Kirklin Clinic Head & Neck Cancer Support Group
Articles from our 1996 newsletters
If you would like to be able to talk on the telephone and not have to hold the receiver, get a headset and hook it up to the telephone you wish to use. I have mine next to my computer, where I spend a lot of time and have a comfortable chair! I leave it hooked up all the time, so if someone else answers my telephone, they must answer at another instrument. They have these headsets at office suppliers but I found mine at Radio Shack for $50.
Another possibility is to use a speaker phone. Some people have great success with these, but, if you have not used one before, stay near and talk right “at” it for best sound. You will have better quality sound using the headset as there is an echo from the speaker.
You can get a flashlight with a built in battery, small enough to go in your pocket, and with a flat bottom, so that it will stand up. It also has a switch that does not have to be held to stay on. For those of us who use one hand for our speech aid, it is handy to have a light source that stands alone.
by Carolyn Capps Hayes, daughter of Elliot Capps
The doctor said, “There’s a cancer growing in your throat and we’ve got to remove your larynx. The process is called a laryngectomy.” My mind began flooding with all sorts of questions and fears, so many, I couldn’t even voice them. I sat stunned. Yes, I was thankful they felt they could remove the cancer, but thoughts came to me, he’ll never talk again; he’ll never sing again; how would we communicate?
I ‘had’ to be there when they wheeled him to the operating room because, even with his coarse voice, I wanted to cling to every word. I wanted to hold on to the past because I feared the future. I would never hear his voice again, the voice I have heard all my life.
Surgery was a success and he was going to be all right. I tried very hard lip reading those first few days because he was alive and we could ‘talk’. When he was given his Servox and the very first sound came out, I can’t describe my jubilation. My own name has never sounded so sweet. It reminded me of the first word my child said. I had prompted and waited for that first “Mama” and when it came, it was awesome!
Months later, we were introduced to a new idea - TEP. A short surgery later, a lot of hard trying, some set backs and Dad was able to speak again. A miracle? I think so! The future didn’t have to be dreaded. There was light at the end of the tunnel and voice at the end of surgery. Those of you who have had this surgery don’t realize how the people around you love to hear you ‘speak’. Through all of this, God has shown me the He is here and He has taught me that speaking doesn’t just come from the voice and listening doesn’t just come from our ears. It comes from our heart. Use your hearts to speak to us and encourage us to be better listeners. To me, your stoma is a medal of courage, perseverance, commitment, suffering and bravery. Wear it proudly! It’s a miraculous sign of life. Don’t be afraid to share your miracle with everyone you meet.
New Ways of Communicating
Carolyn’s story of hope and communication reminds us to try to help new laryngectomees in learning to communicate with their families. It is a two way street and often we are expected to call out from another room or speak to someone’s back. We’ve always done this, but things have changed. We need face to face conversation. Our expression, a nod of the head or pointing may help to get a message across. When people turn their ear toward us, thinking to hear better, they lose the natural lip reading ability that we all have. Early on, my favorite expression became, “Look at me!”. We have always communicated across the room with a nod of the head or a movement of the thumb in the direction of the door. Now, we need more of this personal sign language. In a crowded store or at a party, it helps us if our partner wears something bright, so that we can find them. Remember, we can’t call out as loudly as we used to.
Noise is a factor in our lives that needs to be controlled. We can no longer talk over televisions and radios, and we need to get in the habit of turning the volume down before we speak. The telephone presents special problems. Instead of immediately launching into what we wish to ask, we should start with a sentence that gives them a chance to realize that they need to pay special attention. At first, it is not out of line to ask, “Do you understand me?”, and later, you might just say, “I need to get some information about.....”, or “Would you be able to help me with....?” Speak slowly and distinctly. Once they get tuned in to your sound, you can be more natural.
Most of us tend to keep the buzzer going and it is much clearer to others if we phrase our sentences with breaks in the buzzing. Otherwise, we sound like a rambling paragraph without punctuation.
Please let me know of ideas you have that have made communicating easier. We will need to return to this subject.
Planning a kit for Travel
by Charles Lamar
I travel from Tuscaloosa to Birmingham at least once a week, to North Alabama once or twice a month in addition to camping out (in a motor home) once a month for 3 or 4 days at a time. During the Spring, Summer and Fall, I try to take several short vacations in addition to being a referee for 2 to 3 day National Rifle Association of America shooting matches.
Since my laryngectomy in August, 1993 and my TEP in July, 1994, I have learned there are a few items that are necessary to take along when I leave home. Basically, I carry the same kit, but increase the amounts for the longer trips.
On every trip, I carry a fanny pack, which contains the following necessities:
Microspore tape (to hold prosthesis strap in place)
Thank Goodness for Estee Lauder’s give-a-way kits. In the car, I have additional items
in another kit:
Saline solution or clean water
Syringe with pipette (for irrigation and flushing)
Complete TEP prosthesis kit
Extra batteries, flashlight
Extra battery, Servox
These kits are small and don’t take up a lot of space, but like Linus, I have my security blanket.
Flushing with Pipette
On a regular syringe, the post (that would hold a needle) is too large to fit into the prosthesis for flushing out.. Necessity being the mother of invention, I found that a pipette was the exact size needed. I cut about an inch off of the lower end of the pipette and put it in the syringe where the needle would normally go. It was a tight friction fit and has never come loose. The pipette fits the opening of the TEP prosthesis and when you plunge the water from the syringe, it goes through the pipette and clears the TEP. I do this first thing every morning and usually after every meal. The one syringe can still be used for irrigation. Charles Lamar
Other Ideas for Travel by Pat Sanders
First of all, I have not had the TEP yet, so the kit I carry all the time is very simple and most are things I might have carried with me before the laryngectomy:
In my car, I keep my spray bottle for humidifying. Since I keep clean water in this bottle, it can double as a source of water to sip and can also be used instead of the syringe for irrigation. A box of Kleenex with some cotton swabs and mints takes care of what I might need in the car, although I often leave home with a hot cup of coffee in a thermos cup. Heat seems to help more than anything when I cough.
In addition to the above, if going on vacation, I would want my battery charger for the Servox, extra scarves and stoma bibs, another stoma button and a small bottle of peroxide or vinegar for cleaning the buttons.
If any of you can think of other things you like to have with you, make a note so we can talk about this at the meeting. That’s how we learn from each other.
Tree Pollens Are Here
It would be nice to wave a magic wand to avoid the problems brought on by allergy season, but the best solution seems to be to stay out of it as much as possible. Wait for the day after a rain to work in the yard, wear your stoma bib to filter the air, and dampen it to catch even more of the pollens. Irrigate often. Remember, it doesn’t last forever!
As I See It By Philip Clemmons
"How glorious it is -- and also how painful -- to be an exception."
Alfred de Musset, French author (1810-1857).
June 21, 1996 will mark six years since my laryngectomy. In that six years I have tried to be an exception, I have tried to be exceptional, and I have tried to be non-exceptional. In all honesty, and in all respects, I have succeeded. It is apropos that I started writing this on while on a business trip to Washington DC, a trip that had nothing what so ever to do with the fact I am a laryngectomee. It is also apropos that I am finishing it after having been to Cancer Survivor's Breakfast, in conjunction with the American Cancer Society's Relay for Life Celebration.
Of the eighty to ninety people at the breakfast this morning, most were unremarkable in
appearance. There was one young lady with a hat covering her baldness, who is clearly going through chemo or radiation. There was another person with an apparent artificial leg. Other than those two, the only way to distinguish any as being cancer survivors were the tee shirts they had on. Oh yes, there was one person there with a visible hole in his neck, me. We can cover them up, I do when I wear a tie, and we all know people who wear turtle necks and dickeys, but even when we do that, it is a dead give away once we start to talk. My philosophy is, "if you can't hide it, you might as well flaunt it."
My preacher gave a sermon a few months ago on "Embracing your cross". The message was simply that we each have our own cross to bear, and we should embrace it; in that way we conquer it. I think this fits in well with my philosophy, we sure can't change what we've had, or where we've been. What we can do is control where we are going, how we're going to get there, and what path we're going to take.
I know of four methods of alaryngeal speech; esophageal, tracheo-esophageal, Cooper-Rand type wand (intra-mouth), and Servox type (held against the neck). There are strong advantages to each, and strong disadvantages to each. There have been plenty of times I have seriously thought of learning esophageal speech, and not putting up with all the inherent problems of a Blom-Singer device. The device will get a little phlegm in it - and no sound comes out. Just when you need it, the glue gives way, and dies. Even worse, the anxiety of trying to get the device back in, when the fistula is two sizes smaller than the device. It is even worse if you are in a hotel room in Germany, and have no idea of the German words for this, or if they even have words for it. These feelings usually last anywhere from 15 to 60 seconds. Then I think about the two men, about my age, who got cancer about the same time I did. One with prostate, and one with liver; both dead. I realize how lucky I am. I think about how well I can speak, when I work at it; and then re-glue, or clean out the phlegm, or try again to insert the device. The sun shines, the birds sing, and I can talk.
I know people, equally adept at one of the other three methods of alaryngeal speech, who probably go through the same thought processes; and quickly come back to the idea of how lucky they are.
My laryngectomy has transformed me from what was an ordinary person, even though I don't want to admit it, to someone who is not. All my adult life I have been a salesman and even though I now own and run the company, I still am a salesman. Every salesman wants to be remembered, wants to stand out from the crowd, wants to make a lasting impression. After all these years, I now do this. How ironic, and fitting, that I do this by talking, even though I should not be able to talk. In fact, it is somewhat of a modern day miracle that any of us are able to talk. Not long ago, my preacher told the story of Jesus healing the man who could not speak. I thought of how fortunate I was to experience this vivid reincarnation of that miracle on a daily basis.
I am finishing this essay after having been to the Relay for Life walkathon. I walked the
survivor lap with a hundred other people, most of us wearing tee shirts that proclaimed we were survivors. Most were women, we have a very active Bosom Buddies group here. There were a scattering of men. There was one young child in a wheel chair, the other's ages ranged to in the eighties. We shared one common bond, that of having fought cancer. For some of us, the battle has been won, fought long ago, for others, it has just begun. Some will win, some won't.
In one very vivid sense we (laryngectomees) are very lucky, especially me. One fight was short and sweet. The other, the way I live, goes on for ever. The bond we share, is the tee shirt that never comes off, the one always there on our neck.
"If you can’t hide it, you might as well flaunt it."
How Soon We Forget! By Pat Sanders
I was reminded by two different sources this week of some of the fears and problems of being a new laryngectomee. I visited a new ‘member of our club’ in the hospital to give a few hints on the use of the Servox and answer questions. Her daughter was asking about the coughing and I answered that we do cough up bloody mucous and yes, we do this for a long time getting gradually better in a two step forward, one back, pattern until it is not a problem anymore. I told her that irrigation still causes us to cough and is necessary to keep any mucous thinned and helps with pollens and other irritants. Later, we came back to this subject and she asked the question she had wanted to ask from the first, “Does it still hurt to cough?”, and I was able to give her the answer she needed to hear. I was not perceptive enough to hear that question at first because a year dulls the memory, not only of the coughing, but of the fear of coughing.
My second reminder was from an e-mail correspondent from England, who had his laryngectomy in December, and he was telling me how he built a shower protector for his stoma. In thinking back, I realized the process of nervously strapping on the shield before even stepping into the shower gave way to using it only when I was going to wash my hair. Then , it was left off entirely and the only time I gave it a thought is when I avoided getting soap into my stoma, which I did by cupping my hand over the area.
The pain, discomfort and awkwardness have faded and aren’t we lucky that it works that way!
The Importance of Attitude By Charles Lamar
Philip's article last month was an inspiration for me to write this for the newsletter. Philip said and I quote "If you've got it, flaunt it". How true. All of my life, I have been a person with a positive attitude, but I found myself having to deal with something I never thought that I would have, CANCER. December, 1992, I was diagnosed with cancer of the larynx. Later that month, I started radiation, which lasted for 33 treatments. After another biopsy in April, 1993, I was told that the cancer was no longer present. What a relief! I had retired and, now, my wife and I could get along with our retirement plans. This euphoria did not last. Just two months later, I felt that I had a lump in my throat and, this time, I decided to go to Birmingham for another biopsy. The result was "YES", the cancer had returned. The location on my vocal chords was such that no further radiation could be done and a laryngectomy was the only option. All of the explanations and talking to others did not really prepare me for what lay ahead.
The surgery was scheduled at University Hospital in early August. I remained there for a period of 5 days and then came home to Tuscaloosa. Having been in the field of Human Resources for all of my working life, communicating verbally was my forte. Now, this had been removed from me. In the future, all of my communications would be by writing or artificial means. This was a serious blow to my ego. To say that I was depressed would be a gross understatement. On rare occasions, I had been depressed but never to this extent. I had always been able to kick myself in the butt and get out of it, so I determined that I would have to do that one more time. The road back was not an easy one. Stumbling blocks appeared when I least expected them, but I was determined to keep moving forward.
Learning to talk with the Servox was a big problem. I felt that this would be one of the easy things that I had to overcome. Wrong! The first few days were terrible, but I made up my mind that if I was going to be able to communicate verbally, I had better get on the ball. I sat down in front of a mirror and tried the Servox in various places on my neck until I found the best spot. I like to call it the "sweet spot". Then, I practiced until I could put it there without having to think about where it was. I read the newspaper out loud, sang songs, went through the alphabet, counted to 100 and anything else I could do to improve the quality of my voice. This went on for weeks. I started talking on the telephone, and going out in public. I never really gave any thought to the fact that I might be treated in a different manner than I had always been treated and I wasn't. I did find that I could not communicate in a noisy situation or talk to a large group as I had done before, but normal conversation was no problem. There were some road blocks to my complete recovery. I developed a leak in my incision and had to get back on the feeding tube until that healed but that was about the only one.
I began to do all of the activities that I had done in the past. I still do volunteer work, I still work in my woodworking shop and I still go camping. Being a laryngectomee has not posed any limitations on what I do or want to do. I like to work in the area of "Quitting Smoking" and to talk to young people about the perils of smoking. I have found that children will stare and, when they do, I take advantage of the opportunity to talk to them about not starting smoking. If I am using the Servox, which I do on occasions, I let them talk with it. This is not often now, since in July, 1994, I had a TEP. I have found that this is a much better way to communicate verbally.
I have always tried to have a positive attitude about my cancer. I consider myself fortunate in that I have had excellent medical treatment and I fully expect that after 5 years I will be declared free of the "DRAGON". Yes, I'm different, and I'm proud of it. I take every opportunity to flaunt it. I know that a lot of people look at this as complete devastation and never completely recover. Do not let this get you down, do not withdraw from your daily activities. Take every opportunity to witness that you can survive the DRAGON and that life is good. Flaunt it.
PATIENCE, DETERMINATION AND WORK!!! By Pat Sanders
We would all like to be able to pick up a Servox and speak immediately, but, as with most things worth having, it doesn’t come easy. First, the swelling and the soreness has to lessen enough to use it properly. Then, we must find a good contact spot where the sound seems to be the best. Charles just told us of practicing in front of a mirror. I used a recorder and could not believe that I sounded so different from what I heard inside of my head. I had to learn to slow down, separate syllables, and pause at the end of a sentence. “T’s” in the middle of words need to be sounded, for instance, button sounds like bud-un unless you say it but-ton accenting the T and make it two sounds. One word, not pronounced carefully will often be picked up correctly by your listener because of the context in which you use it, but several words in the same sentence and your communication is lost.
You have to help people understand you. Get them to look at you so they can see you speak as well as hear. Don’t try to talk over loud noise. Signal for the other person to turn off the vacuum, or the radio, and don’t try to answer from the other room or even when you are looking away. Hand signals, holding up an object or pointing can help someone to understand you. Use every method of communication and, if you find something that works well, share it with us.
Have the Patience to learn. Have the Determination to keep trying and, then, Work at learning to speak clearly.
Fear Knocked at my Door by Carolyn Hayes
At our house, there lives a small, black, American Short Hair cat whose name is Tiffany. You know how some people think that pets are just animals and others think they’re part human? We think “Tiffer” is a member of our family, who just happens to be in a furry body. Well, at least three quarters of our family believes that!
The other day, we were doing yard work when, unexpectedly, two large dogs appeared. They were growling at Tiffer with hungry looking eyes and I screamed for her to run. She did run, bowed up, bristle tailed, straight at the mongrels, who were four times her size. I feared for her life because they could have torn her to shreds in one bite. Instead, they backed off, turned tail and ran from her!
“Fear knocked at my door, I opened, and no one was there.”
When we are faced with fears and doubts, isn’t it great if we can address those anxieties, as Tiffer did those dogs, with no fear? Fear can take control of our lives, if we let it. It can rob us of some of life’s greatest pleasures, if we let it. In our meetings, on the first Thursday of every month, you have told of your experiences of opening the door to fear, such as: taking your first shower, shaving your neck around your stoma, thoughts of choking, food you can’t swallow, medicine that won’t go down, effects of radiation, loss of appetite, cleaning your stoma, communicating, washing your hair, dust and dryness in the air, coughing in public and talking on the telephone.
Into each of our lives, fear comes knocking. By coming and sharing at our group meetings, I hope you are encouraged as much as I am, as we listen to others who have opened the door to fear and found no one there. (Philippians 4:13)
Defend your territory ! by Pat Sanders
Just as a cat will protect it’s territory and we must beware of a mother cat who thinks we might hurt her kittens, we as cancer patients and survivors must be just as diligent in protecting our territory by letting everyone know what bothers our breathing.
Our main territory is our home and we have the right to have clean air to breathe. You must not allow your mate, your children or your friends to smoke, or wear perfumes and shaving lotions in your home. Deodorizers, sprays or powders are hard on us. Hairspray is especially offensive (consider how it stiffens hair and imagine what it does to the tender tissues of your lungs). Turn exhaust fans on in the kitchen to take out strong cooking odors and smoke. Your car should be treated just like your home away from home.
Some people will think, because you don’t have an acute sense of smell, that it won’t bother you. You may not recognize the problem, but you will have a throat dryness or an elevated production of mucous as your body tries to adapt to breathing these pollutants. We have a good deal of that already as we deal with changes in air conditioning and humidity, and we don’t need more problems. Do the best you can to stay out of homes, cars and public places where smoking is allowed, and try to stay away from gasoline fumes or areas where you see cleaning chemicals being used. You’ll breathe better.
Be vigilant! Defend your territory!
Why foods don’t taste the same by Rick Rivenbark
At our recent throat cancer support group meeting, there was a discussion of the loss of or alteration in taste that everyone had experienced. While these changes were most profound in those with full laryngectomies, even those with partial laryngectomies or radiation/chemotherapy without surgery had noticed some difference. There are two reasons for this. The first is the big decrease in the sense of smell which happens to a person who breathes through a stoma. A major portion of what we experience as taste is actually a combination of taste and smell. When we are eating that freshly baked roll or sipping that morning coffee, our nose is busy inhaling the aroma just below it. Our "taste memory" includes that aroma as well. With no air coming in through the nose, there is a loss of the aroma component of that experience.
The second reason has to do with what happens to the taste buds on our tongues. Four different types of receptors, located in different parts of our tongues, provide the sensations of sweet, salty, sour, and bitter. The various combinations and strengths of these sensations make up the actual " taste" of things. When we have surgery, radiation, and/or chemotherapy in the head and neck area, our taste buds can be temporarily or permanently impaired or even destroyed. The damage may also affect some types of buds more than others, so that one person may not taste sweet as well while another may lose bitter sensations.
You’ll learn to season your food differently or to like different foods. Over a period of time, you either regain some of your lost taste sense or you adapt to more delicate tastes.
Happenings in Huntsville by Bob Barker
I share in the gratitude, as expressed by other contributors to this newsletter, to those people involved in my becoming a laryngectomee in the first place (in 1989) and then involved when I’ve come back to UAB for treatment, advice, good cheer, and the latest slant on the best way to go, TEP-ologically speaking. These helpful people include: Dr. Glenn Peters, speech pathologist Nancy Lewis, and all the other personnel who have been there at UAB to help me when I’ve dashed in from Huntsville with my latest dilemma. Both my wife, Valerie, and I feel very pleased with the treatment, the advice, and the whole procedure. I suppose this is the place where I should start to talk about my experiences, and give my opinions about some things that have happened to me in this adventure. I hope my experiences can help some other laryngectomees.
Valerie and I arrived in Huntsville from Southern California in 1988. I immediately started having allergy problems. I was diagnosed as having severe allergies to grasses and dust mites. I’ve had such allergy problems all my life but they were never as aggressive as these were. Also, I started having a flaming sore throat due to ‘you know what’. Eventually, Dr. Steven Smith, a local ear, nose, and throat doctor looked down my throat and said, “Uh-oh!”. He recommended that I proceed post-haste to his medical school classmate, Dr. Glenn Peters, at UAB for further evaluation. This I did; throat surgery was recommended, and was soon performed. I was then 61 years old. Dr. Peters said I would probably be in the hospital for about 12 days. I left after 6 days, and I didn’t really feel I was unduly pushing myself in doing so. Thanks be to God.
Following the operation I had the full X-Ray schedule of treatments on the left side of my neck due to the removal of 4 or 5 cancerous lymph glands on that side. In fact, following one of those X-Ray treatments in November, 1989, the infamous tornado blew through Huntsville, killing 19 people, about midway between the Huntsville Hospital, where I had my treatments, and my house. The radio station on my car radio said that it was only a severe storm (with no mention of tornadoes), so I had tried to, cautiously, unknowingly, drive right into the path of the tornado. I had to turn back due to un-movable traffic congestion and drive around the area where the tornado subsequently struck. We later learned of the disaster from the local TV stations.
At the time of my operation I had opted for esophageal speech rather than the TEP. I suppose this was because the few laryngectomees I had contacted in Huntsville before my operation used that method of speaking or else the Servox type of electronic larynx—nobody I had contacted had a TEP. I didn’t understand how difficult esophageal speech is. I didn’t realize the extensive practice required to become a really good esophageal speaker. The esophageal speakers I had contacted had been using this speaking method for many years. However, it probably was providential that I made that choice, because even though I now have a TEP, I have had to rely on esophageal speech several times in the past seven years.
I used the Cooper Rand electronic larynx at first, starting in the hospital in Birmingham. Soon after returning to Huntsville, I attended speech therapy sessions with Roberta Pierce, still an active speech therapist in Huntsville. This therapy was for developing esophageal speech, and lasted about six months. During this time, I used the Cooper Rand device at work, and practiced esophageal speech in the evenings. Roberta supplied me with books and copies of pages from books with words, phrases, and finally sentences to practice. When I finished the therapy I could speak with esophageal speech; as well as some, but not as well as others I’ve heard. During this time I made visits to Dr. Peter’s department at UAB, at first monthly and then less frequently. His preference for the TEP was made clear to me and was often enhanced, during my check-up visits, by having someone with a TEP demonstrate it for me. So I was impressed enough to eventually capitulate and request a TEP.
(The next article by Bob Barker will be about living with his TEP)
IAL Annual Meeting
by Vonda Bearden
wife of Robin Bearden
“The Lord works in mysterious ways!” and I truly believe that He led us to the International Association of Laryngectomees Convention in July. A few months ago, we received a notice of the meeting, which was to be in Hot Springs, Arkansas. We did not have the slightest thought of going, so I threw the notice in the wastebasket.
I had vacation coming in July and we had planned a camping trip to the mountains with our best friends, who live near Atlanta. However, we received word that their daughter was having back surgery and they would have to postpone our trip until August, when I would have another week of vacation. So we decided to use our current time to visit other friends, who live in Arkansas.
One of our first stops was the welcome center in Mississippi. We had started back to the van when we noticed a couple on the way in and the man had a trach. We stopped, introduced ourselves and found they were from Florida on their way to the IAL convention in Hot Springs. They urged us to attend and we were easily persuaded even though we had no reservations.
About noon, we arrived in the beautiful city of Hot Springs. The springs come from the mountains and the water is steaming and hot to the touch. Many tourists come there for the baths. The meetings were held in the Arlington Hotel in downtown Hot Springs, and, as we entered the lobbies and halls of the hotel, it seemed as if the whole world had turned into people with trachs and they were all talking at once. The noise was unbelievable with some using esophageal speech, some the electronic larynx (like the Servox), some with prostheses and there were many there with normal speech. We met nice, friendly, people from all over the United States , and there were many from other countries. We were disappointed that none we met were from Alabama.
Numerous booths were set up with everything imaginable in the way of supplies for the laryngectomee. One of the nicest persons we met there was Jo Beth, a sales representative for Inhealth in California. There was a special booth with donations to sell for the benefit of the American Cancer Society, and we left with a bag full, including lots of literature, samples and a video.
The meetings, banquets, tours and dances were to last 3 days, and we would have enjoyed staying the entire time, but our previous plans limited us to the one day, which was the highlight of our trip. The convention next year will probably be in Toronto. Who knows??? We might just try it again!
HOLIDAY PARTY MEMORIES FROM LAST YEAR by Pat Sanders
Last year at this time, I went to my first party after having had my two bouts with cancer and it was a mixed bag of emotions for me. I was warmly greeted by a number of people who commented how much I was missed at the previous year’s get together, when I had been in the process of starting a second round of radiation treatments. It had taken some courage to tackle a group this large of mixed friends and strangers and it didn’t help that a few people openly avoided me as soon as they saw my Servox and heard the buzz. Realizing that they probably thought they wouldn’t be able to understand me, I plowed ahead with my socializing, determined to be as much like my old self as possible.
This was a brunch with a marvelous buffet, and they had huge bowls of fruit salad, a wonderful egg casserole, sausages and ham, biscuits and gravy, jellies and jams, coffee cakes, and just for you Yankees, cheese grits! Carrying a very generous helping, I took a table for 6 that was just emptying, and, shortly thereafter, watched a group of 4 head for the same table and then stop. They whispered for a moment, glanced over again and turned to look for another place. They finally managed to fit themselves into a loveseat where they had plates balanced precariously and people constantly squeezing by. My table seemed to be banquet sized in it’s emptiness.
It was obvious that these people had an immediate withdrawal from contact with something they didn’t know how to deal with. For those who think I might be ultra sensitive, I watched it unfold and they were not the only people to avoid me. They were just the most awkward. It is unfortunate that some people cannot handle those of us who have had cancer, especially if we look sick or weak or handicapped in any way. There will be those who will be right there for us and those who always manage to avoid seeing because they are uncomfortable dealing with something new.
Those people don't know what they missed by avoiding my table and my company. We all know that we, cancer patients and caretakers, can be compassionate, interesting and informative. They will never know that, unless they eavesdropped on our table, later, when we had a lively, interesting conversation going about cancer, being single, getting married, moving South, computers and CompuServe. I was joined first by a nice man who told me that he had been explaining to 2 boys at the buffet why I talked the way I do, and I told him about people who think I am either deaf or slow. We were joined by two close friends of mine and then by a young woman, who had moved here from Minnesota, and her father, who was visiting. My hurt feelings disappeared along with the unshed tears that I had been fighting to control. We had an entertaining, fun, group, and it turned into a delightful evening.
A few weeks after that, I went to a different kind of party. It was held by the American Cancer Society and the Kirklin Clinic Head and Neck Cancer Support Group. There were over 20 of us and we brought family members of all ages.
No matter how well or how poorly we were able to communicate, we each got a turn to introduce ourselves and talk a little. Later, we had a round table talk, and, of course, I talked about communicating by computer and the information and compassion I had found on the Compuserve Cancer Forum. In fact, I talked so much, they teased me about running my battery down, and wanted to know if I had brought an extra and I immediately held up two fingers and got a laugh.
Of course, I have to tell you what we had on our buffet. There were finger sandwiches made with chicken salad, egg salad, ham on biscuits, little roll ups stuffed with something good. All delicious. We chatted and the family members talked to each other and to us with complete comfort. There was an atmosphere of love and caring in this group made up of men and women, black and white, young and old. A feeling of comfort, like when you come home.
COMMUNICATING - A NEW WAY by Charles Lamar
As many of you know, I have a personal computer and subscribe to Compuserve, an online service. Others in our Kirklin Support Group belong to America On Line, Prodigy or have direct access to the Internet through local providers. I chose Compuserve on the recommendation of Pat Sanders because she brought me copies of some of the messages from the extensive Cancer Forum in which patients, survivors, caregivers and medical personnel exchanged information. In the six months that I have been online with Compuserve and the forum, I have communicated with many “Dragon Fighters” from all areas of the western world and have gotten inspiration to continue my own fight against the Dragon. Cancer Forum members have selected various ways of relieving the stress caused by cancer touching their lives. The one with which I am most impressed is Humor.
HUMOR: Through the use of humor, they are able to relieve a little of the stress and concern caused by this disease. For example, there is a young woman, from Arizona, who has taken this approach. When she first became aware of something that her body was telling her, she was misdiagnosed by her physician. It was all of a year later before she found one who correctly diagnosed the problem and successful treatment was started. During her time of treatment, she used humor to alleviate her stress and concern and by doing so brought out more humor, which was lurking on the forum. From her messages, I have enjoyed much laughter which has provided many hours of necessary relief to me and others. Now that she is on the mend, she has been told by many that she cannot leave the forum. She would be sorely missed.
SHARING: Just being able to share your concerns and fears with others who have gone before or with those who are in the middle of their battle, certainly increases your resolve to win this fight. Most of those, with whom you share, are strangers, and you will not ever have a chance to meet in person, but each of us has a common bond--Cancer.
INFORMATION SEEKING: Many come to the Cancer Forum seeking information, and stay to participate in the humor and sharing and caring. Members have researched and shared many sources of information so that each of us can become more informed on various treatment methods, side effects and results, which allows us to participate to a much greater degree in our individual treatment programs. A great way to get answers to your own questions is to ask the people who have “Been There, Done That”.
SUPPORT: I am genuinely amazed at the support that members of this forum give to each other. This support comes in the form of written hugs, prayers and just plain, “I care what happens to you”. The messages come from all over the world and they may write just one line or several pages. They are, without doubt, sincere. As a participant in the Kirklin Support Group, you know just how much a word or hug means. I know I do.
To those, who do not have access to a computer, local support groups are vital and necessary to our well being, to our peace of mind and for witnessing to others that the fight with the “Dragon” can be won.
A Day I Love and Hate! by Scotty Chandler
There are just a few days of great significance in everyone's life when something is always happening. Three of the most important days in my life are September 25th 26th , and 27th,
especially Sept. 26th , 1995. It was on this date that a biopsy was performed by Dr. Robert Hurlbutt at Stringfellow Memorial Hospital in Anniston. When I woke up, my mother said that Dr. Hurlbutt had said things weren't looking too good in my throat and that I had an appointment the following day, September the 27th , which was my 49th birthday. I knew he wasn't going to tell me, “ Happy Birthday!” or that I was okay and give me a present. My oldest son Scott had just celebrated his 28th birthday, September the 25th, and we had planned to have one big birthday party the 27th but that was not to be the case. We went up to talk to Dr. Hurlbutt, who gave us the bad news I had least expected. Besides, all I had was a little hoarseness and a raw feeling in my throat! Well, it wasn't that simple! There seemed to be a severe problem with my larynx that would require another opinion of it's severity. When I asked, the words he said were not the patented answer of, "We will get you well, take two of these and call me in the morning.", They were something to the effect of "Scotty, we are trying to save your life, not just get you well.". Needless to say, that can sure blow a happy birthday to hell and back!
Here entered the picture, a week or so later, one Dr. Glenn Peters and he set up ‘another’ biopsy to be done in ‘another’ few days. Bad news again, something to the effect that Dr. Hurlbutt had been right on target, still with me in the frame of mind of Nah! This can't be happening to me! I agreed to go ahead and have the surgery, as described by Dr. Peters, as if I had any choice if I wanted to be able to hang around long enough to play with my first grandchild.
Well the operation was performed by Dr. Peters and his staff at UAB, a week or so later, with some DIVINE INTERVENTION, I'm sure. “Lo and Behold”, when I woke up from surgery, I couldn't talk. I was having a little trouble breathing and had tubes in almost every opening in my body! Nah! I'm just dreaming this! I'll wake up and all this nightmare will be over and I'll walk on out of here as fast as I can, run, if necessary!!! Then enters another character to my dream, a lady named Nancy something or other, who really made me mad, but I couldn't talk back. Boy, was that a spot to be put in. A woman I didn't even know telling me what to do and expecting me to talk with something called a Servox. And to top it off, Dr. Peters was just standing by letting her do it. I decided right then and there that I was just going to show her that I could do it. I did it too! I don't know if everyone in the room knew what I said, but I sure did think I said it good and clear. Wouldn’t you like to know what I said? I won't say!
Today, I send thanks to Dr.Hurlbutt for finding the problem, and, most of all, to Dr. Peters and his staff for their hard work, knowledge, understanding and for "saving my life". Most recently, I had the TEP operation to give me back a fairly natural voice. Yes, Nancy Lewis, if it hadn't been for you making me mad when I was feeling so bad and about to bust a gut trying to talk back, and putting up with teaching me how to talk better or at least communicate better, I might have just given up.
Of course, all my friends and relatives have stuck by me and listened to my garbled voice when I get in a hurry. Thank you all for life and friendship and the privilege of celebrating my oldest son's 29th birthday on September 25th, for the anniversary date of finding the problem on the 26th and the 27th, 1996, when I celebrated my 50th birthday!! Oh yes, and the TWO grandchildren I now have! And to the one who has been by my side almost 24 hours a day since it all began, my mom and her prayers. I Love you Mom!
TEP-ology by Bob Barker
I’ve been speaking with a speech prosthesis in my TEP for about 4 years. In the early days, I would pull off the hands-free housing every evening, clean the old adhesive and replace the prosthesis every morning before reattaching the housing. Now, I do the housing removal and clean up every evening, but only replace the prosthesis every week or two. I use a syringe to irrigate the prosthesis when it gets plugged or when my voice goes from base to tenor due to partial obstruction.
I’ve had some problems. It’s during these times that I resort to esophageal speech. Sometimes my esophageal speech is okay but, to make it work, I have to remain calm and concentrate more than I do with TEP speech. Also, it takes far more physical effort, at least for me. Leakage of liquids through and around the outside of the prosthesis was an increasing problem until Dr. Peters removed scar tissue at the entrance to the puncture. This scar tissue seemed to have accumulated following episodes when the flesh around my TEP became inflamed during a head cold, flu or allergy attack Sometimes the back of the TEP would close up and Nancy would tell me to put in the stint or puncture dilator, and come down to UAB or wait until I got better.
In coping with leakage of liquids, I’ve tried changing prosthesis lengths many, many, times. I try to use as long a prosthesis as I can. As an engineer, from first principles, it would seem to be better to have a longer prosthesis. However, I have stopped or reduced leakage many times by going to a shorter prosthesis. The shorter one tends to fit tighter axially and I think that’s how it reduces leakage. I personally use lengths from 2.2 cm down to 1.4 cm. I’ve thought of going to the larger diameter prosthesis: 20 French instead of 16 French and using the gel cap method of insertion. Nancy Lewis put one in for me just once and then I promptly developed an inflamed TEP, so it had to come out.
Let me say a few words about phlegm. I apparently have more problems with this than most laryngectomees because of my tendency toward allergies and sinus problems. I use a substantial but fashionable (thanks to my wife) bib at all times, even at night, to catch the phlegm. I’ve tried using the foam rubber filters that go on the front of the tracheostoma valve but without much change in the amount of phlegm. From time to time, I have cautiously tried using mild antihistamines. They are somewhat effective, but I’ve been cautioned to be careful about using them. I was on a business conference/vacation trip to California last summer, where the climate is considerably drier than in Alabama and had a terrible time with phlegm. It turned into bronchitis, which was treated by a local doctor. This summer, I returned to California for another trip. The severe phlegm problem started again. I had some Benadryl with me, so I took the maximum recommended on the package and got through okay without having to find a local doctor. On returning to Huntsville, the problem subsided and things are back to normal.
Remember, the best place to get advice is from the professionals: the qualified doctors, nurses, and speech pathologists. Thanks for your attention, and the best of good health and good fortune to you all.
Start Now on Legal Planning by Charles Lamar
Several years ago, my family had an aunt who lived to an advanced age. In her last few years, she was confined to a Nursing Home and was unable to take care of her affairs. My cousin and I were executors of her estate. Fortunately for me, my cousin lived nearby and he was the one who had to go to court to become her legal guardian so a family member could look after her affairs. My aunt was one who dotted all of the “I’s” and crossed all of the “T’s” but failed to do one legal step that would have prevented the Court for getting into "her business". She failed to complete a Durable Power of Attorney. Once a year, my cousin had to go to the Court, with all of the financial information and justify to them that what he had done was in the best interest of our aunt. As a side result, we had to pay the Court a small fee for each check written. After this experience and after we completed the disposal of her estate, I became aware that I had not done a very good job in protecting my family against having this same thing happen, should I or my wife become incapacitated.
I was fortunate in that I worked with an attorney who pointed me in the right direction and offered the following advice:
l. We should update our wills at least every five (5) years. (Now, we do this regularly.)
2. We should draft Living Wills, should such be our desire, and review on a regular basis to make sure that they comply with present law. (We have done this and have given our daughter and our physicians copies. In fact, we had reduced copies made and attached them to our drivers licenses.)
3. We should have Durable Powers of Attorney. This is different from a regular Power of Attorney in that they do not come into use unless and until the person becomes unable to look after their affairs and such is certified by their physician. Some may require two physicians to make such certification. (This, we have done. The other day it dawned on us that while we had taken care of each other should one of us become incapacitated, we had not named someone to make the necessary decisions should something happen to both of us at the same time. We have corrected this situation by naming our daughter.)
4. Take care of access to Bank Accounts and Safety Deposit Boxes. (We have our daughter as one of the signers on both bank accounts and safety deposit boxes so should something happen to us at the same time she will have access to these without having to go to Court as Executor of our wills.
5. Make a List of all assets, Savings Accounts, IRA's, Stocks, etc. This information needs to be continually updated and the executor needs to have this list along with the name and address of the accountant most familiar with your financial and tax information.
6. The name and address of the attorney who will assist the executor of the estate.
These are some of the basic issues which my wife and I have taken to insure that our daughter, who is our only child, will have minimal trouble administrating our estate. My best advice is that you are never too young to get this done and the time to do it is now. This is not intended to be all inclusive but just to offer some ideas of the things that my wife and I have done, based on the experience we had with my aunt.
By the way, sometimes we tend to forget our parents. As we tried to get our affairs in order, we insisted that our mothers, both widows, execute the Durable Power of Attorney and since both are now 93 years old, my wife has had to execute the one on her mother, an Alzheimer victim, and my sister has had to execute the one on our mother, who is no longer capable of making her own decisions.
Only you and your family members can make these decisions and you are encouraged to discuss these options and consult your attorney.
Helpful Hints for Laryngectomees
· Try paper towels instead of tissues, which, when damp, fall apart and you can breathe bits into your trachea. Carry a roll of the select-a-size paper towels in the car with you. They peel off about a 6” paper towel, which when torn in half is a perfect size for cleaning around your stoma, and it doesn’t disintegrate.
· Get a good magnifying mirror and light. Some of the makeup mirrors will do well. I found an electric light with a snake stand (at Wal-Mart or K-Mart, $10), so that it can be tilted easily in any direction, and combined that with a magnifying mirror propped up at the right level so that I can see in and around my stoma.
· You might like to change your regular shower head for a Shower Massage, hand held type. Especially, when you are a new laryngectomee and nervous about showering, you can use it as a hand held sprayer and avoid your stoma area.
· Winter is coming and it is time to remind everyone that we need a humid atmosphere. Put the humidifier by your bed so you breathe the proper humidity while you sleep. For daytime use, fill a spray bottle with water and mist your stoma bib so it is always damp. Carry that bottle with you in the car. You can even irrigate with the spray, or, if you get a coughing spell, you have a water source to sip. Just fill the bottle with clean tap water every day, and keep it beside you. When the heat is on often, due to colder weather, the humidifier needs help, so use the spray bottle at night, also.
· There are small foam pads, that sell in packs of 100, with adhesive at one end that can be used for filtering and humidifying. They attach easily to the inside of clothing or stoma bibs.
· Call for a catalog to order supplies. Suggestions for other suppliers will be appreciated. In-Health @ 1-800-477-5969 or Bivona @ 1-800-348-6064
· If you have a TEP, pipettes can be used to easily squirt a small amount of water through the prosthesis (the water goes into your esophagus and on down to your stomach). This cleans the opening and helps to keep it from blocking up with food or mucous. You can install the end piece of a pipette on the end of a syringe and use more water and a more forceful flow. (See Headlines, May, 1996)
· Also, for TEPers, even though the stoma and trachea are not sterile areas, if you are using your thumb or finger to close your stoma to talk, there will come a time when your hands are not clean and you are not near a place to wash them. You need to have a packaged moist towelette (gasoline stations usually have them to use after you pump your own gas) or you can buy dispenser packages of these (there are choices of packaging and types at the grocery or discount store). Otherwise, remember the handy spray bottle of water that you should take everywhere with you? Spray your hands and wipe on paper towels. Don’t take the chance of touching your stoma with anything that might irritate your skin or your breathing.
· We will feature Hints regularly, so tell me what you do that could help all of us!
in B’ham: Pat Sanders, 205-995-8822; 205-995-2399 FAX ; firstname.lastname@example.org
in Tuscaloosa: Charles Lamar, 205-758-1178; 205-752-7577 FAX; email@example.com
Kirklin Clinic Otolaryngology : 205-801-8460 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. firstname.lastname@example.org.
Nancy Lewis, Speech Pathologist email@example.com
American Cancer Society in Birmingham: 205-870-7436 FAX
Lori Langner, 205-877-4065
Nancy Price, 205-877-4077; firstname.lastname@example.org
Kirklin Support Group e-mail addresses:
Scotty Chandler email@example.com
Philip Clemmons firstname.lastname@example.org
Charles Lamar email@example.com
Andrew McDonough firstname.lastname@example.org
Rick Rivenbark email@example.com
Pat Sanders firstname.lastname@example.org or email@example.com
LaVerne Shannon firstname.lastname@example.org
James Thomas email@example.com
If you have e-mail and would like to be included, please send your address.
INTERNET SITE FOR LARYNGECTOMEES
http://members.aol.com/FantumTwo/Cancer1.htm is a site where they are listing e-mail addresses for laryngectomees so that we may exchange messages, ideas and support via e-mail. Great resource for us.
LISTSERV FOR LARYNX CANCER
Here is what you do to join the listserv: Send e-mail to: firstname.lastname@example.org. All you put in the message part is: Subscribe LARYNX-C and your name. Follow instructions as they come back to you.
HeadLines on the Internet
You can now find our HeadLines at two sites on the Internet:
National Association Laryngectomee Clubs of the United Kingdom