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MANY PEOPLE DO NOT COMPLETE RADIOTHERAPY ( NOV '09)

A report (in the September issue of the Archives of Otolaryngology - Head and Neck Surgery) is pertinent to my own situation. After my laryngectomy I onsidered not going ahead with radiotherapy for several reasons. Firstly the ordeal of four weeks in hospital and the trauma of major surgery somehow made radiation seem rather insignificant. Also, after a few sessions of radiotherapy and the side effects - pain, inflammation, extreme tiredness etc etc, I felt that it was just prolonging my inability to feel well again.

At the time of radiotherapy I had other problems too - I'd started a new job on a Monday and was diagnosed with cancer on the Tuesday. So after coming out of hospital, I was anxious to try and remain employed (I went to work in the mornings and had radiation in the afternoons) - not just for financial reasons (although I had found a new place to live just before my operation) but also because I knew it would help me get back to a normal life. Doctors had said the sooner I got back to my usual routine, the better for my health. And of course, there were the problems I think most laryngectomees go through. It was a period of adjustment to having become a laryngectomee - learning to look after my stoma, changing my prosthesis, coping with a changed appearance, changing my diet, and
wondering whether people would treat me differently now etc. There were emotional problems too - anger that the cancer had happened to me, regret about possibly not having looked after my health in the past, depression,
frustration with my inability to speak, and the worry and insecurity of knowing I needed regular check ups for the next five years. Doctors had advised I would need to get through the next five years without a recurrence of the cancer before I could consider myself cured.

So I decided to give up radiotherapy altogether. I almost missed it on a few occasions and had to be coerced to keep going.

Would it have mattered a great deal to my health anyway? Well, according to the latest US report, yes. By using Medicare details of head and neck patients between 1997 and 2003, US researchers Megan Dann Fesinmeyer PHD of Fred Hutchinson Cancer Research Center Seattle, and colleagues found a link between the dose and
duration of radiation, and tumour control and survival. They found that 39.8% of patients had interruptions in radiotherapy or failed to complete it. Interestingly, patients who had surgery at a tumour site were more likely to complete radiation with no interruptions (70.4 percent compared to 52% who did not have surgery).

It is believed that the reason why surgical patients are more likely to complete radiation is that "characteristics which make patients good candidates for surgery, may also make them more likely to complete radiotherapy." Healthier patients are usually chosen for surgery, and it is also thought that people who are willing to have major surgery may also be willing to complete radiation despite the side effects.

Patients least likely to complete radiation are those with other illnesses as well as the cancer, those who had concurrent chemotherapy, and those whose cancer had spread to the lymph nodes. Having other illnesses in addition to the cancer decreases the survival rate while it is thought that the toxic effects of chemotherapy causes people to have extended breaks from radiotherapy.

Because the data is retrospective, at this stage the results are still only observational and limited in accuracy. Further research is required to confirm the findings.

For further reading on the topic of radiotherapy, please go to Dr Itzhak Brook's article "Side effects of radiation treatment for head and neck cancer"

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FACING FORWARD “LIFE AS A CANCER SURVIVOR” ( DEC '09)

I suppose we don't really need to be told that people who have survived cancer have to go through some kind of emotional problem after treatment, but the American National Cancer Institute and US Mayo Clinic provide some really useful information for managing these emotions and for feeling more in control of their lives.

One of the most common feelings felt by cancer survivors is fear - fear that the cancer may return. According to the Mayo Clinic, "You might worry that every ache or pain is a sign of your cancer recurring. Eventually these fears will fade though they may never go away completely". How can this fear be dealt with? For some people it may help to express their concerns to family and friends, their doctor, other cancer survivors, or a counsellor. There are also many other steps you can take to feel more in control of your life.

The exact cause of cancer is of course unknown, but it is known that a healthy lifestyle decreases the
likelihood of many other illnesses. What you can do to lessen the chances of cancer returning is to take care of your body - eat plenty of fruits and vegetables, exercise regularly, get plenty of sleep and limit alcohol intake.

They also stress the importance of going to all of your follow up appointments. Some people may be afraid to go to their check ups because they are scared that another cancer may be found. However, by knowing what signs and symptoms to look for you can make sure that if there is something is wrong, it is detected and treated early, thereby increasing the chances that the doctors may effect a cure.

They recommend keeping busy - getting out of the house and doing things can help you take your mind off cancer and the fears associated with it.

Many new laryngectomees suffer from stress. Exercise, as well as mind - body methods such as editation, relaxation, hypnosis, yoga or imagery may help you to lower stress. For some people, art, music or dance helps them to express themselves.

Sharing personal stories is another way of releasing stress. Joining a support group such as the Laryngectomee Association can help here, by putting you in touch with other people who have had similar experiences. If you are unable to attend meetings, there are also many laryngectomee websites such as "Web Whispers" in America, the biggest worldwide. According to the National Cancer Institute, "Some research shows that joining a support group improves quality of life and enhances survival". However a support group may not be for everyone. For some people, listening to other peoples' problems can make them feel worse. For others, a support group helps them overcome
feelings of loneliness - the feeling that others don't understand what they've been through, or the awareness that some people may even be afraid of them because they've had cancer.

Try to stay positive, but remember that you don't have to be upbeat all the time. The National Cancer Institute quotes a woman who says" When it gets really bad I just tell my family I'm having a bad cancer day and go upstairs and crawl into bed". Try not to lose your sense of humour. 

Watching funny movies or TV shows, listening to comedy tapes or CDs, having a funny calendar on your desk, reading joke books or checking out jokes on the internet (if you don't own a computer, use one at your local library) - all these things can help cheer you up.

You may find that having a laryngectomy has made you self-conscious about your appearance. According to the Mayo Clinic, "Changes in skin colour, weight gain or loss, the loss of a limb, or the placement of an ostomy might make you feel like you'd rather stay at home, away from other people. You might withdraw from friends and family. And self consciousness can strain your relationship with your partner if you don't feel worthy of love and
affection." The clinic advises focusing on how cancer has made you a stronger person and states that when you're more confident about your appearance, others will feel more comfortable around you.

Some laryngectomees may blame themselves for something they did or didn't do. This  is unrealistic as cancer can actually happen to anyone. 

If you experience feelings of sadness and they are constant and interfere with your daily life, you may be suffering from an illness called depression, which is common among cancer survivors. You will need to see your doctor for treatment, which may include counselling and/or medication.

Having experienced a serious illness such as cancer may effect your spiritual beliefs. For some people, their religious beliefs become stronger while other people may question the meaning of their life. According to the National Cancer Institute, "Studies have shown that for some, religion can be an important part of both coping with and recovering from cancer."

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SIDE-EFFECTS OF CHEMOTHERAPY ( MAY '10)

Before commencing chemotherapy, most people are required to attend a pre admission clinic where they are told about the chemotherapy drug they are to be treated with, (there are numerous chemotherapy drugs used in different
combinations for different cancer types), the possible side effects, and how to manage these side effects. Although not everyone experiences side effects the
following guide should be useful for those who do.

RED CELLS, WHITE CELLS AND PLATELETS

Although chemotherapy drugs are designed to kill cancer cells, some normal cells are also damaged. Because blood cells (red cells, white cells and platelets) are often affected by chemotherapy, you will be required to have regular blood tests during your treatment.

Platelets - Because platelets help blood to clot and chemotherapy drugs can lower your platelet count you may experience bruising and bleeding.

Red cells - If you develop anaemia, (a low red cell count) you may become short of breath, have palpitations or become lethargic. Sometimes a blood transfusion may be needed to help solve the problem.

White cells - Chemotherapy often lowers white blood cells (the cells that fight infection). This may happen 10 - 12 days after each treatment. If you develop a fever greater than 38 degrees twice in a 6 hour period, it is advisable to contact your doctor or have yourself checked out at a hospital.

NAUSEA

Nausea is a common side effect of chemotherapy drugs and because it is easier to prevent than treat, you should take any anti nausea drugs you have been given.  They are usually given before each chemotherapy treatment and the type depends on your chemotherapy regimen. Some of the drugs prescribed include Maxalon, Stemetil, Zofran, Kytril, Navoban, Emend Tripack or Dexmethasone.

If vomiting is an ongoing problem, your doctor may recommend Stemetil suppositories.

If the anti nausea drugs do not work for you, you could try an antacid such as Zantac, Pyridoxine (Vitamin B6) or ginger capsules.

NUTRITION

At this time it is very important that you maintain good nutrition as it will help you to cope mentally and physically with the cancer and any side effects of treatment. You should choose foods from all five food groups to ensure a balanced diet. A dietician can assist you with advice if needed.

TO HELP PREVENT OR ALLEVIATE NAUSEA

Try to avoid very sweet, spicy, oily, fatty and fried food. Eat small regular meals and don't have a very large meal immediately before or after a chemotherapy session.

FLUID

It is very important to stay well hydrated. Drink plenty of fluids and avoid a lot of coffee and tea as they may unsettle your stomach. After a chemotherapy session you should drink 2-3 litres of water a day for 2-3 days.

CONSTIPATION

The anti nausea drugs Navoban, Kytril and Zofran as well as some anti cancer drugs can cause constipation. To prevent or relieve constipation drink plenty of fluids, eat foods high in fibre and try to exercise regularly. If the problem continues you could try Coloxyl with Senna tablets, Movicol sachets, glycerine suppositories or Durolax suppositories.

DIARRHOEA

Some chemotherapy drugs can cause diarrhoea. To control it you should drink small amounts of fluids regularly. You should drink fluids that are warm or at room temperature and leave fizzy drinks to go flat before you drink them. Gastrolyte or Powerade can help to replace lost electrolytes.

Eat small amounts of food frequently and avoid spicy or fried foods, alcohol, fruit juices and strong tea and coffee. Imodium, Gastro Stop or Lomotil may be helpful.

MOUTHCARE

Some chemotherapy drugs can cause a dry, sore and/or ulcerated mouth, as well as taste changes.

To prevent a sore mouth -
use a soft, small headed toothbrush
be careful to brush and floss regularly
use a mouthwash at least four times a day. A simple but effective wash is sodium bicarbonate mouthwash. (Dissolve 1 teaspoon of bicarbonate soda in a glass of warm water. Rinse your mouth well, then expel. Use after meals and at bedtime.) Do not use commercial mouthwashes as they contain alcohol and will dry and irritate your gums.

Dentures should be cleaned after every meal and rinse your mouth with mouthwash when your dentures are removed.

TASTE CHANGES

If you find that food tastes bitter or like metal, try eating mints (or sugarless mints) or chewing gum (or sugarless gum) to help get rid of the odd taste. If your food tastes like metal, you can also try using plastic rather than metal cooking utensils.

TREATMENT FOR A DRY MOUTH

Try to avoid caffeine, alcohol and tobacco as they can dry out the mouth.

Use Biotene Oral Balance Moisturising Gel to the mouth or tongue, or you can try Toothette mouth moisturiser.

For dry lips, Paw Paw ointment or Oralife peppermint lip treatment can help.

Use a room humidifier at night.

Stimulate saliva flow with sugarless lollies or sugarless gum.

Use a mouthwash at least four times a day.

Use a room humidifier at night.

TREATMENT FOR A SORE MOUTH, ULCERS OR INFECTIONS

The problem of a sore mouth or a white coating in the mouth (a sign of a fungal infection) can be remedied by using sodium bicarbonate, Biotene or Difflam mouthwash every 2-4 hours.

Nilstat antifungal drops are useful, as are Fungulin lozenges and Fluconazole tablets (but both of these need a prescription from the doctor). For painful gums you can use Biotene toothpaste. Drinking plenty of fluids, sucking on ice and eating soft moist foods all help. Try to avoid mouthwashes containing alcohol, spicy and salty foods, acidic foods like oranges, rough coarse or dry foods, and hot food. For mouth pain you can use Xylocaine viscous fluid or Gelclair, and for individual ulcers you can use Kenalog in Orabase Paste.

LIFESTYLE

A good diet, plenty of rest and relaxation, regular exercise and maintaining a positive attitude will help your recovery and take your mind off your illness.

SEXUALITY

After chemotherapy all your bodily fluids are contaminated with chemotherapy drugs for several days. You should talk to your oncology team about the time it takes for your body to remove your particular chemo drug. You should protect your partner by using safe sex techniques such as condoms and when using the toilet, close the lid and double flush after each use. Carers should wear gloves when handling any body fluids.

COMPLEMENTARY THERAPIES

You should discuss any complementary drugs with your team as they may interfere with your chemotherapy treatment.

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IMPROVING YOUR AL/EL TECHNIQUE by David Blevins ( NOV '10)

Whether you call it an artificial larynx (AL), electronic larynx (EL), artificial laryngeal device (ALD), or perhaps refer to it by a brand name (such as Servox or Cooper-Rand), most users of these devices can make significant improvements in their use through correct practice and improved technique. While some of the suggestions may apply to any type of AL, the emphasis here is on the devices which are used by holding them against the neck.

If you have spent much time with other laryngectomees you have certainly noticed differences in the quality of speech produced by AL users. We notice that some are louder, clearer and easier to understand than others. Part of the problem is that many appear to be self-taught and would have benefited from good instruction at the outset from a speech-language pathologist (SLP) or other qualified therapist. Of course some of the differences we hear are the consequence of radiation, scar tissue, wearing of dentures, and physical or other problems which interfere with speech. In some cases these circumstances may not be correctable, or significantly improved. Nevertheless, most laryngectomees CAN improve their AL use through proper initial instruction, experimentation, and practicing good technique.

Most ALs are made to be used by holding them against the outside of the neck, such as the Servox, TruTone, Romet, Optivox, Nu-Vois, Denrick, Solatone, etc.) Some important tips on using them well include:

    1. Find that "Sweet Spot"!  A sweet spot is a location where sound and vibration is most efficiently transmitted into the esophagus and mouth for speech. There may be more than one sweet spot, and it can change over time with additional ones coming into existence as the healing process progresses. There will often be two, three, or even more places on the neck which produce a loud and clear sound. A simple way to find the sweet spot is to open your mouth and keep it in one position as you place the AL in different locations on your neck. Say the neutral "ahhhh" sound.

    It is important that you maintain a uniform pressure of the AL head against your neck at each location you try. If you have not experimented with looking for new sweet spots, you may discover that you have developed a better one, or additional ones you can use as an alternate to the primary spot. In addition to experimenting with different locations, try different amounts of pressure to get a good compromise between too tight, which can be painful (and muffle the sound in some ALs); and too loose, which will produce the loud buzzing sound which interferes with intelligible speech.

    The laryngectomy operation can produce lots of scar tissue and swelling from the accumulation of lymph fluid in the neck area (edema). This typically muffles the sound when using the AL against the neck right after the operation, and for weeks and even months afterwards. This problem and post-operative pain can cause many laryngectomees to initially use an AL intra-orally with the "straw" adapter which puts the sound into the mouth instead of through the neck. 

    Neck tissue which has been treated with radiation can also become thickened, tender, and more resistant to the use of the device held against the neck. Those who have had to use an AL intra-orally because of these problems should remain open to trying an AL against the neck as healing progresses since the volume and quality of sound are often superior to the device used inter-orally.

    The location of one or more good "sweet spots" is essential. And once you have found one, continue to experiment over time as a better or additional one or more may develop.

    2. If you are able to do so, learn to hold and operate the AL with your non-dominant hand. Doing so frees your dominant hand to write, shake hands, etc. It is also better for many of us to use our index finger to push the button rather than the thumb since most people have better fine motor control with it. This is especially important for a device like the TruTone where varying the pressure in small steps causes the change in pitch. The first and second fingers work well together in operating the dual tone change buttons of the Servox and similar larynges. 

    3. Coordinate pressing the button on and off with your phrases and sentences. Certainly let go of the button at the end of a sentence. But you may discover that letting go of the button between phrases within a sentence is also helpful to your listener, although pushing the button off and on with each word should definitely be avoided. Work towards being fluid with your phrasing. These pauses will also make it easier for people to understand you. Pauses are important.

    4. Vary your speech rate (how fast you talk.) A variety in your rate along with pauses can help substitute for the pitch variations in your pre-laryngectomy voice.

    5. Over-articulate and slightly exaggerate your mouth movements. Open your mouth wider and give more emphasis to the final consonant sounds in words (such as the "d" sound in the word "cold", the "t" sound in "pleasant", the "ch" sound in "speech," the "p" sound in "tape", etc.)

    6. Talking too fast is a problem for many laryngectomees. Try and speak more slowly than you did with your pre-laryngectomy voice. Some people have a more difficult time separating the buzzing sound the AL makes from the words you are saying. Many speech-language pathologists consider the speech rate as affecting intelligibility more than any other single speech factor. Combined with #4 above, it is possible to vary the speed of your speech to provide variety and emphasis, but also not speak so fast that it becomes a problem for your listener.

    7. The "h" sound is virtually impossible for laryngectomees to say. But an approximation can be made by prolonging the vowel sound which follows the "h". An example is "heat" and "eat." Prolong the "e" sound in front of the word "eat", and it is more likely to be perceived as the "h" sound. Other pairs of words you can practice "at - hat, it - hit, am - ham, all - hall, eye - high, ill - hill, is - his, as - has, add - had." Another solution for the missing "h" sound is to begin to substitute the "k" sound. But stop short of fully inserting the "k" sound where the "h" should be.

    8. Avoid expelling air out of your stoma as you speak, or making noise as you breathe. It calls attention to us in undesirable ways. This is called, among other things, "stoma blast." This noisiness is a remnant of your pre-laryngectomy speaking when you had to use exhaled breath to speak, or the result of unnecessary strain to force esophageal or TEP speech. Most of us initially produced some unwanted stoma sounds, but audible breathing and air expulsions while talking can become a habit. It is one we want to avoid, or break if we already have.

    9. If your AL has a pitch and/or volume control, practice using them to change the pitch to provide variety, and adjust that volume to different situations.

    And remember that maintaining eye contact and using facial expression and gestures can also help your listener understand you.

    Most laryngectomees can make substantial improvement in their ability to use the AL. The name of the game is to be understood, and practice and good technique can make a big difference.

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LETTER TO POLICE RE: R.B.T. (OCT '10 )

8/9/10
Inspector John Litman
Traffic Services
11 Liberty Road
HUNTINGWOOD NSW 2148

Dear John,                                      LARYNGECTOMEES v. RBT


Following our telephone conversation on Tuesday 7 September 2010, I hope the enclosed information is sufficient for you and your colleagues to address.


My name is Brian Charles GARDNER. I am a retired Detective Inspector of Police (Reg No. 8841). In November 1987 I was diagnosed with cancer of the vocal chords (larynx).  Following a course of radiotherapy, which was not successful, I underwent a laryngectomy operation (removal of larynx etc) in June 1988. In September 1988 I returned to work.  My Portfolio at that time was Detective Inspector, Staff Officer OPERATIONS & INTELLIGENCE to the Distruict Commander of the then “D” District. Following a few more health problems, I applied for early retirement on health grounds. In March 1993, I was boarded out of the service on medical grounds.


In February 1998, I was elected as State President of the Laryngectomee Association of NSW Inc., a
position I still hold. The Association has about 300 members and from research it appears that for every member there are about two others who do not bother to join – accordingly there may be as many as 1000 laryngectomees in this State.


As you are aware, it is medically and physically impossible for a laryngectomee to participate in any RBT.


A laryngectomee no longer breathes through his nose and mouth. He is known as a “neck breather”. He breathes through a small hole (stoma) surgically made in his neck.  He has 3 accepted ways of talking:


(1)     by using an electrolarynx (known as Servox or like machine)


(2)    by using oesophageal voice (basically inhaling/exhaling air through the stoma)


(3)    and as I do, and about 75% of other laryngectomees using a low pressure prosthesis valve inserted in the neck.  A finger or thumb is placed over the stoma and voice is produced.


We spoke yesterday about 2 different types of testing – firstly, where you require a person to breathe into a hand-held machine, secondly, the newer test where you require a person to talk or count into a hand-held machine. You seem to think that the newer or last device would be capable of getting a RBT reading from a lartyngectomee. I am not so sure. Because we are “neck breathers” I doubt if it is possible to get sufficient air/breath via the mouth to get any reading. Any reading that resulted would most likely be contaminated by any saliva and/or alcohol residue still in the mouth.


As President, instances have been reported to me that some of our members have been harrassed and threatened that they would be taken to a Police Station and charged with refusing to undergo a RBT test and blood testing. I realise that there may be some physical evidence, such as speech and demeanour that could support a DUI charge. In the absence of this, it is clear that some young Police are not aware that laryngectomees are not capable of participating in a breath test.


I am seeking some further education of Police in general, perhaps a Circular or Memo, whatever it takes to address the problem.


I live at Belrose and I would be more than pleased to travel to your Office to undergo any test you think would help in the matter. I seem to remember that, some years ago – about fifteen, there was some sort of education program in this regard but that is in the past.


On behalf of my members, I remain in your hands awaiting in anticipation that some good and finality will come from this communication.


Regards,

BRIAN GARDNER (President) Email: lansw@bigpond.com

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The following is a scanned text version of the

Police response letter.

Scanned images of the same letters are available here.


 


NSW Police Force

www.police.nsw.gov.au


Brian Gardner

President

The Laryngectomee Association of NSW

PC-Box 380

BELROSE   NSW   2085


25 October, 2010 ourref: D/10/158374


Dear Mr Gardner,

Thank you for your recent correspondence on behalf of The Laryngectomee Association of NSW regarding the breath testing of Laryngectomees.

The issues you raised have been considered and expert advice was received.

As a consequence I have caused a "Statewide Email" to be circulated to every police officer outlining "Breath Test/Analysing of Laryngectomees". A copy is attached for your information. This also reinforces Commissioner's Notice 96/47.

Am confident that this action will address your concerns and I am happy to have been able to assist in this instance.

Yours Faithfully




 


Traffic Services Branch 11 Liberty Road

HUNTINGWOOD NSW 2148 Telephone 02 88821299 Facsimile 0288821217 ENet 64299 EFax64217 TTY 9211 3776 (Hearing/Speech impaired)

ABN 43 408 613 180

NSW POLICE FORCE                                               18OO 222 122

WWW.POLICE.NSW.GOV.AU/RECRUITMENT


Breath Testing and Analysis of Laryngectomees

The larynx (or Voice box') is an organ in the neck that assists with speech formation. In some cases, due to disease, cancer, or trauma, this organ is surgically removed (iaryngectomy). People who have had this operation ('laryngectomees') no longer breathe through their nose and mouth, rather through a surgically created stoma in their neck, and are known colloquially as 'neck breathers'. It should be readily apparent to police to identify laryngectomees due to their manner of talking, either by their use of a mechanical device or by using a valve in their neck.

A laryngectomee may experience difficulty providing a sample for a passive breath test. In addition, it would be practically impossible for such a person to undergo a direct breath test or a breath analysis.

Section 13(3) of the Road Transport (Safety and Traffic Management) Act 1999 provides some assistance:

It is a defence to a prosecution for an offence... (refuse/fail breath test)...if the defendant satisfies the court that the defendant was unable on medical grounds, at the time the defendant was required to do so, to undergo a breath test.

Police should use discretion and commonsense when dealing with such drivers, in order to avoid embarrassment to all parties. While not a bar to prosecution, arrests for failing a breath test would *not be appropriate in most cases, nor is taking a blood sample.

If a person is unable (on apparent medical grounds) to undergo a breath test and appears intoxicated, the provisions of Section 12 of the above Act (driving under the influence of alcohol), is available.

------


NSW POLICE FORCE


 

RECRUITING NOW


 

18OO 222 122


WWW.POLICE.NSW.GOV.AU/RECRU1TMENT

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