Some of us have no difficulty living much the same way we always did, but many have to make adjustments to the way we perform tasks, plan ahead a little more carefully, and even use various devices to help us keep our problems simple and easy to deal with.
The statements, suggestions, and/or opinions expressed in the items in The Information Library are those of the contributors only and are not to be construed as those of the WebWhispers management, its general membership, or this website’s staff.
Face Shield for Laryngetomies
I was having major problems with the covid-19 and mask wearing. I found a company in Michigan which is run by an RN who is familiar with laries and they made me a special face shield.
They have now come up with a face shield with a washable drape that covers my face and my stoma.
I have pasted in this email info on the face shield and it has been a wonderful help to me. I live alone; am 77 years young; and need to go out for food and necessary in person doctor’s visits. This new face shield with the washable drape has been a God-sent for me.
If you think you can post this on our Webwhispers so other laries can see one possibility for us to protect ourselves and those around us, please post it.
Please let me know if you think you might be able to post this info. I do not personally know Cathaleen nor am I doing this to get any monies. I am asking because it has helped me and Cathaleen is so understanding of Laries’ needs.
Cathaleen, Thank you for giving me permission to share info/pics of your face shield with washable drape that is benefiting me as a Lary.
Maggie H. Geehan class of 01
Picture and info of Face Shield with Washable drape which helps me – a lary:
The following will bring you to the site to learn more:
Travel – Near and Far
Everyone should have an emergency kit with them.
I put my kit a small plastic container. This is what I have in my kit:
1. Adult tracheostomy mask
2. #10n laryngectomy tube and soft tube
3. laryngectomy tube holder
4. vinyl exam gloves
5. flash light
7. saline bullets
8. alcohol swabs
9. hand sanitizer
10.Ky or lube jelly (to insert lary tube)
11. on the top of this, when you open the box, is the pamphlet “Rescue Breathing for Laryngectomees”
12. A medical history, list of medications and allergies, and doctors.
When I used a prosthesis, I had things for that in the emergency box, too.
Obviously, our needs are all different but the essential things should be in the kit. I know that when I’ve had to have surgery or a procedure I always brought the tracheostomy mask. If they used mine, they replaced it for me. Some of the things have dates on them, so you want to keep them up to date. It’s important to update the medical history and medications.
It’s important to get copies of all your medical tests. You should have the written report as well as the CDs of the tests. This way things can be compared if need be.
Hope all is well….
Rita in NJ 2000
Treated in NYC
I have a couple of lists. I use the HME and base plate and sometimes I use the Freehands. Also, I’ve been told that my puncture would probably close in 4 hours or less. As a consequence, when we change my valve out, if we have to stop in the middle (I’m a difficult switch out) for any time at all , we insert the red catheter. So , weird as it may seem to some have one with me in case I pull the prosthesis out or something.
My routine list is short.
Generally, in my pocket or on me somewhere:
1. Blue brush (I use more than most)
3. Light (or lighted mirror)
4. A couple of HMEs in the pack they come in (zipped closed)
5. If I’m using the Freehands, all the above plus a couple of freehands filters.
I often have to switch from one set up to the other.
6. Hand sanitizer
7. Tissues to cough into (never use inside)
8. An electrolarynx as a backup.
A neat trick I learned for just items 1, 3, and 4 is an unused glasses case that snaps shut. It easily fits in a pants or shirt pocket. One of our members shared that idea.
If I’m at home or away but near my vehicle, my lary bag is nearby. It will have a few more things. How much more and how many depends on how long I expect to be away.
1. Spare baseplate(s)
2. Remover wipe(s)
3, Adhesive wipe(s)
2. Larger supply of HMEs and Freehands filters, if applicable.
3. Saline bullet
4. My special tweezers (with the bend in them)
5. Red rubber catheter
6. Foam filter(s)
8. Again, an electrolarynx as a backup.
9. Medications that may be needed for the period of time.
Everyone can make the kit tailored to your needs. If you have a TEP, I would suggest a spare especially if traveling far from home. A TEP plug is good in case it starts leaking too.
Ron Mattoon Seattle 2010
Another item that you may want is a mask especially when traveling. The following site has masks with clear windows that allow the other people to see you talking. The also do not attenuate the sound as much as other masks. They only over the mouth and nose so you will need to consider your stoma as well.
Posted from WW Facebook information 05/2020
TRAVEL BY CAR
(Also see the Car information in the Safety Section)
1. When you are planning to travel by car, you might want to consider the following list of “items and hints” to make your trip a little easier and enjoyable. Besides the usual things everyone puts in the trunk of the car or glove box (road maps etc.), We laryngectomees need to add to our wardrobe and toiletries. Of course we know to bring our “every-day” items but you might want to bring the following with you in the car:
2. A small misting/spray bottle, filled with clean water, to spray the stoma or stoma cover to provide humidity. It can also be useful for cleaning hands or face, while on the road.
3. A roll of paper towels is handy and better for stoma cleaning than tissues since there is not as much fuzz. I like select-a-size.
4. The basics, a pad of paper and a pen, just in case your other method of speech fails or it is too noisy to talk.
5. A hand held mirror, normal view on one side and magnifying on the other. This could be particularly helpful when lighting is not great and you want to check your stoma.
6. A small cooler with some water bottles, especially for those of us who had radiation, to combat the coughing spells.
7. A thermos of hot coffee if that helps coughing better than cold water.
8. Cough drops or candy mints.
9. Have a kit containing the supplies you use to take care of your laryngectomy needs right near you so it is easy to grab on stops along the way. These supplies will vary. One kit might have a zip type bag containing: tweezers, pen-light, q-tips, humidity filters, extra stoma cover, while another has a plastic box with small magnifying mirror, TEP cleaning brush and syringe/pipette, and another might be sure to have an extra Servox battery and saline solution. Note what you use at home for everyday care and have it with you.
10. The rest of your equipment can go in your luggage. Some of the things you might want are extra scarves, stoma covers, extra batteries, battery charger, complete TEP prosthesis kit with K-Y and gel caps, tape, small scissors, bright light, mirror on stand, peroxide, extra stoma vent or button and anything else you might need.
TRAVEL BY AIR
1. No special problems with flying except the air is very dry so drink lots of water, keep your stoma cover moist with a little spray/mist bottle and don’t try to talk much over the noise. Several of our members recommended a nasal spray bottle as a good way to to counter de-hydration on the aircraft, although this can be overcome by using bottled water and a handkerchief.
2. Many of us fly all the time and have never bothered to use these information sheets but, it is a good idea to have one of the orange emergency cards with you, flying, riding, or walking! Do what makes you comfortable:
I thought I’d share a hint that we’ve used for my husband when we travel by air. We prepared an information sheet which we give to flight attendants when we board the plane, and we request that they read the information and ask us if they have any questions. The sheet says:
“Passenger xxx [name] in seat #xxx is a laryngectomee.
Please be aware of the information below in case of emergency.
I am a total neck breather—no vocal cords.
1. I breathe ONLY through an opening in my neck; NOT through my nose or mouth.
2. If there should be an emergency which requires that passengers receive oxygen, the oxygen supply must go to neck opening—not nose or mouth.
3. If I have stopped breathing, remove anything which covers the opening in my neck. Expose entire neck.
4. Keep neck opening clear and protected from liquids.
5. Resuscitate with air or oxygen to neck opening, or use mouth to neck breathing. Close off nose and mouth while doing this.
6. When I start to breathe again, use oxygen supply to neck opening ONLY.”
This is followed by an explanation of TEP emergency care such as the information given on the Orange cards, but that section would be different for users of EL’s or for esophageal speakers.
While it would not be quite as comprehensive, you could copy both sides of your laryngectomy emergency card onto a sheet of paper and use that for your handout.
I recommend that you have a comprehensive list of your medications and a doctors letter or medical need especially if you are traveling abroad. I would suggest a spare TEP also.
When I am traveling with my EL, I always explain the security check point personnel that when I give them my EL device, that I will not be able to talk. They often go through with me so there is no problems.
Ron Mattoon Seattle 2010
Travel hints from our members
NEEDING AN SLP?
One of our SLP members from Orlando, FL, a much visited area, sent some suggestions for laryngectomees on vacation. Keeping in mind that you might need advice from a professional or a prosthesis change while traveling, Linda writes:
My suggestion to all of you that are traveling, is to get a prescription from your ENT/Head and Neck Surgeon before leaving home. The prescription should read something like “TEP Evaluation” or “TEP troubleshooting”….. and I would highly recommend that you have a spare prosthesis with you, if possible. For instance, we carry most types and lengths of prosthesis here at our facility; however, insurance reimbursement varies from carrier to carrier and the process is streamlined if you come with a prosthesis in hand.
Another helpful piece of information is to have the phone numbers of your Speech Pathologist and MD with you. In both of the cases that I saw recently, I was easily able to reach the Speech Pathologist beforehand to find out more medical background and ask about “special issues” that the patient may have had in the past with stoma/prosthesis. This can certainly help someone like myself who has never seen you beforehand. In turn, I can easily contact the Speech Pathologist afterwards to provide any updates on the care provided.
One of the patients had Aetna insurance that required prior authorization for an out-of-state benefit and the other patient had Medicare which did not require any special authorizations. So, it goes almost without saying that you should also be sure to travel with your insurance cards!
Looking forward to helping out any laryngectomees visiting the sunshine state!
Linda Stachowiak MS/CCCSLP BRS-S
MD Anderson Cancer Center Orlando
1400 S. Orange Ave. MP710
Orlando, FL 32806
Decorating the HME
I’m Aaron Wayne, new member and lary since 10-21-2019.
I have written a book about what led up to the
operation and the first year following it. I am interested
in contributing to your newsletter. I am attaching a
photo of the cover of my book (The Silent Partner) which is available on
Amazon in paperback or for a Kindle reader [free to
WW members]. I am also attaching a poem and an
article about HME decoration.
They’re all working hard in the hospital’s bowels,
with kindness and caring and sterile white towels.
They fight off our maladies, fevers, and curses.
They’re our guardian angels –
…also called Nurses.
The useable area on an Atos brand HME is a 22mm
diameter circle. For a template, I use the hole in the
coated paper that peels off the back of an adhesive
plate, which is about the right size. When shopping for
decals or objects to decorate with, I use a US quarter: If
anything sticks out from under the quarter it is too big.
Using the template, I draw most of my own pictures.
For any written messages (i.e. AIR ONLY, PRESS TO
TALK, START) I use my word processor and can even
print on colored paper. I also use images in the public
domain, either from a book I purchased at Hennessey &
Ingalls bookstore in Los Angeles or downloaded from
one of the internet sites (1 Type “images in the public
domain” into your search engine for various sites).
Once I have an image that I want to use, I prepare it
by using a piece of clear packing tape to cover each
side, then cutting it into a circle. Using a clean new
HME, I use ½” (13mm) Glue Dots to carefully attach
the decoration to the center of the HME.
CAUTION: Do not attach HME to your plate or to
your lary tube until you are certain that the decoration
is firmly attached and that it does not interfere with
the operation of the HME valve!
Public transportation has varied rules on traveling with oxygen Every airline has their own rules on traveling with oxygen. You will need to contact the airline well in advance of you trip to make sure you do not run into problems. You will also need to allow extra time for check in as additional security will be very likely. Advanced planning will help eliminate the unexpected problems that might delay or ruin your trip.
PILLOWS FOR COMFORTABLE TRAVEL
An option on travel pillows is available. You have to find what works best for you. See the Everyday Living section below for more information.
Here is a pattern for making a mask for travel or local use.
Here is another mask pattern from the Philadelphia Inquirer
PORTABLE SUCTION MACHINES
There are portable suction machines. One operates on 110v AC power at home or has an optional power kit/battery pack (sold separately) that enables the unit to be used in your car or anywhere. Even the recharged is built in. (See Bruce Medical in Section 5 Med.)
About suction machines. I use the Vacu Aid. It operates off AC until I unplug the AC line from machine, at which time it automatically converts to DC. All that is needed in a small container of water to flush the intake tube. Mine was provided by Lincare and Medicare pays for it. I hope this helps someone, it has been a great help to me.
The purchase of a small, steam vaporizer (found in most drug stores for $20 or less) can help solve humidity problems while staying in hotels. Run the shower for a few minutes and leave the bathroom door open. Leave the steaming water in the tub for a while.
Also consider a “personal-attack” alarm. This is a small but loud device sold at most electronic stores. Since we can’t scream for help, if we get lost in the woods or attacked on a subway, this may be the most important thing you carry with you..
There are enough members in WW and enough IAL clubs that a traveler can have almost portal to portal emergency numbers to call. If a person is traveling by car or is going to a location they are not too familiar with, post a short message or look up members/clubs and contact them for names and numbers that may help the traveler in emergencies.
Bring a UL rated extension cord for use in the motel room or in case you need to stop someplace and borrow an electric outlet.
I have a machine called a DC to AC inverter which when plugged into a cigarette lighter in the car inverts 12 volt system in the car to 120 volt AC . You just plug your electric appliance into the inverter and it works. I’ve had mine for years, and it really does work. Mine is made by Tripp Lite, 500 N. Orleans, Chicago, Ill. 60610. It’s been so long ago I have no idea what I paid for it. I don’t know who handles them, but I’d sure try Radio Shack.
INVERTER FOR VEHICLE
You can buy an less costly inverter that plugs into a lighter outlet in your vehicle. They are available from Pep Boys, Auto Zone and similar stores. I bought 300 Watt model which has 2 110 volt outlets. I use it to charge my electric scooter and have another plug available for a small TV or my Servox if I ever need it.
TRAVELING IN OTHER COUNTRIES
Three or four years ago while on a visit to England I was using a Servox Speech Aid. The battery charger was rated US Domestic Supply, 110volts, while the UK system delivers 240volts. My son did me a favor and plugged in my battery charger direct to the wall supply, WITHOUT USING THE VOLTAGE CONVERTER. The charger blew out, so I was left without a means to charge my batteries. We could find nowhere to have the charger repaired, so what could I do? The answer was to find a local hospital with the facility to help a Laryngectomee. I found one in a nearby town and they gladly lent me a charger (240v’s) for the remainder of my stay. A Laryngectomee should be aware of the facilities available in the location being visited, bearing in mind that electricity is not always delivered at the same voltage as ours. Consult the IAL Web Site for information on foreign clubs, that is where you can “local information”. (Frank Morgan)
FYI…Siemens offers 12 Volt chargers with 2 different power supplies. One supply, the 110V, is for the home. The other supply, the 12 volt, is for one’s vehicle. Both power supplies can be bought together or separately, depending on your need. The Manufacturer’s Suggested Retail Price (MSRP) for the 12 volt charger is $220.00. The MSRP for the power supply is $13.00. The cost to have a 110V charger converted to a 12 volt charger is approximately $50.00. Please contact your Servox distributors for exact pricing.
A SPARE ELECTROLARYNX
It would be wise to have a spare electrolarynx that uses a 9v battery which can be bought anywhere worldwide. The other choice is to purchase an adapter from Lumanaud that replaces the bottom cap of the Servox and replaces the Servox battery with a regular 9v battery.
Emergency Cards to carry with you are available free from the IAL in English and Spanish. If you plan on traveling abroad to a Spanish speaking country, or any place with a high Spanish-speaking population, the Spanish Emergency Cards are recommended.
Windshield Stickers are available free from the IAL. They can be used on automobile windows and windows in the home to give life saving information to emergency personnel. They are available in both English and Spanish.
Keeping Active and Sports
I snow ski about 35 days a year; boat and fish Chesapeake Bay (water ski with kids..but I haven’t tried the actual skiing yet…need to learn a dry landing); ice skating on Bay tributaries, road running (only 5-8k races so far, but building up some stamina this season); and now maybe back to the motorcycle. Whew…just typing all that made me tired. (Otter)
Alarms – bells – whistles
GET ATTENTION OR CALL YOUR DOG
I have been a laryngectomee for 8.5 years now and a few weeks ago I found a small flat plastic “boat whistle” while going through some boxes packed with old mementos. For some unknown reason, I put it to my lips and sort of puffed. Imagine my surprise when I heard a whistle noise. I tried a few more times just to make certain I could repeat the feat at will. I was further surprised and elated to have my dog “Bo” come to me from somewhere else in the house. He is 13 years old and quite deaf so I had been having trouble getting him to come to me with just esophageal voice commands. Now he responds to the whistle from distances as far as 250 feet. Anyway, since Dutch suggested I write about it, I have tried to figure out just how I manage to do it. As near as I can tell, I am using air trapped in my mouth and expelling it through puffs. Thus, I get no long ear-splitting blasts but very short “toots” that are sufficiently loud to draw attention. If you can puff out your cheeks while keeping your mouth closed, I’m sure you can manage the small reed-type whistle as an attention getter. Just remember that blowing the whistle has nothing to do with breathing so just continue to breathe normally while using the whistle.
POLICE WHISTLE WITH ADAPTER
For someone who spends a good bit of time out of doors in relatively desolate areas, or someone who is concerned about nighttime safety, a police whistle which has been modified.
by the attachment of a nipple from a baby’s bottle which has been cut off at the small end and placed over the mouth part of the whistle. The larger part of the nipple can then be placed over the stoma and blown for a loud, piercing signal, without concern about a dead battery or other power source.
Since laryngectomees have a hard time making a loud noise, in the event of a real emergency, there are personal alarms suggested by one of our WW members. These are in all price ranges, many under $10 and are available from a number of sites that sell security equipment. You can go to Google.com and search for them under Personal Alarms.
To give you one example, Tbo-Tech has key chain alarms, purse size flashlight/alarm, and an electronic whistle key chain, in addition to the dual purpose alarm that can be hung on a doorknob or carried. Please note, these are ear screeching alarms for emergency use. Select something not so powerful if you want to call the grand kids or the dogs.
ANOTHER WAY TO CALL FOR HELP
Another solution is an aerosol air horn. You can buy these where sporting and boating supplies are sold. It is just an aerosol can of compressed air with a horn attachment on top. You have undoubtedly heard these at football games. They are VERY loud.
BICYCLE & MOTORCYCLE RIDING
Notes about riding
1. I was concerned about riding my Motorcycle, but it isn’t a problem. I carry a small bag with my laryngectomy needs, a canister of water, and then it’s the freedom of the road. I carry an extra TEP and a mirror. Your life isn’t over, so get out and enjoy it.
John Day [Class of 2006]
2. I have been a lary for one year and communicate with esophageal speech. I also am an avid cyclist and have ridden for over 30 years. The biggest adjustment for me has been the wearing of a stoma scarf for protection. The scarf restricts inhalation when I am climbing or stressing myself on the flats. It sort of gets sucked in and in this colder weather the additional clothing is sometimes a real problem. I have tried riding without the scarf but that worsens the problem as the clothing blocks air movement. I wouldn’t even suggest the use of the foam pad as this really restricts my breathing. I have completed mountain bike races of 7 miles and mnt bike time trials of 5 miles. I have completed 30 and 40 mile rides. In all cases the blocking of the airway caused me to fiddle with my clothing to breath better. Another problem is the accumulation of fluid or sputum after riding. This I found to be difficult to clear and results in my voice being really muffled. Takes a while to clear that. Another web member suggested the use of lemon in water and this does help to clear the passage quickly. By the way, I celebrate one year today and I currently ride about 100 miles a week and I have joined a running club.
Tim S. 
3. There are two suggestions from athletic laryngectomees that I recall. One fellow was a marathon runner, Tom Brewer, who devised his own plastic guard to wear over his stoma to keep his tee shirt from being sucked into the stoma as he ran and the fabric got pretty wet. He cut a corner off of a plastic milk jug and punched enough holes in it with a paper punch to allow him to breathe freely and attach two ties on the sides of the piece.
The other suggestion is a product that has been around for ages. It is a plastic frame that is convex, and the center is “T” shaped to hold a foam filter and keep it away from the stoma opening so the fabric of shirts. Scarves or other clothing doesn’t get sucked into the stoma. The frame and foam filter combo is made by Cardinal Manufacturing, Inc. It’s called the E-Z Breathe Filter. Their contact info is in Self Help for the Laryngectomee…at least it is in my old edition. You may find this company on the WW or IAL website lists of vendors and products also.
Elizabeth Finchem, Tucson, AZ [10/78]
4. Luminaud bought out Cardinal several years ago so if anyone still carries it would be them.
Jack Henslee, [ ‘79, ‘88, & ‘95]
5. Maybe you have tried them already and are unable to wear one, but my first choice would be the HME filter system. I use the ATOS Provox brand and they have a “HI-FLOW” filter that is specifically designed to be worn during periods of increased physical exercise/exertion. They also have a “NORMAL” filter that has a higher resistance and makes it more difficult to breath and is to be used during periods of resting/normal breathing. I use the “NORMAL” one when I am physically exerting myself, because it makes my lungs work harder and results in better breathing capacity.
InHealth also makes a HME system. Either one would be great for riding a bicycle, I think. No problem with it getting sucked into the stoma, and it completely seals the stoma so no worries about insects, etc. flying into the stoma while cycling.
C. Bruce “Buck” Martin
6. I would try a Stoma shower cover (BIB) under your Stoma cover or bib. This would keep the airway open and the bib would keep the wind and what ever out while you ride your bicycle also. It’s ready made and all you have to do is order one from a vendor and I believe it will solve your problem also.
Terence Gaffney, NJ
7. I use my bike bell when passing people since I can’t announce “passing on your left” like most other bikers do.
Vicki Metz [Class of ‘96]
Harley for my Birthday
Well, I went and got myself some new and interesting problems and opportunities. For my 66th Birthday. I finally bought myself a crotch rocket and yesterday passed the NYS road test. Talk about life after cancer. For a guy who hates stoma covers, you certainly need one on a bike and some spares to boot. Both hands are occupied all the time and a helmet adds to lack of access so you cough into whatever is there. Very different from my bicycle. My state requires a helmet and for now I prefer the full face because it’s cold. No access to the stoma even at a red light. I so love the excitement however that a messy neck is really not bad. This new experience is only a few days old. I’ll continue to update y’all as I learn. Maybe we can get a bike club going. Is anyone else out there a biker? Oleguy
Congrats on the Harley. I don’t ride one of those, but I do drive a Miata with the top down whenever its not raining too hard. If you drive fast enough the rain blows past. There are two or three activities I do that don’t lend themselves to normal coughing, or a hands free valve – which I love. When I ride my bicycle I remove the hands free valve and stick it in my pocket. I don’t use a stoma cover ( I tried, but it interfered with my breathing) but I do wear a filter. Snow skiing is another activity that doesn’t fit the norm. I am somewhat of a novice, having been once, three days of skiing until I broke my shoulder, but I’m going back again this winter.
Maybe we should have a listing of hobbies and activities that we all do. This would let folks know that a laryngectomy is not the end of the world. Oleguy rides a Harley; Scotty runs a big rig; I fly a hot air balloon, snow ski, and bicycle. That’s not a bad start.
Q & A from the List – Helmet
It`s time again to get the bike out but, even after 3 years, the helmet strap irritates my neck. It makes me have a coughing fit for a good 15 min. I tried using a quick snap but as soon as the strap touches the right side of my neck….bingo there i go. I was wondering if some of the other riders have any ideas?
There are helmets out there with chin straps. Police applications come to mind. Some states don’t require helmets, so check your state’s laws should you decide to ride without one (I have many times, but now live in VA, which requires one). Do you now use a windshield too? I have had to install one.
Keep the rubber side down!
The chin type strap that was recommended sounds like a potential solution. But, I am curious about why it is causing issues. My strap really doesn’t touch my neck much at all. I have it adjusted so I can put my finger between it and my neck and there is never any pressure on my neck from it. Plus the strap is located quite a bit higher than my stoma.
You might go down to a bike shop, try a few different ones on and see if you can find one that works – or a chin strap that does. You do have a windshield – don’t you?? Without one, you could have wind blowing the helmet back, thereby causing the strap to ‘get on’ your neck. I can see where that could cause problems, but I wouldn’t ride a bike without a windshield anyway, as getting windblown stuff in your stoma at speed would not be a good thing to have happen – at all!!
I still like to dove hunt, and shoot at paper and a few cormorants (that water turkey here in the South, they love to eat catfish fingerlings) still do a little woodwork. Load all of ammo for my shooting activities. (Charles)
Got my youth back!
I hung my Skis up 10 years ago. However 2 weeks ago whilst in the north of Norway visiting my son he wanted me to Ski with him, so I borrowed a friend,s skis and off we went, had a great time and I was just as good as I was 10 years ago.
Yesterday Me, My Wife, and 2 truck driver friends (Polish and Danish) spent the day skiing and I will ski again soon with 2 mates and have now made plans for the end of the month.
Its very expensive in Norway but its a thrilling game downhill skiing, I was apprehensive about skiing again as its been so long plus this laryngectomy crap in my neck but this recent activity has given me a boost to my morale and as a lary made me feel extra good being able to shine at the sport without anyone around me even knowing I had this disability. When I ski not only am I one of the oldest there but also the only lary there.
English Alan living in Norway . Laryngectomee since Feb 2010.
Never too late
Your story about returning to your passion for skiing reminded me of my decision to learn to ski instead of just watching others enjoy the slopes from the lounge with those who go to the Ski Park just to have a meal or a drink. I signed up for lessons and bought my equipment. That was 10 years after my laryngectomy in Mt Shasta, CA. The first couple of lessons were a stretch for me physically. I soon learned to tone up the muscles and core that were screaming at me. My local friends and I began to ski together when I was good enough to spend the day on the slopes. When the snow conditions are just right it is like “surf’s up!” is in S CA.
While I was still gaining confidence on my own I took a wrong turn to the left on the trails and discovered I had chosen a steep slope that was marked off for the slalom training for the Olympic skiers. They panicked when they saw me hydroplaning down toward them. I did great until I landed safely in a deep snow bank at the bottom. A friend who was behind me saw what I did and followed me to my landing place. We laughed ’til we cried. It was truly one of the most fun moments of my life! I’ll never forget that day. I surprised everybody, even myself, that I could manage on skies that well. A confidence builder that assures you that you can do almost anything if you give it an honest try.
Elizabeth Finchem, Tucson, AZ 10/78
Brings a smile and a memory
While living in Denver in the mid 90’s, our entire family (and 2 others) all made the trip from Denver to Breckenridge where we set out for a fun filled day of skiing. With skis in hand, I followed my son and a friend of his to a particular lift and while in line, he turned and asked me did I realize I was going to be coming down a black diamond slope and I waved my hand like it was no problem. My teenage son and his friend had spent 2 years on those slopes and he had gotten quite good on a snowboard…I, on the other hand, had never snow skied before.
Up the lift we went and at the top of the mountain we all jumped off….my son and his friend took off down the mountain on their snowboards, and I was left to figure out what in the world I was going to do. I have to admit it was the most difficult task I ever completed, only because I was not yet ready for that type of slope. Needless to say, I am alive today to talk about it…so that is proof I survived, but it was a long process going down hard several times, losing skis on numerous occasions, but I survived. Then I educated myself on the various kinds of slopes and it wasn’t long before I actually got down that original hill without falling after learning how to ski.
It is actually on my bucket list for us to go back to Breckenridge for a ski trip. As time goes on, I am finding there is very little I can’t do that I could do before my surgery. Life is good!
Mike Smith 2008
Hiking at High Altitudes
I recently returned from hiking for a week in the French Alps around Chamonix.
I had an interesting experience which lead to some drama but more importantly a useful bit of knowledge that I thought I would pass on. I was hiking at about 2200m (6500+ feet) near Montenvers. I had my regular base plate and flow HME in place. All seemed to be fine. However, after about an hour, I started to develop a headache, followed in quick succession (i.e. seconds to a minute) by a swollen tongue, unusual heartbeat, and finally an overwhelming urge to cry. I realized at that time that I was suffering from oxygen depravation and ripped out my HME. Everything returned to normal pretty quickly, although the swollen tongue took about 2 hours to return to normal size. But now I had a problem. While the temperature in Chamonix (elevation
~1000m/3300 ft) was 25oC/77F, you lose about a degree Celsius per 100 m of elevation, so the temperature at 2200m/6500ft was about 10oC/50F. While pleasant to hike in with a hot sun overhead, a dry cold breeze venting directly into your lungs isn’t so good. And the air up there is very dry.
I spent the next few hours conducting experiments with maintaining air flow and humidity levels. The net result of the experimentation is that a silk scarf covering the stoma (bunched up as necessary), covered by a wind proof cover (I used the pant leg off of a triathlon suit) that is wetted on the inside (i.e. the part lying on top of the silk scarf) periodically works wonders. The wind didn’t get into my lungs, the silk kept the moist and warm air close to the stoma and I was able to speak short sentences without too much effort. I simply couldn’t speak for very long without getting light-headed so no walking and talking but I thoroughly enjoyed my week hiking with this setup. What might also be useful to know is that I continue to use this setup now that I am back in the heavily air-conditioned office and again it works wonders to mitigate the dryness and coughing that we’ve all experienced with air-conditioning. I’ve switch to using a ski muff over the pant leg for aesthetic reasons but it works really well. Hope this is useful to know!
CHARGING BATTERIES ON THE ROAD
When out camping or away from home, you may need a way to charge your batteries out of your vehicle.
I am an Electrical Engineer so I will try and explain what you need in layman’s terms. When you plug your charger into a wall outlet you get 110 volts of AC (Alternating Current) at 60 cycle with about 3.5 to 4 watts of power in and 9 volts of DC (Direct Current) out at about 15 MA (Milli-amps) .3 to.5 VA (volt Amps) out. You will notice I said ‘about’ as not all chargers deliver the same amount of output power, these are about the average you will find for 9 volt chargers.
What does all this jargon mean to you, since all you want to do is charge your batteries in the woods. All vehicles have a 12 volt DC system so we have the DC voltage already. We now need to get it to 9 volts to sock it to your batteries. Any reliable electronics shop (Radio Shack) will carry a charger with a cigarette lighter on one end and the fitting for a 9 volt battery on the other and off you go into the woods all set to charge. Prices will vary when features are included such as over charge protection or trickle charge features. It is like anything else, you get what you pay for.
Hope this helps, stay out of the poison ivy, don’t step in any fire ants and don’t use nettles to wipe your butt!!!!
1. Siemens also offers a 12 volt charger with power cord. Just plug it into the cigarette lighter and you can charge your Servox batteries from your vehicle.
2. A charger that we use is a Tripp-Lite Power Verter, Ultra Compact Inverter, 150 Volts, from Batteries Plus. It plugs into the cigarette lighter. It has a three pronged outlet (I believe you can also get one with two outlets). Use for your Servox Charger or anything else you need to charge (camera) or you can run items like a coffee maker. How about a TV–(kidding).
Vicki Metz, class of ’96
STOMA PROTECTION WHILE SANDING, DUSTING, MOWING, WOODWORKING.
Ideas of covers to wear when using equipment that raises dust. Wear any combination that does the job for you.
1a. Stoma bib. It helps to catch and hold moisture as you breathe. If you are raking leaves, woodworking, vacuuming, or doing anything that raises dust, dampen your bib so it will clean the air for you. Many of us use these for simple cover up
1b.Make a heavier stoma cover: I cut out two pieces of craft felt – usually a 2” circle. I cut a 1/2” hole in one and then stitch or glue the edges together. Slip it over the HME and it is a cheap filter. I sometimes spritz with water. It works well for dust – I work in a wood shop. The paint and fume problem is a little more complicated. I cut a face mask into the shape of a neck trach mask, overcast or glue the edges and shorten the elastic to hold it in place. I have used a bandana too, but it gets to warm. The felt doesn’t overheat my neck, just the lung air and helps retain moisture. I also use the felt in the winter as a HME coat when its cold.
Jody Ann Black
1c. Foam stoma cover and a cloth one over it. You will have to be careful around sanders (hand, disk, belt) and anyone sanding on a lathe.
2. A Turtle Neck makes a nice seal around the top of the neck.
3. Hi-flo HME cassette 24/7 in a long fenestrated vent, but when I do any furniture building/re-modeling I wear a heavy stoma cover snugly fitted and over that the standard face mask for nose and mouth but put it over the stoma area. I only have hand tools in the apartment, but the power sander specially generates a ton of sawdust and it gets everywhere in the place. But not in the stoma. I have never seen any evidence in that area.
John S.—Class of ‘05
4. As I have written in the recent past, I have been searching for a respirator that would work for us neck breathers. Well, I have found one that seems to do more than I need and is at a reasonable price. It is a Triton Powered Respirator – Model # PRA001. It cost me $ 179.99 at Amazon.com. ( Note 8/2012: It looks like they this product is no longer available. There are however similar system used for welding and other uses. They can be expensive, so check around.)
It has a belt held filter/blower unit that is charged by rechargeable batteries. It says it runs for over 4 hours per charge. It has a combined approved hard hat, face shield and ear muffs unit that is attached to a nylon protective shroud that hangs down around your neck and upper chest – covering your stoma. Filtered air is pumped in through the belt pack, via a hose into the back of the helmet. The air is forced into the helmet/shroud providing filtered air to your face and stoma. You can flip up the face shield, but it must be closed to function properly. You can use the ear muffs, or they can be kept open to allow you to hear.
This unit says it is not designed for poison, flammable gas, explosive dusts or chemical vapor protection. It is designed for protection from mechanically and thermally generated particulates as would be found in such things as wood working, metal work, and welding.
5. You might try the inexpensive, throw-away, painter’s filters. You will have to trim them. I found cutting the top part of the circle straight across allowed me to lay it over my stoma, but the rubber band they have is useless for us. I tried stapling on a piece of cord at each upper corner and it fits nicely around the bottom of the curve but if you want a better seal, which is a good idea when you are kicking up some dust, use a few short pieces of tape to hold it in place. You can breath through this easily, dampen it to catch fine dust, and toss it when you are through.
6. ADVICE FROM 3M: (forwarded by our member)
The systems noted under safety are adequate for the hobbyist, but for those working professionally with heavy dust and fumes, they will need a professional system. The only one I have come across was the one that Nancy and Brian Nagle led me to and the one and only that 3M recommends. The information follows. It is costly and not necessarily for the amateur.
Jody Ann Black
Thank you for your interest in 3M respiratory protection products. Although 3M doesn’t offer a respirator specifically designed for someone with your condition, there are respirator systems that may offer you some protection. Specifically, A loose fitting hood with a Powered Air Purifying Respirator (PAPR) such as the 3M H-Series Hood with the GVP Series Belt-Mounted PAPR is suggested. The H-Series is a Tyvk QC hood with shroud that covers past the shoulders. The neck region would be enclosed within the hood. Once again, please be aware that the system has not been tested for use by someone with a tracheostoma.
The system would need to be purchased in components. I’ve provided a list below of recommended components for a typical woodshop application and have attached product files for both the H-Series and GVP PAPR. Additional product information may be found on our website at http://www.3m.com/
Please let us know if we can be of additional assistance.
Recommended H-Series/GVP PAPR Components:
H-421 Hood Assembly w/ Inner Shroud
GVP-122 Breathing Tube
GVP-1 PAPR Assembly (Motor Blower, Battery, Power Cord, Charger)
GVP-441 Organic Vapor/HEPA Cartridge
Paul Puncochar CIH
Technical Service (800)243-4630
3M Occupational Health & Environmental Safety Division
7. I have a several woodworking tools in my garage which includes a computer operated wood carver. The wood carver generates a lot of dust and I found the following equipment which worked for me. From Harbor Freight (approx $100). This unit is very portable and can be hooked up to any wood working machine. They also have larger units.
Here is a link to the item for more information:
1 HP Mini Dust Collector, Shipping weight: 21-1/2 lbs.
Perfect for the shop, work site or garage. This 12 gallon compact unit
is as powerful as many stationary collectors.
* Filters particles down to 35 microns (half the width of a human hair)
* 914 CFM
* 4″ inlet/outlet
120V, 6.8 amps, 750 watts; 1 HP; Dimensions: 13-1/4” L x 12” W x 12” H
I also use a silk bib.
Take care, my friends
8. The micron filter available from ATOS will help, however if he is in a lot of dust it will plug up pretty quickly. The cost to go through them quickly could be high. I do some hobbies like wood working and working on cars. I use a dampened stoma cove or bandana over my HME that helps catch a lot of the dust.
They also make filtered respirator units but they can be very costly and it is very hard to find one that will work for us.
I have a friend that painted his truck and he made his own filter system.
He took a PVC elbow connector that fit into his base plate and used some of the blue oxygen hose (a CPAP hose works well). That went down to a filter he purchased from an auto paint supply, that he put on his belt. The problem with this is that you are be breathing out the same way as you breathe in.
That is OK for a one time use but the moisture that we breathe out will cause bacteria to grow in the hose and filter, if stored. It worked well but should be discarded after use.
Another option is to use an external air supply with a hose to a trach mask.
This can be built from one of the air supply units that most of us had to provide moistened air after surgery. This would take some ingenuity and of course the hose could be a problem. The supply would have to be located out of the dust area of course.
Ron Mattoon Seattle 2010
Flexible dust masks
A Facebook user said he was going out to work in his shop. He was using a dust filter made by AstroAI. They are reusable Dust Mask with Filters that are made of cloth material, so they are flexible. I ordered one and it seems to work well around the neck however I had to wear mine upside down to get it to seal. They are available at Amazon and other retailers. They attach around the neck with a Velcro strap. The following is a link to see the ones on Amazon:
CAN I STILL SWIM AS A LARYNGECTOMEE?
1.Sent in by Bulent Batir
3. Sent in by sandrogeo gianferrari
Received this message (edited) Sandrogeo 2/2013 (Gorduno, Switzerland)
I believe the key to survival in a potential drowning situations (lary and non lary alike) is to keep your wits about you and do not P A N I C !
Once upon a time I was at the beach in Del Mar, CA and I waded into the surf up to chest height. Suddenly, a rogue wave came over me and knocked me underwater. I was wearing only a foam filter over my stoma. I immediately occluded with fingers from my left hand while I used my right arm and hands in attempt to paddle myself back into an upright position, which I did.
I did learn my lesson to abstain from wading into the water at chest depth while at the beach since the surf is no doubt unpredictable. In a better controlled environment such as a pool, it’s certainly safer but please let common sense and patience prevail. We hope to avoid lary drownings. We need not fear the water but do need to treat it with great respect.
Michael Csapo – 29 Palms, CA – 2000
Wearing an HME might give a small advantage in slowing the water into the lungs but does not prevent it. If you get too much water in your lungs even in shallow water, it is possible to drown while being upright, so as Michael says above treat it with respect.
Ron Mattoon – Seattle 2010
VIDEO AT 2009 SAN MATEO OF SWIMMERS
Laryngectomy & tracheostomy swimming – Aquather Service Enabling neck breathing patients to re-enter the water
This device is from the UK and I doubt it is available in the USA. The site does have some good information if you are thinking about swimming.
The following link has information: https://www.rdehospital.nhs.uk/patients/services/cancer_services/laryngectomy-and-tracheostomy-swimming-aquather-service.html
LARKEL SWIMMING DEVICE [Is not available in US at the present time]
There is a device called a LARKEL (from Laryngectomee and Snorkel), which can be purchased with a doctor’s prescription. The LARKEL is a rubber device – a breathing tube inside an inflatable cuff is inserted into the stoma and then inflated with an air syringe, forming a seal. You then clench the mouth piece with your teeth and breathe through your nose. Air then passes through the nose, down through the oral cavity, through the mouth piece, through the tube, into your stoma and finally to your lungs. Inhalation and exhalation, while wearing the LARKEL are through the nose. It has to be fitted correctly and you must have several training sessions by someone who is experienced in teaching how to use it
Federal law required that the LARKEL be provided on a doctor prescription basis only. Also, the law required the manufacturer to inform users of the possible dangers of improper use and to provide at least 2 training sessions, including a minimum of 3 hours dry-land and water instruction, in addition to physician consultation, LARKEL device fitting, and certificate of training.
Question on email list about Larkel:
I have heard of this item before, but was told you could not buy it in
the US and also had to be trained to use it. Where do you live and
where and how did you get your Larkel??? What was the cost?
My larkel was covered by medical insurance but I guess the cost are
about EUR 500. That’s not cheap for a swimming device, but considering
it will last for many, many years, implies the costs pro year will be the same as for your bathing suit.
I’m living in the Netherlands and, over here, there are several swimming
clubs for laryngectomees. These clubs have Larkel swimming instructors (all being larys themselves, and volunteers). They measure the right size
Larkel for your stoma, and train you in the application, so you can
get safe in the pool.
I don’t know about the insurance in the States, and I don’t know about
swimming clubs for lary’s over there. But if there aren’t any, you
should ground some, because it’s great for contacts and having fun!!
And also for some physical exercise.
BOB BAUER – SWIMMING WITH HIS NEWLY DESIGNED SNORKEL
Snorkeling in the Galapagos Islands
Watch the Video here:
How my Lary Snorkel came to be By Bob Bauer
After watching John Lubelski’s video demoing his Swimming dry suit I got to thinking how could I swim and breath through a tube (I can’t breathe through my nose) without having to wear the dry suit.
One day while on vacation I realized my base plate had to be air tight in order to voice. Well, if it is air tight it must be water tight! So, to test that theory, I put on a new HME, the push button type, pushed the button and jumped into the 4 foot section of the pool (almost gave the wife a heart attack). Stayed under for a few seconds and found it didn’t leak. The next issue was to find a way to connect a breathing tube to the base plate. Since the HME snapped into the base plate I needed to find something that could do the same. I found a connector that snaps into the base plate just like the HME. By using tubing, nylon connectors and wire ties, found at a marine store, I put the snorkel together. After testing it in the sink at home I found that the wire ties weren’t reliable enough for water tight integrity. So, I switched to shrink wrap and that proved to be a better solution.
After trying it on, not in the water, I realized it could easily become dislodged by something or someone hitting it. That’s when I came up with the safety strap idea. Using nylon strapping and Velcro, also from the marine store, I made the safety strap. By pulling the safety strap tight around the neck it keeps the connector from being jarred loose and also compresses the “O” ring on the connector to the base plate for a water tight seal.
As another precaution, before using the snorkel, I replace the base plate that I currently have on with a new one to be sure of a good water tight seal. So, that’s how my Lary Snorkel came to be.
(Bob, a WebWhispers member, demoed this unit at IAL Spokane, 2013. WebWhispers members may look up Robert Bauer in our WW Roster for his email address.)
JUST PLAIN SWIMMING
Some of us go in pools and swim again, very carefully, by sealing the stoma and being sure to have the stoma above water level when it’s time to breathe! I swam for the first time in over 4 years, and I did it one step at a time. I like to wear a mask that seals my nostrils and allows me to see clearly under the water. This is how I started swimming again.
Start slow. Shallow end of pool. Take a breath, seal your stoma with your thumb or finger while keeping a little air pressure against it blowing outward. Dip under the water past the stoma level. Stand up and breathe.
Repeat until you are comfortable and keep dipping a little deeper in the water. Next, push off to the side of the pool from 8-10 feet away. That way, you can know you will be able to grab the edge with your one free hand. Keep on going and next try across the width of the pool. Be sure it is shallow enough to stand up at any time and keep remembering to keep your hand at your throat till you are above water.
Whatever you do, be careful and stay safe. The only time I got water in my stoma was when I did not stop to think and removed my hand and breathed in too fast. I had a terrific coughing spell but that was all. Swimming with one hand is not as easy as swimming with two and you must pay attention to what you are doing. I always have someone in the pool with me.
One of our members, Elizabeth Finchem, has been swimming for years. The primary emphasis is on neck and shoulder exercises.
Pat Wertz Sanders
David Blevins mentioned some time ago that he had taken a picture of Bob Herbst jumping into the pool and we asked that he send it. So here he is… mid-jump.
OCCLUDING LARGE STOMA FOR SWIMMING
When summer comes everybody start thinking and finding a way to enjoy the swimming pool. As I have a very large stoma, that would be very difficult to occlude even with two fingers, I have found a way that I do recommend to all larys that want to enjoy a short swim. I occlude my stoma to speak or to swim with a hand exercise ball manufactured by Theraband. The company manufactures these balls in three different colors but I recommend the yellow which is the softest and molds around the stoma protecting the stoma from the water. Wish you all an enjoyable swimming. Web site: https://www.theraband.com/ Call The Hygenic Corporation for a Dealer near you. In the U.S. or Canada, call: (800) 321-2135
WET TOWEL FOR SHOWERING OR SURFING
I have had the Larkel for 8 years now, but don’t have as much confidence as I do with a wet bath towel wrapped around my neck, covering my stoma, and held securely by my hands. I use the wet towel when showering and also at the beach playing in the waves. I have full confidence when ducking under waves as long as I can stand up and have a secure hold on the towel. It is virtually impossible for any amount of water to enter the stoma. If a drop or two gets in your stoma, your natural system makes you cough it up. Anyway, that’s my experience over many years.
1. I live on the water (New Haven, CT) and I have a cottage on Cape Cod. My biggest loss as a lary is not being able to swim or being put in danger by walking on a shaky dock, or getting in
an unstable canoe or row boat. My wife and I tried to invent something larys could use to be comfortable on a lake or in the ocean. Something like a tube with a harness that would keep our stoma way out of the water, we went to Sports Authority to get ideas and there hanging on the wall in the fishing dept. was what we were trying to invent It was a tube covered in a tent-like fabric with a fabric seat like you would put a toddler in to put in a pool. As you step into it you can pull it up to your waist and walk into a lake or in my case the ocean. Once you walk in past your waist line you will float with your entire chest, neck, and head safely above the water. On the left and right sides of the tube are zippered pockets that can hold soda, beer, food, etc. Behind my head is another inflatable pillow that can be blown up or left flat. I love my tube and strongly recommend it to any one who wants to safely and nicely get back into the water.
2. Float Tubes can usually be found in any good sporting goods store. Especially in an area with lakes. Get a pair of simple swim fins and you can really move out. I used to use one in Utah (Before Laryngectomy) and the only problem I had was trying to walk with fins and holding the tube up until I got into the water. Be careful using them around surf or heavy boat wakes. They are a trifle top heavy when loaded with a body.
3. I have been Fly Fishing in a float tube since the 70s. I have even fallen asleep in it while on the water. When I set in mine the actual tube is almost chest high. The majority of your weight is below the tube and it would be extremely difficult to tip it over. Possible, but you would have to be trying to tip it over.
4. I started bass fishing out of belly boats (tubes) over 40 years ago. I have spent many hours on the lakes and rivers in a tube. I just wanted everyone to realize that they can turn over.
You have to show a little caution when leaning over while in a tube. Also the snap that holds you can come loose or break so you should check the rigidity of the connection each time before you go in the water. Some people use swim fins to move around in the tube but I always preferred the foot paddles they make for them. You can buy a belly boat out of the Bass Pro Shops, online, for about $50.00. They also sell the foot paddles that go with the boat. The foot paddles are hinged and fold when you move your feet forward then engage to propel you through the water. I bought my son a belly boat and paddles from Bass Pro for Christmas. Personally, since I have become a lary I won’t fish out of a belly boat, too dangerous. I prefer my BassTracker instead.
For photos of a many different types go to Cabelas. Type “Float Tubes” in Search or go to your favorite search engine to find other companies.
Water Survival with a Laryngectomy
1. BOATING AND SWIMMING
I can really identify with concerns about getting out on the water, but I hope I can put your minds at ease. I am a lifelong sailor and small boat person and I had my surgery at age 64.
I was fine until I read one of those books they give us when we are in the hospital that indicated that larys should never go on a boat much smaller than an ocean liner. The fear nagged and grew as I readied my ‘fleet’ of a 14′ catboat, an 11′ Boston Whaler and an 8′ rowboat for the water. When the day finally came that my beloved 50 odd year old sailboat was launched I actually wished the launch day had been delayed – a real first for me!
But then the miracle happened. I had been praying for guidance and suddenly I found myself on the beach asking myself what the heck that fear had been about. I’ve been out in small boats all my life and never fallen overboard from any of them so why in the world should I start now! I got into my rowboat, went out to the catboat on her mooring, was VERY careful in going from one to the other and have honestly not worried about it since. I am careful, but I truly don’t worry. So my advice to you would be to continue to do the things you love to do, be careful and ENJOY being alive. If you can work all of this into an excuse for getting someone else to mow the lawn more power to you, but I cover my stoma well and mow the lawn and paint with that nasty marine bottom paint and have had no ill effects.
Elinor Ripley from Cape Cod
MUSTANG L.I.F.E. JACKET
UPDATE: The Mustang L.I.F.T. Personal Flotation Device described below is no longer available to the public. It is available to the Coastguard and can only be purchased with a government credit card. I have contacted the manufacture and they know of no other unit that meets our needs by them or any manufacture. They said they will review the concern and may come out with a replacement. I will update the information when I have it. I am leaving the information on the site until we have an alternative in case you might find one.
Ron Mattoon, WW webmaster
2. The L.I.F.T. life vest that I refer to is made by Mustang Survival in the state of Washington and I am still using the one that I bought several years ago. I have never had to pull the cord to inflate it, but it is a real comfort to have and is so (what’s the opposite of bulky?) that I forget I have it on. The one I have can be manually inflated and I “blow it up” about 1/3 of the way with a pump and find that I can paddle around “swimming” on my back – which is better than nothing. I got my vest from Landfall Navigation and am sure you will find other sources if you search the Web. If there is still a choice between manual and automatic I’d recommend the manual so that you can partially inflate it for ‘swimming’.
I tested my Mustang L.I.F.T. jacket when I first got it and found that it works just as advertised. It was a fairly windy day, and even with waves my stoma was at least 5 inches out of the water at all times. In fact, I was lifted so far out of the water that I had to partially deflate the vest to try a bit of “swimming”.
More from Elinor Ripley from Cape Cod
3. QUALITY OF LIFE (with L.I.F.T.)
I’ve read a few emails on our list that talk about giving up boating after a laryngectomy. I have to put my two cents in about this subject. I have been boating for the past 35 years, and had my operation 8 years ago. I guess I’ve been very lucky because the only thing I have given up is yelling at my kids. It never even occurred to me to stop going out in my little sport cruiser. My wife and I take overnight cruises using the normal safety precautions we always take while on the boat. When I found out about the flotation device made to hold you higher in the water, I got one (it made my wife feel better).
There are some things it is absolutely necessary to give up, depending on your individual situation. But when the boating season comes along and you get that itch to be out on the water, think back to how many times you have fallen off your boat. And think about how much you want your “quality of life” impacted by your operation.
The L.I.F.T. Vest is made by Mustang Survival. It is available from Landfall Navigation http://www.landfallnavigation.com The Model # is MD0450 Hydrostatic Automatic. The price is $200-300 (check on-line. It’s high cost but well worth it). The vest comes with a full set of instructions and the website has all the information about the vest.
When it comes to boating, no matter what type, normal safety precautions, a good set of charts, a good VHF radio, a GPS and a seaworthy craft are the first prerequisite to a fun cruise.
Lou Holtman Poughkeepsie NY class of 2001
4. L.I.F.T. PFD DEMONSTRATION
I have had the MD0450 PFD, automatic model, for a number of years.
I have tested it as seen in the photos.There is a conversion kit to convert to manual inflation; however, doing so will void the USCG approval.The pump, shown below, is used, since I can’t use my mouth, in the event I need to add air to the PFD.
Thanks to Bob Bauer Class ’08 for the information and demonstration.
Another Flotation life vest made by Ocean Hammer Ergofit has been purchased by some Laryngectomies. It says it lift the person higher in the water. I would like know more about it and how well it works for us. Here is the link so you can check it out and it is cheaper that the Mustang LIFT vest.
UK disability options
The following like has information on disability options in the UK. It has good information that may apply to other countries as well.
Prepared by Sarah Lindsey, a freelance writer in the UK.
Madlyn Walton Class of 98 sent this in hoping to help all WebWhispers friends with choices to: Dress up , feel good and carry on.
The following is an accumulation of information regarding options for covering your stoma, scars, etc and still regain access to clearing the stoma in the most unobtrusive way. This is a summation arrived at from trial and error, and I hope it will save everyone some time , effort and money.
Check out the Webbies Workshop section in the suppliers section for more options.
Wigs: turbans and hairpieces for women:
I use a fairly inexpensive company called Paula Young. There you will find colors, wig care products and styles to fit your image as well as your budget. The WHISPER Lite wigs last about 6 months before I find I have to rotate them to a gardening wig versus a dress up wig. They can be washed simply with woolite or the companys products but their wig conditioner is very much worth purchasing. Price ranges from about 39.00 to about 175.00 depending on the fabric in the wig. But they do NOT require resetting; and drip dry in short order, therefore requiring minimal upkeep. It definitely is a shake and go situation which makes all the ladies in Zumba jealous.
I usually keep a few of the old ones to go to exercise class, or gardening ,therefore having about three or four on hand . The company also runs many incentives and promotions and this will keep your costs down. They are quite amenable to a return of a wig if you don’t remove the tags. They will also send you sample swatches if you are unsure of colors in the catalog.
Turtle necks and mock turtle necks :
By now most of you have had experience with these. I like the mock necks more than the longer turtlenecks since they are easier to adjust when clearing the stoma. The best companies that I have found with reasonable prices, variety of style and excellent shape retention at the neck ,to allow many stretches to get to the stoma during the day. Their care is easy and I have worn them both winter and summer. The large sizes are excellent for
men , who want to wear a sleeveless one under a light weight shirt and eliminate the problems of the “Dickie” which creeps up across the chest. These will stay in place and look as though an undershirt is being worn under the lighter shirt. I also use the mocks under v neck sweaters and jackets. Contact Damon and Draper: A little more expensive than the others, but it sometimes is well worth it for the materials and style. A womens mock neck may cost (polycotton) about 22.00 Others with cotton silk will cost more but the materials require more care as well. They have every color imaginable in every size including petites. This is my go to place ( 800-843-1174)
Tog Shop: is the sister shop of Damon and Draper: Their products are excellent and are a little less in price Damon and Draper and tend to be a little less trendy . But definitely a good buy for straight up colors for cotton poly mock and turtlenecks. Theirs tends to run a little heavier in weight vs Damon and Draper.
So they are better for the fall and winter.
NATIONAL Wholesale Co. Inc: is an outlet that sells the above as well , fabric is heavier and less refined. This may even work out better for men since the sizes seem to run larger. But definitely a good bargain.
SCARFS: Those things we can”t ever seem to get to sit like the photos and once you try to clear the stoma they are not in the right place anyway. I just discovered two products that are the greatest thing since sliced bread. One , is a magnet with a decorated cover. It is strong enough to hold two ends of a scarf in place over a dress. When you want to clear the stoma, you can get underneath it with minimum effort . The decorative part is hand made and has very simple design . Magnet is too strong to be worn by a pacemaker person. And keep it away from your watches in your drawer. I keep mine on the refrigerator.
Lovely pins , not frilly, and really you only need a couple to cover all color outfits.
Contact: Diane Kline
439 Alden Road, Honesdale, PA 570-785-9421 Diane@DianeKline.com
Hand Made Decorative Scarfs: for that special dress and occasion. These are all hand made , with satin’s , pearls and whatever you want. They snap on and stay in place. They are very stylish and beautiful and tend to go from 35.00 up to about 85.00 . But they hide the recurrent trips to clear the stoma and are a good substitute for jewelry as well. The artist is very able to adjust to your needs and is thoughtful in customer satisfaction. For the guys, there are some which are not frilly and can be worn as an ascot. I am sure the artist will accommodate your requests.
Last but not least, another inventive try is using Scungis from the hair department in makeup area. These are usually made for hair ties but they have some elastic, light weight scarfs that can be worn around the neck , instead . They have recently come out with a twist tie scarf which has a light wire running through it. It stays in place easily, easy access to the stoma and don’t bunch up and best of all …….They are really, really inexpensive. So you can afford to buy a few. Great standby at the beach or pool..
IMPROVISATION: If you only have a T-shirt at hand, try wearing it backwards, after removing the tie. No one really notices and it is just high enough to cover the stoma. This also works with a boat neck shirt. You can also add a short scarf and no one would even guess. For casual wear I sometimes buy teen sized soccer shirt (without the numbers of course) and the neck is higher than the average T- shirt.
Find more information in our Library: under Stoma Care Section.
Many choices of types of stoma covers are shown along with instructions on how to make some of them. Also ideas on where to find scarvesand how to tie them.
SHOWERING AFTER LARYNGECTOMY
You will be told by some that you cannot take a shower and by others that you have to be extremely careful or you will drown. In reading these hints, you will notice that many shower without any shield or covering, others use ones manufactured for this purpose and others have homemade devices. Most of us who like showering find a way to keep that as a basic part of our lives and it becomes normal again. We asked WW members to send in their favorite showering hint.
1. I make sure the water falls on my shoulders and do this by bending forward a little bit when I cannot lower the shower head itself. I do have a shower at home which can go up and down. That is a lot easier. I wash my hair by bending forward with head down under the water so it falls on my head and neck and won’t go into my stoma. I use this since the day after my surgery. That is almost 14 years now and still counting.
2. In order to save a few dollars I have recommended baby bibs which are terry cloth on the inside and plastic on the outer side. Of course this does no good shampooing but one can just bend over to do that.
3. I shower without a stoma shield, turn my back to the spray to wash my hair that way and tilt my head back to rinse. A shower spray that can taken down and held in the hand can also be used for rinsing. When I turn to face the spray, I occlude and step right into the shower stream. When I was a new lary, I used a shield every day and then only when I washed my hair until later I quit using it at all.
4. I tried some sort of shower guard early on, but gave it up as too clumsy. Now I just keep a dry clean washcloth handy to cover up while getting that area wet. If I do get a little water down the pipe, well, it’s only water and it’s good for us to keep the plumbing moist, no? In other words, simple is good. Which is good news for simple folks like me. AND … conserve water! Shower with someone you love!
5. I haven’t seen the showering tip that helps me avoid getting water into my stoma when showering—I leave the foam square on until I’m almost done with the shower. It gets wet, but so far in 4 and ? years it has served me well. One other thing, instead of a standard shower head I found an extension that drops the shower head down about 14 inches with a swivel head and a shut off right before the shower head. I found it at one of the home center stores..
6. I found that if I stand under the shower and bend my head slightly forward when I’m directly under the spray, no water gets in my stoma, and I’m even able to wash my hair, with hardly a cough. Also, a hand held shower attachment (that screws in easily in place of the shower head) is much better. It saves a lot of fancy footwork on a slippery porcelain surface trying to get the right angle of water attack while avoiding direct hits to the stoma. I’ve tried the shower covers (the tie-on, bib-like things), but for me they were a lot more trouble then they were worth.
7. I have long hair — below my shoulders most of the time, and I have long mutton chops which sometimes touch my chest. So a two handed shower is vital for me — I need a shower guard. The ones that Lauder sells last forever — I have one that is about ten years old and it is just fine — and I have one in each bathroom of each house and one in each vehicle I own –just in case.
8. Of the two types that Inhealth sells, I personally prefer the nylon one because the shape seems to conform better to the neck (and is more watertight), and the velcro strap is larger than the rubber one and lasts longer. It does, however, get dirtier because of the nature of the material on the inside, and eventually cracks at the point above your stoma. To cope with its getting dirtier, I wash my neck with a washcloth before putting it on.
9. I do use the rubber shower guard and have right along. Because I have a small neck, I clipped off about 1-1/2″ of the velcro and had it sewn back onto the collar above where the original velcro began. This allows me to have a snug fit and to stand straight up under the shower head while washing my hair. Since I’m often still waking up while showering, I don’t have to think about moving at angles to keep the water out. It works for me.
10. I do not use a shower guard. Never have. If I stick my face full in the shower, then I use one hand to cover my stoma. Other than that, my chin tends to protect it. I occasionally will get a drop or two of water, then cough some, and don’t worry about it.
11. All I do is lean forward under the shower to wash my hair and the water washes down over my chin and not into the stoma. If a little water gets into the stoma, a robust cough clears it , no problem. It took some time to get it perfect but time and patience works every time.
12. In Lauder’s “Self Help for the Laryngectomee”, he mentions a mirror — and I did find that useful — found one cheap in a second had store, plastic frame — hung it right below the shower head. It helped me visually locate my stoma right after the surgery. Now I have it’s location memorized. (smile) Also, a hook in the wall above the shower head — I hang my shower guard there. I have just discovered the amazing properties of a nice new shower head — it adjusts much better than most — I think it was about $20 — and a lever moves it easily from lots of small jets to three pulsating jets – I can simply reach up, turn the stream to the three large pulsating ones, put my thumb over my stoma, and blast away. I know that showering was an adventure in the beginning — now I don’t even think about it.
13. For people who wear a shower guard and have small necks. The velcroed opening may be too roomy even with adjusting it down as small as it will get, so I cut off about 1-1/4″ from the part that hangs off the latex. That cut-off part can then be sewn back by machine onto the same side above the pre-attached velcro and you now have a snug fit.
14. My wife found a 99 cent Foam Sun Visor at the dollar store. It has the shape of the visor like any baseball cap, only it is made out of soft rigid foam, 3/16″ thick with an elastic coiled cord in the back to hold it firmly to the back of your neck and is adjustable. I tried it today in the shower and the very light foam kept its shape and preformed as I hoped it would. I could breath very easily, and it is waterproof.
15. For those of you who use the old style InHealth HME filter holder, I found a cheap solution to the shower guard. The fitting costs 25 cents at Home Depot. It is located in the plumbing aisle, sprinkler fitting section. It fits snuggly into the holder and you can either put the little sponge disk in or leave it out. The fitting information is as follows:
Manufacturer = NIBCO
Item No = 4707-2
Description = CPVC Street Ell
Size = 1/2″
UPC = 0 39923 10776 3
It is not FDA approved and is not patented or guaranteed by me. It just works for me.
Jody Ann Black
16. Home made shower protector using 2 hard plastic trach tubes. Leave one tube as is but cut 2nd tube to be shorter. Glue the cut off tube into front of complete tube with clear PVC glue to form an open U shape. I also glued light plastic pieces to fill in the holes to the outside. I just hold my chin down when showering. Works great for me.
Paul Frehner 2009
17. I took an HME filter, removed the foam and fabricated a new
thing made of silicone tubing cut, shaped and way longer with larger
diameter. I put it all together with fine nylon string on the outside and
hot glue over that so there is no chance of anything getting in my
‘pukka’. [McGyver like –the word for hole in Hawaiian is pukka] and the thing works great for me , just plug it in like an HME and have a shower!…….. we are all different ….
18. As a newbie, I am scared to take a shower without some cover, so, okay, I am a chicken! I have also tried to shower doing all of those things I have been reading about on this site and my hat is off to those who go stoma naked. I was given one of those vinyl protectors and tried to use it but found it did not conform to my neck tightly and water leaked into my stoma.
I went to our local Ace hardware store and bought some door weather proofing insulation, foam rubber, half inch wide. used gorilla glue in addition to the sticky stuff on the insulation and it works great for me, cost a couple of dollars and no leaking.
John Summers, Florida
Below Are Some Assorted Shower Guards That Are Available From Various Vendors
Making your own shower cover
I sew the pieces together because I haven’t found a glue that will hold. The foam glue does not hold well enough. The foam is available at most craft or hobby stores like Joann’s, Wal-Mart, Hobby Lobby, Michael’s. There are coupons available often online or in newspapers for these stores except Wal-Mart, so it costs very little to make the guard. The sheets are available in many colors. I think a foam visor with a shoelace or string would also work and require no crafting. They are also available at the same stores.
Jody Ann Black
Joann’s Fabrics Foam: http://www.joann.com
Hints for hair
WASHING YOUR HAIR – Ideas from members
1. When I wrote asking for help with ideas for washing my hair, I received one very good suggestion from 3 different sources and it is the one I have adapted for myself. It really is simple (so simple it didn’t occur to me to try it) but just to kneel on the floor on the side of the tub and using the hand held shower head, wash and condition your hair. By bending over the tub your stoma is protected and it has been working very well for me. I changed the action a bit as I wear my shower guard neck piece as a little added protection and I do keep a small hand towel by my side. This little addition in no doubt due to the fact that I am still a “newbie” and a little anxious over many activities which I am sure will become naturally as time goes on. I also was told that the kitchen sink seemed to be a favored spot and worked well for several people.
2. I use a wall mounted adjustable slide bar with a shower faucet that can be set at any height. It has three spray settings and you can put your head back like a salon shampoo. It detaches as a hand held one also. Delta makes it. I tried everything but this works great and you don’t need help. I don’t cover my stoma at all but you could use a foam filter or something till you’re comfortable with it. Good luck.
3. A hand held spray from the shower can help to direct the rinse to rinse your hair away from the spray toward the stoma.
4. Let us put your idea here??
GETTING YOUR HAIR CUT
The girl that cuts my hair puts the cape over me backwards, allowing me to adjust it over my stoma for easy breathing, then folds it over my lap to protect my clothes. Works well.
Mary Glyn Spivey
Am I just dreaming or are there pillows that can help us larys get a good nights sleep when so many of us have neck and shoulder problems? What do you use?
Wedge Pillows – There is one with about a 12″ rise and another with a 7″ rise. When I was first home from the hospital, I used the high one, later the lower one but I raised the head of my bed on wooden blocks.
Bed Wedge. Available in 3 convenient heights: 4″, 7 1/2″, 12″. Complete with one percale fabric zipper cover. Bruce Medical
Ideal for travel, camping, the beach, When fully inflated pillow is 8″ high. Washable cover included. Inflated size 8″ H x 24″ L x 27″ W. Bruce Medical
Feather pillows so you can shape them the way you like.
I use the formed pillow – I have always used a foam pillow but since I have a chronic problem with my neck, the dip in the center keeps my neck more stable because my head is kept level. And I travel with it, all the time. We bought a select comfort bed a few years ago and it is great (the air bed). I like my side firmer than my husband does. So now we are both happy.
Best of all are the Sobakawa type pillow filled with buckwheat hulls. You can push them around into any position, pull them up under your neck and they shape to you. I had one of this type pillow that I loved and was given another. It was a heavier one, too thick, so I opened one end slightly (be careful, it can make a mess), and removed about a quarter of the seeds. I used those to make a little neck pillow for travel or to use for my neck when I use a wedge pillow. It works.
I have one for acid reflux that helps me get a good nights sleep. They are not cheap.
There is a blow-up travel pillow that you don’t have to blow up. (A little problem we have). It is made by Samsonite and when you open the plug it fills with air.
I bought one of those travel pillows that you don’t have to blow up. I found it at Target. They do work quite well. I keep it inflated at home when it is not in use. It seems to help fill it faster after I have to deflate it to take on a trip.
When I travel by car, I use a Samsonite neck pillow which I can blow up. Yes, we can blow up a pillow. People with a TEP can close it after a deep breath and use that air. I use the air that is in my mouth because I don’t have a TEP. It just takes a little longer. When I had my operation, my Speech therapist made me blow cotton. To include my kids in my therapy, we also had little Ping-Pong balls, made some goals on each corner of the table and played table soccer by blowing through a straw. Believe me, we have more air in our mouths then we think we do.
Can your choice of bed help you sleep?
Raise the head of your bed with wooden blocks. About 6 inches should give the proper slant to help keep stomach contents from washing up. You’ll also breathe better.
Just prior to surgery I splurged and bought an adjustable bed which I think has been a great help from Day 1. Seems like the change of position in elevation of head is very helpful for a good night’s sleep.
We bought a waterbed. It is stabilized for 90 % so not soft and since then, I only need one pillow. This because the bed adjust to your body. It kind of curls up around it. Very comfy.
U.S. DEPARTMENT OF LABOR
Office of Disability Employment Policy (ODEP)
A World In Which People With Disabilities Have Unlimited Employment Opportunities. All of the latest news relating to work opportunities for people with disabilities and what the Department of Labor is doing.
There is a free newsletter to sign up for the latest news and updates from ODEP. Enter your email address or bookmark the site so you can go back to read new additions.
JOB IDEAS FOR GOING BACK TO WORK OR FOR SENIORS
Seniors have many years of experience and can use that as options to start their own business or open opportunities for work. The following site give some helpful information.
JOB ACCOMMODATION NETWORK
The ADA Amendments Act of 2008 became effective on January 1, 2009. Although the Equal Employment Opportunity Commission (EEOC) has not yet completed the regulations for the new legislation, ODEP’s Job Accommodation Network (JAN) has developed both a publication and a resource page regarding the Act.
EMPLOYMENT FOR LARYNGECTOMEES
As a professional recruiter with over 22 years of experience, it saddens me to see people so discouraged by the mindless prejudice of prospective employers.
My specialty has been computer systems for professionals in banking and securities. In my career I have had the privilege of working with people with disabilities. I have been amazed by how many can “more than compensate” for their disabilities, primarily because of their self-confidence in their skills and experience, as well as their positive attitude towards their work. Professionally speaking, some have been among the best people I have worked with.
I think that you should consider first, that finding a job is tough for everyone who is unemployed, not just for people with disabilities. I offer, however, a few tips that might be of help. The best way to find a job is through ones own personal network, especially people with whom you have worked in the past. They are very likely to know of any openings where you might fit into in their current company and would serve as an excellent “in-house” reference that any hiring manager would welcome.
Considering that most people you speak with will not know of any openings, be prepared to ask if they know anyone else who might know of a job opening. Build your network by getting the name of another person to call.
Try to maintain contact on a 60 – 90 day basis. Do some research on companies that might have one or more jobs that may be a good fit for you including competitors, clients or suppliers to your former employers. As you identify prospective employers try to find the person to whom you would report if hired and mail your resume directly to them. If you don’t hear from them in a week, call them. I do not think mailing or e-mailing your resume to human resources will get you anywhere as they are already deluged with solicited and unsolicited resumes every week. Nor do I think posting ones resume on the job boards – one among tens of thousands – will yield much success. But if you have nothing else to do, post it with no expectations.
Above all, don’t give up, as slim as the chances might be. If you give up there will be no chance. When you get an interview focus on one thing, that you can get the job done. That is all that counts. If you can convince a prospective employer that you can get the job done, you will be hired.
John Russell, WW Member
WENT BACK TO WORK, RETIRED; WENT BACK TO WORK AGAIN!
My former employer, Naval Air Systems Command, was very accommodating. I had a lot of sick leave saved up, so a month off when I had my surgery was no problem. After the surgery I went right back to work after a month off, two weeks for the in hospital recovery and two weeks at home recovering. I worked another 2 years and, having the years of service and age, I retired.
I lived in Maryland then. I moved back to California. I was bored so I started looking on line for employment. I found this web site titled National Older workers Career Center, that employs older workers at the Environmental Protection Agency. It turns out that they had a job at the San Francisco office that I could do. I also had a phone interview. I speak with an electrolarynx and it went OK. I have been working at the EPA for 3 yrs now, and they say they have enough funding to keep me another year.
Yes, age and breathing through a hole in your neck are negatives but I found there are websites online oriented towards older workers getting employed. The folks here at the EPA have been very nice to me, even though I am old and speak with my EL.
I don’t make the pay I did as a GS-13 employee, but I don’t work that hard either. And one of the benefits I now have is two medical insurances and a dental insurance plan. That has reduced my out of pocket expenses.
Some of the websites I have found in my search:
http://www.aarp.org (lists employers recognized for exceptional practices regarding older workers and national employers that abide by age-neutral policies. Its foundation also sponsors a worker information network to help older workers manage their job search.)
http://retirementjobs.com (lists jobs for people over 50 and offers “age-friendly certification” to employers)
http://www.RetiredBrains.com (a large independent job and information resource for boomers, retirees and people planning their retirement)
http://www.SeniorJobBank.com(helping employers connect with the over 50 talent pool)
http://www.workforce50.com (employment and career change resources for people over 50)
http://www.yourencore.com(a network of veteran scientists and engineers provide companies with fast, flexible and secure access to recently retired experts)
http://www.Seniors4hire.org (an online community for those 50 and older and the companies that want to recruit them)
Good luck and Good Hunting
I, too, find job/career a VERY important factor in my life. My surgery was mid-2010 and I’ve worked pretty much through it (with about a month’s break, off course) and since. But my work is as an independent consultant and I was very lucky to have a couple of good clients who have kept me busy. However, those projects are wrapping up and I need to “get out there and face the music”. I’m rather apprehensive about reactions and rejections I will meet because of the way I look and speak.
WOULD LOVE TO HEAR OTHER’S EXPERIENCE IN THIS AREA! How does it work for those who have to sell, either themselves or things? If you have a story, or found out what works and what doesn’t, please share!
Many of us Larys that are working went back to jobs that we worked before the surgery. Myself, I had quit my job but was told I could
come back whether I could speak or not ( office work) and I went back after 10 weeks because I was just to bored.
I went back to work for two years…in Major Account Sales…sold to multi-million dollar companies.. was the #1 sales person..but…after the two years..it kept getting much more difficult to do my job.. the air conditioning took a real toll on me, plus the tiredness and I had to go on full disability. If you do, make sure to take ALL your Dr.s records, files and the more info for SSI, the better. I was approved in two weeks time!!!
I am a consultant (software educator and developer.) Once my doctors gave me clearance to travel for work again, it took me about 4 months to land a job. This full-time position with an International consulting firm had me hopping in 2012 and 2013: I worked in and commuted to and from seven US cities and rang up over 175k miles in those two years! But things are a little quieter at the moment; in January 2014, the company had a reduction in force and I am back on the job market.
My approach both back in 2011 and now is to not “sugar coat” or hide anything from potential employers. My resume contains an entry titled “Medical Hiatus” with the corresponding dates. The folks serious about hiring me ask “what does that mean,” and I explain that I use an artificial voice but otherwise I am fine. Typically, this occurs during a phone interview and answers their questions (grin). Once at a client site, I am treated as an equal as far as work is concerned. Several co-workers at
different sites have asked me to speak with them privately. This has involved family members and recent diagnoses and me describing my situation, my treatment (chemo and radiation), rehabilitation and my “new normal”.
So, nothing that has really changed from a work perspective except I don’t work as a “platform instructor” in a classroom anymore. I was recently fitted with a hands-free HME, so even that may change in the future! Best wishes to all and remember the words of Wayne Gretsky: “You miss 100% of the shots you don’t take.”
I retired in 2005 at age 57. I was a safety engineer in the mining industry. Before I retired I set up a consulting company specializing in supervisory effectiveness. I worked as much as I wanted from 2006 through 2010 then my health started to go down hill. I thought it was just getting old so thought no more about it, just kept turning down work until they stopped calling. Turns out my health was being affected by thyroid cancer. Went through a pile of surgeries until my laryengectomy in 2012. I had just never gotten around to unwinding my company and this year a firm dropped me a note asking if I would do some computer work upgrading training courses for them. At first I was reluctant as, not really what I envisioned using my skills – but then thought a bit more about it and figured if they are willing to pay my hourly rate to edit some programs, what the heck. Long story short – the first three courses I was asked to edit have turned into 27 courses.
I work a couple of hours a day, usually in my housecoat, and am enjoying it. I could never go back to what I enjoyed, supervisory effectiveness, as that entails going underground and no company in their right mind would let me, and I’d be crazy to try.
Point of this post is, there are jobs for us after surgery. We may have to pull in our wings a bit and take something that uses our skills in different ways but this is the new normal. Good luck.
I am in the inspection field working as a Certified Welding Inspector (CWI) and a level II MT PT tech. When I got sick and had my lary operation, I was at work one day and gone the next as my surgery was scheduled within days of detection. This really put my employer in a bind as no one knew all the things I did to keep things moving through the shop and they were very supportive during my recovery. I returned to work 6 months after surgery and have had very little trouble, the biggest thing is the noise level on the shop floor and my appearance. People got over the appearance thing pretty quickly, I wear a Blom Singer hands free HME, and they also learned to listen more closely when I speak and we kind of have hand gestures that just seemed to evolve. I’m hoping to retire from this company but feel pretty certain I wouldn’t have a hard time finding another job. I’m 56 now and only have about 10 years to go until I retire! Good luck out there.
I too had to deal with an employment crisis. My company down sized three months prior to my surgery and I was left out of a job, a job in the retail furniture industry, sales and sales training. I depended on my voice to make my living, and I wondered what would happen to me. Well, I stayed positive and I was told by others, that larys have been able to go back into sales and function pretty well. With my experience I was hired by a national company in sales, but when I went in to meet the store manager, someone I knew from the industry, the job suddenly was not available. I was very disappointed and a bit angry.
I continued to look for work, finding an opportunity (on Craig’s list), at a near by furniture store, and I was hired for the sales job, and this April makes two years I have been there and doing well. This company never had a problem hiring me, and I am sure my positive attitude had a lot to do with it. Most customers notice the way I “talk” differently, at first, but within seconds we are chatting like nothing was unusual. I do have moments where I have to clear my trach and I always have tissue in my pockets. I do not cover my stoma with clothing, except for my TEP and baseplate. I want people to see I am not handicapped by this inconvenience, which is all that this is. I still make my living with my new voice, and I am told I talk more now than I did before. I hope this helps you in finding employment.
WW MEMBER RETURNS TO RADIO AFTER SURGERY!!
WW Member Dennis Leo, born in 1949, lives in Kurri Kurri, New South Wales, Australia. Dennis was working as a radio announcer when diagnosed with larynx cancer in 2004. Non-
surgical treatments ultimately failed, so Dennis underwent a laryngectomy in October of 2004 and acquired an indwelling TEP/prosthesis two weeks later. Encouraged by his ENT, Dennis returned to broadcasting in early 2005 on CHRFM 96.5 in Hunter Valley, NSW, starting a new program called “Sunday by Request” on February 6, 2005 from 6:00 PM to 8:00 PM. This is a talkback, request-type show that attracts a lot of callers. Dennis has also augmented his TEP/prosthesis with a Blom-Singer HandsFree device.
We love our pets. Many people worry prior to having a laryngectomy that the relationship will change, that the loss of the old voice will make a difference in communicating with beloved pets as well as other humans. Pets are more adaptable than you might think but our group became aware of a problem with some health care specialists when a pre-lary wrote in to say his doctor told him that because of the hair and dander, he would have to get rid of his three dogs. He was anguished at the thought. The response on our list was unbelievable with many people writing in to tell about their pets and most of them ending up with what one person put in few words, “Keep dogs. Fire doctor.”
Here are some ideas from members to make the transition easier.
Many of us have dogs and cats that share our beds or our bedrooms. They certainly snuggle up to us. Wear a stoma covering of some type to avoid floating hairs or what you might breathe in when they shake off bits of grass, pollens or dust. No use in asking for a coughing spell.
1. We have two 14 year old Shih Ztus’ bundles; Minnie (Mouse) and Daisy (Duck). I became a laryngectomee survivor in November 1996 and they were of concern as I had an office at home and they were use to me 24/7. When I got home, I immediately did a lot of hugs and doggie kisses and allowed what had previously been a no-no…allowed them to climb into bed next to me. I then continued what had always been their routine for going out and feeding. They never have been barkers for outside or food but rather have always followed a routine….the difference being that this routine was now accommodated by hand signals or claps. They got the idea within just days. Claps were come here, fingers pointed downward were lie down, hand motioning upward were stand up, circling hands were turn-around, just opening the door & motioning was go outside and, holding down the “buzzer” on the EL was better get your act together! They have occasionally exhibited inappropriate behavior (house accidents) but they have (a) been left alone too long, (b) we are traveling or, (c) they have been ignored what they consider too long. When that occurs, they get the buzzer and no outside treat. When one of them, (Daisy) I believe, actually urinated on my bed one day (she was mad), they were put back into their training cage for the day. I do try to remember their age (old) and that they exhibit very human behavior and characteristics.
2. I still couldn’t talk when got a dog, 3 months after my surgery. He was a 6 month old pup and house broken. I live in a apartment. I tried the clicker but I did better clapping my hands or slapping my leg. I was depressed but am much better and have some one to take care of that gives me reason to live.
3. I had my dog 5 years after surgery. I trained her. She reacts on hand as well “vocal” signals. She just learned to look at me all the time. She follows me as a white shadow anyway so that was easy for her. She knows when she is bad even if i don’t make a sound. Dogs react on faces and body language.
4. (Background) In 1965 I was trained by the Air Force as a dog handler for which I took my German Shepherd named Smokey to Viet Nam. We were trained to go by voice and also hand signals. Those days are long gone but I used those skills to train my German Shepherd/Kishhound mixed. After my surgery and I came home, I approached Sandy with my Cooper-Rand and spoke to her for the first time. She almost ate my butt up for two weeks and had nothing to do with me until she figured out that I was not the enemy. Gary
5. If you are going to have as your first after lary voice any type of artificial larynx, it might help if you had the instrument before surgery to have your pets get used to the sound. You might be able to borrow one in advance. If you try this, I would suggest that you keep the sound associated with you because that will be the way it is going to be later.
6. Since my surgery in the summer of 04 I have had to come up with ways to communicate with my bird dogs, Bear in mind that they are sometimes 200 yards away when we are in the field. I use the baby nipple whistle, bought an electric megaphone and have taught them to be responsive to arm signals.
7. Whistles can be made that fit the stoma area and these can be used to get your pet’s attention.
This police whistle has been modified by the attachment of a nipple from a baby’s bottle which has been cut off at the small end and placed over the mouth part of the whistle. The larger part of the nipple can then be placed over the stoma and blown for a loud, piercing signal, without concern about a dead battery or other power source.
8. I was fortunate enough to think about training my dog to a clicker before surgery. But the louder clickers are hard to find now and my dogs seem to have developed a slight hearing problem. I bought the bell they put on hunting dogs and use that to get their attention.
After reading about the baby bottle nipple and whistle, I came up with another idea. Though I personally never had a lot of luck with “silent” dog whistles, the same trick with the baby bottle nipple will work. You can use the nipple and do not need to cut off the tip, just force the whistle through the existing opening.
9. You can make whistles for pennies from plastic whistles and baby nipple.
10. DOG WHISTLES
To all you dog owners out there. I’ve been through all of the recommendations, and a lot of help from this site, trying to find a whistle that I could use for my bird dogs. I’ve tried the baby bottle nipples, Pat gave me one that had a cup on the end of it and tried Jeanette Eastham’s recommendation of the silent whistle but nothing really worked well for me until now. I, with the help of a supplier, found a site that sells electronic whistles and the one I got sounds almost exactly like the referees whistle I formerly used. Several are available at: Amazon.com
Good health and good hunting.
Ed Chapman class of 2006
This message was written to the list in answer to a question about a particular dog’s behavior. Our member and fellow laryngectomee, Diane Gaskins, has volunteered to answer individual questions from our members who are dog, cat, even fish owners 🙂
I have been raising and training Pembroke Welsh Corgis for over 40 years. So, I have a little experience. The dog you have is aware of your ‘voice’, no matter what it sounds like. He has undergone a loss, as you have with the death of your husband, and my condolences to both of you. please feel free to contact me off list if you would like.
Could you please tell me the breed of dog and the age and sex and whether the dog is on any meds.
First – Get a crate! Keep the dog in the crate when ever he is unattended,at night or when you are away. It is not mean. A crate is their den! Of course, leave him out of it during the day. Treat your dog as though he were a puppy for a short while.
Second – When you are going to feed your dog, have something that you are going to eat as well and YOU eat it first!!! Let the dog see you do this. This is a means of you being the ‘boss’. Also, when you come home from being out for awhile, IGNORE YOUR DOG. (He is in the crate). You are the boss (again) and he must wait for you to tell him when it is OK to say hello.
Heaven only knows, my dogs are as spoiled as the next persons with the love and attention I give them.
When I had my laryngectomy 10 years ago, I was devastated that I could no longer communicate with my animals. WRONG!!! I now have 7 Corgis and when they are loose the in yard (fenced) and I open the door and -‘click’ – they come charging! My method is the ‘clicker’ method of training (go to a library and look for books), but instead of a real clicker, I use my voice to make a series of sounds that the dogs learn very quickly to understand.
A ‘cluck” means no! A “cklick” means good. And a series of tsk, tsk’s means that was very good! I use other forms of noise as well – clapping my hands, knocking on something, your imagination will help. If you work with ANY animal, patiently, they will learn the method of ‘speaking’ that you are using. Before you try it, however, I would recommend that you get a book on clicker training from the library. Since it is a new means of communication for you and the dog, best look into it before barging ahead.
Thlot Pembroke Welsh Corgis
Volunteering to work with Pets
A good place to volunteer your services might be your local pet rescue homes. A way to help those you love. Here is a great article from our former President, telling how he got into this kind of care:
CLUB MED FOR CATS
There’s an old saying that when you call a dog it comes running. When you call a cat it takes a message and gets back to you later. We cat lovers know that this is true. I have always had a warm spot for animals but cats of any shape or color were my first choice. When I was barely six and out on a Halloween night some nice folks asked me If I liked cats. What could I say? They deposited two small white kittens in my pillow case (that’s what we used in the old days) and I marched merrily home with my two new friends to “surprise” my mother. Fortunately, my Mom was also a feline lover so Snow White and Sabrina became beloved members of our family and we had these lovely girls or their offspring for many years.
When I retired a few years ago I was looking for something to do to keep my idle hands busy. Of course, I did have a laryngectomy, WebWhispers, the IAL and my local club among other related things. I was walking through the local mall and came upon a display table with cats and kittens. There was a big sign that said Richmond Homeless Cats. I talked to some ladies who were volunteers at this shelter and I was immediately hooked. I couldn’t wait to get down to this cat paradise which was providing a safe haven and home to at that time more than 500 beautiful cats. I learned that everyone involved in the Shelter was a volunteer. And that there were more than 90 individuals involved in playing with (very important!) and caring for the cats which includes feeding ,watering, medicating the ill and an incredible amount of “scooping”. There are many trips to the veterinarian and the cat food store. There was also a segregated section for those with feline AIDS. The shelter has a strict “no-kill” policy and we have blind, deaf, three legged and insulin dependent diabetic cats to mention some of the afflicted. We also have kittens which always seem to be adopted first. We adopted a three year old named Rusty. I truly believe the older cats know that some day they will get a home. When some one comes in with a cat carrier they hang around the door and try to look “cute”.
One advantage to being a laryngectomee in a cat shelter is that when you “scoop” you can’t smell a thing!
If you like cats and kittens check out a shelter.
Take care and stay well.
Miscellaneous Tips and Hints
Dealspotr has developed a guide 100+ Resources, Tips, and Discounts on Mobility and Accessibility Products for Seniors and the Disabled. It is wide variety items and where to find them. It is a good collection of resources that are worth checking out.
If you have pneumonia multiple times, I would suggest asking your doctor to have a modified barium swallow study done. If you have a TEP, it is possible that you have aspiration pneumonia.
I recently got a pneumonia vaccine. It is the first time I ever had a reaction to a vaccination. My arm hurt for two days. I was so surprised that I had this reaction because I’ve never had this reaction before. In a couple of days, I was back to normal. So, I would suggest being aware of the fact that your arm may hurt. Other than that no reactions.
I think it’s important to get vaccinated for many reasons. One, of course, is protecting yourself. Another reason would be because there are illnesses going around that shouldn’t be if people got their vaccinations. In NJ we’ve had measles and whooping cough going around. If you are a grandparent, you may want to check on getting the pertussis (whooping cough) vaccine.
Being a laryngectomee, we are susceptible to breathing in more germs. That’s why it’s so important to cover your stoma. If possible use the HME. If for some reason you can’t use or get the HME, there are foam covers you can use. These can be covered with a turtle neck, dickie, scarf or bandana which will give you another layer of protection.
Remember to get your flu shot. Apparently, there are areas where it is going around. When I was picking up a prescription from the pharmacy before Xmas, there were people picking up Tamaflu, the medication that shortens the duration of the flu. Just think of all the germs on the pen that is used to sign at the pharmacy….
There are precautions we can take to try to avoid getting whatever is going around. I’ve gotten into the habit of washing my hands as soon as I get home. You can carry one of the sanitizers with you or in your car to use when washing your hands is not possible. At home or if you’re traveling, you can wipe things down with alcohol. Those little alcohol wipes work great.
Think of using them on the phone, doorknobs, remote controls, etc. Wipe down things that get touched often by others. A few years ago when there was a terrible virus going around, I used these steps. It helped, I didn’t get that virus.
Rita in NJ
Treated in NJ/NYC
Life as a larynx cancer survivor and laryngectomee has both its good and its bad moments. Like all things, there is a humorous side – a lighter side, that lends perspective and balance to life in general.
Below are numerous real-life anecdotes, many submitted by members of this support group, that we felt we should share with you and with each other. Some are hilarious, some thigh-slapping funny, some just cute – but all demonstrate there is justifiable humor to be found in all things … humor and laughter that makes any life worth living.
A long time contributor that has helped WebWhispers keep going and helped it to be what it is today, has taken on a new task. Michael Csapo taught his dog Gypsy to howl. Gypsy actually won a first place prize at the recent annual Pioneer Days Pet Parade and Festival our town. After relaying this to a few folks in their circle, they expressed an interest in seeing what he did so he made a video and posted it on YouTube.
These are presented in reverse numerical order.
144.I am a computer programmer and created a “type to talk” program with buttons for pre-saved phrases. I put my phone near my computer speaker and use “speaker phone” mode so I can hear. I answer an incoming call with a prerecorded phrase that provides my name and lets the caller know I am using a computer and that they will have to wait for me to type a reply to anything they say.
One person who called me had what I considered an amazingly confused and funny reaction. Instead of just speaking to me, she said “Tell Tom …”, This continued for the whole conversation, her every sentence started with “Tell Tom ….”. Not exactly sure what she envisioned was happening on my end but it seems to be her visualization of the computer turning to me with what she said and then speaking my reply as though I could neither hear nor speak!
I never tried to set her straight, seemed like too much typing and I was rather enjoying her confusion.
Tom – June 2011
143.ON A HUMOROUS NOTE–unbelievable–I accidentally left my electrolarynx in my pocket and it went thru a whole cycle in my front loader. I carefully took it apart as much as I could and poured the water out, dried it gently with the hair dryer, then let it sit in the sun most of the day. Put the same dried out rechargeable battery, that also went thru the wash, back in and it works just fine! The sound is crisper and cleaner after the washing. Ha ha! When I took it apart, I saw a lot of electronic wires and really delicate looking stuff inside. If it needs cleaning in the future, I think I will just use a soft cloth and warm water.
142.A funny, or not so funny, incident happened last night in a restaurant
(Old Marco Pub and Restaurant, Marco Island, FL). This restaurant has only beer and wine, no hard liquor. After the waiter took our drink order, a beer for me and diet coke for Arthur, our laryngectomy, Arthur got up and stepped into the parking lot to put his hat in the car. Almost simultaneously with Art’s return to the table, a man (we think he was Tom, the owner, rushed out from the back of the restaurant and yells at Art, “You can’t bring your own alcohol in here”. I responded immediately, “We have no Liquor” while Art tried to get the Servox to his mouth. At that moment, the man grabbed the Servox and started a tug of war to get it off of Art, yelling, “That thing of liquor is what I mean.” Arthur held onto his Servox and got out the words, “This is how I speak, it is not a booze container. Let it go.” I was yelling the same thing and the scene was at a level that dozens of people around us were watching, some even loudly commenting on what this lunatic was doing.
Suddenly with all this happening, “Tom” let go of the Servox and ran out of the room just as he had come in. It was over except for the people at the tables looking and commenting how embarrassing this must be to that poor man, which of course made it worse. We left the restaurant.
Upon getting to our condo, I called and asked to speak to the manager and was told he wasn’t available. When I described the man at the table I was told he is the manager/owner. The story didn’t have a happy ending. We did not get dinner and no powers that be will step forward to spank this idiot for his reckless horrible behavior. The best we can do is tell all who are reading this not to go there to eat….. and don’t wear your Servox if you do or you, too, might be physically attacked for having liquor hanging around your neck!
Linda and Arthur Jacobs (lary since 2002)
141. Another question from a non lary with answer from a lary:
Q—Well, can’t you plug that hole so you can go swimming?
A—Yeah, I can plug the hole, but I’d be a floater, not a swimmer!
140. Questions from non larys with answers from larys:
Q—(looking at my new air-hole) Will it heal over soon?
A—I rather hope not as I breathe through it.
Q—When will you be able to speak normally?
A—Never, again, as my voice box is gone.
Q—What if you hadn’t had it done?
A—I would most likely be dead.
Q—Will you die after this?
A—Probably, certainly not before.
Q—What if you get water in it?
A—I cough like hell or I drown. In which case, hang me up by my feet until the water drains out.
Q—How long before you can breathe through your nose?
Q—I could not do all that.
A—It’s either do it or push up daises, your choice.
Q—Will it get better?
A—This is better, it’s as good as it gets.
and believe it or not
Q—Has it affected you in other ways, ie, up top or down below?
A—1 My brain cell may be lonely but it is still functioning just fine
—2 While the days of night and morning are long gone the answer is yes . . . .fine thank you, it was only my throat that was operated on.
And finally – on the way into the operating theater a nurse told me that I could only have the normal hospital gown on and would have to remove my underwear.
I looked at her and asked, “Which end are you starting from?”
Well at least it got a laugh…
139. For the past 8 years or more, I have been going down to “Gasoline Alley”, as I call it after the famous comic strip. It is an auto repair shop my neighbor/friend runs, where the guys at the garage never treated me any differently, after my laryngectomy. I use a Servox to talk and keep up with the best of them.
Last week, we were all talking, laughing and poking fun at each other, nothing mean spirited, just clean joking around but there is a guy that has a quick temper, hits first, and asks questions later. I have not lost my sense of humor and made a remark that had the guys laughing, all but the quick tempered gent. He got right in my face and was ready to swing but I looked back at him, pointing to my Servox, and said, “It’s these batteries that are talking. Not me!” He was so shocked his eyes grew large; then, shaking his head, he smiled. Humor will save the day!
138. I was cashing a few checks, had them all signed with my bank number on them, when the young girl teller asked if I wanted cash. I nodded yes. She then asked if I had an account at this bank. I nodded yes, and she asked me if I lived in this town. I nodded yes, and she then asked if the cat got my tongue? I started to laugh; when I finally was able, I replied. “No, cancer got my voice box.” This poor girl wanted to crawl into a ball and die. She was so sorry but I couldn’t stop laughing.
137. Here is a situation which brought me closer to esophageal speech. I was hitchhiking through Tennessee back in the middle 90’s. Outside Chattanooga, a trucker stopped to pick me up and asked where I was headed. At the time my Servox batteries had gone dead and I was resigned to writing notes on my journey northward. So I wrote “Illinois”. And he said, “Just great! I stop to pick up someone to keep me awake, and you can’t even talk!” So about every 5 minutes I’d clap my hands. It worked until we got to Nashville, where I got out and found some electricity for the night. The rest of the trip was much better.
Bill Larson, Class of 1987
136. A fellow Lary was an avid boater as I was. He stopped using his boat for some time and then he said “That’s enough” and started using it again for fishing, which he loved to do. He took a fellow Lary out fishing one day on his 22ft Wellcraft and went to the ramp to float his boat in. The ramp master saw them both and said to them that they could not go out in the boat with those holes in their necks. “IT’S NOT SAFE FOR YOU TWO! You may drown.”
My friend told him, “We can not leave them in the car so will have to take the holes with us.
135. I accidentally pushed my TE Prosthesis into my esophagus where it was promptly swallowed. I was told by my ENT, “not to worry”, that it would pass in time. I was so concerned with what might happen prior to it passing that “I was afraid to pass gas for fear of not knowing what It would say!”
I have been told before that I have talked out of my bottom but THIS was a real possibility!
Life is great, take the slow train to enjoy the view. :-0
134. About a month ago, my wife, who sleeps sitting up, lost her stud earring while sleeping. So, she went in a few days ago for her routine chest xray and the doctor was amazed to find her stud earring in her lung. Luckily, the doctor got it out at the hospital with little problem. It had fallen down her stoma during that night. She does wear a stoma cover but somehow the earring had found it’s way under it. My advice is, “Do not wear your stud earrings to bed!”.
Bea & Popo Richardson
133. I belong to a veterans group of ex-submariners. We have a large monument at the Las Vegas local veterans cemetery that commemorates a submarine and it’s crew that was lost in WWII. When one of our members passes they go on what we submariners refer to as “Eternal Patrol”. Our group decided that we wanted to have stone pavers implanted in the ground in front of the monument that would list these men & we attempted to get volunteers to arrange for this to be done. Those of you that are veterans know what it is like to ask for volunteers – like pulling teeth – so I and another man, a WWII veteran, volunteered. When the engraved pavers were placed, we both were there. A couple came by and commented to us that it was a terrrific idea and “Don’t you men think they are beautiful”? I replied with my EL and the other volunteer said, “Thank you. I wondered what they looked like.” He is legally blind. It figures that the only two volunteers were a man who can’t speak normally & a blind man. Go figure.
131. & 132. Two hospital stories:
I was waking up and this wonderful nurse told me to cough as hard as I could as she gave me a tissue. I covered my mouth and coughed. Guess my look of horror when I saw another nurse move very quickly and something flying across the room. My nurse then said, patiently, that I would have to learn to cover my stoma, not my mouth.
Later, during my stay at a local hospital, I had a nurse checking my neck as I had a skin graft. She wanted to know if I had done this to myself or if someone had cut my neck. I told her someone else did and she asked who would do this to another person? I said a surgeon to remove cancer. She and I are now friends, her name is Mary. (Callie)
130. I was leaving Costco (a big box store) on Friday. As I passed through the doors, an older lady asked me for the time. Not being able to speak (I’m a TEP user and both hands were full of packages) I shot the cuff of my jacket exposing my watch, and held it toward her face. She said. “I’m sorry, but I’m legally blind”. After I finished my laughing fit, I put my stuff down and gave her the time. Throw in three clowns and a small dog and you would have had a scene from a Fellini movie.
129. My daughter was only 4 years old when I had my laryngectomy. When I started to do anti-tobacco work speaking to school children 6 months later, I dragged her with me all over the state. She never complained. She knows the key points of my speech so well after 6 1/2 years that she could probably give it for me. She’s now 11 and all attitude. Recently I was invited to go to a very small school in a little bitty town. My daughter loved it and wanted to go play, but I made her stay with me and sit at the side of the stage. To say she was put out would be an understatement. She sat there with arms crossed and a “if looks coud kill” glare at me. So as I got the the part of my story about “… thinking that the surgery was all I needed to cure me, they sent me to the radiologist and I found out I had a long way to go.” As I told the kids “…the radiologist shook his head and said this is bad.” and I asked “What’s bad?” and he goes on to tell me that with the advanced stage of my cancer that I had maybe 5 years to live at the most. Well before I could go on to tell the children that I was almost 7 years post-op, my daughter pops up and says to the whole auditorium, as loud as possible, “Yeah, and she’s past her expiration date!” At first there was a shocked silence, then everyone turned to look at me and burst out laughing when they saw me sit down on the floor of the stage crying from laughing so hard.
128. I went home one night and was listening to the voice mail and came across a message I couldn’t understand and knew it was someone that was a lary. I listened a couple of times and only could make out one word, “Jack”, which is my husband’s name. He came in and I said listen to this message, I can’t understand it. He calmly said, “That is the message you left for me today.” OOPS!!
127. My wife and I went to the movies last night with another couple who are close friends. I turned down the volume on my artificial larynx so as not to disturb others seated close by. During the movie, I occasionally leaned over and, with my AL held to my neck, would converse briefly with my wife. After the exceptionally emotional and touching movie had ended, a middle aged lady sitting one row above and behind us tapped my shoulder and proceeded to inform me that every time my head turned I had “farted” and she did not appreciate it. I and my wife were so startled that we did not realize my low toned AL was the culprit. I guess that lady has undoubtedly shared her “worst movie experience yet” with her friends. William R. Rector
126. Webmaster’s sample: How NOT to write a message to the Group: “Webbys i really agree with the previous massage my experience in this area is extensive and I really now what i am taking about believe me i am not stupid my degree was in this field so please follo the hints that Marcie gave everyone they are very tru and 11o percent for sure they have worked for me in the passed and kan wurk az weel four you too these are probably the most accurate suggestions that have been made on this sight to date Ferd” So – You might want to proof read & spell check your Emails!
125. This one may have topped all of my past personal “lary laffer” experiences. Sally and I were driving home from the IAL convention in Anaheim. After spending a delightful day in Aspen, CO., we continued on to our destination in Denver. We took the scenic route — is there any other kind in that part of our lovely country? When we arrived to the top of Independence Pass (elevation 12,000+ feet above sea level) we got out of our car to stretch and take in the sights. We walked a few hundred yards to a spot that overlooked beautiful snow capped mountains and lush valleys. It was mostly uphill to this spot, and we both got a bit winded. There were about seven other people gathered there. One man had a pair of binoculars and noticed some Elk milling around and lying down on the side of one of the mountains. He passed his binoculars around so that we could all see the them.
A lady said hello to Sally and me as we walked past her. Because it was so gorgeous up there, I said to Sally “why don’t you ask that lady to take a picture of us.” Sally did and we all went down to a point where the backdrop was fantastic for a picture. We posed and the lady snapped a couple of pictures of us.
What occurred next seemed to happen in slow motion, if you can picture it that way. We all started to walk toward one another and as we neared each other, I held out my hand to receive the camera. The lady very slowly and carefully laid the camera in the palm of my upturned right hand. As she did this, I placed my Servox to my neck with my left hand and said “thank you.” Startled, she said “Oh, it talks too!” I quickly told her it was me that said “thank you — not the camera!” Sally and I burst into laughter. She was embarrassed and kept apologizing. We kept telling her it was not a problem at all, but it was hard to keep from laughing. We felt sorry for her as we thanked her again. She and her daughter started walking back toward the parking lot. Some of the others saw what happened and were also amused.
Sally said that this nice lady will probably relate this event to her friends and tell them how badly she felt, while on the other hand, we will tell our friends and share it with WW and get enjoyment from it.
124. I received a phone call the other night and naturally (or un-naturally, depending on the ear of the beholder!), I answered in my best lary (Servox) voice! The caller, one of those intrusive solicitors, asked to speak to the woman of the house. I told the caller there was no woman of this house . . . (Sally, my wife was listening over the speaker phone). The solicitor then asked to speak to the person who is head of the household. I told the caller there are no ‘human beings’ living here — only us ‘Robots’. The caller thanked me very politely and said to have a wonderful evening!
123. Upon awakening in the ICU after the handiwork of my surgeon’s skills in the removal of whatever so that I had now joined the ranks of us “Larys”: From my bed I got the first glimpse of the “hole” (in a nearby mirror) which I now address as “Mr.Stoma.” I’ve been blessed with the gift of a quick wit, so I pulled this one out of my brain … or what’s left of it. As a nurse passed by I motioned her with the curved index finger wiggled in and out, which may be the universal sign language for “C’mere,” to which she responded – as I added the other sign language motion by circling my right hand while pretending to hold a pencil. It worked … she brought me paper and pen. This is what she read, “Miss, I think the surgeon goofed, it appears to me he transplanted my anal cavity to my throat.” And another incident of note. I was visiting a friend in the hospital. Her attending nurse looked somewhat puzzled as I placed my thumb over on my stoma filter to speak. I thought I would diminish her anxiety somewhat by showing her my bracelet indicating “Neck Breather.” With a warm knowing smile she said, “Where is it? Can I get it for you”?
122. Ellen’s thermos story reminded me of a funny incident that happened shortly after I began using my Servox. I have a colon replacement of my esophagus so I have forgone a TEP (or in my case a TCP) for the time being. Anyway my wife and I were invited to a bring a friend to party that was designed to provide a opportunity to bring a single friend, so they could meet other single friends (The wisdom of such a party can be discussed later). We were supposed to wear name tags to identify whether we were married or single. Of course with my Servox swinging away on my neck my name tag came off. This party was in the evening, so it was starting to get dark. I was exiting the house to the back yard when a young lady came up to me, and said I love your handy flashlight. I grabbed the Servox, and for effect brought it up slowly and said “thank you”. The look on her face was precious. She probably thinks I have a talking flashlight. One other common joke I make about my Servox that my SLP loves is that I tell people that when I can afford it I will get a AL that speaks French (Or insert language of choice).
121. I went out, today, grocery shopping with my husband…the first time in a month. I do have a new TEP so I wore my Servox around my neck as a back up (I’m not yet completely weaned). Two little boys heard me talking with the Servox and started following me around and the mother didn’t seem to mind…I guess I made a good baby-sitter. Then I was checking out and the clerk saw my Servox and smiled and asked if it was a mini Thermos. I said, with my TEP voice, “Yes, and the top button is for hot and the bottom for cold.” What a day! Enjoy yours!
120. I have always had a good sense of humor and didn’t lose it when I had my total laryngectomy in March of 2003. I had a partial laryngectomy in November of 2002 and had become good friends with the nursing staff at UAB. When they took me to the room following my total laryngectomy one of the nurses, my nurse from the previous operation, asked me how I felt. I motioned for a pen and paper and wrote her a note. It said ” I’m speechless”.
119. I had a funny thing to happen yesterday afternoon. I have a new (factory rebuilt) GPS in my plane and I was out practicing with it yesterday afternoon. I was shooting some landings, which involves one hand on the yoke, the other alternating from the throttle to the trim to the flaps. The hand on yoke activates the “push to talk” button on the yoke for talking on the radio. My airport is non-towered airport, meaning everyone is to be alert, and watch out for everyone else. It is also a fairly busy airport, we have a number of students, a sky diving operation, an occasional hot air balloon, and sometimes a glider or two. We also have several who just like to fly and are up and around. All in all, a typical general aviation airport. Anyhow, back to yesterday, I had just turned from downwind to base, had a small cough, and felt something lightly drop into my lap. My hands-free device had popped out!! It did not stop in my lap, but went on to the floor. I completed the landing with an extra task for my right thumb – occluding to talk. I am glad to know I can do it without the hands-free, if I have to. I hope it is one of those things that doesn’t ever happen again. I am really glad it happened in Cullman, instead of while I was shooting a landing in to a really busy place like Chicago or Atlanta. I can just imaging what an Air Traffic Controller would say if I told him to stand-by while I fixed my “artificial vocal cords”.
118. I thought that Speeding Tickets were a thing of the past after my surgery in Nov.2002, until two weeks ago while traveling on Hwy 77 in South Texas, a Policeman pulled me over for speeding. I got my best “Poor me, I can’t speak very well, I’m a Cancer Survivor” look on my face, and when he said “Could I please see your Drivers License”, I heard that voice and really wanted to cry. Yep, he was a Lary too. I am now $162.00 lighter
Jim Stringer in Houston
117. I was sitting on my sofa, with my Servox on the coffee table, having my coffee this a.m. when suddenly I heard a dull, heavy static-like noise. The sudden sound, in what had been total silence, startled my dog… he barked, which sent my cat flying for cover….afraid of the unknown. It made the noise again and I realized that it was the Servox!!!!! The second time, it made sort of a groan, like the battery was dying. Has this happened to anyone else? Do I own the only hands-free Servox?
(Ellen learned from the list that moisture can cause this rare problem)
116. After arguing (using an AL) on the phone yesterday with one of those prolific telemarketers, I finally hung up the phone somewhat still angry because I could not get my point across to them. I told Lisa (My better half) that arguing with those people is just a waste of breath. She quickly corrected me by stating: “You mean arguing with them is a waste of batteries, don’t you?”
115. When I first got my Servox the speech therapist at the hospital helped me with it. They used a oral adapter so I could talk because I was so swollen. After about a week, they had me try to hold the Servox under my chin, but it would not work. When I came home I would keep trying but nothing would happen. Well, a guy from the laryngectomee club came out to our house and gave me some things. We talked and he asked if I had a electronic larynx. I told him I did and tried to talk to him with the oral adapter. He asked if I could talk without it. I said I tried but it doesn’t work and showed him. He laughed, and said you need to pull the cap off of the top. I did and it worked.
114. The little boy who lives next door (two years old) was imitating me at dinner time. His parents said he put a square piece of cheese against his neck with his thumb and said he was talking just like Bruce. Quite observant I thought. And very very funny.
113. Once a week I am on call for emergency service at my apartment complex. When I first started back doing this, my telephone abilities were lacking and my wife would help by talking to the tenants as a courtesy. One time, I kept trying to respond to a tenant and when I spoke, he hung up. So my wife called him and he gave her a hard time about being told the repair was not an emergency. I took the phone and he would not respond to me. Then my wife took it back and he argued with her. Then I tried again and so on and so forth. My wife asked him why he wouldn’t talk to me and he exclaimed, “You are making me talk to a computer and I’m going to call the office.
The next day I went up to the apartment to do the repair and no one was home. So I left a note that the work was done by “The Computer”. A week later I got sent to the same place for a different problem. This time they were home and asked through the door who it was. I simply replied, “The computer is here from maintenance”. I really loved their expression that day.
112. My wife and I recently traveled from Detroit to Knoxville. Because I have a pacemaker, I have to be searched as I would otherwise set off the metal detector. Using my TEP prosthesis, I advised security that I had a pacemaker and needed an individual screening. The security officer searched me and talked to me while doing so. I responded to him by placing my thumb on top of the foam pad that was covering my stoma. He seemed puzzled as to what I was doing.
He then asked “what are you hiding under your thumb?” So, I lifted the foam cover to let him see my stoma and enjoyed the shocked look on his face, I then explained to him that I was a lary and this is how we can talk. I’m sure he and his buddies had an interesting discussion about me during their coffee break.
111. Below are some of the more hilarious questions asked of laryngectomees when folks hear our new “voices” or see our “stoma.” These have been contributed by numerous members:
- When are the doctors going to close the hole up?
- What do you put in there when you swim?
- Is that where you put your food now when you eat?
- Is that where you talk out of now?
- Can you still pick your nose?
- Are you a robot?
- Will your voice box grow back?
- If you don’t use your nose any more, what are you going to do with it?
- Oh, I’m sorry I made you talk!
- Don’t despair – Jesus loves you.
- I can hear and understand you perfectly. And you are apparently not dead, so you must be breathing. You speak and you breathe, I don’t see where the disability is. I am afraid that I am going to now have to require four physician statements and a statement from a rehabilitation counselor before I can even begin to consider your request for reassignment of duties.
- Maybe you should learn sign language?
- Is that where you drink your beer now?
- Mom, Mom, with that hole in your neck, do you think you should eat broccoli?
- I became almost hysterical when my neighbor wanted me to go swimming with her and thought I could just put a cork in there to plug the hole while I swam! She said “Just breathe through your nose!”
- My God, what happened to YOU? Did you get shot in the neck in a drive-by shooting or something?
- Oh .. OK, I understand. I guess that means you can’t EAT anything either, right?”
- Well, I’m sorry I stared … I just had never seen anyone talk through their thumb before … is that where your microphone is located?
- Does your neck get sore if you talk too much?
- I still think the funniest question we have all gotten is : You are in your room immediately after the surgery…you need help…you push the button for the nurse…then you hear “Can I help you?” over the loudspeaker. So you keep pushing the call button….and you keep hearing “Can I help You?”
- When my daughter was in first grade, one of her friends asked me if they cut my head off and then sewed it back on.
- I’ve had at least two men say to me “I bet your husband’s glad” meaning he doesn’t have to listen to me talk.
110. I am a recent lary in my early sixties. One day, shortly after my surgery, my wife and I were in a restaurant speaking to one of her friends. An attractive young woman kept looking at me using my Servox and finally got up the nerve and approached me. She apologized for intruding and told me that she had heard about this method of speech but had never actually seen anyone use an electro-larynx. I explained to her why I was using it and let her try speaking with it. She thanked me and left. I looked at my wife and her friend and said, “This is an interesting way to pick up girls”. Everyone laughed.
109. I heard this story at a Laryngectomee Support Group Meeting in Spartanburg, SC. Robert, a laryngectomee in his late 70’s, told me he had been discussing the fact that he sometimes had difficulty changing his prosthesis with a fellow laryngectomee. She suggested some KY Jelly might make insertion easier and more comfortable. Robert was later searching around the pharmacy department of his local Walmart, when a young woman approached him and asked him if he needed help finding something. Robert replied “Yes, I need some of that stuff that makes things go in and out easier, but is not poisonous if you get it in your throat.” A few seconds later, she returned and handed Robert a tube of KY Jelly and in true Southern Style, patted him on the back and said, “Bless your little heart.” Robert couldn’t understand why she was “blessing his little heart” until after he read the back of the tube. He was very proud that she thought he was “still active” and made a point of letting everyone see what he had on his way to the check-out counter.
108. One night Gene came home from work and announced he had coughed out this prosthesis that morning. He didn’t have anything with him to keep the puncture open, and was worried that it had started to close. I am the one who puts his prosthesis in, so I tried and tried, but it just wouldn’t go. We finally called his OTO doc, Dr. D, who was on call and at his lake place about six miles from where we live. Since meeting at his office would mean a 25 mile drive for all of us, Dr. D asked where he could meet us and I answered, “Casey’s”, a local convenience store, complete with gas pumps ……. Dr. D said he would meet us there in ten minutes. True to his word, Dr. D met us out in front of Casey’s wearing his shorts, shirt and sandals. He worked on getting Gene’s prosthesis in while he stood next to the car and Gene sat reclined in the driver’s seat. Dr. D had a heck of a time getting it in, and you could see that people wondered just what the two of them were doing. We have laughed with Dr. D many times about his “house call”!
Julie and Gene Helle, email@example.com
107. Eleven days after my surgery all medications stopped except for an antibiotic given intravenously. The IV needle in my wrist started to leak, so the nurse changed it, on the tape she wrote the date 11/23. Two days later when the night nurse came to take a blood sample for my sugar level, I asked her (for intended purposes “ask” is writing a note), “What is this date?” She looked at it and said, “Oh that’s 11/23”. I said. “I know that it’s 11/23 but what does it represent?” “Oh”, she said, “that’s the date the IV comes out.” “Really”, I said, “well today is 11/26.” “I know.” she said and walked out of the room.
Dominick T. Farruggio
106. We were entertaining out of town guests when I received a phone call the other day and was greeted with that long pause that I often hear (or don’t hear)! I said hello a second time to reassure the caller that they weren’t hearing an answering machine. Then I spoke again and here’s how the conversation went from there:
Me – “Well, you called me”
Caller – “Is there a human being there, I could speak to?”
Me – “Yes, there are several human beings here. What is the name of the one you’d like to speak to?”
Caller – “Herb Simon”
Me – “This is Herb Simon speaking and I AM a human being. What can I do for you?”
Needless to say, we all had a big laugh when I got off the phone!!!
105. So there I am, lying on the gurney, waiting for my procedure. And for the umpteenth time I reminded them I am a laryngectomee. It made them nervous enough that they sent for someone from respiratory.
“Respiratory” is bustling around mumbling to herself and I hear her say, “The trach collar will take care of directing the oxygen down his “trach” and then I’ll have to rig up something else to get the oxygen up his nose.” She says to me, “For some reason your doctor wants oxygen directed down your trach in addition to your nose, but I’ll figure it out in a minute.”
I tried to tell her to forget the nose but her voice is drowning out my Servox. Finally, I just point the Servox at her and push the button without stopping. One of the other nurses says, “I think he’s trying to tell you something.”
In the blessed silence that followed I said, “I AM A NECK BREATHER. MY NOSE IS NOTHING BUT AN ORNAMENT. I NEED ALL THE OXYGEN IN MY STOMA”
It worked. Which proves once again, the first thing you have to do is get their attention.
104. At a laryngectomee support group, a member raised his hand.
“Yes?” asked the chair.
“Are we still on Old Business?”
“Yes,” replied the chair.
“Well. I would like to report that I am still growing old
103. On a recent visit to a local state park for a cookout and some bass fishing, we had a particular “spot” all planned for our day at the park but, much to our dismay, the parking area near our spot was full and blocked off by the rangers. Not looking forward to lugging a cooler, bags of food, and fishing gear any further than we had to on a hot day, I decided to ask one of the rangers at the barricade if I could unload here and then park in the other lot. So I rolled down the window and in my best Servox voice I asked. He immediately ran to the other ranger, removed the barricade and said, “Let him in, he can’t talk!”
Now I know how to get the premium parking spots. We laughed all the way to the lake.
102. Having just become confident enough to use my Servox in public, I was in the waiting room for radiation yesterday when three new patients appeared. Feeling a little cocky with my newfound voice, I introduced myself to each, “Hi, I’m Roger” , etc. I was so proud of my new talker. When I left to get my treatment, two of them stood up and said, “Nice to meet you, Ralph.” Oh, well!?!
101. When I had my first biopsy, back when I still had my natural voice, I wasn’t supposed to speak for a day or so. I ran into a builder/investor that I used to market and sell homes for. He was obviously glad to see me. When I wrote him a note to say that I was glad to see him, and that I was writing because I’d had a biopsy that morning, he immediately took the pen and legal pad from my hand and wrote me a note. I took it back and with a large smile on my face wrote a message back to him asking if he’d also had a biopsy that morning, and if not, I went on to explain that a biopsy wasn’t contagious and he could go ahead and talk normally, but I would still be writing down my answers. We both laughed and he spoke normally after that!
100. From the June issue of the IAL News, 1956:
“The Detroit Cancer Center, which is the headquarters of the IAL and of the speech school of the ACS Southeastern Michigan Division, also houses a very busy cancer detection clinic. Recently, the switchboard operator received a call from a woman who asked when a patient could come into the center. Since this is a fairly common inquiry for the detection clinic, she connected the call with the nurse in charge. The caller asked if she could bring the patient in that very afternoon, whereupon the nurse told her that would be out of the question, since certain preparations were necessary, such as taking a dose of castor oil the evening before and an enema on the day of the visit.
The caller seemed puzzled and asked the nurse to repeat this. “That’s funny,” she said after the second explanation, “my husband is a laryngectomee. I want to bring him to the speech school, but I never thought he’s have to take castor oil and an enema to learn how to speak again.” The nurse gasped, “I’m sorry,” and promptly transferred the call to the speech class.
99. Now, for a story that just took place a couple of hours ago. My friend and I went to Denny’s to have brunch. Next to our table was a young couple with a little boy about 5-6 years old. I noticed him watching me. Then he got up and went over to his dad and I knew they were talking about me. A couple of minutes later the little boy and his dad approached my table and the dad told me his son was very interested in the way I was talking and wanted to know if I would mind showing him how it was done. I showed the boy my Servox and then showed him how it worked. I even let him try and talk with it. While we were eating the boy kept looking at me and smiling real big. When they left the boy came over and thanked me for showing him and gave me a kiss goodbye. Folks, in my opinion, it don’t get much better than that. God Bless.
Amy Jo Kiger
98. I was trying to reach a Salesperson of a national Real Estate firm. I was speaking with an EL. When I asked to speak with a Broker a very rude voice told me that I was talking just like a machine. I replied that they were talking just like a human being and perhaps we were both wrong. The Broker never did return my call. I am now dealing with another firm.
97. (This may not be a Laffer, but it sure puts a smile on your face.) After all the wonderful people Jan and I have met since I was diagnosed, I have come to the conclusion at least one member of every household should have a laryngectomy and this world would be a better place to live.
96. Last month was the first anniversary of my laryngectomy. My surgeon admitted me into the hospital for an “in and out” procedure, he wanted to look deep into my lungs, go down my esophagus and possibly take some biopsies just to make sure the big C was not in evidence. I had the shot and was basically in “lala” land when they rolled me into the exam room. I had a sheet pulled up around my neck so the OR nurse did not see my stoma. She placed the oxygen mask over my nose and mouth and I immediately started to move it over my stoma. She yelled, “Don’t touch that, I have to give you oxygen.” I then occluded my stoma and told her I might as well roll over and she could put it on my butt since I would get just as much oxygen there. Needless to say the entire OR gang was really roaring!!!!!!!!
I had to have a re-puncture recently and as soon as they rolled me into the OR this little nurse said, “Mr. Gillette, roll over and pull up your gown and I will hook you up to your oxygen”. Same nurse and she had not forgotten. Then, she told the rest of the OR staff what had happened last year when they scoped my throat and lungs. A good laugh is like a warm ray of sunshine. There are moments as a lary that can be very entertaining!
95. This past winter, my hubby, Aaron, and I (he is the laryngectomee, by the way) were busy loading groceries in the early morning crisp cold and snow at our local grocery store here in C. Springs. As we were loading our SUV (yes, we do own one of those things), an old friend of mine (not yet acquainted with my hubby) popped up out of nowhere and started chatting with us. Well, not really with US … mostly with me. We chatted for 5-10 minutes, exchanged new phone numbers, and Aaron made perhaps two to three comments during the conversation (he uses the hands-free valve to speak and speaks WELL and uses an unobtrusive stoma cover).
As we parted, Aaron went to the driver’s side to get in, leaving me with my old friend on the passenger side. As he got into the car, my friend leaned over and whispered to me, “How does he DO that?” “Do what”, I asked. “Well”, she says, “did you not see it?” “See what?”, I replied. “Well”, she continued, “I may be crazy, but OUR breath made “puffies” from our mouths. His, though, did not … in fact, it looked like his “puffies” were coming out of his jacket!!”
I laughed and said calmly, “Aaron is a laryngectomee”. She replied, “I didn’t notice he was an amputee … what part of his body is he missing? And, how does that explain “puffies” coming out of his jacket?” I again laughed and said, “I’ll call you later and explain everything. It is too complicated to go into now.”
I did call her later and explained everything. She was SO
embarrassed. We now get together often as families as we are now
neighbors … but she still blushes at her “mistake”. I imagine that we
“laryngectomee families” do not SEE some things that our “normal”
friends do. Who would have thought!!
94. A new laryngectomee wrote in and asked what the “limitations” and “restrictions” were going to be as one of us. I wrote back :
Here are some “restrictions” on, or “disadvantages” of becoming a laryngectomee:
(1) you can no longer snore. It is now impossible. So if your bed partner (human or otherwise) is lulled to sleep and reassured by your snoring, they will just have to adjust to this new quiet you.
(2) you cannot choke on food any more. The “Heimlich Maneuver” is useless on us. So if a loved one has taken the course on that, it is wasted knowledge for you, as was learning mouth-to-mouth resuscitation. So you both will just need to learn mouth-to-stoma rescue breathing instead.
(3) if you run over a skunk with your car, the odds are that you will not be able to smell it.
(4) if you used to tell the seasons of the year by bouts of allergic reactions to pollen, leaf mold, etc., you will probably just have to get yourself a calendar since we are less likely to have these problems since we no longer breathe through our mouths and noses.
(5) if you count each year on bolstering your immune system by coming down with whatever respiratory illnesses or other airborne diseases are making the rounds, you will probably be disappointed because you are less likely to get them (same reason as #4).
(6) you may drive your significant other battty because you can kiss them without coming up for air (and they may get tickled by the feel of your breath on their neck while doing it and giggle…thereby destroying the mood).
(7) instead of having one way to speak, you may get confused by having two or more methods available.
(8) if you enjoy speaking quickly and without much thought, you may be bothered since many of us need to take a second to find our artificial larynges or occlude our stomas before we can say something. As a consequence, we may also find that we are spending more time listening to others rather than talking.
(9) if you are a man, you might have to give up wearing those tight neckties you love wearing around your neck since you will need access to your stoma.
(10) if you enjoy amusing others, chocolate milk or other beverage can no longer come out your nose when someone says something funny while you are drinking.
(11) you may find yourself a member of another organization and have a whole new set of friends.
93. As I was leaving the hospital where I volunteer, they were telling me how cold it was outside. It reminded me of one day last week when I was going to the store and it was equally as cold. As I got out of the car I noticed how the breath of the people looked coming out of their mouths and noses. I thought, oh dear, mine will not look like that. As I pulled the scarf a little tighter around my neck I thought they will probably think my clothes are on fire or something! Anyway I told them what I was thinking and they got a good laugh.
92. Even after explaining my situation to a nurse who wanted to look in my throat, when I opened my mouth, she asked me to stick out my tongue and say “aaaah”, so I promptly stuck my tongue out and depressed one of the buttons on my Servox. You should have seen the look of bewilderment I got!
91. Maybe a huge laugh. A couple of days ago, I was at theatre returning costumes from the last show and I interrupted a meeting about the area on the grounds of the Stetson U. and the float for the Mardi Gras celebration in our town (DeLand, Florida). The area on the grounds was for face painting and costume makeup. One of the women who belongs to the Kwere (I’m not a member, can’t afford it) said that they were going to buy Star Wars costumes (Darth Vader) with masks that has an attachment to alter the voice. Oops, everyone looked at me. And I said, “I don’t need a mask to change my voice. Since they all know me, we all laughed and laughed. Am I afraid to be with “normal” speaking people….Not ME.
90. I went to Walmart one time and was looking in the garden section for plants. A worker came up to me and asked if he could help me. I had my hands in my pockets and, since I speak with a TEP, did not have a Servox. As I was trying to get my hand out of my pocket to talk he yelled at me, ” CAN I HELP YOU?” I got my hand out of my pocket then and yelled back at him, “I CAN TALK. IT IS JUST HARD WITHOUT MY HANDS. I AM NOT HARD OF HEARING.” He had a stunned look on his face until I started to laugh, then he did also and said he was sorry. Told him not to worry but I wanted 10% off all I bought, and started to laugh again. I did get a lot of help that day and do every day I now go into Walmart. A little laughter goes a long way. (Annonymous)
89. About two and a half months after surgery, with no teeth in my mouth and taking radiation, I went into a store and was doing some shopping. The urge hit me and I found a clerk to ask where the bathroom was. I wrote this nice note asking her where it was. My neck was too sore to use my TruTone. She took my piece of paper and wrote me directions to the bathroom. I took the paper back and wrote her another note. In it, I thanked her for the directions and told her that I wasn’t deaf, and only dumb some of the time.
88. While at my job as a service station manager/auto technician, I was trying desperately to get all the work out and customers notified by closing time. With all the last minute calls to be made and with time running out I found myself doing a very unusual thing. I had the Servox to my ear and the cordless phone at my stoma! I couldn’t do anything but LAUGH!!!!
87. Egad! I pushed the envelope (whatever that means)! I stepped right to the edge. I challenged death and spit in its face. Maybe I’d better start at the beginning. You see, for the last 36 days I’ve had this tube stuck in my belly. It’s is used for feeding purposes. Five times a day, I open a can of vanilla tasting goop, mix it with a little water, and inject it into the tube. The doctor tells me that I cannot even begin to think about swallowing anything until I receive an esophagram and he knows whether I am “leaking” or not. In fact, when he allowed me to go home from the hospital, he made me promise that I wouldn’t attempt it. I agreed. And that brings us to the present crisis.
Now, the doctor did say that I could rinse my mouth out with grape juice or something as long as I didn’t swallow. This has been doing alright, but yesterday I came across the demon, crushed pineapple. I opened the fridge and there it was.
I stared at it for a few minutes then made the almost fatal mistake. I removed it from the fridge, brought it over to the sink, picked up a spoon and shoved it into my mouth. Just a couple of chews and spit it out. Nobody would ever know. It would never be missed. And then it happened. Somehow, seemingly of its own accord, the pineapple began to move to the rear of my mouth. I could feel the automatic swallow mechanism take over and I was within a second of committing suicide. With an almost inhuman effort, I stopped the swallow reflex and managed to spit out the demon pineapple.
So I live to see another day. When I realized I had beaten the odds, a calmness came over me. I picked up my newly acquired Servox, stuck the stick in my mouth, articulated perfectly, and advised my daughter, “Some people skydive for thrills. I chew crushed pineapple.”
“Wha’d he say?” asked my other daughter.
“I think he has to go to the bathroom”, she replied.
86. Several months after surgery I was going to see the doctor, my daughter and I were on a crowded elevator, I was talking with my Servox and all of a sudden I hear this little voice, “mama, mama, I hear a robot.” He was very disappointed when he saw me.
85. While visiting me in the hospital my granddaughter told her mother “Granny has two belly buttons”. My daughter looked at my stoma, which was not covered and said you are right!
84. I went down to see my daughter, in Lakewood, CA seven months after my surgery. It was my first major trip. My daughter and family were gone and my husband was in the shower. I was cleaning my stoma. I have a stoma button which I wear all the time. I had my lighted mirror in front of me and I was using a Q-tip to clean the inside of the button. I was twirling the Q-tip between my fingers to wind the mucus around the head of the Q-tip. At the same time I inhaled and watched the Q-tip disappear down my stoma. I quickly bent over to keep the Q-tip from going any farther down than possible. I ran bent over in and got my husband out of the shower. Of course I couldn’t talk to him and tell him what was wrong. He could tell by the expression on my face and the fact that I was pointing wildly at my stoma, that something was terribly wrong. I ran back to my chair and my mirror, all the while staying bent over. I took in air easy and coughed hard. All of a sudden the head of the Q-tip appeared and I grabbed it with a long fake nail that I had put on the day before. I wish I had, had a camera and could have taken a picture of my husbands face as I pulled that Q-tip out of my stoma. It is funny now but it wasn’t then. The angels were sitting on my shoulder that day. So now when cleaning my button I hold my breath. My ENT said I was extremely lucky. She said she has had to go after Q-tips surgically.
83. I’ve been a lary for 5 years now (remember, we celebrated at the IAL convention), and this has never happened to me until yesterday at the local Publix. I stopped at the fish market area. An older gentleman was trying to help the gal in front of me who was really being a pain. The worker looked like he was new at the job. Anyway, after finishing her order, the woman walked away. He turned to me and said, “I finish her order when she comes back. What can I do for you?” I told him in my EL voice that I would like a pound of Talipia. He looked surprised when I spoke but started to fill my order. He went to the scales and turned to me. Raising his voice to a near shout, he told me the weight while using his fingers to indicate the exact weight. I said “Thank you” and went about my shopping. I guess we who cannot talk “normally” are also deaf. Bill asked if I said anything to him and I said “No. He was being harassed enough”. But I giggled all the way through the store. Now, excuse me, I have to look for my ear trumpet.
82. I have one for your funny side. The first way I spoke after surgery is the electrolarynx. My five year old grandson was so excited when he heard it. He lives in California and was always begging his mother to call me so he could talk to grandma. No one quite knew the fascination he had for always calling grandma until his mom heard him talking to his friends. He was very proudly telling them he had his own grandma robot and he could talk to her any time. When I gave up the electrolarynx, he was SO disappointed.
81. I have something I think is hilarious to share with you about my experience with the voice built into the denture (UltraVoice). This would even be funnier, I think, if I had a full denture instead of just a few back teeth. I placed both the handheld unit and the oral unit on one charger facing each other, and I kept them in an unused upstairs bedroom. One evening I went upstairs and heard music coming from the room. I went in and nearly collapsed in laughter. There were my teeth on the dresser playing music. I called my husband upstairs to see this as I knew without seeing it one would have a hard time believing it. He also went into a laughing fit. I mean you haven’t lived until you have singing teeth! I called the company I purchased this from and they said I must live near a radio station, which I do. There was no solution other than I stay out of range of a radio station. The radio station is two miles from my home, so it was either move or sing.
80. My husband and I were on a walk today and we ran into one of our neighbors who was sitting on his porch trying to cool off. He is also a victim of throat cancer and uses a Servox. We had a long conversation, since we haven’t seen each other since last fall, while my husband waited. When we parted with good wishes for good health and promises to get together, I said to my husband that we must have sounded like a swarm of bees with both of us talking with electronic voices. He assured me that we did not…………it was more like a flock of Canadian geese flying overhead!
79. One February evening in 1994 around midnight, after working a double shift at the police precinct station, I dragged my tired body home. That daunting task was exacerbated by a two week, sub-zero freeze of everything, to include several inches of snow and ice that been around. The roads were coated with ice seemingly forever, and a 3 mile ride home was about 1/2 hour in duration. Upon my arrival home, I realized my trusty Servox was MIA. Well, how does one make a phone call to inquire if it is where you last thought it was? So, back on the road to the precinct. Cannot find it anywhere. Okay, out to the ice encrusted parking lot. Eureka! There in the middle of the driveway, under a pile of slush, was my aluminum friend. None the worse for wear considering it was cold, wet and apparently had been run over at least once in the hour or so it took me to locate it. After getting it home and cleaning it out, I was a new man. It was an awful feeling to “lose” your voice, yet again, as well as a $700 investment. Looking back, it was amusing, but not then.
78. Our youngest, Sue, came home from college for a visit. Dave has the habit of when he comes inside to cough, sneeze, etc, he lays his valve down, but then can’t find it. She said he gives a whole new meaning to “losing his voice”.
77. My grandson now talks to me with his finger over his throat. He sounds hoarse and says now he can talk like me.
76. After my surgery, back on my feet and itching to get back to work. I went to the local unemployment office. While getting out of the car, I dropped my Servox. It bounced on the concrete and promptly rolled under the car, up against the curb. Not reachable. I tend to pride myself in being able to come up with solutions to problems– one of those think on your feet type of gal. I remembered that my husband had been fishing and I could just bet that he hadn’t taken his fishing equipment out of the trunk and to my satisfaction I was right. He had this nice treble hook on one pole and I promptly took it out of the trunk, went fishin’ under the car and retrieved my Servox. I went on into the office to see about a job and the gal at the desk was having her laugh of the day–she said she had been watching and couldn’t think what on earth I was doing with the fishing pole under the car.
75. My nickname, among some of my friends is WHALE. I think I consider this a compliment. I have researched whales for many years. In Hawaii, Alaska and here in Puget Sound. The joke that evolved with my friends in Hawaii is this:
A whale breathes through a blowhole.
I now have a blowhole
A whale makes sound by an exchange of air and vibrating soft tissue.
That is the way I now make sound.
A whale controls sound and communicates by changing the shape of tube.
I can change the shape of the tube and change the sound.
A whale is gentle and accepts it’s lot in life.
Need I say more!
One that I’m not too sure I like, a whale keeps warm by a layer of blubber.
I’ll not admit to that, yet.
74. G’day from Oz. For those of you having difficulty occluding with your thumb – my speechie has a guaranteed solution. Place offending thumb on flat surface, strike smartly with hammer, thumb will spread sufficiently to cover stoma – no problem!
73. I was at a business supper in DC two or three years ago, it was well into the evening and my tie was at half mast. I had done lots of talking that a day – a normal day – and my glue on my handsfree was beginning to break down. When that happens I hold a finger against the flange to maintain the seal when I talk. It was a crowded restaurant, and quite noisy so I was using more back pressure to speak louder. All of a sudden the valve blew out and bounced twice on the table. I caught it mid-air after the second bounce, occluded with my thumb, and said, “That’s a helluva of parlor trick, isn’t? If I could just figure out how to do when I want to I could have a lot of fun with it.” The three of us laughed, and continued on with our meeting.
72. This morning my sister and brother-in-law were coming over to help us on the remodeling of my kitchen so I woke up early and raced to clean the bathroom (necessary, right gals). I was busy cleaning the house, including making the bed (A useless feat if company is not coming. But my sister is a neatnic…ugh.) When my husband, Bill, returned from getting a hair cut and a few groceries, I reached for my Servox which I usually keep in my right hand pocket of my jeans. Oh, my goodness, it was not there. I take my Servox with me to bed and keep it in the top drawer of the night stand but it wasn’t there either. We then began a frantic search for it. I even put a battery in one of my loaner closet units so I could talk. We upended cushions, looked behind furniture, even stopped the dishwasher in case it might had fallen in there when I started it. I ended up standing in the living room, close to tears, and trying to remember what I had done this morning. I walked into the bedroom and unmade the bed. There that little sucker was …under Bill’s pillow. I think making a bed every morning is not the greatest household chore for me to do.
71. After doing some shopping at Wal-Mart this afternoon I returned to my car in the parking lot. The car parked next to mine belonged to a lady I have know for a long time but not seen in ages. She was standing next to her car and turned to ask me how I was doing. Barely being able to speak a few words I said: I am doing fine thank you.. She looked at me and said, “OH, MY GOD, YOU HAVE TERRIBLE LARYNGITIS – take good care of yourself” and then she drove off.
70. Monday I was going to a very important meeting at Canon USA. I was almost there when I realized I had forgotten my VOICE so had to go back to retrieve it. How many people can go into a meeting late and say “I’m sorry for being late to the meeting, but on my way here I realized I had left my voice at home”!!!!
69. Like some of you, I, too, have left my voice at home but I found it helped me with my esophageal speech. I have been taking classes for a few months now and I was amazed how clear and loud the phrase” Son of a Bitc#” was. My therapist would have been proud.
68. I’m a TEP speaker and invariably after a few hours without talking I’ll pick up the phone and when the other end says hello realize that my hands-free valve or my prosthesis is full of mucous. STRUCK DUMB, DUMBSTRUCK or just plain DUMB.
67. I have a story about taking a bath, the first time I took a relaxing bath, after my surgery, was when we moved to our new home after getting married in 1998. We have a beautiful bedroom/bath combination with a huge, mirrored garden tub – I couldn’t wait to get everything in place, unpacked, put up, so I could try out that beautiful tub, with my favorite aromatherapy bubble bath and a tub full of very warm snugly water. I slid myself down into what was the most comforting feeling I had had in weeks (with all the moving etc.). Well, to make a long story short, I totally forgot I was a laryngectomee, slid down in the water clear to my chin, and nearly drowned myself! Thank heavens my husband was home and heard me. He came running in there, got me out of the tub and stood me on my head, and I spent the rest of the blasted night coughing my lungs out! So much for the beautiful, mirrored, garden tub. I take showers now, with a carefully placed shower guard around my neck.
66. I was a widow 13 years before my laryngectomy surgery. After getting out of the hospital from losing my vocal cords and everything else due to cancer, I was off work recuperating for 3 months and apprehensive about returning to work and how my fellow employees would respond to me. The first day back not many tried to talk to me, but one brave fellow said “Wow, Marlene, you should have no problem getting a man now, every man’s dream, a woman that can’t talk!” My reply was, “A MAN? Good grief, I just got cancer, I don’t need a man on top of it!” This broke the ice, and now every one talks to me and treats me like nothing ever happened. A true story.
Marlene E. Snider
65. I was diagnosed as having developed three more tumors, two small and one larger which involves the carotid arch and which, in the opinion of two specialist, could be operated on but with no chance of getting it all. Needless to say I have had enough surgery, radiation, and I had decided that there would be no Chemo for me. That fateful day was January 4th. I took a few days to let it all sink in and then told all of my family members. I sort of drug my feet about telling my neighbors, and tried to figure out how best to do it. I sure didn’t want to call them in one at a time, so I decided that I would have them in after church Sunday.
They all filed in about 1:00 to 1:15 and I was rather upset to see my neighbor’s granddaughter, about 6, with them, but I decided that I would use more “clinical” terms so I wouldn’t upset the child. She is my little gardening buddy who always shows up “to help” when I am picking strawberries.
I don’t remember all my words, but I started out that I accepted God’s decree, and went on to explain that I was Terminal and had 6 to 10 months more or less. I suddenly noticed the child get up and move to the living room window and peep out. Of course there was discussion and pledges to help and prayers. As I served coffee and cake I noticed again that the little girl kept going to the window. Her grandmother saw that I was watching and suddenly burst out “Debbie, what on earth are you doing?” Debbie looked rather surprised, and piped up “Well, if Barbara is a terminal, I was just waiting for the bus.” Even though it was slow at first, my roomful of friends, relatives, and I burst into laughter. So, here I am, “WAITING FOR THE BUS.”
64. I am reminded of an incident which happened to me about 12 months ago when I was wearing a small flesh coloured foam cover. On my way home from work one night, I decided to stop off at the local pub for a few pints and a go at the crossword. So, I go in and get myself settled, a pint in one hand and a pen in the other and am quite happy until I get the feeling that I am being watched. When I look up I can see a man not far away drinking and smoking and obviously staring at my filter! It’s not the first time this has happened, so I try to keep my head buried in the crossword in the hope that his curiosity will fade. The next thing I know is up he gets and starts stumbling his way towards me. I get ready for the usual “What have you done to your neck” question. Up he comes to my table and says “Excuse me mate, I hope you don’t mind me asking but is that a nicotine patch on your throat – I am thinking of trying them myself and wondered if they are any good?” When I had stopped laughing I explained what the filter was there for and that although it was not a nicotine patch it had certainly made me pack up smoking. I have never seen him since but like to think that I encouraged him to pack in smoking, too, and saved him the expense of the patches.
63. I volunteer at a local hospital and for a while was working in their day-care with 4 and 5 year olds. We first thought that being a laryngectomee and using a Servox might be a problem for the kids, but—not so! One child was misbehaving and annoying the others. I asked him several times to stop but to no avail when it occurred to me that maybe he couldn’t understand what I was saying. Finally, I asked, “Dallas, can you hear me all right?” Quickly he answered, “No, Ellen. I think you need to change your battery.”
62. This is one of the best yet: recently a member of our club was in Texas and needed to see a physician who sent her to the hospital for pulmonary function testing. Here is a quote from a letter she sent to our Club President; “one of the tests was breathing through my mouth into a machine & as the nurse was explaining to me- I looked at her & said, “I’m a total neck breather.” “Oh,” she said & out the door – came back in and asked me if I could tolerate her closing my stoma & forcing me to breathe thru my mouth.” HELLO, IS ANYBODY HOME IN THERE?
61. Something you rarely hear at a lary support meeting : “That’s easy for you to say!”
60. I was a disability claims representative for the Social Security Administration and a great deal of my job was face to face interviewing of the public. One afternoon about three months after getting my Servox, I was called to the front desk to assist a woman who was having difficulty with her monthly benefit check. When I realized that I had left my EL back at my desk, I decided to continue the interview anyway. You see , the woman was deaf and read lips. Didn’t matter that I made no sound when speaking. I was able to answer her questions and solve her problem.
59. I was recently in for my monthly exam. My doctor of seven years stuck his dentist’s mirror in my mouth to look down my esophagus and few seconds later asked me to breathe to unfog the thing. I said, “Oh?!”
Duncan Bruce III
58. When I was learning esophageal speech, I was at a friend’s house, she has a business and her office is in her home. She had paged a friend and when the phone rang, asked me to answer it, because she knew it was him. It wasn’t. The lady told me to drink hot cinnamon tea and I would feel better. I thanked her and gave the phone to my friend. The lady then told my friend that she was mean to make me work when I must feel so terrible. We were laughing so hard, it took her awhile to explain to the lady that I was a laryngectomee and that was the way I always sounded. In fact I was thinking how great I must sound if I sounded like I only had a cold. It was a wonderful day for me. When I finally met the lady a few months later, she apologized again. She could not understand how her “mistake” could make me feel so good.
57. I have a step grandson for the past year now, he is 3. He has always been very interested in my stoma, always inspects it to make sure it is ok. Well, they had not been in for awhile and he started talking to his parents with his finger to his throat. That weekend he went to his Memas house and was talking to her with his finger to his throat. He told her that he wanted her to talk like Grandma. So, she put her finger to her throat and spoke. He said, “You’re not doing it right, that’s not how Grandma does it.” We all got a big kick out of it and figured he wanted to see his grandma.
56. In the “old habits die hard” department, when I am out of breath from climbing some stairs or other reason I still find myself opening my mouth wide for that extra gulp of air. I then just laugh at myself once again. Old habits do die hard.
55. On Saturday, August 20th my wife and I were invited to a very posh New York City wedding. The ceremony took place at 3:00 PM at Saint Patrick’s Cathedral. Many of the guests had limos waiting outside to take them to the Park Plaza. I told my wife its only 10 blocks we can walk it. We did, she in high heels. We got to the Plaza and met our friends who were drinking wine, $9.50 per glass, and vodka drinks, $12.00 glass. My wife complained her feet hurt and was not going to walk another 10 blocks to the Tavern on the Green (reception). When we got outside again we had no limo, so i hired a horse and carriage to take us to the reception (very romantic and it made up for high heel trek) at the Tavern on the Green the live reception band was great and most of us danced the evening away. At one point the band was playing “Rolling on the River” (Tina Turner version) – I was dancing away and mouthing the words to the song (“left a good job in the city, workin for the man both night and day blah blah blah”). Well, the bands lead singer saw me singing (mouthing) the words and stuck her microphone in my face and we proceeded to sing it as a duet. I didn’t have time to tell her I use a very quiet esophageal voice or show her my stoma (which I’m sure would have given her a heart attack) luckily the hall was so loud that only my friends could tell the duet looked good, but was really a solo (so low nobody could hear me.). My wife and all her nurse friends laughed like hyenas. The band singer gave me a hug.
Robert Herbst, Jr.
54. I have an Swiss/Italian board member in our Conference of European Laryngectomees and he came with the following story. He is a very good esophageal speaker but decided to get himself an electro-larynx in case of emergency. He got one and took it home. His wife was in the kitchen and did not hear him come in. He took out his device and said “hello” with it. The next thing he saw was the coffee pot in thousand pieces on the floor and the cat was hanging in the curtains.
53. Joe, a laryngectomee, was flying with his wife en-route to a long awaited vacation. The plane ran into some turbulence and the “fasten your seat belts” light came on. Several minutes later all the little oxygen masks dropped down from the ceiling. Joe very calmly took his mask and placed it around his neck so that cup covered his stoma. Being a TEP speaker he was now unable to occlude his stoma to speak. The flight attendant came up to Joe and said,” Sir, you have to place it over your mouth and nose not around your neck.” Joe’s wife, speaking through her mask said, “That’s alright miss. He’s a laryngectomee.” After a long pause the flight attendant said, “I don’t care what his religion is – he has to put it over his face like everyone else.”
52. When changing planes in Atlanta after the Christmas holidays, an airline agent met arriving passengers and was providing us with the gate numbers for connecting flights. Anticipating this while still on the plane and knowing my hands would be full with carry-on baggage and my electro-larynx out of reach, I had written my hometown in large block letters on my ticket envelope. It was sticking out of my jacket pocket with the printed hometown in plain view. The agent asked, “what city?” I pointed to the ticket with one of my hands which was holding a carry-on bag. She looked at the ticket, but asked again, “what city?” I repeated pointing at the ticket. She paused, obviously thinking. She then proceeded to give me my gate number in SIGN LANGUAGE! Interesting how many people link the loss of voice with being hearing-impaired, but I WAS impressed that this airline agent knew sign language!
51. A couple of days before Halloween I was expecting a friend to drop by, so when I heard the knock on my door I opened it right up. I forgot that my stoma was uncovered. A young man, who had obviously knocked on the wrong door, took one look at my neck, grabbed his own with one hand, developed a sudden interest in carefully examining the tops of his shoes, and took several quick steps backwards as he gestured frantically with his other hand towards the neighbor’s door. I then realized that my stoma was uncovered. I was sorry to have scared him, but the look on his face told me that I might never again need a Halloween costume!
50. I have used Montgomery Wards for many years, pre and post laryngetomy surgery. I have come to know several of the Staff very well, and a Head Cashier particularly well. In recent months I have been leaving the electro-larynx at home while attempting to learn esophageal speech. Last week I visited the store for the first time in a long time and was greeted by Julie, the Head Cashier, with a big hug. We chatted for a few minutes then, suddenly, she grabbed my shoulders and exclaimed “Frank, honey, YOUR VOICE IS GROWING BACK!!!!!”
49. I was cooking some Chili a while back and diced up a huge onion to go in it. I wasn’t expecting company but the knock on the door was an old lady friend from High School whom I hadn’t seen since my surgery. Of course I had to say hello and doing so I put my finger to the stoma without thinking – the onion juice was still on my finger so you can figure the result. She said, “The chili smells good and the onion even better.” She gave me a hug and said, “You must have been eating the onion raw!” That’s is the only time I think I’ve ever said Thank You to a woman who said my breath smelled like onion! Of course, she got a kick out my explanation of why the strong odor!
48. I was playing with and holding my granddaughter in my arms when she was about 2 and someone said something and I turned to look away and she poked her finger in my stoma (under a foam cover). She could talk pretty well and wanted to see if she could make me talk and make me sound like I did by putting HER finger there. She was used to playing with the Servox, so I guess she figured that little white thing (TEP) was a button just like the other on the Servox.
47. While at the gym the other night, my “certified trainer” came up to me, noticed my stoma and then seriously asked, “So, Peter, do you tape that up when you go in the swimming pool?”
46. Soon after returning to work and recuperating from a total laryngectomy, I was performing a little routine maintenance on my stoma and prosthesis. At this point, I was very much a rookie. That fact was readily apparent as I was attempting to perform this little delicate operation while seated at my desk and holding a mirror in one hand and small cotton swab in the other. The key word here is small. The swab was a Q-Tip or the generic equivalent. These are fine products, but this was neither their intended purpose nor the proper orifice. During the course of the procedure, I touched some tissue that was never supposed to be touched and that produced a fairly violent and involuntary cough. I’m sure that we have all done that. Following the cough, there was the obligatory and equally strong, involuntary inhalation and you guessed it – the swab was gone. No – It was not on the floor, desk or anywhere else. It was in me. No one had ever discussed this possibility let alone suggested any effective remedy. After allowing myself to experience the requisite panic, I reasoned that if a cough caused the problem, then just maybe a cough could get me out of this mess. I took a very slow deep breath and coughed as hard as I could. Something flew out. Unfortunately our office is configured in Dilbert cubicle style and this flying object left my little designated work area. Fortunately, there in the middle of a co-workers desk was a beautiful sight – the offending swab. My father always told me that we learn life’s best lessons from the stupid things we do and this little episode certainly fits that characterization. You may certainly choose to disregard any or all the tips and helpful hints published on this web site, but hear this. NEVER, NEVER, NEVER PLACE ANYTHING SMALL ENOUGH TO FIT IN YOUR TRACHEA NEAR YOUR STOMA – IT WILL FIND ITS WAY IN THERE!!!!! Marvin Whitley
45. While speaking English using my electro-larynx with a telephone operator, she was having a problem understanding me so she said she would connect me with someone who could help me. She then connected me with a Spanish speaking operator. Spanish is not my second language! Pat Smith
44. We were camping in Chechie and there was a little five year old Dutch boy who followed me from the moment we arrived. He looked at my stoma cover but never asked anything. One morning, he came, stood in front of me, looked up at me and said, “You had cancer, eh?” I said, “Yes, but how do you know that?” He replied, “I asked my Mom but she told me not to tell you that you had it.”
43. During a family dinner with my parents, brothers and sister and the in-laws, I had a piece of meat catch in my throat and started to cough. At the same moment, I blew all the candles out at the table. We laughed our eyes out.
42. One of my patients was a police sergeant. Following his laryngectomy, he was placed on desk duty (answering phone calls). He wasn’t allowed in the field because he couldn’t carry a weapon and shout “Stop or I’ll shoot!”. One day, after giving a woman instructions over the phone for ten minutes, answering her questions and the like, she thanked him and then asked when she could speak to a real person. She thought that the “new police computer” was astonishing and couldn’t figure out how a machine could answer her questions so easily. When my patient told her he was a real person, she chuckled and said, “What will they think of next?”
41. I went on a field trip last week with my 6 year olds’ first grade class to the public library. One of her little girl friends came up to me and asked, ” Mr. Lauritzen, did you have you head cut off and then sewed back on?” My little girl started laughing and said to the other little girl, “No, he just has a hole in his neck and can’t talk”. And then they both laughed. That cut from ear to ear is a tough one to explain to a 6 year old. Anyway, aren’t little kids great! She is always wanting me to show her friends my “hole.” She gets a kick out of watching the expressions on their faces.
40. I teach at a community college that has a very good and very active Licensed Vocational Nursing program. Each year I am invited to talk to the class about larys, stoma care, laryngeal and throat cancers, and communication problems. It is a fun filled couple of hours as I pass around various electro larynx’s (laryngi??) and talk about common experiences of people in the post operative environment. Last year, after talking about mucus and some of the problems of dealing with a runny nose, and how foam stoma covers can become clogged and need to be replaced, I took off my stoma cover to show them how the mucus adheres to the inside and clogs up the area just over the stoma, and that even if the rest of the foam cover looks fine, it is only that part which is directly over the stoma that dictates whether or not the foam needs to be changed. I then moved onto talking about emotions and how laughing and crying sound exactly the same when you are a lary. I showed them what I meant: I showed them what a “cry” sounded like, and then I showed them what a “laugh” sounded like, and as I was inhaling and exhaling vigorously – without a foam stoma cover in place – I accidentally “coughed” a huge piece of mucus right out into the class. And there it was: this huge piece of mucus that seemed to hang in the air and move slowly and inexorably toward the middle of the class room; it begin to break apart in slow motion and the entire room became absolutely silent. It separated and each piece took a trajectory that guaranteed that everyone within three feet on either side and a good 10 feet back into the classroom would get their special tutorial lesson on “Mucus Distribution Within the Confines of a Standard Community College Nursing Lecture Environment”. And suddenly we all began to laugh. With all of us laughing, I was able to make my point that laughing does sound so much like crying that it seemed a waste of energy to cry when the exact same sound represents laughter.
39. As Larys we often forget that we aren’t “normal”. Recently I had to re-qualify with a handgun so I thought I would go out to a canyon near by and do some serious target shooting. As I backed up from 25 to 50 to 75 and was finally shooting at 100 feet I found I was doing rather well — once I found “the groove”. But my foam stoma cover was beginning to clog up with mucus so I took it off without thinking so I could concentrate on the target 100 feet away and find “the groove” that would send all shots very near the bulls-eye. Just as I found that “feeling” that makes each shot fly like magic to that little one inch circle 100 feet away, just as I began to relax and enjoy that feeling of “being one” with the gun and bullet, just as I was firing off round after round after round knowing that a little hole was punching through the target within an inch or so of the bulls-eye, just as I was attaining that feeling of sublime bliss where you know that nothing can go wrong, that every shot will be perfect, a shell ejected, flew through the air, and plopped right into my stoma! It was quite a surprise, but I just bent forward and coughed it out. The little rush of adrenaline sure ruined that sublime feeling of “being one with the gun and bullet” and that “feeling that nothing can go wrong”? Well it too vanished. Even after I put my stoma cover on I could never recapture that feeling of control. Most people flinch at either the kick or the sound of a gun. Me? Now I flinch at the thought of a shell casing making a “hole in one”. The moral of this lesson is that if anything can happen it will. If you need eye protection, you probably need stoma protection as well!
38. I received my phone bill last week, and as always I had been overcharged on my overseas calls. I immediately called MCI and explained to the customer service rep that I was Frank Morgan and what my problem was. She gave me grunting indications that she was with me all the way, and then hit me with “Now Madam will you please speak in your normal voice as I can’t understand you.” I assured her that was my normal voice and that I would keep calling till I found a rep who did understand me. Frank Morgan
37. About 6 months after my operation while I was still using a Cooper-Rand as a speech aid, my wife’s best friend brought her young (4yr old) grandson to the house. While she and the wife relaxed on the front porch with drinks and cigarettes, the child was inside with me trying to play with our dog. I showed him where we kept the dog’s toys and pointed out the dog’s favorite. He picked it up just as his “granny” walked in and started to show it to her where- upon she reminded him that he wasn’t allowed to touch things that didn’t belong to him without permission. His immediate reply was, “But, Nana, the ROBOT said it was O.K.”
36. Overheard at the Cancer Society Dance: “When I dance with a neck breather, he breathes hot air down my cleavage.”
35. Chris uses the electro-larynx. During the summer we like to camp. So for our vacation and anniversary we camped up near the upper-peninsula in Michigan – just before the bridge. Well, because it was our anniversary (no kids allowed) we went to the Indian reservations – hitting the Casinos. We went to one of the larger Casinos and soon we discovered we were being followed. The security guard was following my husband and watching, he thought that the electro-larynx was some sort of device to beat the slots… don’t I wish. He stopped watching us and conversing on his walkie-talkie when Chris finally said something to me.
Chris & Julie Marceau
34. Two “Neck Breather” jokes:
Two neck breathers were conversing with their electro larynx while working on their computers. Suddenly, this message appeared on their monitor screens “Are you mocking me?”
A neck breather was touring a large auto production plant and commenting on the ‘high tech production methods using his electro larynx. Slowly, one of the production robots reached out and gave him a big friendly hug and a high five.
33. My grandson said this to his mother: “PopPop has a belly button on his neck.”
32. Part of my job entails going into court to conduct commitment hearings. In these hearings, I represent our State Department of Mental Health, and more specifically, the individual state mental hospitals. The hearings are used to obtain or retain mental commitments on patients. During one commitment, in which a number of lawyers were involved representing a number of parties, including the patient, his aged girlfriend, her relatives who were worried that she was being taken advantage of, and the state, I was using a small amplifier with neck microphone to allow my voice to be louder. During the patient’s testimony, I suddenly realized that the amplifier was playing a local rock radio station. The judge and I exchanged glances and almost broke into laughter (the subject of the patient’s testimony did not help matters much either). I quickly turned off the amplifier!
31. I use an Optivox Electro Larynx with an oral adapter and a rigid tube. Last October I was in the town of Widnes, near Liverpool, England, talking with a Cancer Support Group. The patients were mainly women with breast cancer, and one of them was intrigued by my voice. When we got to question time, this lady asked if I could change the end of my device. I said “Yes I could, but why would I need to?” SHE SAID, “IN CASE YOU NEED TO SPEAK GERMAN, OR FRENCH………..”
30. When I went to my son’s recently, my grandson heard my new voice (TEP) for the first time and he said, “Gee, Grand mom, you sound grouchy now – can’t you use your old voice.” My 1 yr old granddaughter then ran the other way, until I pulled out my old Electro-Larynx and started to speak. She came right over to me and hugged me, grabbed the Electro-Larynx and held it to her throat and said YA! YA! YA! This made everyone laugh a little.
29. Waiting in line to register for my chemotherapy, a lady said to me that there wouldn’t be anyone there until 1:30 PM. I decided I just had to thank her, so I wrote her a thank you note (remember, I have no way of speaking). When I handed it over to her, she said, “I’m sorry, but I cannot see.” With that, we both started laughing infectiously and a lot of other people broke out in laughter. All it takes is a little communication to make this world a little brighter.
28. Shortly after my laryngectomy and TEP, I was making a phone order from a catalog. The young lady on the line interrupted my SLURRPY words with “Pardon me Sir – do you drink?” “No I do not!”, I replied. She then said “Oh! I am so sorry – I thought you had a drinking problem.”
27. When my husband came home from the hospital he was using the Servox and very well at that. He hadn’t spoken on the phone much because I usually answer it. Well, I had to go do errands and I asked him to tell a client that was to call some information about when I would be back and information about his mortgage. I returned home and he said that the client had called and that he had given him the information and had taken down his phone number. I called the gentleman and with complete surprise he was quite impressed that I had a computer that could answer my phone and give out messages like that. I told him it was my husband but he didn’t believe me until I broke out in laughter.
Chris and Julie Marceau
26. I am going to college full time and have been plagued with calls from credit card companies and unwanted solicitations. My husband uses the Servox. So I started getting sick of all the disruptions and asked my husband to answer the calls like he is an answering machine – and at the end, just say….beep! Don’t laugh, It works.
Chris and Julie Marceau
25. The first year after my laryngectomy, I was a “Servox speaker”. I spent a lot of time with my kids and their friends. At that time my son was 13 and my daughter was 9. Children have a lovely way to accept irregularities such as having a strange voice, like the voices we have. One of the first times I was with my daughter’s friends at school this curious boy listened very closely to me and I could see that he wanted to try the Servox and ,of course, I let him do it. Soon he managed to speak quite well with it. Then he asked me: “But Tor, what is that other knob for?” I waved my hands, making him understand that I needed the Servox to answer him, then I said “As you can hear, I speak normal Norwegian, but if I use the other knob, it will change to English”, I said, and as I changed knob I also changed language. For a short moment the faces of the kids were astonished, but when they found out that I fooled them we all broke out in good laughter!!
24. For some reason, in the initial period after my laryngectomy, I NEVER sneezed. When I finally did, however, it was a hoot!! I was sitting at home, in front of my computer. All of a sudden, my nose started to tickle and I felt the sneeze coming on. Doing what was then routine, I sneezed…quickly covering my nose and mouth with my hand….only to quickly discover that I had just sprayed my keyboard and computer screen with hundreds of droplets!! What a way to learn to cover the right HOLE!! Thank goodness for Kleenex and Windex, too!
23. I prepared a bowl of soup for my mom, a new laryngectomee, that was a little warm. She first blew on it with her mouth…….then rolled her eyes at me….and then lowered her neck to the bowl and “wheezed” on it. Needless to say I cracked up!
22. In the hospital, when mom was very thin and was put on tube feeding, she mumbled under her breath, in front of the nurses, “they’re fattening me up for the kill.” I mumbled back to her, “quit talkin’ like a damn turkey dinner!”
21. I was in the grocery store right after Christmas a couple of years back before having the TEP and had to use the Servox to speak. A little boy heard me and asked, “Mister, did Santa bring you that for Christmas?”
20. Having been a beer drinker for years I naturally like the taste still. Now though I drink the non alcoholic kind I go to the beverage store I always went to before surgery. I had been playing around with my Servox and as Servox users know it has a kind of Bass button and high pitch button. I love the Budweiser Frog Commercials and said I can do that, so with a little practice I got to where I could imitate the frogs and their “BUD-wi-SER” pretty well by alternating the buttons when speaking. I went into the beverage store and ordered that way, needless to say getting a lot of attention and “sobering” comments from some who heard it.
19. One day in June a couple of years ago, Joe and I were meeting for our twice-weekly speech lesson. He had mastered the artificial larynx and was now learning esophageal speech with good success. While Joe could accurately produce single-syllable words, two-syllable words were a bit more difficult. After repeated attempts to say, “sev en” in our counting exercise, Joe looked a me and said, “Wowee Brian, this laryngectomee stuff is a real pain in the neck…no pun intended!” He later became an excellent esophageal speaker.
18. On the day I left the hospital after surgery, the hospital staff brought me lunch — a chicken sandwich, a BIG thick one…this to someone still trying to deal with Jello and soup! Well, if they’d offer it, I’d try it. I took a bite that promptly got stuck. The nurse saw me working to get it up or down. She thought surely I was choking. I had to convince her that choking is one problem we don’t have!!!
17. On my first solo trip to the bank after my surgery it was the dead of winter here in Pennsylvania and the temperature was near zero. I bundled up with a real heavy jacket and zipped it up as far as it would go. After parking, I started to walk to the bank only to draw stares from everyone who passed me. Not knowing what they were staring at , I withdrew my pocket mirror to see what was wrong with me, lo and behold ,as I chuckled to myself , I saw the steam rising from the collar of my jacket instead of from my nose and mouth. I guess I gave a few people a good laugh or two. Bob Hoover
16. I was in the check-out line in Walmart and a blind lady with her seeing-eye dog was in front of me. After she made her purchases and left, the check-out clerk, (an overweight, nosy, know it all person), said to me, “My, aren’t we lucky”. I immediately pulled out my electro-larynx and replied, “Yeah, we sure are”. The clerk gave me a dirty look and said, “Well, at least you can see”.
15. One of my patients said a friend told him that he should go and see a doctor about his voice. My patient responded “I have already seen a doctor. That’s why I sound this way and I’m not going back again!!!
14. A physician I was fitting with a Blom-Singer valve communicated that the whole process was uncomfortable and painful. I said jokingly, “But you are a physician, you are supposed to understand and tolerate pain”. He wrote–NOT MY OWN!!!!
13. A store clerk refused to wait on one of my patients, saying, “You see that hole in her neck. That’s the beginning of AIDS”. (I can’t say I find this humorous. I do find it pretty sad).
12. When Bill & I went to a wedding after his surgery, a small group of children started following him around calling him Darth Vader. He loved it and showed them how his electro-larynx worked, and they all paraded around after him at the reception. When we left to go home, one of the little boys called out, “Bye, robot-man!” It is amazing how children are able to cope so easily with these things, while adults are often so uncomfortable.
Mary Alice Renison
11. Shortly after my surgery in 1993, I was at the store shopping for groceries and the aisles were kind of narrow and there was a rather large person in front of me who was just poking along looking at ever item on the shelves and buying nothing. I had my Servox with me so I just “tooted” it at her and when she realized that there was someone behind her tooting a horn, she moved out of the way and said, “Well I never”. I passed her and smiled and went on my way.
10. I, for one, don’t mind some humor about the loss of the voice box (my favorite recent tasteless joke was on Comedy Central’s “South Park”, a show noted for tastelessness. One character is a Vet without a voice box. Ned uses a Servox. At Christmas, he and his buddy performed “O little town of Bethlehem”. Ned “sang”. Partially through the song, while his buddy kept telling him that he was flat, his batteries ran out). I thought it was quite funny.
Terry G. Duga
9. When I was using the electro-larynx, I was in a store with my brother-in-law shopping for Christmas decorations. We were discussing just what we would need, when I noticed a boy about 5 or 6 looking and listening to me intently. Then he turned to his mother and said ,”I want one of those for Christmas.”
8. One day my two oldest grandchildren were sliding down my bathtub and getting water all over the carpet. At that moment I was shaving and didn’t have my TEP voice operational and I turned and mouthed to them “Quit that, you are soaking the bathroom!” One of them looked at me and said “Oh, Papaw, go get your robot voice.”
7. My seven year old Grandson called me on the phone one Halloween night and asked if he could borrow my voice (Servox). He was going to go to a Halloween party at school as Darth Vader and he knew if I would lend him my voice he would surely win the first prize.
6. On our final annual visit to my husband’s Radiation Oncologist, 3 years after completion of radiation treatments, the doctor wanted to look down Will’s throat. He first warmed the mirror so it would not fog up, then said, “Open wide and continue to breathe normally through your nose.” It was very probably an automatic statement to him since before becoming a Radiation Oncologist, he had been a Dentist, but we both had a very good laugh after we left his office!
Nancy & Will Crawford
5. A laryngectomee using esophageal speech was talking to a friend in a store, when a bystander, hearing her voice, commented, “My, you are hoarse.” She replied, “No, I have had my voice box removed and that’s how I talk now.” The bystander patted her sympathetically on the shoulder and said, “That’s all right, honey, it will grow back.”
4. “When I came home after surgery and my Great Grandson saw me talking with the artificial larynx, he got a block out of his toy box, stuck it against his neck and moved his mouth just like me.”
3. At work, some people can understand my Servox but many can’t, so I write. A friend, Sandy, was visiting with me in my office and I was writing since she could not understand me and the Servox. Anyway, I had just written my part of the conversation and she grabs the pencil and starts writing her part of the conversation. After a line or two, she stops and just bursts out laughing. I wrote, “I can hear.” She said, “But, I want to write too.”
2. My 2 1/2 year old granddaughter was a little frightened of me and my paraphernalia at first, but she soon came around. She will pick up the Servox, put it in her mouth ( I use the oral adapter) and begin jabbering. While she is holding the Servox in one hand, she has the other hand waving it back and forth. (I have always talked with my hands, even before surgery). A few weeks after I came home from the hospital, she picked up a Kleenex and held it to her neck and faked a cough. She will also get the tweezers and saline and say that she has to clean her neck.
1. My doctor is at a teaching hospital and from time to time there is a resident with the doctor and he does the check up along with him and, without fail, he puts the tongue depressor in and says ” say ahhh “!
If you have a laryngectomee related anecdote you’d like to have appear on this page, please email it to us – after all, laughter is often the best medicine!!