the opening of the top of the esophagus. The muscles around the top of the esophagus are not loose enough to relax and permit the passage of air upwards for TEP or esophageal speech, or, for some, food and drink downwards.

It is a common diagnosis in those who are unable to get TEP (Tracheo-Esophageal Puncture) speech via a prosthesis which takes air from the trachea and into the esophagus where it vibrates the top of the esophagus producing the base tones for speech.

Sometimes the passage of time or "low-tech" solutions such as relaxation techniques can solve the problem as we learn new ways to swallow, and with the minimum amount of force and pressure necessary to get the job done.

One personal theory David has is that for some people air moving up the esophagus feels like regurgitation, and we resist that by clenching the muscle around it.

Sometimes a modified barium swallow procedure is done to rule out a stricture, or kinking of the esophagus; although the order of the procedures may be reversed. The spasm is often confirmed as the problem by injecting a numbing agent in the xylocaine (lidocaine) family into the muscle around the esophagus in order to relax it. If the patient can then speak or swallow, then the diagnosis is made.

At this point Botox may be tried, although for most people it must be repeated every six months or so. A more permanent solution is the myotemy surgical procedure. Typically it is a relatively simple one requiring, at most, an overnight hospital stay; but it is often done on a half-day schedule...in early, out by afternoon. They are often able to go in on the suture line from the laryngectomy so there is no new scar. They carefully cut through the muscle surrounding the esophagus and scrape the ends apart to minimize the chance that the muscle will grow together again.

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PADP

Firstly, what is the PADP? It is the Program of Appliances for Disabled People. The program is run by the NSW Health Department to assist eligible people who have a long-term disability to live and participate within their community by providing appropriate equipment, aids and appliances. Laryngectomees fall within that definition.

In general terms, it is controlled by regional Lodgement Centres. Residents of Green Valley would come under the Liverpool Hospital, Hurstville residents the St George Hospital, North Sydney residents the Royal North Shore Hospital and so on.

Applications for assistance should be made on the PADP form available from your local Lodgement Centre and that application must be accompanied by a referral from your specialist medical practitioner. You must also include a copy of your latest ATO Notice of Assessment or your Centrelink pension or Health Care Card.

Having said all that, the Association is now aware that some of our members who are receiving the PADP benefit are having problems with their local PADP Advisory Committee - ARE YOU ? If so, let the Association know.

Those members who, for instance, use the low pressure voice prosthesis (Blom Singer valves) generally use a valve for 3-4 months before general malfunctions begin. It starts with the shunt not closing properly, allowing fluid to leak into the wind pipe causing coughing and discomfort. However, that is a very broad statement - for those of us who suffer from Candida (a yeast type fungus) the valve may collapse in 5-6 weeks. You contact your local Assessor for a new prosthesis - so you can talk! - only to be told that is must be a faulty or damaged valve and for you to contact the Australian distributor, Monarch Medical, whose offices are in Brisbane. When in fact the valve is not faulty - its function has collapsed because of a problem attributable to your initial disability. You are then forced to purchase your next replacement valve at your own cost which is now in the vicinity of $100.

For those who are having such a problem and if you are concerned, please let us know. The speech therapists or even PADP co-ordinators who read this newsletter may also wish to comment.

My home phone is (02) 9452 2858 or email lansw@bigpond.com.au

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QUALITY OF LIFE SURVEY

Fiona Duncan of The University of Plymouth conducted a survey of laryngectomees using different methods of speech i.e. TEP, oesophageal and electro larynx against an aged matched control group to try and determine the quality of life experienced across the different methods of voice restoration.

Obviously the control group experienced a better quality of life than those who have had a laryngectomy regardless of the speech method employed. However, it is a case of swings and roundabouts in quality of life differences between the various methods of voice restoration. It appears that the method of communication itself is not as important as you might think but how you view the quality of social support you receive following laryngectomy that seems to have a high bearing on your quality of life.

For some reason, women experience a lower quality of life in some categories surveyed, such as physical function, energy levels and experiencing bodily pain. Males seem to have a more positive view of the availability and accessibility of various types of support for laryngectomees.

So although quality of life decreases following laryngectomy particularly with regard to energy levels together with physical function and physical role limitation, voice perception following restoration doesn't appear to matter as much as people had thought.

The most important factor, as mentioned before, is the social support of family and friends, (and not forgetting Speech Language Pathologists), in helping the laryngectomee to navigate their course through their new way of life. Also the role of laryngectomee support groups can't be underestimated in providing support and advice. As most respondents to this survey came from support groups it was a bit hard to quantify the value of belonging to a support group as opposed to not belonging to one.

Even though voice quality doesn't necessarily affect quality of life, having a voice above a minimal level seems important so some sort of voice restoration should be adopted following total laryngectomy.

On a personal note, the researcher says that one of the reasons women feel they have a reduced quality of life is because all forms of voice restoration produce a low pitched hoarse sound causing them to be mistaken for men in situations such as telephone conversations. Well I work in a job where I spend a lot of time on the phone and I am forever being mistaken for a woman, not that it upsets me unduly.

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RESEARCH FUNDING

At the April, 2006, monthly meeting Julia Maclean and Professor Ian Cook made a pitch for research funding into Dysphagia in laryngectomees to be undertaken on a part-time basis by Julia Maclean through Latrobe University.

When a patient is about to undergo laryngectomy and is being reassured about their prospects, survivability is emphasized and the various pros and cons rarely touch on the possibility of experiencing swallowing problems. However, the nature of a laryngectomy results in many laryngectomees developing swallowing problems at some point after their operation.

The proposed research then, will attempt to identify the various problems caused by the surgery and the changing structure of the throat from both the surgery and any radiotherapy and, hopefully, propose modifications to surgical procedures or radiation levels with a view to giving future laryngectomees fewer swallowing difficulties.

Apparently there are 42 muscles used when swallowing, a fairly complicated manoeuvre when you break it down, and a radical laryngectomy cuts through nerves, muscles, veins, tendons etc, not to mention any radiation or chemotherapy that may also be required. Professor Cook, a gastroenterologist, has spent 18 years studying the swallowing mechanism and will be available to be consulted throughout the research period along with a number of doctors specialising in related fields, including Alison Perry from Latrobe.

The equipment that will be required is already currently available. Laryngoscopes, micro cameras, electrodes and various medical instruments and, I imagine, computer, record keeping and storage facilities.

After a long question and answer session a majority of those attending the meeting approved funding the research up to $30,000 per year for up to a period of three years. Julia will report back to the Association on a six monthly basis, which will be reported in "Still talking".

How successful this research will be has yet to be determined. Maybe it can form the basis for a longitudinal study over 5 to 10 years of a group of laryngectomees from the time of their surgery, to monitor changes to the neck area.

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RUNNING ON EMPTY

This is another book review. The author, Robyn Koumourou, lives in Melbourne and was diagnosed with hypothyroidism at the age of thirty. Since then she has been involved with Thyroid Australia in telephone support, research and educational seminars on thyroid disease.

Apparently 1 in 14 Australians suffer with a thyroid condition with hypothyroidism being the more common disorder. Thousands of Australians suffer with unrelenting fatigue, weight gain, muscle weakness, recurrent infections, cold intolerance, hair loss, skin conditions and depression, never considering a malfunctioning thyroid gland as a possible cause of their ill health.

Often an underlying thyroid problem is overlooked or misdiagnosed and sometimes poorly investigated and inadequately treated. The classic signs and symptoms of hypothyroidism may mistakenly be attributed to depression, stress, anxiety, age, another condition or simply seen as psychosomatic. Those of us who had a thyroidectomy along with the laryngectomy know only too well the difficulty in maintaining the correct balance of thyroxine to avoid the worst of the symptoms.

Robyn's book 'Running On Empty' explains the thyroid gland and hypothyroidism in easy to understand, matter-of-fact language. I don't know the ISBN number, but you can find out more about the book by writing to Cocoon Books, PO Box 7429, Upper Ferntree Gully, Vic, 3156 or check out their website at www.cocoonbooks.com.

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SHOWER SHIELDS

One of the main worries when becoming a laryngectomee is the possibility of getting water in the stoma and each day there is the prospect of that happening whenever you take a shower. The water jet can be avoided by strategically placing yourself and covering the stoma with one hand when facing the water flow but that means having to keep yourself continually aware of where you are in relation to the water.

The best way to take a shower has to be using a shower guard of some kind, like a baby's bib worn back to front. A shower shield from our Welfare Officer would be the ideal way to go, they are sturdy, comfortable to wear and allow for easy breathing when wearing. They are very long lasting except for the velcro ties, however they are readily replaced, just buy some adhesive velcro from the haberdasher or supermarket and sew onto the shower shield through the holes left where the discarded velcro was attached. The velcro can be replaced a number of times.

Wearing a shower guard makes life a lot easier especially when washing your hair, doing that one-handed can be really tricky. Buying a shower shield or making yourself one is a very good investment of time or money to give yourself peace of mind, enabling you to take your daily shower without worrying about water getting into your stoma.

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SUPPORT GROUPS

This article appeared a couple of years ago but I thought it worth putting in the newsletter again with all the talk about lack of interest in the Association recently. Maybe the ideas expressed here no longer apply. You can decide for yourself.

After laryngectomy a person is confronted with a whole new way of life, no matter how much everything may seem to remain the same.

The laryngectomee may become antisocial from experiencing difficulty in talking in group situations, in a noisy environment or where he feels he is breaking the flow of conversations through his difficulty with speaking. A laryngectomee support group is the ideal place to practice socializing where 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 laryngectomee experience. Hospital professionals give general advice and information immediately before and after 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 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.

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TEP COMPLICATIONS

I was lucky after my laryngectomy and subsequent radiotherapy that when my Speech Pathologist first inserted a voice prosthesis in the tracheoesophageal puncture (TEP), I was able to talk right away and have had no major problems since. However, this is not always the case with every patient.

Studies have shown that failure rates range from 3% - 15% with common causes of voice restoration failure including patient motivation and learning capabilities. Also, patients with poor vision, arthritis or neurological disabilities have been found to be poor candidates for the TEP procedure.

Another cause of failure is pharyngoesophageal spasm, which appears to be caused by reflex contraction of the cricopharyngeal (also known as the upper esophageal sphincter) and constrictor muscles when the mid-oesophagus is distended with air and possibly from a reaction to reflux. It seems to be a cause of TE speech failure in 10% - 12% of patients. Further surgery including cricopharyngeal and constrictor myotomies and pharyngeal neurectomies are options for pharyngeosophageal spasm. Botulinum toxin (Botox) injection has also been successful in facilitating fluent TE voice production after muscle spasm and should be preferred over further surgery.

Other complications associated with TEP are: bleeding from around the tract (usually granulation tissue), air in the stomach, saliva leaking around or through the prosthesis, aphonia during radiotherapy and coughing at night. More serious, though rare complications include: mediastinitis, cervical cellulites, cervical spine fracture, and aspiration of the prosthesis, which has been discussed in 'Still talking' a number of times.

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THE LARYNGECTOMEE ASSOCIATION OF NSW

My name is Brian Gardner. I am a retired Chief Inspector of the NSW Police. I have been a laryngectomee since 1988, and I am currently the President of the above association.

In brief terms, the Association is dedicated to the welfare of laryngectomees and those afflicted with similar disorders. There are over 2,000 laryngectomees in Australia and records indicate about 500 new cases of laryngeal cancer are diagnosed each year. In NSW there are some 400 known laryngectomees.

At present we have over 400 financial members including about 150 speech pathologists and doctors, who all receive our monthly newsletter. In NSW our monthly meeting is held at Strathfield and branches of the Association are located at Parramatta, Liverpool, Dubbo, Newcastle, Canberra, Lismore, Albury and Illawarra.

In February this year at our annual general meeting our guest speaker was Elise Baker, one of the lecturers from the School of Communication Sciences and Disorders. At her request I am presenting this brief resume of our Association in an endeavour to motivate and assist all the Speechies to make contact and better communicate with their local branch because the Speech Pathologist is an integral and important part in the successful rehabilitation of any laryngectomee.

One of the important functions of the Association is the encouragement of our members and the maintenance of an exchange of ideas and methods for our members to acquire audible speech and again it is in this area we rely on our friendly Speechies.

The Association, in general terms, is a support team and the members of the team draw on the experience of fellow laryngectomees and their families before and after surgery.

One of the most important members of this team is the Speechie. The first objective after our operations is to get our voices back. It becomes a joint effort between the 'Larry' and his Speechie to achieve effective communication - whether it is by oesophageal voice, using a voice prosthesis, or with electronic aids such as a Servox, Cooper-Rand or DSP-8. Regardless of which method is used, us 'larys' could not succeed without our Speechie. During my term as President I have traveled around and visited the Association branches and without doubt the regional branches would not exist without the active participation and support of the local Speechies and I take this opportunity to personally thank all those involved.

One of the problems the Association encounters is falling membership numbers. To some extent this is caused by an ageing membership - most laryngectomees have their operation late in life and after all - we are a dying breed; it may be the $20 membership fee; or the hesitancy of larys to declare the disability and/or join any club or association. It is however my firm belief that the main reason behind declining membership is that the Association is not being made aware of people who are having the operation. It has been raised that it may be unethical for the surgeon to inform a representative of the Association of a pending operation - I can understand and appreciate this line of thought. So how do we find out? In almost every case the Speechie at the hospital involved makes contact with an authorised Association hospital visitor who then, at the request of the patient and family, makes a pre and post operative visit to answer queries and assist with any concerns. Hence we make personal contact with a prospective member. Sometimes this does not occur because the patient refuses to have a visitor or there may be a breakdown in communication. In this regard I would ask all Speechies concerned (and those shortly to finish their courses) to make contact with the Association and find out who their authorised hospital visitor is and their contact number and to establish that important working liaison.

My second request involves the management and distribution of the Association's Patient Packs. Briefly, the Association prepares and distributes a pack to all persons who are about to undergo a laryngectomy. The pack contains stoma covers and a selection of literature that will assist the patient. Each pack costs the Association over $14 and we distribute to over 20 hospitals throughout the State at an overall annual cost of approximately $2200. It appears that the Speechie tends to be the main avenue through which the packs are issued to patients. We would like to see better control and management of the issue of these packs.

Finally, I seize this opportunity on behalf of all laryngectomees to personally thank all Speech Pathologists for their help, counsel and guidance in the rehabilitation and recovery of our voices and communication - for without you it would not have occurred. As I stated earlier it is a team effort and your efforts have firmly established the Speech Pathologist as the Captain of the team.

Anybody who desires further information about the Laryngectomee Association of NSW can contact me by telephone (02) 9452 2858, email: lansw@bigpond.com or the Association's Welfare Officer, Carol Gardner (02) 9452 2858.

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THYROXINE AND CELERY SEED

On May 23, 2005, ABC Radio National Health Report's Norman Swan was interviewing Geraldine Moses, who is one of the people running the Adverse Medicine Events Line at Brisbane's Mater Hospital. The Australian Council on Safety and Quality in Health Care is the body funding the service.

Apparently the project began with investigating the interaction of celery tablets with thyroid medication. Celery seeds contain substances including volatile oils, flavonoids, coumarins and linoleic acid. They are available as fresh or dried seeds, tablets, capsules of celery seed oil or celery seed extract in alcohol or glycerine.

Celery seed is a diuretic and is used to help treat urinary tract infection, as an anti-inflamatory for arthritis sufferers and can help reduce blood pressure. Pregnant women are advised against using it as it may stimulate the uterus and cause miscarriage.

Geraldine Moses said on the Health Report that the whole case series was started by a single case report from a lady who was taking thyroid hormone tablets but her doctor accused her of not taking the tablets. She said I am taking my tablets but I have started taking celery. When she stopped taking the celery her thyroid levels went back up again, when she started them again it fell again, so her stopping and starting proved that it might have been an interaction. We've now got 12 case reports of celery tablets interacting and causing the thyroid levels to drop.

A pharmacokinetic study of the thyroxine - celery interaction is under consideration by the Mater Hospital Pharmacy Services' Therapeutic Advisory Service. Since consumers often fail to volunteer details of self-medication with complementary medicines, prescribers and pharmacists should ask directly what herbal medicines consumers are taking. If celery seed tablets are being taken at the same time as thyroxine, it is strongly recommended that thyroid function tests are closely monitored and any suspected interaction reported.

The Adverse Medicine Events Line can be contacted online at http://www.mater.org.au/ame and by telephone on 1300 134 237.

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THYROXINE STORAGE

In June 2003, Sigma Pharmaceuticals, the manufacturers of thyroxine in Australia; Oroxine and Eutroxsig, were advised by the Therapeutic Goods Administration that those drugs were now required to be refrigerated at all times.

Previously you only had to keep them in a cool, dark, dry place below 30C. The drug administration discovered that the potency of these products were reduced at the end of their shelf life and reduced the shelf life from 24 months to 12 months. However, this has been extended to 18 months as long as the tablets are kept refrigerated. Both Oroxine and Eutroxsig, which are identical products in every respect, should only be kept un-refrigerated for up to 4 weeks, below 25C and out of the light.

If people have difficulty in maintaining their routine by having to relocate their thyroxine to the fridge, they can obtain a seven-day pill box which would only necessitate going to the fridge once a week and thereby maintain the routine they currently employ. These pill boxes are particularly useful if you have a regimen requiring a different dosage each day.

The foregoing shows the importance of not using your Oroxine or Eutroxsig past the use by date as that indicates when the product may start losing its potency. Whenever you fill your prescription for thyroxine, make sure the pharmacist does not obscure the expiry date. The pharmacist will also be keeping thyroxine in a refrigerator.

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