Miscellaneous Hints

How We Live

miscellaneous hints

BLOWING YOUR NOSE

After about two years of complaining about not being able to blow my nose, I saw a laryngectomee at the doctor's office blow his nose so I asked him how he did it. He said he didn't know, he just did it. Well, I thought about it for a few days and concluded that if I was capable of trapping air to use esophageal speech, I should be able to close my mouth and expel the trapped air through my nostrils! Seemed logical so I decided to practice. It didn't work right away, but the longer I worked at it, the better it worked. Now when I feel my sinuses plugging, I go to the sink and run hot water, lean over and holding one nostril shut with my forefinger, gulp in as much air as possible, shut my mouth tightly, and blow. I continue alternating between nostrils until cleared. Of course, sometimes not all of the mucus exits the nostril so some cleaning with tissues or a face cloth is needed. Blowing my nose can involve coughing up mucus through the stoma so I usually attend to this function during routine cleaning of the stoma in the mornings or at bedtime. A word of caution! Leave the stoma uncovered until you are sure you will not cough up mucus. I can keep my nostrils "drip-free" for extended periods. On the other hand, if I am bothered with significant dripping, I tear a facial tissue in half, roll it into a tube and insert each end into my nostrils. I tried using toilet tissue but it seemed to dissolve rather quickly and came out in pieces when I removed it. I don't have that problem with the Kleenex.

GETTING "BUILD UP" OUT OF YOUR NOSE

I've found an easy way to get the muck out of my nose. I took the wand off the suction machine and suck the stuff out with the hose. It comes right out, all of it, quickly. Every morning I have to do it and also after a coughing or sneezing fit, otherwise it stays dry. As the ad says "Try it, you'll like it." (Robert Power)

FLUSHING OUT YOUR NOSTRILS

Not breathing all that dirty air though my nose has kept my nostrils exceptionally clean but when I cough hard or sneeze, my nose will run (like clear water). I fill a glass with very warm water, put in a dash of salt, and fill a syringe from the glass. I lean over the sink, squirt the water into one nostril, refill the syringe and do the same with the other side. I wait about a minute and repeat before blotting the water off the end of my nose, but leaving the nostrils damp inside. During the allergy season, I do this at bedtime routinely.

WANT TO BE ABLE TO SMELL AND BLOW YOUR NOSE?

A Simple Device for Smelling and Nose Blowing after Laryngectomy

by Zilpha T. Bosone, Ph.D. Speech-Language Pathologist
Veterans Administration Medical Center Washington, D.C.

Rube Goldberg did not think of everything! Here is one device you should have at hand. You can make it yourself in less than five minutes, and it will help you do several things you probably thought you would never do again.

After a laryngectomy, it is not possible to breathe through the nose as before surgery. The elimination of nose breathing prevents or significantly reduces the individual's ability to smell or blow the nose effectively. The sense of smell is intact, but not stimulated. Air carrying the odor is not passing over the hair cells in the nose; unless these cells receive the odor, they cannot send the message on to the brain, and the brain will not know an odor just went by. Occasionally, one gets a whiff of gasoline, bacon, heavy smoke or other strong scent; but without nose breathing, smelling is severely restricted. Not being able to smell can be hazardous to your health. Take, for example, the person who eats tainted food, which looks good, but gives off a bad odor, which passes undetected by the laryngectomee. How about being unable to smell tiny puffs of smoke from a fire that is reaching danger proportions? This particular problem in smelling is one of the reasons it is critical every laryngectomee have smoke alarms strategically located in living and working areas. There are also other difficulties associated with not breathing through the nose. The discomfort of a runny nose is made worse by not being able to blow the nose with reasonable force. At the Veterans Administration Medical Center in Washington, D.C., a simple nipple tube has been used to remedy these problems in individuals who were able to breathe through the nose prior to surgery (see Fig.1).

Fig. 1

CONSTRUCTION

The tube is made of Tygon, with an inside diameter of 1/4", an outside diameter of 7/16", and wall thickness of 3/32". Tygon is a type of plastic tubing. Other tubing may be used as long as it is flexible, does not collapse when held between the teeth, and the inside diameter is large enough to allow comfortable breathing. The tube is cut to the length that equals the distance from the stoma to a point as close to the back of the throat as can be tolerated without gagging. This distance is usually eight to nine inches.

A small hole, about 3/16" in diameter, is cut with scissors in the top of a baby bottle nipple. The nipple nay be new or used. Next, you want to get the tube through the hole in the nipple. In order to do this easily, some water soluble lubricating jelly is squeezed into the inside of the nipple. One end of the tube is rubbed in the jelly, then slipped through the hole from the inside of the nipple to the outside. The nipple is pulled down the tube until about 5/8" of the tube remains inside. The tube and nipple are then washed thoroughly to remove the water-soluble jelly so the nipple is tight against the tubing, and to insure the device is clean.

NOSE BREATHING AND SMELLING

The nipple end is held firmly against the edges of the stoma, with the wide opening of the nipple centered over the opening of the stoma (see Fig. 2). If you are right-handed, the left hand should be used to hold the nipple in place. A left-handed person should use the right hand. The seal between the nipple and the stoma must be complete and air tight. To test the seal, one finger of the free hand is placed over the open end of the tube. You should not be able to breathe, and no air should escape between the nipple and the skin. If any air escapes, adjust the seal of the nipple and retest until the seal is complete.

Now breathe at a normal rate for several minutes, gradually getting use to the difference in breathing between the open stoma and the narrow tube. Many individuals breathe faster and deeper when they start breathing through the tube. They probably feel they are not getting enough air. However, the faster and deeper they breathe, the harder it will be to get air. The point is, as soon as you settle down to slow, easy, quiet breathing, you will find you have ample air. Do not go any further until you are breathing this way.

Once comfortable breathing is established, place the open end of the tube into your mouth close to the back of the tongue. The tube is held in place by biting down with the front teeth, leaving one hand free. Initially, your lips should be apart, and easy breathing continues until you feel comfortable doing so. Next, air is gently breathed in with the lips open, and breathed out with lips closed snugly around the tube. The exhaled air should go through your nose. To see if you are breathing out through your nose, place your hand under your nostrils and feel the flow of air; or place a mirror under your nostrils and look for condensation. When you are at ease breathing out through your nose, reverse the pattern by closing your lips around the tube and breathing in through your nose, then opening your lips and breathing out through your mouth. Gradually, keep your lips closed while breathing in and out through your nose.

Do not be surprised if it takes some practice to be successful. In order to breathe in and out through the nose, the soft palate must be down and away from the pharyngeal wall, leaving space for the air to pass from the mouth into the nasal cavity (see Fig. 2). After laryngectomy, it is common for the soft palate to close against the pharyngeal wall (see Fig.3), preventing air from getting by. It may take time to stimulate the soft palate to drop down. As you try, relax and think about breathing through your nose. Be confident that you can do it. Remember, if you could breathe through your nose before surgery, you can do it now. It can be helpful to try to smell various things. In doing so, you may automatically start breathing in through your nose. Try a good seal between the nipple and stoma, and you are not blocking the tube in your mouth with your tongue or cheek.

Once you are able to breathe through your nose, you are going to be able to smell also; that is, if you were able to smell before your surgery. All it takes to be able to smell is to move air into the nose. Using the device, you should now be able to smell food cooking, fragrant flowers, and all the things there are to smell. If you live alone, you may now be able to tell by the smell if food has gone bad, or note that your socks need a wash. You will think of numerous uses.

NOSE BLOWING

Hold a tissue to your nose with your free hand. Pinch off one nostril. You can get greater pressure in blowing when all the air is directed through one nostril at a time. Blow your nose by breathing in through your open lips, then close your lips and breathe out forcefully through your nose. You should be almost as successful as you were before your surgery.

Some Hints on Using the Above Item by our Members

This is a simple little device and does work pretty well - as described in "Self Help for Laryngectomees" by Zilpha Bosone,Ph.D. with variations. Below are a couple of things I found out in making and using one.

The tubing is about 3/8" to 1/4" in diameter(the clear type Dr. Bosone calls Tygon plastic tubing). Similar to a catheter type clear tubing!

The Baby Bottle Nipple I found that works best of the two I used is the larger "Evenflo" (for big babies!). It's the leather/orange colored soft ones. The "Cherub' style nipple for small and newborn(and a little more stiff) didn't work as well for me. Just a small snip or + of the tip where the hole is, is all you need. The nipple should stretch around the 10-12 inches of tubing tight!

Soon after surgery you notice the runny nose and "Just can't blow my nose". Well the nipple tube can help, but you should ask the doctor before you use it. Take in a deep breath! Hold the nipple to the stoma so air can only go out through the tubing. Stick the tubing in your mouth to the back edge of the tongue or a comfortable spot on top of the tongue. Blow air out of the stoma through the nipple into your mouth with lips tight around the tubing. (Make sure the mucous in the stoma is cleared good first if possible.) You have to close the lips around the tubing so you can get pressure to build up that is necessary back in the throat to be forced out the nose.

Here it is important to close off the throat below where the sinus drainage comes out or using the base or lower part of the back of your tongue close the esophagus so the air can't go into the stomach. It has to turn and go back up out through the nose. You do this by a sudden burst of air from the lungs into the nipple through the tubing into a closed oral cavity which forces the air out of the nostrils thus anything in there goes out the nose. You should have a tissue! over the nose because if there is undried drainage it will go out in a blast if you do it right.

WARNING for Newer Patients!

If there is a blockage( of sinus drainage clogging the nasal cavity) you put a lot of pressure on your inner ears and any unhealed stitching back down in the throat. This is not a good thing to use until you heal quite a bit due to tearing stitches. If a blockage breaks loose it can cause extreme pain in the inner ear as well as the tender area of the throat.

Smelling is the easy part, but your nose has to be clear by whatever means you use. Get close to whatever you want to smell breathe in a big breath of air then exhale it through the nipple with the tube in your mouth. You do this much the same as you did blowing your nose. You should get some of the odor in your nose in reverse.

I say; if you can use this system, you can do it without the tube simply by sniffing to smell like you did prior to surgery. I learned to do it that way easier than with the nipple but you don't get as good of an odor of what you want to smell.

Another way to blow your nose, simply block off one nostril, and divert the air you can capture in your oral cavity and throat above the nostril to esophagus drain points out through the nostril as you did with the tubing.

It will work but takes a lot of practice of breathing and blowing "in reverse" from what you have done all your life prior to surgery. (Scotty Chandler)

HEALTHGRADES.COM

HealthGrades.com™’s goal is to provide information to consumers that helps them select the best quality providers of medical care. The one-of-a-kind Internet service supplies valuable information about the quality of health care provided by individual hospitals, physicians, and health plans in the United States. Most individuals know that the quality of care offered by different hospitals, hospital departments, and physicians varies. However, most people do not know where to get answers to questions, such as: Which hospital in my area has the lowest mortality rate for coronary bypass surgery? Where can I get a list of the leading physicians within 10 miles of my home? Which health plan offers the best access to hospitals and physicians? Questions like these are answered by HealthGrades.com™.

NATIONAL PATIENT ADVOCATE FOUNDATION

The National Patient Advocate Foundation works to enhance patient education and services in the following areas: managed care terminology; policy issues that may effect coverage; questions to ask of insurance or managed care companies to clarify terms of coverage; intervention services with creditors in order to negotiate mutually agreed upon reduction or deferment of payments that are due during term of treatment; and provision of legal aid or referral to legal counsel as indicated by patient need. It also is a national network for healthcare reform which supports legislation to enable cancer survivors to obtain insurance funding for medical care and participation in clinical trials. 780 Pilot House Drive Suite 100-C, Newport News, VA 23606; Voice 1-800-532-5274, Fax: 757-873-8999, E-mail:patient@pinn.net

NATIONAL COUNCIL ON AGING

BenefitsCheckUp — a free, easy-to-use service that identifies federal and state assistance programs for older Americans. Researching these programs used to be a time-consuming, frustrating experience. But no longer. The National Council on the Aging created BenefitsCheckUp to help older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income. Here's how it works: You take 10 or 15 minutes to enter information about your financial situation into an online questionnaire. Then, BenefitsCheckUp explains what benefit programs you may be eligible for and how to apply for them. Rest assured that BenefitsCheckUp is completely confidential. It does not require your name, address, phone number, Social Security number, or other information that could be used to identify you. You enter simple information, such as your age, income, and ZIP code, and BenefitsCheckUp identifies programs you might qualify for.

NEEDYMEDS.COM

Many pharmaceutical manufacturers have special programs to assist people who can't afford to buy the drugs they need. One problem is that it's often hard to learn about these programs. Each company has its own program with its special requirements, forms, and procedures. Actually, some companies have different programs for different drugs. There is no central clearinghouse for obtaining information about these programs or the drugs themselves. Most pharmaceutical companies will send their application forms only to a physician's office, and usually only at the request of the physician or his/her representative. Some of the companies will send forms to social workers or to patients, and a few will forward the forms to the physician's office at the request of the social worker or patient. The goal of this unique web site is to make this information easily accessible. NeedyMeds.com

TIPS FOR NEW LARYNGECTOMEES

FROM "A VOICE OF EXPERIENCE"
IN HONOR OF THE AUTHOR
Isabel Fouche Ashe Bonnyman who passed away at age 85 in 2007. A gifted storyteller and wit, she suffered a cruel blow in 1993 when she lost her larynx and voice to cancer. Undaunted, she became a counselor to other cancer survivors whose voices were removed, and she wrote a helpful booklet of tips and encouragement, which has been used at such medical centers as M.D.Anderson in Texas and the Harvard Medical School.

A LARYNGECTOMEE’S PRAYER
Heavenly Father, thank you
for the second gift of speech in my lifetime,
and for your abiding presence in the silence.
Please strengthen me to help
those Laryngectomees who follow me
with understanding, patience, humility
and compassion. Amen

FROM A VOICE OF EXPERIENCE
Isabel Bonnyman

Over four years ago I became a laryngectomee and learned what a rare group we are. Only one in 7,000 population. There are nine men to each woman, due to men’s smoking earlier. Sadly, smoking is producing more women now.

There is very little constructive information available to help laryngectomees learn to deal with their new life. There are “How To” books for mastectomy patients, AA members, Alzheimer caregivers and almost anyone with a guidance need. So this pamphlet is written in the hope that my “Voice of Experience” will help you and encourage you to reassume normal responsibilities and independence. And to help you get on with your own life as quickly as possible

The first year after surgery is largely spent learning how to cope with our tracheostoma and how to talk once again. The following laryngectomee tips were learned gradually over the past three years.

Taken altogether: speech loss, permanent tracheostoma, constant undesirable mucous, inability to taste or smell, the silence when we laugh or cry, absolute swimming ban, and altered bathing techniques are all sudden and monumental changes to which we must adjust quickly. And we do! First and most important, it will get easier, so hang in there.

Concentrate not on what your have lost, but on what you still have and can reasonably develop. You’ll find many initial fears will go away as you gain confidence in yourself to cope.

Contact your local American Cancer Society about their Laryngectomy Support Group which probably meets monthly and can be very helpful. Members come from a 50 mile radius. If this is unavailable, write the IAL for help and information:
If possible contact a good Speech Therapist. Your Surgeon, as well as hospital, can recommend one. A good Speech Therapist will be almost as important to you as the surgery, and can also be a great friend as well as teacher. Insurance or Medicare should pay for this.
You will learn to enunciate clearly - don’t chew your words.
You will learn to open your mouth wider when speaking --don’t mumble.
You will learn to speak slowly. Careful articulation and enunciation are musts when using an electronic device or developing esophageal speech.

Learn to use your vocabulary well. Simplify your speech using simple words and expressions that you can say more easily, and your listener can more easily understand. Though you may have tried for years to develop a good vocabulary, be selective with it now. You’ll learn words to avoid for clarity - even if they are perfect for what you want to express. Because your voice is a “breathy sound”, you’ll be unable at first to pronounce the letter, H. With practice, however, you’ll learn how to do it by slurring the word ahead of it with the word beginning with H (example: say “goodhealth” as if it were one word).

As you work to improve your new speech, you’ll be interested to observe television newscasters using exactly the techniques you’re learning. Speech therapy is required for their work. They speak slowly and clearly with mouth open. They didn’t get the job until they learned to do so.
Look directly at those to whom you’re speaking. Maintaining eye contact will help the listener watch your mouth as you speak and read your lips. This is especially important to a deaf person. It is a myth that all hearing impaired can read lips. Reality: Many do, but even the best lip readers pick up less that half of the words spoken the first time. Since much of what you say will need to be repeated no matter to whom you’re speaking, you can see how important your speech therapy will be to you as well as your listeners.

When using the telephone, hold the mouthpiece tilted up about an inch from your lips. Never let the mouthpiece drop below your chin or it will pick up breathing noise from your stoma.

Many listeners are unaware they have a hearing loss. They don’t know when they’re missing something. Those under 60 will usually have no trouble understanding you.

Tension and stress may cause you to forget good speech tempo and speak too fast. When upset or excited, remember to consciously SLOW DOWN.
Motivation is vital to our best rehabilitation. But it can also cause tension and increase normal frustrations of our new life. Concentrate again on what you still have and not what you have lost.

Your normal swimming days are over. And, since your stoma opens a direct path for water to enter your lungs, a fall into water could be fatal.
Work to rise above the rudeness & ignorance you will sometimes encounter. Move on! It is destructive to nurture hurt feelings.

Always keep your stoma covered to filter out dust, pollen, fumes, etc. Keeping it covered will also help retain some of the moisture and warmth lost by no longer breathing through your nose. Normally the nose and mouth warm and moisten air before it reaches the lungs. Now, it is a short, straight shot. Retaining moisture and heat reduces the severe coughing and bronchitis caused by drying mucous. To further combat dry air coughing, get a cool air humidifier and use it at night and as needed when furnace and air conditioner are on. If you live in a dry, dusty or windy atmosphere, always wear a scarf in the wind or cold. Keep your stoma covered.

Thin foam stoma covers (2”x2”) with attached adhesive (about the size of a post-it note) are available and helpful. Medicare as well as insurance will pay for them. They are classified as “Medical Prosthesis.” Medicare or Insurance will also pay a good portion of your electronic larynx cost.
Flying is notorious for it’s severely arid recycled air. When flying, try wearing two stoma covers with the one underneath dampened. This is also effective to combat dust. But never do this out of doors in cold weather. Warm, humid air can be uncomfortable at times, but it is a boon for laryngectomees.

All laryngectomees are different, depending on the extent of our surgery, reconstruction, radiation required and individual personalities, attitudes and motivation. Never compare yourself to another laryngectomee. Each of us is unique with different rehabilitation challenges. Remember we’re still people first and this disability is only part of who we are. With time and effort we can overcome many of our initial problems. Believe me.

Eighty per-cent of taste is actually smell. You’ve lost all or some of both your sense of taste and smell because air no longer reaches the olfactory glands in your nose. Texture and crunch give a welcome sense of really eating that is not provided by soft, bland food. Some foods may simply taste different now, neither better nor worse. Spices, salt, lemon juice, catsup, pickles, olives, crunchy toast and crackers, chips and popcorn don’t rely on smell to enhance food.

Beware of possibly spoiled food too long in the refrigerator. With your now restricted senses of taste and smell, you need to be aware that it can be dangerous.

It may be hard to eat soup with a regular round soup spoon because we’re no longer able to suck the soup in slightly. Some people may deny they do this, but watch them-everyone does however quietly. Try an oval shaped serving spoon for soup. Tilt it so that the soup is poured into your mouth. It does fine.

Your Mother was right again! Don’t talk with food in your mouth. No one will understand a word.

Without becoming paranoid, be aware of the danger of smoke or gas fumes. Install smoke and gas alarms in your home and keep the batteries fresh. Remember your nose is no longer an early warning system.
A psychological mourning period is not only normal but constructive and appropriate considering your loss. But don’t burden others more than you would mourning any other loss.

It’s not as much fun, but in restaurants face the wall instead of the room. This will better project your voice and help compete with the noise.
Always carry an extra battery for your electro-larynx. The length of a battery charge depends primarily on volume required, but also on time used.

Batteries won’t work if very cold, so in severe weather keep your voice aid inside a glove in your coat pocket, when not actually in use. Batteries don’t like extreme heat either, so don’t leave it in bright sun.

Because of your limited volume, print small pocket size cards saying, “I haven’t volume to talk here.” to show people in a too noisy room or situation. It will help.

Swallowing will be slower, but relax and take your time. Hot liquids are easier to swallow than cold.

After you master your speech aid with one hand, make an effort to become somewhat proficient with the other hand. There are times when this will be very helpful.

Good news! You can’t snore and are very unlikely to start talking to yourself!

Heavy exertion is altered and you can’t lift as well because you no longer get extra lift/push from locking up your larynx. Muscle power alone is left.
Because of your stoma’s unobstructed entry to lungs, it is vital to keep water out of the stoma. But don’t be too fearful because with simple care, it won’t happen. Foam shower covers are available, but your free hand is just as effective. Adjust the shower head so water stream hits body well below stoma. Cup your hand over stoma when rinsing head and neck.
Always use a rubber mat in shower or tub.

Try not to lean over for two hours after eating or drinking because you may regurgitate. If you must bend over, learn to hold your head up when body bends down.

Buy from a catalogue (or you can make easily) a slanted foam pillow, a wedge that is 7” to 10” high at one end and tapers to nothing at the other. Place your regular pillow on top of this wedge and have a good night’s sleep. This will provide some of the slanted elevation that was so helpful in the hospital.

A small lighted magnifying mirror, invented to help floss teeth, is a great help with stoma care.

Because we can no longer blow our nose or sniff, it runs! And our stoma produces constant mucous too. So try using tissues with lotion added. These are available at drug and grocery stores. They will keep your nose from becoming chapped and stoma from being sensitive.

Remember Winston Churchill’s famous words: “Never give up! Never give up! Never give up!”

To clear lungs, sit down and lean forward till stoma is lower than lungs, then cough.

Some like to wear turtle necks. Some don’t. Try one and make your own decision.

If you are woman, look for pockets in new clothes when you go shopping. If you are a man, be thankful that you have so many. We need them.
To free your hand when not talking, make a “holster” of light weight quilting for your electro-larynx and attach it to your belt or tie around your waist. Or attach an eye class case or cellular phone case to your belt. Any of these will help keep your new voice quickly available while freeing your hand when not talking. It’s great to be two-handed again.

Finally, it’s important to realize we’re now in “sales”. Most people have never seen or had to deal with anyone like us. It’s easy at first to think we don’t need them, but of course we do. Remember that the ability to communicate separates us from the lower animals. And we’re the most adaptable species by far. This is why a good Speech Therapist is so important. Dealing with children is easier than adults because though they may be slightly fearful of us at first, they’re not embarrassed as adults may be, nor do they think we are mentally impaired. In both cases, it’s up to us to reach out to them and try to put them at ease. But don’t crowd them. Some take longer and more effort on our part. Give people time to understand the problem and space to try to deal with you. Most will be come interested in your speech aid and how it works. But after doing your best with people, recognize and accept that you can’t win them all.

COPING WITH GRIEF AND LOSS

An excellent presentation on this subject is on the ACS's Coping with Grief and Loss page. Good reading!!

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