April 2010

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Olden Days News & Events
VoicePoints Heather Starmer MA CCC-SLP Organ  Preservation Effects Education-Med
Between Friends Donna McGary A Taste Of Cabo Commentary
Practically Speaking Elizabeth Finchem Esophageal Speech Support Education
My Neck Of The Woods Elspeth Thomson OMG Experience
The Speechless Poet Len Hynds A Lifetime Of Service Poetry
Tibits Of Interest Pat Sanders Massage & Stretching Information
P. S. Terry Duga One Size Does Not Fit All Commentary
New Members Listing Welcome News & Events

 

 

 

 

Olden Days?

 

Remember all of the stories that surrounded us as we grew up listening to our parents or grandparents. They told us that walking a block to catch a school bus was nothing compared to the two miles they had to walk.... in the snow, of course.

Sometimes, I feel we laryngectomees do that with our stories of how we learned to talk, clean stomas, make our own stoma covers. Typical of the way we "lived" is the 1996 issues of HeadLines which opened with some simple hints for humidity:

Humidify-----------Humidify-----------Humidify-----------Humidify

· Many of our winter time problems are caused by a lack of humidity, so be sure to have a humidifier by your bed. Breathing the moist air can relieve mucus and cough.
· A small atomizer filled with clean water can be used to spray on your stoma cover when you are in an area where you can’t control the humidity, such as in your automobile or in a room where you don’t have a humidifier.
· Wear your stoma bib. It helps to catch and hold moisture as you breathe. If you are raking leaves, woodworking , vacuuming or anything that raises dust, dampen your bib so it will clean the air for you.
· You may purchase foam filters for use with or without appliances. There is a new one for in-dwelling that you can change once a day. One of our members says he has hardly coughed since he began using it. (note, this was the HME)
· Drink lots of water

 


 

AND, before the suppliers were offering flushers for sale:
Flushing with Pipette by Charles Lamar

On a regular syringe, the post (the part 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 connected it to 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



 

Present Days

 

It is wonderful when doctors and SLPs put people on products that will likely help them but I have received correspondence from new larys who are astounded at the cost of the special prosthesis which has to be installed by an SLP. They say they have had leaks and no idea of what to do other than go back and get it replaced. There are still patient changeable prostheses and there are methods of cleaning that may help this.

I hear from people who won't wear prostheses, who say, it costs us $300 a month for supplies and have been told they MUST wear an HME. It was convincing enough for them to believe they were in danger without it. Can they afford it when he is not working? No. There are times when we have to go back to the basics. It may be because we have to wait for an order to get to us, or until we get the money.

When I heard from a lady whose husband hadn't been able to speak for days because his Hands-Free was broken, I was in shock. Was he not shown how to talk using a finger or thumb to occlude.

I understand when ES people are so indignant that we were not taught even to try to say a word or two without using anything. Usually, it is not even mentioned.

Some people say they can't use their AL because of the swelling or scar tissue in their neck and yet the same unit may have an oral adapter to use on a temporary or even a permanent basis..

Even if we choose to not do or try these things, we need to know about them. Ask your SLP. READ the literature and booklets. Look up the sections in the WW Library and try to learn the basics. Attend the IAL Voice Institute and get an education in what is available to you.

The next one will be coming up in in Clarksville, IN in June, 2010:

http://webwhispers.org/about/currentnotices.asp

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP

 

                                         meaghan.benjamin@mac.com  

                 

 


Organ Preservation Effects

 

For many years, total laryngectomy with postoperative radiotherapy has been considered the standard treatment for advanced laryngeal cancer. The substantial functional changes in speech and swallowing that result have made this option less than desirable for many patients. In an attempt to preserve the larynx, non-operative approaches have increasingly been used to treat advanced laryngeal cancer since publication of the Department of Veterans Affairs Laryngeal Cancer Study Group data in 19911. This prospective randomized clinical trial revealed that approximately two-thirds of patients in the organ preservation group preserved their larynx, with survival equivalent to that of patients treated by laryngectomy up front. Further support for organ preservation approaches, in particular concurrent chemoradiotherapy, came with publication of the Radiation Therapy Oncology Group 91-11 protocol2. This prospective randomized trial demonstrated improved locoregional control in patients treated with concomitant chemoradiotherapy compared with radiotherapy alone or induction chemoradiotherapy.


Despite these favorable results, a wealth of information regarding the functional impact of chemoradiotherapy is beginning to unfold. Studies that evaluate the functional impact of primary organ preservation approaches on voice rehabilitation after salvage TL have been scarce to date. We reviewed our experience with voice prosthesis complications to identify risk factors for tracheoesophageal voice prosthesis (TEP) failure in patients who underwent salvage laryngectomy.


The medical records of all patients who underwent total laryngectomy at The Johns Hopkins Medical Institutions between January 1, 1998, and December 31, 2008, were reviewed in compliance with the Health Insurance Portability and Accountability Act and in accord with previous approval by the Johns Hopkins institutional review board. Patients who did not undergo


TEP, who did not complete treatment, or who did not receive follow-up TEP care at The Johns Hopkins Medical Institutions were excluded from analysis. Patients were divided into 3 treatment groups: primary surgery, primary radiotherapy, and primary chemoradiotherapy. Patient demographic factors and clinical outcomes were analyzed. Voice prosthesis–related outcomes of interest were time to leakage through the prosthesis, episodes of leakage around the prosthesis, episodes of spontaneous prosthesis dislodgment, and occurrence of prosthesis size changes after the first 6 months. These variables were chosen for their clinical relevance as the most frequent complications addressed by the speech language pathologist.


A total of 174 patients met the inclusion criteria for analysis. Mean follow-up was 5.67 years and did not differ significantly among treatment groups. Primary laryngectomy was performed in 46.6% of patients, whereas salvage laryngectomy was performed after primary chemoradiotherapy failure in 18.4% and after primary radiotherapy failure in 35.1%. Adjuvant postoperative therapy (radiotherapy or chemoradiotherapy) was used in 81% (n=66) of the 81 patients who underwent primary surgery. The mean patient age was 62 years (age range, 32-87 years). No significant differences were found between treatment groups for age, sex, or duration of follow-up. Most patients (68.4%) had advanced-stage cancer (stage III/IV), with the glottic larynx being the most common primary site (54.6%). Extended laryngectomy, free tissue reconstruction, or both were performed in 20% of patients. Most of this group had primary sites outside of the larynx (58%), and 50% were treated initially with chemoradiotherapy. Primary TEP was performed in 80.5% of patients and was equally distributed among treatment groups. Decisions regarding the timing of TEP were made by preference of the surgeon or speech language pathologist. The primary site differed significantly between treatment groups, with significantly more glottic cancers treated initially with primary radiotherapy (P=.001). Primary TL was performed significantly more often for advanced stage disease, whereas non-operative treatment was the most common initial procedure for early-stage disease.


Significant differences existed among treatment groups during analysis of voice prosthesis complications. Using simple linear regression models, the mean frequency of leakage around the prosthesis (P=.04), frequency of prosthesis dislodgement (P=.02), and number of size changes in the first 6 months after laryngectomy (P=.006) were significantly higher for patients who required salvage TL after chemoradiotherapy or radiotherapy compared with patients who underwent primary TL (P=.001). There were no differences among treatment groups when comparing the number of weeks to leakage through the prosthesis (P=.42).


The results of this analysis demonstrate that patients who undergo salvage TL after chemoradiotherapy and radiotherapy have a higher incidence of prosthesis-related complications, such as leakage around the prosthesis, prosthesis dislodgement, and multiple size changes, compared with patients who undergo primary surgery. In addition to increases in prosthesis-related complication rates, salvage laryngectomy due to chemoradiotherapy failure was more likely to require extended laryngectomy procedures and free tissue reconstruction, suggesting that organ preservation strategies have multiple soft-tissue effects that can affect voice rehabilitation efforts after salvage TL.


Although the number of patients who never received chemoradiotherapy or radiotherapy was too low to include in statistical analysis (n=14), there were some interesting findings regarding their TEP success. In these individuals, the longevity of prosthesis life before leakage through the center was longer than that in the primary surgery group at large (22.8 vs. 15.2 weeks). A slight advantage was also seen regarding leakage around the prosthesis, with a mean occurrence of 0.33 in the pure surgical group compared with 0.56 in the TL group receiving postoperative radiotherapy or chemoradiotherapy. The remaining TEP variables, however, were similar to the primary surgery group at large.


The present findings are consistent with those of Kummer et al3, who demonstrated an increased incidence of leakage around the prosthesis, dilatation of the puncture, and spontaneous dislocation of the voice prosthesis in patients who underwent salvage laryngectomy after primary radiotherapy. Although these findings do not establish clear causation, the relationships suggest the need to consider rehabilitative treatment approaches that will minimize the potential for development of these complications in the salvage laryngectomy population. This is particularly true given the paradigm shift toward non-operative laryngeal cancer therapy reflected in the National Cancer Database24, 25 and the likelihood of continued increases in salvage surgical procedures. Such treatments may require novel intraoperative and postoperative considerations, long term patient management strategies, or prosthesis specific intervention strategies.


Although specific treatment modalities have not been validated for this population to date, there is a clear role for patient education regarding potential prosthesis-related complications and close communication with and follow-up by the speech language pathologist. Future investigations will be valuable in defining and investigating strategies that may reduce complications in the salvage laryngectomy population. It is postulated that treatments designed to minimize traction and trauma to the delicate tissues of the party wall may show promise for improving patient outcomes. Patient education regarding independent monitoring for early signs of complications and ways to address these complications show additional promise. A role for smaller-diameter voice prostheses in this population has also been proposed6, although a formal investigation of this interventional strategy has not been published to date.


The results of this analysis demonstrate that the incidence of prosthesis-related complications is increased when laryngectomy is performed for salvage after organ preservation therapy compared with primary laryngectomy for the treatment of laryngeal cancer. Tracheoesophageal voice prosthesis dislodgement, leakage around the prosthesis, and multiple size changes following the first 6 months after laryngectomy were seen more frequently in the salvage laryngectomy population than in the primary surgery group. In addition, extended laryngectomy and free tissue reconstruction were more often required in patients who underwent salvage laryngectomy after chemoradiotherapy failure, suggesting that organ preservation strategies have multiple soft effects that can affect voice rehabilitation efforts after salvage laryngectomy. These data suggest the need for adjustment of clinical practice patterns in the salvage laryngectomy setting and further investigation into strategies that may reduce such risks.

 

References:


1. Department of Veterans Affairs Laryngeal Cancer Study Group. Induction chemotherapy plus radiation compared with surgery plus radiation in patients with advanced laryngeal cancer. N Engl J Med. 1991; 324(24):1685-1690.
2. Forastiere AA, Goepfert H, Maor M, et al. Concurrent chemotherapy and radiotherapy for organ preservation in advanced laryngeal cancer. N Engl J Med. 2003; 349(22):2091-2098.
3. Kummer P, Chahoud M, Schuster M, Eysholdt U, Rosanowski F. Prosthetic voice rehabilitation after laryngectomy: failures and complications after previous radiation therapy [in German]. HNO. 2006; 54(4):315-322.
4. Chen AY, Schrag N, Hao Y, et al. Changes in treatment of advanced laryngeal cancer 1985-2001. Otolaryngol Head Neck Surg. 2006;135(6):831-837.
5. Hoffman HT, Porter K, Karnell LH, et al. Laryngeal cancer in the United States: changes in demographics, patterns of care, and survival. Laryngoscope. 2006; 116(9, pt 2) (suppl 111):1-13.
6. Blom ED. Some comments on the escalation of tracheoesophageal voice prosthesis dimensions. Arch Otolaryngol Head Neck Surg. 2003; 129(4):500-502.

 
Heather Starmer, MA CCC-SLP
Assistant Professor
Department of Otolaryngology - Head and Neck Surgery
Johns Hopkins University
 

 

 

 

 

A Taste Of Cabo


It is one of those rare friendships that blossomed beautifully right from the very beginning. They were late to our table that first night on the 2004 WebWhispers Panama cruise; he was handsome and debonair in his white hat, she was stylish in flowing scarves. But what got to me were his elegant chivalry and her smart and naughty sense of humor. It is difficult to make witty asides with a TEP and a Servox, but considering our dinner companions, we managed very well. I was traveling with my mother and by the end of that trip, Linda, Miguel, Mom and I were fast friends.


This past February I finally made it to Cabo San Lucas, at the tip of the Baja Peninsula in Mexico to visit them. They are one of the great love stories. Linda is from Vancouver, Canada (more on that later- I was in Cabo during the recent Olympics). Miguel is Mexican, originally from Mexico City. He is a multi-talented and accomplished musician. She was an English teacher on vacation visiting her surfer dude son in Cabo. They went to a bar where this great band was playing… he could sing, she could dance…they have been making beautiful music together for over 20 years. He stood by her through surgery and treatments, traveling back and forth from Mexico and Vancouver to be at her side, and their devotion to each other is the real thing.


Eventually, the band broke up and Miguel is now property manager for Plaza Calafia, one of the first condominium complexes in Cabo - built back in the days when it was just a sleepy fishing village except for when the big sport fisherman showed up for the world-class tournaments. The growth over the last two decades has been exponential and shows no sign of abating. Calafia now seems quaint and a throwback - with its traditional architecture and narrow stone stairways. The resorts and luxury condominium complexes are literally being piled up one on top of another in a jumble that defiles the landscape and defies what passes for zoning ordinances. My second day there, Linda took me down to their lovely little private beach on the Sea of Cortez and along with the fabulous houses circling it, was an unfinished behemoth that jutted out onto the beach…not 50 feet from the water. It had been abandoned by the owner when the authorities finally shut him down for building too close to the water. The owner walked away from a multi-million dollar investment and probably found another seaside community in which to build, without interference. Bureaucratic corruption is a way of life and a source of frustration and sadness for people like Miguel, who loves his country and is very proud of his heritage but fears for its social and economic future.


Mexico is a complicated country. It is filled with contrasts which can make it difficult for a gringo/outsider to appreciate the richness of the culture, especially considering the proliferation of WalMarts , Costcos and all-inclusive resorts catering to the non-Mexicans. There are so many ex-pat Canadians and Californians that in some condo/communities the only natives are the groundskeepers and housekeepers. Mexico is a poor country; North Americans bring in much needed revenue and the tourist trade shapes our perceptions. I found some great deals on fun mementos at Artisanos, a three story warehouse of native arts and crafts. I love my hand-painted plates and the colorful little geckos are just too cute, but it is obviously a factory/outlet tailored to tourist people like me. Regardless, I could have spent many more pesos there and made my friends and family very happy with their presents!


The Farmer’s Market was even better. It was like a Country Fair here in Maine, complete with music, tasty food, gorgeous local organic produce and beautiful handiwork. I found the perfect “souvenirs”- a traditional hand-woven wool rug from Oaxaca and a darling little embroidered sun dress for my grand-daughter. I got a bit too much sun but it was all worth it, munching on a fresh spinach and cheese empanada , watching a toddler dance to some terrific jazz and learning how to bargain in Spanish for my rug…it was a great day.


If you are fortunate enough to have friends like Linda and Miguel, you will be able to learn a bit more about the real Mexico. Starting with the food…what most of us know as Mexican is from a fast food chain. The real stuff is amazing. I am trying to learn the right Spanish words for certain foods, but as a Maine Yankee, I am pretty lame. The taco de nopales were muy rico. We are talking about cactus tacos and they are WAY better than it sounds! “Nopales” are a kind of cactus that tastes like a cross between green peppers and asparagus. Muy Rico is what you say when some something is delicious. Add some of the local hot sauce, and some pico de gallo, roll it up in a fresh warm tortilla and pop it in your mouth at the local taco stand less than an hour after you land in Mexico - that is what I am talking about, amigos. Plus they make this lemon/lime fizzy drink thing that is perfect. And then there were the shrimp and fish tacos but they were closing the gates on us…Siesta Time.


Back to the condo and the next morning I had a pedicure on the deck overlooking the water. Maria comes to the house and for less than what I pay in the States, I got an amazing spa pedicure. There is a bit of an awkward moment as I try to figure out pesos and I get confused and end up squabbling over 350 peso. I am thinking it is about 30 American dollars. In reality it is less than $3.50 - I am so embarrassed after she leaves and I realize my mistake. I feel like the quintessential Ugly American.


This visit was during the Winter Olympics in Vancouver. We had to plan our evening entertainment around the events. It doesn’t make much sense; the view from their deck is magnificent and I was glued to the TV along with Linda and Miguel. I become an honorary Canadian during the ladies ice-skating, but it was the bobsledding that had me wondering…here I was in Cabo watching fuzzy Mexican coverage of the Olympics from Vancouver via Atlanta and I was on the edge of my seat. I stood up and saluted that night when they played “O’ Canada”. Even the night we did go out to hear their friends, an Australian bar band doing covers from the 70s and 80s, we had to bribe the bartender to find a station carrying the Olympics. That was followed by karaoke night at the after-hours jazz club and maybe it is the end of the land/ocean/sea convergence but Cabo has the same outlaw feel of Key West, Florida. The next Sunday afternoon, as we walked on the beach at Las Cerritos and a huge roar came up from the bar crowd, we knew it - Canada had won the Gold Medal in hockey. There are some things that just seem right and somehow that was a perfect cultural convergence.


Earlier that day we headed out to the desert. It is hard to describe - this juxtaposition of sea and mountains and desert. Truthfully, the desert is not all that beautiful, but it is raw and real and somehow, strangely compelling. It is a landscape from which you expect Clint Eastwood and Lee Van Cleef to emerge on horseback…without any sense of irony. Away from the cities and border towns, which pose their own dangers, Mexico seems wild, untamed. You can drive for miles along winding two lane highways, dotted with memorials for fatal crashes, with the Pacific on one side and the Sierras deceptively close on the other side of desert scrub land. You do not want to wander off the road. You drive a reliable vehicle with good clearance and pack a lot of water, no matter where you plan to go…. just on general principle.


This desert is not what I expected. It is actually quite fertile, fed by deep underground aquifers, but top side it is rough and scruffy. The cactus can sneak up on you. I forget what they call it, but I call it sneaky when a thorn just shows up in your foot. When safely in your vehicle you can drive past acres of basil fields, the aroma alone enough to make a foodie swoon. I have no idea why there are burros and ostriches guarding these fields, but there are. I also had no idea why Linda and Miguel want to build their dream house here in the wild until Linda hauls me up through that sneaky cactus to a small ridge and points out the view to the ocean and I get it. Raw and real and elemental. Mexico.


Just before I left Miguel taught me how to make tortilla soup. It is basically Mexican chicken soup, but it is my new favorite recipe. I will send you the recipe if you want, but I think it is best enjoyed overlooking the Cabo arches and maybe sipping some Damiana after, while you trade stories.


The same day we went to the Farmer’s Market we also had dinner with June and Murray Allen (he is a former WW president). They are also Canadian and have a condo In San Jose; they were Linda’s first contact with the lary WW world. June cooked fabulous Chinese food that night and it was a lovely visit. There is something to be said for being with friends who understand our situation. I especially enjoy cooking and/or eating with folks who know that I can’t talk and eat at the same time!


Here in Maine a lot of folks get tired of the cold and decide that Florida is the place to spend the winters. I have friends and family there and it is a lovely treat to visit them in February. For about $200 more in airfare, I can go to Cabo…no contest. I am saving my pesos. I still am fuzzy on the math, but the exchange rate is favorable.


It is beautiful, weird and wild. I saw whales from our balcony and watched sunsets through the arches. I ate noplales and learned the difference between cardon and pitaya cactus in Las Congrejos. I watched the sunset in Elias Calles and even learned something new along the way. It was magical.


I will be back.

 

The view from their deck my first morning out to the Sea of Cortez The view from the deck that afternoon out to the west and the Cabo arches Quintessential Cabo
The Three Amigos – Murray, Linda and Donna Burros on the road to Las Congrejos Cardon cactus
The Desert Pioneers, Linda and Miguel The view to the Pacific from Las Congrejos Linda and Donna celebrating the Canadian hockey win at Las Cerritos
One last look at the water before flying out of San Jose and back home Linda and Miguel

 

 

 

 

 

 

Esophageal Speech Support



During our two regular weekly WebWhispers chat room sessions questions came up about how and where to learn esophageal speech (ES). I answered the questions to the best of my ability as an ES instructor. I always recommended the IAL website at: www.TheIAL.com, for all the information and forms needed to attend the next IAL Voice Institute. I also mentioned the Batten Scholarship and WW/Lauder scholarship to help first timers with expenses.


Early last November some of our regulars suggested that we set up another chat time to focus on just ES instruction. Our first WW Saturday ES Chat was November 14th, 2009. We had 14 drop in, and a few planned to just lurk to see how this unusual chat would work. We had different levels of ES skill, a few beginners that only used an electo larynx (EL), and one with an Ultra Voice in repair. At least one person had mastered the EL and her tracheal-esophageal prosthesis (TEP), but wanted to learn ES to use when both hands were needed for a task at work. We call the latter a “triple threat”, as in show business when someone is a singer/dancer/actor.


I wanted to write about what I’ve learned from this interesting ES Chat experiment. It turns out that this group is very similar to local clubs that I have supported over the years. There is usually a core group that shows up regularly. Some log on 20 minutes early for extra help. This reminds me of the ES classes I agreed to work with before the regular local club meetings. Group sessions focused on ES and speech improvement is another way to support new and seasoned laryngectomees, as well as graduate students who wish to become SLPs specializing in laryngectomee rehabilitation.


Our WW ES Chat sessions are very similar to local clubs in another way. Our mission is the same - rehabilitation. We experience the same flow in attendance. We have the core group, and others who come and go when they can. We almost always have a few brand new laryngectomees that are curious about how ES works.


We’ve been fortunate enough to have Phil Doyle, PhD, SLP join us for a few sessions. The support for each other remains the best part of our sessions. It is important to have this group time together to focus on ES, field questions, and work on group assignments. Repeating basic information to the newest arrivals is reinforcing for some who may have missed, or didn’t understand the explanations the first few times we covered some of the topics.


The reward for my weekly effort comes when there is a break through and someone has ES voice for the first time, or moves up to phrasing by mastering how to link words in a new way. There is no better pay off. It’s emotional for me when they “get it”, and discover they have an ES voice to use with their family and in public. Yes, some can own their ES voice in very little time once they learn how it works.


If it seems doubtful to you that ES can be taught online I can understand your reluctance. I’ve had the opportunity to visit with a few on the phone or via webcam so I could observe what they are doing and avoid self-defeating problems. For some, I’m the first laryngectomee they’ve ever met on the webcam, or face to face.


However, in the end only following instruction is not enough. Taking the time to apply what they’ve learned to what they have left to work with is imperative. A baby plays with mouth noises to learn how to create speech sounds. Healing well enough to articulate consonants intelligibly, and develop a new sound source for the vowels by using nose/mouth air moved into the top portion of the esophagus, are both necessary for ES.


As an adult the language is already in place. The word lists used for practice are not a test of literacy. The reason they are recommended for ES practice is they are loaded with consonants that will move air into the esophagus that will return as the missing vowel sounds. Mouthing only may sound like a barely audible whisper because the esophageal vowel sound is missing. Learn how to say a,e,I,o,u in this new ES way, and you have a hands free voice.


Our ES Chat meets once a week, every week. Recently we switched from our regular Saturdays to Sundays, 4 p.m. EST, to accommodate those who indicated they had a conflict with regularly scheduled commitments. Look for us on the WW Forum in the Chat Room.



Elizabeth Finchem
 

 

 


 

OMG

By Elspeth Thomson


"Mr Thomson, you have cancer of the larynx; the tumour is Stage 2, measuring 1.2cm".

4th May, 2008 - I can still remember sitting in the consultant's room and listening to his words, not quite taking it in that my beloved David had CANCER. Oh my god CANCER. I thought, he's going to die, as the consultant seemingly rambled on about radiotherapy and a seventy to eighty per cent of being cured.

We came out of the room and David seemed to take it in his stride. I was absolutely devastated. How I managed to hold the tears back I have no idea. I needed to be strong and over the forthcoming weeks and months would prove stronger than I had ever been in my life. I knew, without a doubt, David had the strength and will to fight, but wondered how I would cope.

David had radiotherapy which was successful in that there was no cancer to be found when he went for his checkups, but his larynx had been damaged by the radiotherapy, causing him eating and breathing problems. Therefore it was suggested that he have a laryngectomy, which was done in February of 2009.

I had always done most things for David; some people may find it strange, but it was how my mum is with my dad and I just followed on, but this was now a whole different ball game. David changed overnight, he became depressed and he lost all confidence. I had to take on every role, cleaning his stoma as he couldn't do it himself, helping him shower, collecting prescriptions over and above my normal everyday tasks in life.

I was so resentful. David was living with cancer, not dying from it, but it seemed to me that he had totally given up on life. I spent many a long and lonely sleepless night worrying about him and what the future would bring. Night time was always the worst, that is when the mind really started to wander.

I was depressed myself but shrugged it off and carried on doing a job that I did not ask for. I thought I was coping, but I wasn't. I was going through the motions. This caring lark was taking over my life. I had no social life, so called friends disappeared like a puff of smoke. All my time and energy seemed to be taken up with him. I felt so guilty sometimes, however much I had done I felt as if I had let him down; it never seemed enough.

We are now more than a year on from David's surgery and what a long way both he and I have come. I look back and ask myself would I have done things differently and the answer is certainly yes. The main thing being, I would have been to see my own doctor about my depression a lot quicker than I did. I am sure I would have coped better.

I still feel angry sometimes about the whole situation. Why us? What have we done to deserve this? I still sometimes have difficult days and sometimes I feel afraid for what the future holds. Every time David has a hospital check up, the few days before it I feel anxious and worried. It is always there at the back of my mind but I no longer dwell on it like I used to.

For all you carers out there, it is hard, but in our case it has got better. I now just take every day as it comes, I know David would find it very difficult to cope without me. This became apparent when I had to spend a night in hospital at the end of last year, and he came to visit with a pair of tweezers and a torch!

Sometimes I think of what the outcome could have been; not having David in my life is too terryfying to contemplate. He is alive and doing well at the moment and looking forward to the summer months and for that I count my blessings. Everyday is a bonus, being a carer is difficult but I guess I wouldn't have it any other way. What's done is done, we can't go back - we have to look to the future.

 

 

 


 

A LIFETIME OF SERVICE


My cancer consultant surgeon, a Hindu gentleman, who spent 25 years saving so many lives of throat-cancer patients through-out East Kent, eventually had to retire, and it was such a sad day, not only for all us laryngectomees, but also his professional colleagues, doctors, technicians and nurses. My contribution to the farewell dinners and retirement parties was a special retirement booklet I produced, which contained about 60 photographs and messages of goodwill from us all, and about the same amount of poems, that I did especially for him.


This is just one..................


A LIFETIME OF SERVICE


To spend a life helping others,
takes a very special kind of man.
One who stands out in that band of brothers,
of the medical professions, noble clan.

How many things, over so many years,
having to learn, to acquire such skills.
How many thanks, whispered through tears,
has he heard, as the terror he stills.

He likes to think, that it's been just a job,
little realising the debt that we owe.
But ours are the lives, that death couldn’t rob,
as the skills of that modest man show.


Also in the same booklet.........

.

YOUR RETIREMENT


This idle life, that you now lead,
is like a pleasant sleep,
wherein you rest, and heed,
those dreams that past you sweep.

And still, of all your dreams,
that in turn so swiftly pass,
each in its fancy seems,
more noble than the last.

And each evening, you will say,
noting this life of bliss,
" I have never known a day,
in all my life like this,"


And another one that I rather like...........

 

HEALING HANDS


There are hands that caress

and those that repel.
There are hands that can bless,
and those that teach well.

There are those that fight,
and those that pray.
There are those so white,
and those old and grey.

There are hands full of love,
and some point the way.
There are those in a glove
just hidden away.

There are hands that write music,
so gently they sway.

But the hands I admire,
I can see you all nod,
are the hands of a surgeon,
that were touched by his god.


And now we have two of our ENT Nursing Sisters retiring. One of them has been nursing for 45 years . Our club, of course, is arranging a farewell party for them, and there will be lots of people there, 'Larys ' from all over, consultants, doctors, nurses, friends, and family. There has been no time to do another retirement booklet, so I have done this poem which I have pasted inside their thank-you cards, which will accompany the individual presents that Tilly and I have bought for them.


MARGARET AND BARBARA


Their hands, were strong to comfort,
Their hearts, were quick to heed.
They knew, the signs of sadness,
They knew, the voice of need,

There was, no living creature,
however meek or small,
that they did know its trouble,
and hearken to its call.

Their lifetime, was spent in duty,

serving others, without pause.
Those very, special ladies,
so deserve, our fond applause.

 

 

 

 

 

 

Massage and Stretching

 

Can't move like you used to? Having a laryngectomy can cut into muscles and nerves that affect the way your shoulders move. Many of us have had the spinal accessory nerve cut, although some surgeries spare the accessory nerve. If you are having trouble with shoulders, you need to know what this can do.

Here is the definition from Medicinenet.com and you can find more information there:

"Accessory nerve: The eleventh cranial nerve, which emerges from the skull and receives an additional (accessory) root from the upper part of the spinal cord. It supplies the sternocleidomastoid and trapezius muscles. The sternocleidomastoid muscle is in the front of the neck and turns the head. The trapezius muscle moves the scapula (the wingbone), turns the face to the opposite side, and helps pull the head back."

"Paralysis of the accessory nerve prevents rotation of the head away from that side and causes drooping of the shoulder."

I have this problem. Massage helps, especially if done by an expert. Stretching helps even more because it is done daily, by you, and how much you improve is controlled by how much you do for yourself.

Do we have it in writing so you can try it? You bet we do. It has been tucked away in the HeadLines section, with all of you being reminded, every now and then, that there is a download there that can help you. But we have a lot of new members coming in and old members don't bother until they notice how bad their shoulder is getting. So here is another chance to help yourself. Download this file. Don't try to do everything at once. Pay particular attention to your posture and do the best you can.

Pat Sanders

Download:

Self Massage and Stretching Booklet
 

 

 

 

 

 

One Size Does NOT Fit All

Terry Duga

 

We want simple solutions. We long for a world where if “A” is the problem, then “B” is always the fix. The desire for a “one size fits all” answer, however, doesn’t work well in the real world and certainly not in the lary world.

In “our” world we are all different (Gee, there is that pesky mantra again.) One size not only doesn’t fit all, it hardly ever fits most. Many products seek to accomplish the same end. The differences in the individual products, besides being there to avoid patent infringement problems, "too many lawyers" syndrome, also serve the function of allowing a product to work differently on different people.

So, there is no single solution to a problem. With luck, there may be several possible solutions and the individual can try each to find what works best for him or her. Examples are easy to find by scrolling through web pages of various suppliers.

For example, the electrolarynx: more than one manufacturer exists. While they share a commonality of providing vibration for voice, they have some variations in operation. While I do not generally use an EL (I use TEP speech), I do have a Servox Digital and have used it and a TruTone. I have found they both work well for me, but that one may work better on one part of my neck and the other on another part. I have a fair amount of lymphedema which hides my “sweet spot” and at any given time sport a beard that also reduces my target area.

A number of different types of prosthesis are also available. There is the basic division between patient changed and indwelling, changed by your SLP or doctor. But even in the basic divisions, there are subcategories with variances in size of flange, length, caliber (i.e., diameter of the hole), resistance to yeast, air pressure needed, etc. Each type fits a different need.

I use a Blom-Singer Advantage, Indwelling prosthesis. I cannot see my puncture to be able to place the prosthesis and have a really active gag reflex, so self changing is not a viable option for me. Like many of us, yeast is a problem. The Advantage allows me to get six months’ use of a prosthesis without taking anti-yeast medication and I chose not to go the yogurt probiotics route which is more of a supplement.

There are also different HMEs and ways to attach them to the stoma, or in the case of Barton-Mayo buttons, to pop into the stoma. Each has certain advantages and disadvantages. So, when looking for a solution to a problem, considering the many options available is often just a first step. Ask others for opinions but, remember, what works for one may be exactly what you need, it likely may not be. Look at the options available and do not be afraid to try different products to see how they work.

There is no simple “right” way. What is right, is what works for you. What is wrong, is what doesn’t work for you. And to complicate it further, what is right for you now, may not be right for you a few years down the road. We all become tired of the “we are all different” mantra, but we need to repeat it until the lesson it teaches sinks in.

 

 

 

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,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 34 new members who joined us during March 2010:

 

Rodney W. Bacon
Redding, CA
Jerry A. Barber
Colonial Heights, VA
Claire Baxter - (Caregiver)
Newcastle, England
     
Leonard M. Borucki
Spencerport, NY
Lynne Britzman
Aylesbury, UK
Diane M. Dunn - (Caregiver)
Vinita, OK
     
Lenvil L. Dunn
Vinita, OK
Loyd M, Enochs
Evansville, IN
Frank Ester
Leesburg, FL
     
Anna Choi-Farshi - (SLP)
Boston, MA
William H. Fay
Buckeye, AZ
Craig A. Gauthier
Stanton, TX
     
James G. Gilmer
Moorinsport, LA
Karen Kuhn
Beaver Dam, WI
Donna J. LaPage
Boulevard, CA
     
Michael J. Leahy
Ladysmith, CAN
Heather Longstaffe - (SLP)
Vancouver, B.C. CAN
James Martin
Jane Lew, WV
     
Victoria Martin - (Caregiver)
Jane Lew, WV
Mike Mulloy
Newcastle, England
Tiffany Nealy
San Antonio, TX
     
Kristen Phillips - (Caregiver)
St. Petersburgh, FL
Tom Phillips
McDonald, PA
Arthur Radice
Gambrills, MD
     
Margaret A. Radice - (Caregiver)
Gambrills, MD
Amy Rose
Duxbury, MA
Cheryl Sams - (Caregiver)
Decatur, IL
     
Thomas Sams
Decatur, IL
Michelle Smith - (Caregiver)
Leesburg, FL
Charles Smyth
Chester, SC
     
Julie Anne Tanner - (SLP)
Nashville, TN
Fritz E. White
Port Charlotte, FL
Maynard Wilkins
Asheboro, NC
     
Robert Wilkins - (Caregiver)
Asheboro, NC
   

 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
           Webmaster - Len Librizzi
 

 

 

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
is eligible to receive tax-deductible contributions in accordance with IRS § 170.
 
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