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SAYING GOODBYE
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Cruising Laryngectomees on the LooseBy Marona Hewitt
So you have a surgery that "shows." So you have a different way of talking, breathing and maybe even eating, and you are kind of sensitive about being around strangers. So you don't want to eat at a table with them and have them stare at you or worse, look away when you talk. So it takes you longer to eat and sometimes you cough and have to leave the table. These are the reasons given by laryngectomees who stay at home instead of going on vacations.
That doesn't mean you can't have fun with others. There are a bunch of laryngectomees that go on a cruise together each year and they don't let their surgery that "shows", slow them down. They eat together; hang out together, and even party hardy together. How do I know? I go with them. They are the best bunch of travelers I know. You've finished your treatments, the surgery is over, and your doctor says go on, get out of here and live your life. The doctor is right. You need some new places to go where you haven't been before and the best way to do it is from a cruise ship. You get to the ship, unpack once, and your room, bed, and medical supplies go right with you from port to port. Tired? Go to your cabin and crash or sit in a deck chair and watch the world go by. Your traveling companions understand because they all talk, breathe, eat and have been where you are. No hassles, no embarrassment, no explaining, no stares, and lots of fun people that are your new friends. What more could you ask for? Well, there is the food! Choices like you have never seen, everything from soups, salads, vegetables, meats and if you need soft foods, they are there, even special diets. Then there are the desserts. Oh, my! All you can eat, plenty to do and see and be with people you know every night around the dinner table. On shipboard, there is food available so often that you can just eat a little each time. Coffee and tea, anytime. Not quite strong enough to keep going all day? Then, have your breakfast, lunch or dinner delivered to your room or go to the buffet and have a bowl of soup. I know just the place to send you to find out about this group. Go to WebWhispers.org and click on Activities and follow to WW Cruises to the current year or the next year to see what, where, and when the cruise is going. See what ports you will be visiting. Then look at the list of cruisers. The cruise for 2008 involves over 80 people! When this article is published, we will be at sea! "Wow, how can you afford to do it?" so many people ask me. Look for me at the WebWhispers cocktail party. I'm the blonde, overweight gal on the arm of an older baldheaded man. He looks a little like Dick Cheney. We'll be with a lary or two laughing and having a ball! See ya there next year!
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The Perpetual Patient
This is the nickname I use to describe those who buy into the idea that a laryngectomy is the end of life, and there is no light at the end of the tunnel. We all face some scary decisions that take courage. I love the title, “Feel the Fear, and Do it Anyway”, by Susan Jeffers, Ph.D. It often comes to mind when I recognize that I am fearful of a new experience. I don’t like the feeling of being afraid of anything. My usual behavior is to research so my action will be a calculated risk. Being the practical person that I am…most of the time, it was important for me to have a time frame for my recovery from laryngectomy, radiation and speech therapy. I was given an estimated length of stay in the hospital. When I was told it would take several weeks to get in the daily radiation sessions, I made it clear that we would have to be finished no later than December 23rd. I explained that I had planned a two week trip to Florida for all eight of my family and rented a beach house as part of the arrangements. We were leaving Dec. 26th. My speech pathologist was happy that I was taking time off to heal and relax so she and I could resume my esophageal speech training by the end of January. The biggie that registered for me, as I’m certain it does for so many, is “if you survive 5 yrs., you’ll be out of the woods”. As so many of us are, I was grateful to be able to check off the years. At first it was 6 month check-ups, since I lived 500 miles east of Mayo Clinic. Gradually we were able to go to an annual check up. It was a great day when I could tell my beloved ENT that the next time I saw him at Mayo Clinic, we would say hello in the hallway. I had officially graduated from the “patient” status in his mind and mine. I know just how lucky I am that I could be so forthright about it with him. I told him, “Our next conversation will be in the hallway…at no charge.” He understood, and had a good laugh about it. He had come to know me well, and understood that I made it my business to seek my own path to total rehabilitation. They were many professionals and seasoned laryngectomees along the way to help guide me as I made my choices. I considered and rejected the shower collar and TEP in 1979. The stoma “bibs” were left on the table. All interesting information, but nothing I would buy or wear. It was important to me that I find a way to dress so I looked like everybody else in the general public. I had been buying and selecting my own clothes since I was 10 years old, and a model since age 13. This was a fun project for me, not rocket science. Over the counter jewelry that would cover my stoma was my mission. At first I used the crocheted stoma covers my club members’ wives made for me. I wore them under a silk scarf to prevent staining the scarf. As the weather grew warmer the scarves had to go. As I looked through the magazines and catalogs at the Spring/Summer fashions (open neck tops and bathing suits) I had to find something cooler to wear around my neck and over my stoma. I was always on the lookout for just the right thing. I found inexpensive smaller sized things at the Junior Miss counters in my favorite department store. At other times I found goodies that weren’t quite so inexpensive. The trick was to find things that were interchangeable. While visiting my son in Oregon in 1983 I found a springy ¼” sterling silver collar that is open in the back. It had a lovely silver leaf that appeared to fold over it…right where it needed to be…in the middle. The leaf also slipped off so I could use the collar with other pieces of jewelry on it. There were even matching clip earrings. (No, I haven’t pierced my ears yet, and probably won’t at my age. I’ve had enough piercing with the stoma for this lifetime.) This narrow silver collar became the mainstay of my jewelry collection. Once I figured out that the shell I bought in Florida in 1986 would accommodate the end of the collar through the back, I now had a perfect stoma cover. It fits nicely in the open neck of my blouse. It works with my bathing suits. My fashion dilemma was over for everyday wear. It has become my signature piece. I discovered some other benefits about this shell. It is natural material, and the contours in the back where half of it was sliced off serve to collect condensation as I breathe. So now I had a cover that distracted the eye as a piece of jewelry, and a stoma cover that provided moisture. It is easy to wash and dry. Believe it or not I still receive compliments about my necklace every time I go out in public wearing it - grocery stores, airports, and most recently at the library while getting my taxes done by the AARP Tax Team. Now that you have a better idea of how I approached my journey through rehabilitation you will have a better idea of why I am concerned about “The Perpetual Patient” attitude. I have observed some interesting behavior over the past three decades. Since the advent of the TEP, we frequently hear, “Following laryngectomy the prosthesis is inserted and off you go back to your old life.” It hasn’t worked that way for everyone, as we often witness or read about. Every Medical School and Medical Center has their own protocol. Add to that, every one of us is different. The only thing we may have in common is laryngectomy surgery, and even that doesn’t hold true for all of our readers. What concerns me as a long time participant and observer of laryngectomee rehabilitation is the current lack of pre-op counseling. I also find troubling the send off some patients are given as they prepare for discharge from the hospital. They are set up with suction machines and other equipment that is rented or purchased by Medicare or private insurance. Some probably do need this equipment since hospital stays have been reduced due to insurance coverage. What I take issue with is the sort of mindless preprinted discharge orders. When I was teaching alaryngeal speech at a busy Medical Center, I discovered that the Social Worker assumed that the laryngectomy patients would all need to take this array of stuff home since they used it at the hospital for the first few days. He had worked up a list that was an “automatic order”. I wondered if he had been buttonholed by a salesperson. Later at Club meetings I listened to members talk about how their equipment was in the closet unused, or they were getting a rental bill every month. Often this equipment was donated and tagged “unused”. It was news to the newest members that most of us never used any of the stuff. The other disturbing attitude I came across was from an ENT who was the guest speaker at one of the S. CA Clubs. He made the statement that he hopes his patients will remain “lifetime patients”. Message conveyed. There was no milestone like “5 yrs…and you’re out of here”. Some of the members of this club assumed that as laryngectomees their ENT was now their primary physician. Not so. Another ENT in Michigan was so concerned about his patient he used a very large safety pin to attach an orange Emergency card to the lapel of this woman’s full length fur coat. I met her while having lunch with her club. When I saw the rather dog-eared orange card and huge safety pin on her lovely coat, I asked her why she had it pinned in such an obvious spot. Perhaps she had a serious health problem? She explained to me what a favor the doctor had done for her with this “gift”. She kept it there all winter “because people in line always let me go ahead of them, and folks treat me like a queen everywhere I go, when they see this.” We are all on a very personal journey. Each and every one of us is seeking our own way. Our attitude, our ability to set realistic goals, and courage to try new things will make a difference as we move along toward wellness. Sometimes it is tough to figure out if we as helpers are enabling or care-giving. It is a question worth examining. We’ve read and heard many times in recent years, “It takes a village”. This is true for us as healthcare professionals, family and friends, and support group members. What we do and how we do it matters a great deal. Elizabeth FinchemTucson, AZ |
Talking of Which Reminds Me…Spring Fever Ramblings withRosalie Macrae
Happiness is definitely cylinder-shaped, I said to myself this morning, after opening up my EL parcel and asking Ernie the postman how I sounded now. He said I sounded much nicer. Not so bad-tempered as his wife first thing, either. I told him to hang on a minute. I, too, would be a virago, fetching his breakfast at dawn, as she does. Talking tempers, up there in Inverness, dear cousin Deirdre, don't be so childish about the shape of cylinders.Deirdre has always considered me a Person with Motives since stealing her boyfriend; we were nine.She pounces on my articles to criticize.An academic with a dirty mind. Nothing worse. You should hear her filthy Latin songs starting, “O divina Clementina”...No, you weren't referring to Winston Churchill and how he loved his cylinders of Romeo y Julieta Havana cigars. Change the subject or you will be insinuating that pure little Julieta liked things cylinder-shaped too. It is Saint Waudru's Day.She was a very virtuous Belgium virgin lady and they cart her effigy around in a gold chariot today just 25 grey water miles away. So let us be correct in her honour. But while talking cigars, I must just mention an old colleague, Graham Dark, who found himself after a great mistaken identity saga, as a guest at a dinner party with Churchill. The great man handed him a cigar. Graham, a'quiver with awe, smoked it down to the last crumbly bits and then made the mistake of going home and telling his father. It wasn't that Graham's father was an anti-smoking zealot. In the Sixties there were few around. It was that his perishing son hadn't had the perspicacity--as Dickens would have made Mr. Pickwick say--to accept the cigar and then discreetly stow it away in his back pocket to be handed down to decades of Darks for posterity; or as a safety cash cache for any financial disasters. Christies, the auctioneers, would have had a field day. Churchill's DNA on his cigar; and the Darks did have financial disasters. Gee-gees I heard. Right. My cylindrical sonic delight arrived in a box, tightly packed with polystyrene white puffs. At first I thought it was more free carbon footprint light bulbs.I have a cupboard full, and tossed the polystyrene outside to be swept up later. But no.I should have guessed it would be more exciting, borne by Ernie, frost or no frost, wearing his summer shorts for the first time this year. A good omen. My two best Servoxes were there in the cardboard cylinder all tuned up and sweet. No throbbing rasps or leaps from major to minor. Just as good as an EL can sound. They had been serviced by a technical genius called John Tope at his warehouse in a small industrial estate tucked away at the back of Wetherby. It is a bustling, quaint place up in Yorkshire, famous for its Sunday roast dinners. As clambakes are to New England in America, so melting roast beef and Yorkshire puddings, crispy outside and gooey in the middle, are the traditional fare in places like Wetherby. They rise up in the roasting dish-- these batter puddings from the delectable drippings. They inspire people like the organist Malcolm Galloway to conduct the local Elysian Singers after a good lunch; they help mould perfectionists like John Tope, a Spencer Tracy kind of Yorkshireman. He tuned my Servoxes in to my voice on the telephone, twiddled, spoke in to let me hear that they sounded more feminine than before, listened again, and gave a no-nonsense Yorkshire, “Aye, lass”, when I said that I would settle for that. The Katherine Hepburn-ish---very ish!--huskiness would be just fine. As Mr. Tracey would have agreed. I rang up friends and did a quick poll to see what they thought of the vastlyimproved quality. Then I rang up John and he declared himself well pleased. As did Jim Lauder, our Texan specialist, another sound perfectionist.And, it has to be said, an avid Yorkshire pudding lover. When he visits Wetherby, he says he can't wait for his Yorkshire puddings."With beef Wellington and washed down with a couple of pints of Yorkshire bitter," said Jim nostalgically on the telephone. Writing about this scrummy fare had made me nostalgic too, and I remembered that this was the day my butcher sold cartons of dripping, after roasting massive joints for his cold meats’ counter. As a new lary, their juices mixed with water had helped restore my pathetic appetite, little by little. Packed with life-restoring vitamins, I bought three tubs to deliver to my sons, a tiny recompense for back then. I was having a chewing-the cud-chat with the butcher as a soldier standing at the counter was looking at my EL, with a sort of professional air. He said he had just come back home from Iraq--I live in a garrison town--and he had helped with a tracheotomy when he was out there.A shell had hit a local lad in the throat. “Brave little chap.” said the soldier medic, “But, he'll never get one of those. No funds”. He motioned to my EL. That will be top of the agenda at our next meeting. They send old reading glasses to war-savaged faraway places. Imagine sending voices; people being able to communicate with their families again. It is too exciting to contemplate. Please God, win me the lottery, and let me be there for the handover! On my UK website, Laryngectomy Life, we are all boosting the morale of a 24-year-old lad called Steve, who, as you read this, will have had his laryngectomy operation. One of the most uplifting letters to him was from a lary postman, not my Ernie, but Graham. He wrote, "I praise the EL.I love my Servox, and people can't understand why I could not go back to a normal voice. This is me, has been for nearly eight years, and I am in a happy place; so happy it has been for nearly all of that time..." I wouldn't go as far as that, I have to say. I would give away my Servoxes to Iraq any day to be Maria Callas singing Madame Butterfly at the Met. Vive la difference though, Graham!
Footnote: The thrushes and doves and sparrows had a great swoop down while I was at the butchers and cleared away all the polysterene puffs. Come to think of it they are cylindrical too. The fine Corbusier nests will be the talk of the treetops. |
Voices Restored – One Country at a Time~ Jack Henslee – jhenslee@comcast.net
In March-April of 2008 I returned to one of my favorite places in the world…Costa Rica. This was my third trip, and this time I was able to accomplish what I failed to do on my last visit – make contact with the Costa Rica Association of Laryngectomees and attend one of their meetings. When I made my last trip in 2005 I had tried for 2 months to just find a laryngectomee so I could learn whatever I could about life as a laryngectomee in Costa Rica. I wanted to see if I could somehow facilitate some type of support if needed. That effort was in vain, but thanks to their joining the IAL in 2006 I finally had a contact. I was graciously met at the airport by Senior Marcos Zalazar and his lovely daughter. She did the translations for us since neither of us is anywhere near fluent in the other’s language. Marcos safely delivered me to my hotel and then picked me up the next morning and took me to the Calderon Guardia Hospital in San Jose for his club’s meeting, which culminated in their adoption of new bylaws and the election of new officers. Marcos was elected as Vice President.
There were approximately 17 people present at the meeting, nine of which were laryngectomees. Also in attendance were Dr. Mario Zuniga, an otolaryngologist, and Dr. Ana Villalobos, a MD who has also studied speech pathology in Italy for 3 years. Dr. Villalobos volunteers her time to the group to assist with rehabilitation. During the course of the meeting we were also joined by the hospital director who welcomed me and gave an overview of the hospital and all of its ongoing projects. Unfortunately, none of them were specific to laryngectomee rehab. This trip was more than just a casual visit on my part. Thanks to the generosity and support of the California Association of Laryngectomees, Griffin Labs, Lauder Enterprises, Luminaud Inc, and my local club “Look Who’s Talking,” I was able to donate six artificial larynges (ALs), many stoma covers, foam filter covers, and various educational materials to include Spanish instructional tapes for esophageal speech (ES), written speech instructions in Spanish, DVD instructions for the use of ALs, and numerous other items and contact info for various things such as WebWhispers. Their response was overwhelming and quite touching. They had never seen foam stoma covers. One lady immediately started drawing patterns of the cloth stoma covers, and the ALs were like a miracle. Out of the nine laryngectomees present only one used an AL – a Servox that he had bought himself. Three of them used esophageal speech and the other five had no speech. One had been without speech for over 11 years. The unfortunate truth is that while medical care is free in Costa Rica, rehabilitation is another matter. They do not pay for ALs, they do not pay for speech therapy, they will pay for a TEP but the maintenance and prosthesis are the responsibility of the patient. As explained to me they wouldn’t mind paying for an AL, but the total life cycle cost of purchase, training, maintenance, and replacement is considered beyond their capability. While the data isn’t absolute I was told that there are only about 50 “known” laryngectomees in Costa Rica and unless they learned ES, or could afford another alternative, they never spoke again. I estimate that there are probably about 25-30 laryngectomees currently there that may never speak again simply because of financial reasons and a lack of advocacy. After all, any group of 50 is pretty small to be overly concerned about when the country has other problems, but when the 50 are for the most part voiceless their chances of changing the status quo are slim at best. It has always bothered me to see a laryngectomee with all his/her articulators in good working order not be able to speak, but to walk into a room where five of them can’t speak should be unacceptable. I believe that it is possible to obtain 25-30 donated (used) ALs and the necessary volunteers to teach them how to use this special gift. That is a mission I want to pursue. For probably less than half of what the IAL spent on the last Voice Institute we could probably give VOICE to an entire country. We could make a magnificent and timeless contribution that could lead to major life style changes in one small country and could pour out onto others. To me this is most worthwhile, and if you would like to join me and others to restore voice to the voiceless, then lets start here…one small country at a time. |
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Welcome To Our New Members: |
I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.
Thanks and best wishes to all, |
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VP Internet Activities |
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WebWhispers, Inc. |
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We welcome the 22 new members who joined us during April 2008: |
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Michael W. Booth |
Laura E. Chandler - (SLP) |
Chris M. Drewry, Sr. |
Kurt Englert |
Therese Hamtil - (SLP) |
Donald G. Holmes Sr. |
Jeanette Holmes-(Caregiver) |
Helen Huchins |
Jack Jkac |
Terence McDermott |
Peggy Morgan |
Sarah D. Perez - (Vendor) |
Charles L. Pickett |
Laurentiu Popa |
Denise Squires |
Dan Stare |
Heather Starmer - (SLP) |
Timothy Stone |
Tim Sullivan |
Donald R. Turnley |
Toni Turnley - (Caregiver) |
Larry R. Worcester |
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WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
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Disclaimer:The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff. |
As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club |
© 2008 WebWhispersReprinting/Copying Instructions can be found on our WotW/Journal Index. |