|Name Of Column
||News & Events
||Jeff Searl, Ph.D, CCC-SLP
||A Future for Esophageal Speech
||A Day of Small Things
||Special trip or event this year?
||Close Shaves with Saturn
| To Make You Scream
||Facts not possibilities
|Travel With Larys
||Venice to Barcelona
|The Speechless Poet
||Len A Hynds
||THE DEAF ROOF-TILER
||Prose & Poetry
|Bits, Bytes & No Butts!
||The Great Geezer Gazette!
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
In Dec 2005, we were trying to end our year with plans for the furure of WebWhispers, having worked, argued, discussed, decided and accomplished the rewrite of the bylaws to lead us in the direction of a prolonged existence of our ever growing organization. This letter written by Dutch Helms, was sent to the BOD, and was not ever shared on the list or in other communications.
The following thoughts are probably not necessary to the efficient operation of WebWhispers, but probably ARE necessary contributions to the "mindsets" of the WW leadership/management team.
Given the origins and history of WebWhispers, the web site and the Mail Lists are often perceived, I believe, as "my babies" or some other variation thereof. While this was certainly TRUE in the beginning, when it was simply the "Cancer of the Larynx" web site and had a relatively rudimentary Email exchange list, the growth of the organization since that time has really altered this ... and I am MORE than happy it did.
Given this, as the ONLY non-elected officer of WebWhispers, I think it important that you KNOW how I view the organization and MY relationship to it. It is, in fact,farily straight foward and simple, but since neither you nor I have really addressed it frankly and openly in the past, I thought NOW would be a good time to do it ...so that we are all on the same page.
Although it could be a bad analogy, I see my relationship to WebWhispers as that of a parent and a child ... a relationship that my folks described to me as "the kind of love that grows toward SEPARATION". That is, a relationship in which the "parent" strives to create from the "child", an "adult" ... someone who is independent, successful, and "on his own" in the greater world.
In short, I would consider my "work" done and done well on that day when I "retire" as Webmaster and primary ListServ Moderator, while still with all my faculties intact, and simply move to the WW BOD as, let us say, "Webmaster Emeritus" or some other equally harmless title. In other words, I would LIKE to see WebWhispers "up, operating, and with a likely successful future" with ME still alive and functioning but no longer involved in its daily management. The analogies that come to mind are: birds kicking the chicks out of the nest, Dad taking the training wheels off the child's bicycle, a father giving away hisdaughter at her wedding, a Mom and Dad attending their child's college graduation, an instructor pilot releasing his student for "solo flight", etc.
The point is ... I have NO desire to remain as Webmaster/Moderator "ad infinitum" and/or "ad nauseum"!! My goal would be to turn over these reins to a "new generation" while I was still "functioning" well enough to enjoy the results of this work and to see it continue to grow and flower WITHOUT ME.
I am not sure what this GOAL actually means at this point ... that is, what I or YOU should be doing in light of it, but I DO want to make sure you all KNOW that this IS my goal. At some reasonable point in time I WANT to "kick" WebWhispers out on its own and to watch it succeed and grow independently, without my daily input or oversight.
None of us can or will live forever .... and I don't believe I want to put WW in the position of "having to replace me" simply because I "croaked" while on the job! LOL! I guess what I am saying is that, at a certain point, the organizaton will NEED and SHOULD replace me with a "new generation" Webmaster and primary ListServ Moderator and how and when that is done will be largely up to the entire WW leadership/management TEAM.
To make things PERFECTLY clear, there is NO hidden agenda here, nor am I suffering any health concerns that I am keeping from you. I am absolutely FINE (as far as Iknow). I just want you to know what MY goal is and that it is something that you should be aware of and not be afraid to broach or consider when that time comes.
I hope these "mumblings" are clear and understandable ... I just thought they NEEDED to be said ... so we are all CLEAR about how I see myself relative to WW and its future. NOTHING would give me more joy and satisfaction than to see WW pressing on as a meaningful, successful laryngectomee support group ON ITS OWN!!
Thanks for listening!!
Dutch was not expecting to die any time soon, but we were all aware of some of the difficult surgeries he was facing and the amount of time when he would not be here constantly for all of us and we all knew there was some urgency to our moving ahead. We started 2006 with making changes and plans in the moderation responsibilities in Dutch's training of Michael Csapo, with my finding helpers to take over the change to a real database for the records that needed to be automatically done and, in early June, Dutch informed the entire membership that he had limited time to live. My biggest responsibility that year was contracting to have a new website built and signed the contract on that within a couple weeks of Dutch's announcement. I can't possibly name everyone who helped but our people stood up and said,. "What can I do?"
Dutch died on November 1st 2006, and, to me, that will always be Founder's Day.
A Future for Esophageal Speech
Jeff Searl, Ph.D., CCC-SLP
Associate Professor, University of Kansas Medical Center (Kansas City, KS)
What Does the Future Hold for Esophageal Speech?
Clinical practice patterns in North America and around many parts of the world shifted substantially in the late 1980s when tracheoesophageal speech entered as a more routine method of alaryngeal speech rehabilitation. Each of the three primary options has an inherent set of advantages and disadvantages that must be considered on an individual basis. The intent is to explore some of the many reasons why esophageal speech seems to be a forgotten option. Perhaps a plan can emerge to better insure its continued usage . Below are a few issues that have contributed to the state of esophageal speech training as it stands in North America. These factors are tightly related to one another making it difficult to tease out cause and effect and to alter the status quo.
Some Reasons for the Reduced Usage of Esophageal Speech?
Duration of Training. Learning esophageal speech almost always takes more time than the other methods, commonly months. Some studies report about 6 months on average to obtain functional speech and additional months to become excellent, although faster acquisition of esophageal speech can occur in some people. In comparison, the training for use of an artificial larynx to a point of good, functional communication is typically on the order of weeks rather than months. Tracheoesophageal speech acquisition is often fairly immediate or at least attainable at a conversational level in a few days to a few weeks of therapy sessions.
Related to this idea of duration-to-acquisition of useable speech are changes to health care that have happened over many decades. In the heyday of esophageal speech training, a person would very often undergo a total laryngectomy and then be an inpatient for 10-14 days. There are studies of esophageal speech training from the 1960’s in which laryngectomees learning esophageal speech were seen intensely for such training as an inpatient once the surgeon gave clearance. This often included two or more individual training sessions plus group therapy each day. Early and intense focus might be important for the rehabilitation process but, these days, patients are rarely seen in the hospital for that long. Insurance issues in today’s environment also are likely to impose some limits as to how often and for how many sessions a person can be seen for speech therapy. These limits apply to all speech options but the impact is felt most for esophageal speech because of the extended training period needed. Many people with a laryngectomy are intrigued by esophageal speech. It has many advantages including: no need for daily cleaning of prostheses or visits to the SLP for change-outs or troubleshooting, reduced long-term costs, and no batteries to change. Many try esophageal speech but opt out in the face of slower than desired progress.
Inability to Predict the Outcome. It would be easier to promote esophageal speech if we could know up-front what the likelihood of success was for functional communication in a given individual. Not everyone who attempts to learn esophageal speech seems able to do so even with good motivation and training. There are some instances where predictions are easy, for example, a known spasm of the upper part of the esophagus. Most likely, there are physiological reasons that a person has that make esophageal speech more difficult to produce. A few attempts have been made to figure out this issue, like measuring the pressures at the top of the esophagus at rest and during speech attempts; but these studies have been few in number and unable to pinpoint predictions with much accuracy. Overall, there is less appeal in committing a significant amount of time and resources over several weeks and months when there is not a well-agreed formula for predicting success in acquiring esophageal speech.
Portrayal of Tracheoesophageal Speech as the “Gold Standard.” One only has to read the peer-reviewed journals dealing with laryngectomy to find phrases such as, “tracheoesophageal speech is the gold standard.” In looking at group data, it is the case that tracheoesophageal speech comes the closest to matching speech and voice produced with a larynx. However, group data do not tell us about a particular individual’s daily communication needs and preferences, their access to services, or financial resources.
Organizations such as the IAL and WebWhispers do a good job of promoting individual choice and differences when it comes to alaryngeal speech options. Unfortunately, our ENTs and SLPs often do not. It is somewhat commonplace to hear stories at laryngectomee meetings about people who had no idea there were different choices or to hear that they were given no opportunity to express a preference. A more informed group of clinical care providers is needed to properly educate patients about the three options, and then help choose the communication option that best meets the patient’s needs, preferences, and physical abilities.
Dwindling Expertise. The SLP pool of experts as well as the patient experts who could teach esophageal speech has been decreasing over many years. Part of this depletion is simply that the experienced esophageal speech teachers from a generation or more ago are retiring or dying. The stock of good esophageal speech teachers is not being replenished because:
1) graduate training program typically do not take on laryngectomy rehabilitation in a meaningful way, and
2) there are fewer and fewer patients who learn esophageal speech that might have the potential to be good teachers of others in the future.
It is rare that SLP graduate training programs have a stand-alone class dedicated to head and neck cancer, let alone one for laryngectomy rehabilitation. If students get any exposure to total laryngectomy it is typically a lecture or maybe a few lectures as part of a more general voice class. A few places have a faculty member with particular interest and expertise in the area and so an elective class might be offered. Additionally, the bodies that govern graduate training programs leave it fairly open as to the types of clinical experiences a student needs to acquire in their training. The majority of SLP students who graduate have had no contact at all with someone who has had a total laryngectomy.
Organizations such as the IAL and state/regional laryngectomy groups have offered training in all three alaryngeal speech options. These are usually 1-4 day courses with varying topics. It would be rare that an attendee would leave with enough knowledge and expertise to go and practice completely independently after such a brief training. Mentorship by a knowledgeable person is almost assuredly needed but not frequently available. Most SLPs, even those working in hospital settings, do not see many people with head and neck cancer unless they work at a cancer hospital.
Lack of Scientific Pursuit. Very few researchers (basic science or clinical) focus on understanding esophageal speech and I would venture to say that there is no one currently investigating ways to improve esophageal speech training. We as scientists and clinicians could possibly improve the esophageal speech training process, and it might be a good opportunity to now re-examine the undertaking of research in esophageal speech in light of the following:
1) surgical approaches and reconstructions have changed with the advent of tracheoesophageal speech with greater awareness of the need to reconstruct the upper esophagus and lower pharynx in a manner that sets up good vibration of that tissue;
2) varying degrees of surgical myotomy are often employed in the reconstruction now that were not routinely done prior to the 1980’s;
3) botox injections into the tissues of the throat are now more widely available and utilized to facilitate vibration of the tissue on an as needed basis in tracheoesophageal speech and could be done for esophageal speech; and
4) therapy trials that utilize techniques such as visual feedback of the throat from endoscopy when training control of the region for esophageal speech are possible but have not been reported.
Esophageal speech is clearly a viable option
The picture may seem bleak from my comments above although I maintain optimism. Esophageal speech is clearly a viable option as evidenced by individuals we see using this type of communication and by the somewhat more widespread use in other parts of the world. Dedicated work by the small group of clinicians and researchers who work in this area, in collaboration with patient and advocacy organizations, are most likely going to carry the mantle. Development of a packaged training program plus mentorship post-training remains the most logical means of building then expanding a cohort of SLPs and other trainers who can carry on the long history of esophageal speech training.
A Day of Small Things
As I read through this month’s submissions to the Speaking Out question about special travel or events in the last year I was struck by how many of you wrote about something that included meeting up or traveling with family and/or friends. So often even a modest trip is transformed not by what we see and do so much as who we do it with. A simple meal becomes memorable because of our company and the food will never again taste quite that delicious no matter how many times we try it. Certainly the big trips – a long planned and saved for “trip of a lifetime”, a destination or activity we can cross off our “bucket list” are wonderful. But as we all know plans sometimes fall apart most unexpectedly (especially it seems lately, if you are flying!) I was reminded of this in June when I flew back to Maine from the IAL meeting in Baltimore. Severe thunderstorms delayed many flights in Baltimore because several hub airports were grounded, including Philadelphia, my next stop. As a result many of us missed our connecting flights and faced the unpleasant prospect of an overnight in the airport. I did manage to get out of Baltimore to Philly very late at night figuring I’d rather spend the night there and maybe increase my chances of finding an early connecting flight home to Portland the next day. The wait included the whole cast of characters from the drunk and irate or hysterically tearful passengers to the beleaguered and bewildered staff trying to get everyone sorted out. On the plus side, I will say the 2 am music loop featured some old favs of mine, Harold Melvin and the Blue Notes. And if I had a friend or two with me, I would have been getting down with my bad self, having fun disco dancing from back in the day, instead of trying unsuccessfully to sleep on a hard bench. But I did enjoy the music as I drifted in and out of unrest. I was also profoundly moved by the plight of another group of travelers who straggled in after me. It was about 3 or 4 couples, maybe a few years older than me, part of a tour group on the very first leg of that “long-awaited trip” to the British Isles. They had flown in from the Midwest, missed their connecting flight to Heathrow and now would be delayed nearly another 24 hours before they could get out. They would miss their designated meet-up with the rest of the group in London and were trying to get a flight from there to Dublin and hopefully connect with everyone else several days into the tour. I was impressed by their surprising good humor and equanimity dealing with the mess but I suspect the irony of the airport soundtrack was lost on them.
All of this came back to me as I read about everyone’s travels and adventures, in particular the great piece from Noirin Sheahan this month in her column, Dear Lary. Be sure to read about the (mis)adventures of her yellow suitcase. I wondered what I could contribute to the discussion. Thinking back over the last few months there were some stellar days. This summer we went on a number of what my grand-daughters have started calling “field trips” to places like the local beach/playground for days of discovery about the tides, which are rather dramatic in that particular cove. We made nearly daily excursions to “our corn truck” in August for the absolute best corn on the cob- so sweet and fresh we each always peeled an ear right there to munch on as we came home. We went to our local CSA (Community Share Agriculture) farm to get our vegetables and check out the cows and pigs and turkeys. We worked in our own gardens, learned to swim in our own pool and drove the hour to visit my mother, have lunch, bring her some of “our” favorite corn and swim in her indoor pool to the delight of all the other residents at the retirement community. Even Great Grammie got back in the pool and swam a few laps like the old days; something the girls found totally amazing. Nanny just stowed her Servox safely out of the way of splashes and dunks, sternly admonished the girls to read my lips and we “walk/swam” in the 4ft depth pool. It was a great adventure that we plan to do the next time the girls have a day off from school - I’ll get pictures of 4 generations of McGary mermaids. On the face of it, nothing spectacular but it was all delightful and memorable and I thought of this passage from “Starring Sally J. Freedman as Herself” by Judy Blume. A father tells his young daughter, “Every new experience is an adventure. Life’s full of them. Do you think you can remember that?”
There are many ways to experience life’s adventures. Through books, television, movies and internet we have access to worlds we might never see or experience otherwise. I understand there is a difference and no passage in a book or video can convey the power and beauty of the real deal. Nothing can truly prepare you for that shiver of discovery you feel the first time you actually visit the Rocky Mountains or the Atlantic Ocean or see an original Picasso or Michelangelo. I have a list of marvelous places I want to experience and things I want to do. But in the meantime I have discovered more mundane adventures within my grasp that I suspect will, in the end, be just as memorable. So I leave you with my most recent special event and that is a trip to the imaginary world that comes out every Halloween. I spent yesterday as a “magic cat” with two princesses (specifically Cinderella and Belle - of Beauty and the Beast) and a fairy godmother (AKA Aunt Mary). We all had special powers and took great delight in waving our wands or twirling our tails to cast various spells on those around us, mostly involving making favorite foods for dinner and not hissing (that would be my job).
Please note my own real black cat giving us the skeptical eye!
Who hath despised a day of small things? Zechariah 4:10
Did you do anything special, a trip or event, this past year?
Naomi & Neil Arnold
My husband, Neil Arnold (Lary 2011, head and neck cancer since June of 1993) and I celebrated our 50th anniversary on January 2, 2015. His original cancer in 1993 was stage 4 squamous cell cancer at the base of the tongue. He had radical neck dissection and was cancer free for 6 1/2 years. He had several reoccurrences over the next 6 1/2 years and in June of 2009 he had a second radical neck dissection. His laryngectomy surgery was in August of 2011 and he had another tumor removed in March of 2012. Six weeks later the cancer was back and inoperable. At that time he started oral chemotherapy and continues to be on a two week on, one week off program that has been successful. Needless to say, we did not expect to celebrate a fiftieth anniversary.
We took three cruises in 2014-5 to celebrate. The first was the Web Whispers cruise to Alaska, a pre anniversary cruise with six other larys and their companions. We enjoyed every minute of the breathtaking Alaskan scenery and getting to know his fellow lays. We even saw Mt. McKinley on our tour to Denali!
The second cruise was over new years with our immediate family: our son and daughter in law, daughter and son in law, daughter, and five grandchildren, ages 18-13. We spent two days at a resort in Puerto Rico before a Royal Caribbean cruise of the southern Caribbean. We spent seven fun filled days with everyone taking advantage of beach time to riding a Segway on the beach, swimming with the dolphins to snorkeling and scuba diving, visiting a spice factory and seeing amazing waterfalls and much more. Every night at dinner one of our children or grandchildren read from a book of quotes about love that our son had compiled. We were on the ship's "Newlywed Game" and had a fun time embarrassing ourselves and our family. The last night of the trip was our actual anniversary.
Bob Bauer - Hayward, CA
The only special event my wife and I attended this year was the IAL in Baltimore. I demoed my Lary Snorkel and applauded two new swimmers to the swim group. Being first timers they did a great job. It was a great convention.
Bob Megrey - Brunswick, OH
This past Memorial Day, my wife and I decided to complete something off of our bucket list.
She had accumulated air miles from work and we used free miles to go from Cleveland to San Diego. We've always wanted to go to the zoo there.
Well we did more than the zoo. Our first day we went to see the Coronado Hotel. On Coronado Island. Very famous and old hotel. We walked the property and had a wonderful lunch outside while watching the ocean and the beach.
The next day we drove to the San Diego Zoo Safari park. About 30 mile north of San Diego.
We spent all day there. We went on a safari truck out onto the savanna and fed giraffes and rhinos. Got to pet both. Rhinos are actually very tame, just skittish because of poor eye sight.
My daughter drove down from Los Angeles and had dinner with us. She stayed to go to the zoo with us, and the next day we when to the actual zoo. We saw a baby hippo, a baby giraffe, a baby gorilla, a baby leopard. Along with the pandas. They are bigger than I thought they would be. We also went up in a hot air balloon and we absolutely had a ball.
I had no issue being a lary, but my wife (11 years younger) had difficulty walking the park for the second day in a row. I was smart, I rented an electric scooter. It was nice because it had a basket to carry our cameras and stuff.
So this November we are headed to an adult all-inclusive resort in Puna Cana for one week.
We've been there before and I had a ball. I wear a round inner tube and go into the pool. Of course the shallow end. But I soaked up the rays. And enjoyed the food, drink and kindness of the workers.
Rita Kinney – Aptos, CA
When I was diagnosed with my cancer in 1993, I thought my life would never be the same. This past August, my husband Jim and I celebrated our 50th wedding anniversary in Tahoe with family and friends.
Linda Palucci – Kissimmee, FL
Of course every day is special when we wake up and can still function. Thank you God. And living here in FL with year round good weather is special. But aside from day trips with the retirement community I live in, my "special trip" was to CT in the past couple of weeks to attend my granddaughters wedding. My biggest accomplishment was wearing high heels for the entire day, ceremony and reception. I live in flip flops, so you gals will appreciate this.
Had a great flight. Traveled with Terry, she's a friend of my daughter in law. Terry lives in Orlando so I drove to her house, and her son delivered us to airport. I don't do anything special when I fly, but this time I did have the new orange bracelet from Louis. I always tell anyone new I'm out with about my situation, like don't bother with mouth to mouth. Of course if the plane goes down that's the least of my problems. I don't mention my laryness to the crew. I doubt that life vest would do much for me, and I'm sure an old lady with a hole in her neck would be of much concern.
I make sure there's a couple of capable looking pilots and order up a couple of drinks. I really don't care too much for flying, but it is fastest. However, a couple of OJ's & vodka's calmed me down. It was good to see family and old friends. But I was glad to get home, and was greeted warmly by my cats.
Benjamin F Barnes III – Deltaville, VA
Class of 08
I have been a campground host on the Blue Ridge Pkwy near Asheville, NC for summers....speaking with my EL. Meeting, greeting, directing, helping, fee taking, phone call queries......lots and lots of folks know what a "Lary"sounds like. At 83 yrs young it keeps me going.
Scenery is fantastic, good air at 5000 ft. and campers are great people. Life was only interrupted by a laryngectomy...definitely not over....
Lynn Foti - Akron, OH
Yes, I did have a really good thing happen this summer. I finally was able to go to the IAL convention; in Baltimore Maryland, in June. It was everything I had hoped for.
Had a wonderful time, finally meeting the people I have been talking to online all these years, and getting to go to the VI was awesome, learned so much I didn't know. Also, because of the great guys, Tony Talmich, Bob Herbst, and John Isler; myself and Diane went in the pool, and learned how to do that and it was such a treat, having been afraid to go in the water since my lary. I will say, I probably won't try to do that on my own, though, without some support along.
I can only give my deepest thanks to the IAL, WebWhispers, the Lauders, and many others who helped to make this all possible, and without Pat Sanders, I never would have even tried. Thanks to all, and I can only say, this was a really wonderful thing, and I sure hope I will be able to go again in the future. What a glorious thing to do. It was loads of fun.
Len A Hynds – Newtown, UK
I have spent many holidays on boats, in my younger days cruising firstly on my 17' cruiser "Waltzing Matilda" a high speed craft with sleeping accommodations for the wife and myself, and my two small sons, and going at full speed by getting them to walk towards the bows, the boat would raise its stern out of the water, and it would simply fly along. Great Fun.
Then with the sea- going 30 ' Seamaster, " Pelican " a much more luxurious craft, cruising far off shore on many occasions. But now with age creeping on it had to be a 62 ' narrow boat on the Monmouthshire and Brecon Canal. It enters from the sea at the port of Newport in South Wales, and running alongside the river Usk far into the interior of mid Wales. But the Usk is a rushing river in places, with huge boulders, making it completely un-navigable with its rapids. The canal climbs up the side of a mountain through many locks but at one point crosses a very high viaduct to another mountain side, with the Usk far below.
It was such a calm holiday cruising those gentle waters and, with some strange experiences, such as a tunnel through a mountain, just wide enough for the boat to drive through in pitch darkness. The only trouble was if I went for an evening meal in an inn marked on the map, they were always down in the valley and those hills were very steep getting back to the boat.
A great holiday though. Brecon is a great town surrounded by the “Brecon Beacons" mountains where the Special Forces do their training.
Richard Crum – Jeffersonville, IN
In August we flew to England and did a cruise aboard Princess Cruise Royal Princess. The cruise stopped in Cork, Dublin and Belfast Ireland then on for 4 stops in Scotland and one stop in France for the Normandy Beaches.
We then flew to Ireland and spent a week driving on the left side of the road in Southern Ireland. I did all the driving and really enjoyed the challenge of driving on the left. Had a great time.
Lewis Trammell - Chicago , IL
What a great year for my group Lary's Speakeasy here in Chicago, both the live group and Facebook. Our live meeting celebrated its first year at Saint Xavier University by hosting the first All Chicago Laryngectomy Symposium which was something I worked for since I started Lary's Speakeasy on 3/17/2011.
The Speech students and patients alike received a great 5 hours of education and we hope to make this a yearly event. I also can't give out enough thanks to those Larys who are making our Facebook a huge success with a 400% growth over the last year which improves Lary community awareness. Our motto: We Live to Voice Another Way.
David Kinkead – Peoria, AZ
I was fortunate enough to take two trips this summer. The first was to a wedding in the Napa Valley of Northern California. My wife and my daughter and son in law went with us to the wedding. We spent two days wandering around the wineries in the Napa Valley then went to San Francisco for two days. We visited Alcatraz, little Italy for a great dinner, and some great lobster rolls on Fisherman's Wharf.
My second trip was to the IAL meeting in Baltimore. Along with all the good things from the IAL I was able to attend a baseball game at Camden Yards, the home of the Orioles. After leaving Baltimore I traveled to Atlanta to visit my other daughter and her family in Atlanta. While there I went to ball game at Turner Field the home of the Braves.
When I returned I went to a game at Chase Field in Phoenix, home of my Diamondbacks. For a big baseball fan, it was pretty neat to be in three major league ballparks within a week.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
Close Shaves with Saturn
They say the rings of Saturn are composed entirely of lost luggage! I have a treasured yellow suitcase that, by rights, should have found its way to that celestial abode many times. But somehow, due mainly to the kindness of strangers, it remains earth-bound and still willing to store my wipes and stoma covers and spare chargers and all the other accoutrements of Lary life.
Recently for example, it made two attempts to lift off. I was heading to West Cork for a week. It was to be a five-legged journey: first the drive from my mum’s house to my apartment where I would park the car. Then bus to city centre, another from Dublin to Cork, third one from Cork to Bantry, where someone would meet me to drive the last leg to a tiny village just beyond Glengarriff.
I set off around 8am on a lovely sunny Saturday morning. My mind takes its cue from the weather: When it’s pelting rain I see horrors everywhere, but if its bright and sunny I can’t imagine anything going wrong. So, as I passed the bus-stop just opposite my apartment block and with no one in sight I thought to myself “Why not leave the bag at the bus-stop? I’ll only be a minute …thieves don’t get up early on Saturday morning.” So I took the lazy option, dropped the bag by the garden wall beside the stop, parked the car, came back to the road, glanced towards the bus stop to find the complete absence of a yellow suitcase anywhere nearby. My stunned mind could only sing a ditty that goes:
There it was …
My new bike,
Front wheel, back wheel, pump and all,
Up against the wall …
So too my lovely yellow suitcase … zips, handle, wheels and all, up against the wall … gone! How could the lovely sunshine have lied about life being good? While my mind did whirly-gigs, my legs crossed over the road, drawn zombie-like to that empty patch of ground by the bus-stop. As I came closer, I noticed a flash of yellow in the tree above the garden wall ... Very bright flowers? Or …? Hope started fluttering in my chest and sure enough, the closer I got, the more the yellowness formed into an oblong suitcase shape, interspersed with some green patches. These turned out to be the branches of a leafy tree concealing the suitcase from view. Such relief … the sunshine had been right after all! A passing driver must have seen the bag, thought it would be safer hidden in the tree rather than on full view on the path. Thank you Universe, I sighed, throwing a wary eye towards Saturn
We remained faithfully tied to one another until I deposited the suitcase into the luggage hold on the Cork bus. There was an hour to spare between buses so I didn’t worry when we got delayed by traffic in Fermoy. But then the traffic jam stretched on and on and by the time we got into the bus station there was only about 7 minutes left. My bladder was now under severe pressure to relieve some of the fluid I had been dutifully consuming during the journey, and some of those precious minutes were going to have to be spent getting to the loo. As my mind doesn’t work well under stress, I got a little mantra running around my brain to help me through:
Go to ticket office, go to loo, get on bus…
Go to ticket office, go to loo, get on bus…
Now, as you might have noticed, the piece that was missing from the mantra was: collect suitcase. I dutifully did all that my mantra was telling me, and was sauntering happily towards the Bantry bus when the sight of its open luggage hold started some whirring motions in my brain. Luggage hold … yellow suitcase … Dublin bus… By now there was only three minutes to spare and with the slow pace of electrolarynx speech, I couldn’t get it together to ask someone in the queue to plead with the driver to wait for me. I raced around the station to where the Dublin bus had been parked, but like the new bike … there it was … front wheels, backs wheels, suitcase and all, up against the wall … gone!
I saw two busmen chatting and approached them. I had a bit of a time getting all the technology together – amplifier, microphone, finding the sweet spot for my electrolarynx – but luckily the men waited patiently, one of them even remarking “take your time, I’m well used to it”. That intrigued me – did he know another Lary? We’re few and far between – I’ve never met one outside of the ENT clinic. Sadly, no time for chit-chat – I told them my sad story. I wasn’t sure how much they understood as neither of them looked particularly concerned – in fact they seemed amused. I wished the electrolarynx could sound agitated, so as to propel them into action, but it just droned on flatly. However, one man led me around to an office, found an official and relayed my tale about leaving my luggage behind. So he had understood – relief! But there was still no sense of urgency and they even started chatting about some other business. He mustn’t have understood the “Bantry bus in two minutes” bit.
In despair I looked at my watch – time almost up – and made a pleading grimace towards them. They smiled and said goodbye as the third man led me down a side road to where the Dublin bus had been moved. There it was, waiting faithfully in the hold. I grabbed it, smiled a ‘Thanks a million” and raced back towards the station hoping against hope the Bantry bus would be delayed. The two busmen had resumed their chat and I smiled another ‘Thank you’ as I trundled by. One of them called out “Take it easy love, we told him to wait for you”. I was amazed – they had understood my Bantry bus panic too! Another miracle! And sure enough, there it was waiting for me, luggage hold still open, eager to give my yellow suitcase another chance for lift-off!
But we made it, me and my yellow suitcase, and even got home safely a week later. Next month it has the challenge of accompanying me all the way to Switzerland and back. I’m wagging my finger at it sternly: I said Switzerland, not Saturn!
Facts, not possibilities
One of the good things about cancer of the larynx is that it represents less than 1% of all cancers in the USA, and from that small population the majority will NOT get a laryngectomy. The downside is that since there are so few of us there is also a troubling lack of adequate care in many areas because those that should be able to properly care for us don’t have a lot (if any) experience or training in our care.
To compensate we may have to travel some distance to get whatever care or advice we need, rely on the experiences of other larys we know, or turn to internet sources such as WebWhispers to receive or give advice. Due to the above situations, as well as others, we constantly receive questionable, inaccurate, or unfounded information about various issues, don’t question them, and then we pass them on to others. Some of the things I hear and read are enough to make to you scream!
An interesting subject that’s been floating around lately is about HME’s (Heat Moisture Exchangers). Now don’t get me wrong…. I think they are a good thing and I use them under certain situations such as when the season changes and I have to adapt to those humidity changes until my body acclimates to the new environment of dry heat in the winter or air conditioning in the summer, but for me that’s usually for only a few days and then I’m ok. Plus I almost always wear one when flying because the air quality isn’t very good, and I think I have better protection from the germ bearing crowds than I would with my normal “foam patch” that I’ve been using for 26 yrs. now with no ill effect.
However, I do take exception when I repeatedly hear people say “everyone needs to wear an HME.” No they don’t! We are all different, we live in different climates, we engage in different activities, some hydrate better than others, and some bodies just adapt better. We, as a group, survived for more than 100 yrs. without an HME. Actually we did have HMEs back then but they were just called stoma covers and were made from cloth or some sort of foam. They filtered and warmed incoming air, and they helped retain some moisture when you breathed out. Does the completely sealed HME cassette do a better job than a foam or cloth cover that’s open on 3 sides? I’m sure it does, but then no one has proven in any way that “everyone” needs that extra protection. It’s enough to make you scream!
Another heavily discussed issue involves the manufactures claim that an HME should not be used more than one day. You know…the person that sells them says you shouldn’t use them for more than 24 hrs. because they are not as effective. Now they don’t really tell you that it will no longer work but they do say it’s no longer as effective. Well that may be true and to some degree that applies to most new things when you compare them to a used item. Is that new car more effective the day you bought it than it will be a year from now? Probably, but unless its been abused it will work just fine and get the job done. Do you throw away that new shirt or your new pants after you wear them once because washing may remove or render some element less effective and now it may not fit as well or look as good?
I have yet to hear to any conclusive proof or scientific evidence that using an HME for more than 24 hrs., or cleaning an HME will make it useless. Or, as was recently stated, can cause bacteria to accumulate in the filter and place one's health at risk. Of course anything is possible but in this case where is the proof, who did it happen to, was it from washing or was it just from breathing air? Or more likely has it ever even happened?
I’m sorry, but come on lets discuss facts not possibilities. It’s enough to make you scream!
Venice to Barcelona
My wife and I took a Mediterranean cruise in April of this year from Venice to Barcelona. The complete voyage was from Istanbul to Bergen, Norway and took 50 days. We picked a 15-day segment for our vacation, but we met several couples who were aboard for the entire journey.
We flew first to Atlanta, then on to Amsterdam and finally Venice. We arranged with the cruise line for 2 days in Venice prior to boarding the ship. We wandered around, spending most of our time just admiring the architecture, the people watching and especially the food.
Our itinerary after leaving Venice featured overnight cruising and early morning arrivals in the various ports. We stopped and spent a day in Split, then Dubrovnik (both in Croatia) and Corfu, Greece. We spent a day at sea rounding the boot of Italy and then spent a day in Naples, including a visit to Pompeii. Next were Rome, Florence, Monte Carlo, Toulon France and finally Barcelona Spain, where we spent 3 days prior to flying home.
It was the first time cruising for either of us and it was an exceptional experience. This was the maiden voyage of Viking Star, the first of 3 ocean cruisers commissioned by Viking River Cruises, and is Viking's initial jump into the ocean tour market. The main reason we selected Viking was their passenger market. The ships only accommodate 930 guests and they target adult couples rather than families with small children, or singles looking to party. Another reason was Viking's level of service and a third was their reputation.
All in all, it was an amazing vacation and one we will always remember and treasure.
And even when there was a mistake, it turned golden. Our flight home from Barcelona was delayed 5 hours on the ground and we were stuck in the plane that whole time (originally a weather delay, it was converted into a security exercise). Our connections home were all broken and we were put up in an airport hotel in Amsterdam. The next morning, we checked in for our new flights and I inquired about an upgrade for our inconvenience. We certainly were upgraded - to upper deck first class on our 747 flight home!
THE DEAF ROOF-TILER
It was 1944, the fifth year of the war, and I was a Sergeant Cadet with the East Kent Regiment,( The Buffs), but attached to a battery of three Bofors quick-firing anti-aircraft guns of the Royal Artillery, situated 50 yards apart on the East cliff ( The Paragon) at Ramsgate. I was their runner to carry messages in case of telephone breakdown with Ramsgate Fortress and Harbour HQ, which was in the Royal Yacht Club building, and run by the navy.
I was on duty every afternoon and evening and had the mornings free. I decided I needed to earn some money, so offered my services doing anything during mornings only, to Grummants the builders, and went out each morning with a very old deaf roof tiler, replacing roof slates that had been smashed or blown off in the constant shell bursts throughout the town.
The old chap had returned to work when the war started as all the young men had enlisted, as so many retired people did, and this old chap was a master at his craft. We pushed the barrow to the Margate Road, and put a ladder up to the roof level, carried the next ladder up and laid it on the roof so he could reach the damaged part. I simply hated ladder work, so he let me stay at the bottom, holding the ladder and just carrying slates up for him to use. Suddenly the shell warning siren started, and I knew we had just three minutes before it landed. That was the time it took for those massive shells to travel all the way across the channel, and from when our look-outs had seen the enormous gun flash on the other side.
Knowing that the old chap couldn't hear the siren, I raced up the ladder frantically waving to attract his attention, and when he looked at me, I pointed upwards. He smiled and nodded and I slid down the ladder and laid flat behind a low wall. Survival had become instinctive. The massive shell landed about 100 yards away, demolishing two more houses, and being very close to the railway viaduct which had obviously been their target. The old chap had not come down the ladder, and I feared he had left it too long and had been blown off that high roof with the blast, which again had broken all the windows, and made the wall I was behind shift slightly.
I raced up the ladder fearing the worst, and he was just sitting there admiring the finished job, smoking his pipe. He turned and saw me, and indicated that we should get the ladders down, and have a nice cup of tea from his flask, before going on to the next job. He had not heard a thing, and had been protected from the blast by the chimney stack.
Len A. Hynds
The Great Geezer Gazette!
Have you noticed that your usual daily routine seems to get just a tad more difficult with each week that passes?
Whether its taking out the trash, mowing the lawn, or just catching up with your emails...we are asking our aging bodies to keep up the work load as if we were 21 again. There is not a lot that can be done for many of our chores but for the things we do on our computers there are several tools to help turn back the hands of time.
One of the true hurdles that is given us as time goes by is our clarity of vision. While many of us wear glasses the varying things we ask our eyes to do during the day puts a strain on them and often makes the computer screen a bit difficult to endure. In the case of size we can change the font type and size for the best reading comfort. If you are a Firefox user you can add the extension called "No Squint" and now you'll be able to change sizes and colors for the font and background to make your hours looking at your monitor much easier to take.
Don't overlook the Windows Easy Access tools such as the Magnifier...with it you can increase your page size very easily and put it away when no longer needed.
Several other ideas offered by Bob Rankin include vision, keyboards and gadgets for the hearing impaired.
Recently there was a discussion on the use of virtual assistants or voice control for our phones and PC's. If you have tried Siri, Cortana or Google Now, you may have found it somewhat challenging to get the results you wanted. I am an EL user and found that by using a microphone (built in to my headset) that I was able to get excellent results.
The more you use this feature the more info the device can gather to help anticipate your future needs...the objective is to make your life easier and of course win over your digital business bucks.
Jessica Dolcourt from CNET provides a review of Siri and Google Now and the upcoming features we will soon see....
Just a reminder to always be wary of online scams and use caution and common sense while online. Our own diligence is the best anti-malware we can use and the most economical. If you receive emails asking for you personal info be absolutely certain who is asking before giving out any details. I have even called companies and questioned them as to why they wanted my info and to ensure that the email was actually from them.Recent investigations has uncovered some not so obvious terms from Lifelock...the company that says it protects your identity. Again Bob Rankin provides us with more background on the situation with Lifelock...
An item I have been dealing with lately, due to a change in my wife's health insurance coverage, is the cost of prescription drugs. Besides checking pharmacy prices online I fell back on an article from Bob Rankin and found it to be dead on. You can learn more at...
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