May 2017

 


 

 

Name Of Column Author Title Article Type
The Scuttlebutt Tom Whitworth Destination: My Old Stomping Grounds Commentary
VoicePoints Sharon Jamison, BSN, RN, CORLN Advance Directives: What You Need to Know Education-Med
Between Friends Donna McGary Travel Your Own Road Commentary
Speaking Out Members Travel as a Lary Opinion
Dear Lary Noirin Sheahan Hubble, bubble, toil and trouble… Commentary
The Speechless Poet Len A Hynds My Cruiser 'The Pelican' Prose & Poetry
Bits, Bytes & No Butts! Frank Klett Passwords Computers

 

 

INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp

COMMENT HERE
FEEDBACK

 

 

 

Destination: My Old Stomping Grounds & the IAL Voice Institute

A few years ago, I traced my Whitworth family tree as far back as 1607 somewhere in Virginia. According to an article I read recently, the first English immigrants to settle in the area of Tidewater, VA arrived in 1607, obviously by ship. A few years later, 370 to be exact, I arrived as a 19 year-old sailor. Yes, truth can be stranger than fiction. I attended a school in Williamsburg, and lived in Hampton for less than a year. Next, I was assigned to the Little Creek Amphibious Base and I lived for two years in Virginia Beach with my new bride.

 

The idea of being near the water had influenced my choice of serving in the Navy, so during those 3 years, I was living the dream! I’ve been back a few times for various reasons, military, business, and pleasure and actually tried to transfer back to the area at one time. This beautiful place is home to gorgeous views, fantastic food, and historical sites are in abundance; especially appealing for a nautical nut like me.

In a sense, I really am going home next month and I am truly looking forward to it. This time it is to attend the Annual Meeting and Voice Institute of the International Association of Laryngectomees. The event will be my fourth of its type since becoming part of this unique community. I haven’t missed one since my first. I honestly believe there is no better place for a Lary, Caregiver, or SLP who works with us to find themselves June 14-17. Regardless of your category, there will be lots to learn. Speech-Language Pathologists can earn up to thirty (30) hours of CPE credits at an unbeatable cost. Larys can learn about esophageal speech, get training on their electrolarynx or TEP voicing, try out new products from our suppliers, and more. Caregivers are right in the thick of all of this, learning along with the rest of us. There’s even a great break out session just for spouses and caregivers, led by a pro who understands where they are at. And yes, just being together is priceless, a family reunion of sorts.

Let’s face it, cancer, laryngectomy and this entire journey are devastating. There are the obvious health, rehabilitation, and recovery concerns, and many of us get hit hard in the wallet. It’s understandable for some of us to feel that we will never be able to pull off attending such an event. I remember when I thought that. I also remember how quickly I learned that nothing is impossible for a lary who wants something badly enough. There are ways to ease the burden of making this trip. Sharing the hotel room, ride-sharing for those driving, and financial assistance through one of several WebWhispers sources of scholarships can make the difference. Last year, I was saddened to have money left on the WebWhispers table. Though we have received some applications, funds are being assigned and assistance is still available. We even have assistance specifically for those in the western U.S. to help with their higher airfares. See the links below to register for the event, sign up for the WW dinner, and apply for a scholarship.


IAL Annual Meeting and Voice Institute, June 2017, Newport News, VA.
How to register and get details on the event:

http://theial.com/ial-voice-institute-and-annual-meeting/

 

Need help getting there?

Click here to submit the WebWhispers Scholarship Application:

https://webwhispersinc.formstack.com/forms/webwhispers_scholarship

For scholarship questions, email us at scholarship@webwhispers.org

Join us on Thursday evening for our annual reception and awards dinner:

http://webwhispers.org/activities/2017WebWhispersAwardsDinner.asp

Information on other events:

http://webwhispers.org/library/Meetings.asp


 

Y’all come see us!
Tom Whitworth
WebWhispers President

 

 


Advance Directives: What Everyone Needs to Know

 

When dealing with health care issues today, every person, regardless of his or her health status, should have legal documents in place that outline just what is or is not desired in terms of health care delivery if one is unable to speak for him or herself. These documents are called Advance Directives, and there are several types to consider. It is important to understand that these documents should be created when a person is healthy and fully able to communicate exactly what he or she may want or not want when the need arises.

 

The first document is the Living Will. This is the written legal document that outlines what kind of medical treatment and/ or life- sustaining treatments a person would want in the event of a serious and/or terminal illness. This document communicates the person’s wishes; it does not select a decision-maker who would speak for the patient in the event that the patient cannot communicate his or her wishes.

 

The Durable Power of Attorney for Healthcare (DPA) is the legal document that provides the mechanism to select a person to make health care decisions for someone who is unable to speak for him or herself. Of course, the selection of that person who will be making life and death decisions must be made very carefully. Normally, people will create a Living Will and Durable Power of Attorney for Health Care together to prepare for any eventuality that may occur. The Living Will can be written with specific instructions and directives, for example, when certain kinds of treatment are permitted, but other life-sustaining measures are not (i.e.: tube feeding or mechanical ventilation to support life when there is no hope for improvement or cure). Anyone over the age of 18 can initiate an Advance Directive. The document(s) should be notarized or signed in the presence of two witnesses who have no financial or other legal interest, and, it is recommended that the document(s) be kept in a secure place- not a safe deposit box- where they can be located easily by the person’s Power of Attorney (POA). Additionally, copies should be made and distributed to the person’s physician and preferred hospital or health care facility for inclusion in the medical record.

 

Another legal document that may be generated is a Do Not Resuscitate Order (DNR). This order, usually written during a hospital inpatient stay, is a specific directive to health care that states that a person does not want to have cardio-pulmonary resuscitation (CPR) in the event that the heart or breathing stops. Instructions for DNR can be specified in the Living Will, and the physician writes the order for DNR in the medical record for the health care professionals to follow.

 

One other legal document that can be made is the Out-Of-Hospital Do Not Resuscitate Order. This document can be thought of as an extension of the hospital DNR order. If a person is certain that he or she does not want cardio-pulmonary resuscitation, but, is living outside of the hospital environment, an Out-Of-Hospital Do Not Resuscitate Order can provide that information to emergency health care personnel (i.e.: EMTs, police or fire personnel, ambulance staff) who may be called in an emergency situation and the affected person cannot communicate. The document should be posted in a place where it can be easily seen (for example, the refrigerator door), and the person can have a Medical Alert bracelet made that will communicate the person’s wishes. The person’s physician must be involved with creation and signing of the Out-of-Hospital DNR document. Physicians’ offices should have these documents readily available.

 

It is important to note that any of these documents can be revised or canceled by the person who initiates the document at any time. It is also important to investigate your state’s laws about advance directives before proceeding. Some helpful online sites are listed below. Remember that you don’t have to be ill or have a terminal disease to have legal advance directives: it is actually a good idea to have your documents completed long before they may be needed.

Sharon Jamison, BSN, RN, CORLN
Clinical Care Coordinator, Head and Neck Center
University of Texas MD Anderson Cancer Center, Houston, Texas.


Resources:

AARP/ Advance Directive: Creating a Living Will and Healthcare Power of Attorney
http://www.aarp.org/relationships/caregiving-resource-center/info-11-2010/lfm_living_will_and_health_care_power_of_attorney.html

http://www.aarp.org/home-family/caregiving/free-printable-advance-directives/


www.familydoctor.org

 

Advance Directives and Do Not Resuscitate Orders
https://familydoctor.org/advance-directives-and-do-not-resuscitate-orders/

 

Aging with Dignity
https://www.agingwithdignity.org/five-wishes

 

National Hospice and Palliative Care Organization:
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3285

 

National Resource Center on Psychiatric Advance Directives
http://www.nrc-pad.org/images/stories/PDFs/fedaddirectives2a.pdf


 
 

 

 

 

 

 

 

Travel Your Own Road

 

Reading all the wonderful responses to this month’s Speaking Out question about post-lary travel reminded me once again how true it is that we are all different. Adventurous types remain adventurous, sometimes even defiantly so regardless of the physical challenges post-laryngectomy and those among us who weren’t much for venturing past their back door before rarely set off for new worlds now.

 

I am a huge fan of Tolkien’s Lord of the Rings and love this quote: “It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.”
But, as we learned in LOTR and SO this month some folk are quite willing to step out onto the road.

Others of us, not so much. Some of us are constrained not by the hole in our neck so much as the hole in our pocket. Travel, even modest road trips can be expensive and simply out of the question for that reason. Let’s be honest, travel is a luxury even if it is one we would enjoy, and not everyone does. Some folks just prefer the comforts of home and that is fine. I get that. I come from a long line of Maine Yankees whose idea of adventure was the Sunday drive predictably back in their own back yard before dark and in plenty of time for an early supper. A trip up to “The County (AKA Aroostook)” to visit the old family cemeteries was their equivalent of a world tour.

I must have been born under a wandering star because I have always suffered from wanderlust but unfortunately it has gone largely unfulfilled – kids and mortgages kind of got in the way over the years.

Now I have neither but am still on a limited budget/income. Although my grand-daughters are a powerful motivator to stay close to home just so I don’t miss anything, I would love to travel but simply can’t afford it. I have no problem traveling by myself to the IAL, for example, or taking modest road trips from time to time. But for a lot of us, especially women of a certain age, traveling alone is scary and sometimes downright impossible. Trying to use the courtesy phone for your taxi in a noisy airport with an EL can reduce even a strong woman to tears and that does not make for a pleasant travel experience. However, even those mis-adventures can turn into something wonderful when we discover that we can “rely on the kindness of strangers”. And no doubt Blanche DuBois (Streetcar Named Desire) would agree that the fact that said helpful stranger using the courtesy phone next to you is a tall and handsome young man only sweetens the experience!

So, if you want to be an armchair traveler and prefer the adventures you find in your own back yard to those you find “stepping on to the road” that is fine. I have great tales to tell just from my own limited travels and I bet you do too.


 

 

 

 

 

 

"Has your laryngectomee affected your vacations or how you travel?
If so please tell us how.
If not can you share a special trip or adventure?"

 


 

I have traveled many times after becoming a laryngectomy. I had only one issue. I always make sure that I tell the people up front, especially when going through security that I cannot talk without my EL. The only issue I had was once when I got through security, I could not find my EL. Fortunately I was with my wife and she figured out what the problem was and explained it to the security agent. When she understood, she told us that she thought it had fallen out of my bag and put it inside. Of course it had gone to the bottom so I had trouble finding it and I was very thankful, that it was my bag she put it in. I have learned to keep a spare with me when I am traveling, just in case something happens. I also always keep it on a strap around my wrist when I am around the water.

My most memorable trips have been to the IAL conferences and the WebWhispers cruises we have gone on. We had a lot of fun and meet so many good friends that those trips are special.

Ron Mattoon - Seattle, WA
2010

 


 

On the subject of holidays etc. I am just approaching the four year anniversary of my total Lary. I have been to Australia twice and am presently sitting overlooking the beach on the Gold Coast. We will be returning to Manchester UK on Sunday. I have had no problems at all. Probably less mucus than normal but no problem on the out ward flights (14 hours and 8 hours.)

Try to keep positive and have a very understanding wife

Ian Coates - Manchester UK


 


 


We have traveled the world for many years. To celebrate my 86 yr. old husband's survival and first year as a "lary", we and my son and daughter in law, in February, returned from our great Mekong River adventure that started in Kunming, China, continued to Thailand and was completed in Vientiane, Laos. We flew from Houston, TX, a 30 hour trip, with Ira using an Atos Micron HME. He did not have to use the small aerosol water container that we'd prepared; he didn't cough even once and had no problems with food intake though it was pretty bad airline fare. We rented a satellite phone in case of emergency and carried on board all supplies he'd need for the 3 weeks ahead in a cotton sack placed into his backpack. if luggage was lost, his only extra need would be hydrogen peroxide, easily available in any city. Throughout Asia, we needed different plugs for our tablets and phones; our hotels thankfully provided them.

The 5 hotels, ranging from 3 to 5 star, convention to boutique, all presented just one problem: poor bathroom lighting. We always travel with flashlights, but I was glad that I'd also packed small headlamps. The head lamp was perfect for his lary care. The boat, Pandaw Champa, is a 14 cabin river boat, on which we spent 7 nights. It was great, but I requested and they complied, that they remove the covers of the bathroom light fixtures. The sack of supplies was easily hung by its handles on a towel hook.

We didn't need to use the "extras" I'd packed: a collar in case his lary clips wouldn't stick, and a collapsible cup. Yet I'd include those again. We used a jar of saline plus an eye dropper rather than saline bullets; the small brush from a McKesson trach kit served well. Though at home, we clean and change his tube in the morning, we did this leisurely in the evening because mornings were busy with tours.

There are, on this part of the Mekong, no piers, docks to facilitate debarking and embarking. The boat would edge into a sand bank, a crewman with a rope then tied onto a tree or rock further up the bank; someone with a hoe would cut steps into the hill, or find the path that the villagers used, then the gangplank would be assembled and out we'd go with walking sticks and cameras. It was tough going, and there was always a kind, caring crew member to help Ira navigate the rough terrain.

Our fellow passengers were from the UK, Australia, Malta, Sweden, Austria, Germany, Switzerland and USA. All but one was fluent in English and were seasoned travelers. Dining was on the upper open deck with tables seating 4-6. Ira had no difficulty in participating in conversation in these small groups. We had a marvelous young chef and Ira gained about 8 pounds enjoying his menus and the local produce. A gluten free diet was required by one passenger and she was delighted with her meals. Happily, we experienced no difficulties throughout this trip and would advise anyone who wants kind, loving, respectful care and wonderful memorable adventures to book a river voyage in SE Asia.

Ira and Tama Nathan – Shreveport, LA

 


 

Being a Lary hasn't affected my traveling. I did develop a travel kit for my supplies by using a fishing tackle box with adjustable compartments and it fits neatly into an attaché case. With proper planning travel shouldn't be a problem for us Lary's.

My first long trip as a Lary was to the Galapagos Islands where I snorkeled for the first time as a Lary. We cruised all the islands and did a lot of walking. Being on the equator you need to be sure you drink a lot of water. Happy travels to all my fellow Lary's.

Bob Bauer - Hayward, CA
Class '08

 



On my 1st anniversary as a laryngectomee, we went to Ireland for a family wedding. We brought special equipment for our electrical outlets. In the morning we found out we used it wrong and it shorted out as the coffee pot didn't work when plugged in. I looked at my husband as I realized my Servox probably wasn't charged. As it started losing its power, we contacted the Irish cancer society to find a loaner. Thankfully they had one and loaned it to us with a charger for our 3 week trip. Never any questions and we mailed it back when we got home. This was in 1994 and in 1995 I was able to use the TEP and I love it.

Rita Kinney – Aptos, CA
March 1993

 


 

My laryngectomy at Mayo Clinic required either a flight or road trip of 500 miles one way from home ... pre & post op. So I can say, I never stopped traveling.

For example: Following my surgery and radiation our family needed a vacation in sunshine so we took two cars (8 of us) and drove from MI to FL for two weeks in a rented house on the beach. Seven months post op I flew alone from MI to CA to attend my uncle’s Memorial; that included my first experience with being “bumped”, and advocating for myself with an electro larynx that was so bad they don’t even make them anymore. Ending up with a bonus of 1st Class seating on the next flight; my confidence was building. Nine months post op I fulfilled my promise to my teenage daughter and her high school French club that I would go with their group (ALSG; American Leadership Study Group) to study French at the University of Nice in Nice, France for the month of July. I thought that would be a challenge for me as I was one of the 10 counselors and 350 teenagers (each counselor had 35 students to watch over). It was June/July, 1979, and the Basque’s were raising hell as we landed in Madrid, Spain for 3 days touring, and when we left by train headed north to France with burning tires on tracks that stopped our train’s movement.

Managing lost passports, cameras and luggage was one way to improve our conversational Spanish and French… even on the telephone. After that month my rehabilitation seemed easier somehow, and so was my written and spoken French. Newbies need not fear flying alone or with 350 sleepless teens, even over the oceans. We can do so much more when we are cautious, but not fearful when taking “first time risks”. 1979 was a memorable year because of the above adventures. The experiences made a difference in how I have lived my life as a total laryngectomee since October 2, 1978. I must add…esophageal speech fits my lifestyle of freedom perfectly.

Elizabeth Finchem - Tucson, AZ



 

I had no trouble, on vacation in the Philippines. Most were patient with me, using my phone to text or to write on paper.

Ray Nickolson – Brooklyn, NY

 


 

In the 24 years since becoming a laryngectomee, I'm not aware of any change in my travel style. I never was a comfortable air traveler, and with the tendency to cram us in more and more, I avoid it if possible.

I do most of my travel on the roads. I have a 34 foot Fifth Wheel Trailer and the truck to tow it. My original intention was to do more travel with my wife after both of us retired, but she acquired more health problems and that travel never materialized. We, or I alone, took the trailer to a number of IAL Voice Institutes. We also took the trailer to Maine each summer for a couple of weeks.

In 2004, we decided to spend two weeks in Bermuda in February. This was probably our most memorable trip, but her health issues limited what we could do.

Then in 2005 we rented a cottage in Jekyll Island, Georgia for two weeks in February. This, again, was a great trip. It was even more limiting for her. After two weeks in Maine in August, she died unexpectedly.

Since then I have limited my travel to a single trip with the trailer. I now, as an 80 year old, no longer go to Maine, but camp at a Connecticut campground that is not nine hours away.

My only tip for travel is to recognize your limitations, if any, and go with them. Don't try to be a hero.

Carl Strand - Mystic CT
Laryngectomy 1993

 


 


I bit the bullet and decided a cruise was on the cards. I took far more med items just in case (including a spare TEP) and my nebuliser. We told the cruise company before hand and had a fantastic time! It was so good we went again this year. I felt safe and secure even on shore visits in other countries but again lots of spares with me including the excellent Country wide crib sheet in loads of languages.

Do it my friends, after all you only live once!
May your God bless you all,

Trevor Hutson - Stony Stratford, UK

 




As a lary I have been skiing several times. All were superb holidays. Using an HME Xtraflow was okayish but mucus meant going through quite a number. I ended up just putting a bib over the baseplate with no HME which with a snood and anorak done up was no problem.


Have also been e-biking in the Austrian lakes area which also proved to be a superb holiday. Again I wear a bib with no HME.

Andrew Pett - Reading, UK

 


 


I carry an emergency bag with me whenever I leave the house, as do most Larys I've talked to do. I travel every week to work, so this bag is my 'travel bag' as well. I do bring portable humidifiers for the hotel and the office and I do have to keep way ahead on ordering supplies.

The only issue I have had with air travel is in propeller driven aircraft - the noise is generally too harsh and I have to use my tablet computer to write down my beverage request :) Otherwise, no issues at all; the flight crews have uniformly been very gracious and helpful. Twice my emergency bag was stopped by the security folks, but I have never had anything questioned or removed once they realized what set off the alarms.

Being a Lary certainly hasn't affected my being able to travel, either for work or for vacations with my wife. Since my surgery in 2009, I have been on the road for work since early 2012 and my wife and I have been to the Grand Canyon, San Francisco, northern Europe twice, a Mediterranean cruise and China, plus the 2011 IAL convention in Kansas City.

Loyd Enochs - Evansville, IN
December, 2009​



 

I used to travel a lot prior to my cancer and surgery. I am once again strong enough to do so. Last December l went on a 4 day cruise and it was wonderful. No issues. I just made sure l had all my supplies, meds, and humidifiers. Always traveled light, now l think my medical stuff takes more room than my clothing! Will be traveling to attend the IAL Conference in June and plan on another cruise this December. I really would like to travel in an RV and see the country. Maybe someday.

Margaret Beck –Deltona, FL
4\15\15

 



Next month’s question is:
Other than the loss of your voice, what is the biggest change
in your life as a result of becoming a laryngectomee.

 


 


 

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month. 

Staff of Speaking Out

 

 

 

 

 

 

Hubble, bubble, toil and trouble…

My first post-laryngectomy trips were for weekend breaks with my friends Denis and Mary. I was still undergoing radio and chemo-therapy at the time, so had little or no energy. Denis and Mary’s home in Co. Wicklow was the perfect place to rest and recuperate – a timber frame house beside the sea and a wet-land bird sanctuary. They have a wonderful garden with a lily pond, and grow much of their own fruit and vegetables. Add in a fluffy cat and a hen-house with a few chickens running around and you are getting the picture of the rural idyll to which I was lucky enough to be invited for weekend breaks during my early lary life.

 

In her own words, Mary is “Unarmed and Fabulous”. She was born without arms, but her intelligence, her big generous heart, her spirit along with super-flexible legs and nimble feet have done everything that us “Armed and Dangerous” folk have done and more than most. She is a superb painter of land, sea & townscapes, still-life and portraits, all in vibrant colours and an arresting style. She’s also a wonderful cook and gardener, a technology wizard and if there is anything a computer can do, Mary knows about it. Denis has been a meditation buddy of mine for over a decade which forms a deep bond of trust. I knew my weekend visits wouldn’t require any effort to socialise. I could depend on them to accept me just as I was, silent, nauseous, exhausted, and let their beautiful home and their friendship be my weekend-therapy.

The journey, which I would have done without a thought for years and years previously, now seemed like a marathon. Pre-laryngectomy, a weekend visit would have meant a back-pack with pyjamas, a few smalls and a toothbrush. Now the car was filled with equipment – feeding pump, nebulizer, suction machine, trachi-masks, aspirators, batteries, chargers, tubes, connectors, swabs, bandages, forceps, syringes , bibs, a wide variety of medicines plus bottles of saline, sterile water and tube-feeding liquid. Plus of course my electrolarynx, though I could hardly use it at all in those early days, and so I had a white-board and markers and a boogie board as well. And not forgetting my anxiety pot. The surgeon inserted that inside my throat when he took out my larynx. Day in, day out, it boiled and bubbled, hissed and spat. Was it going to miss a weekend break in the country? No way!

Apart from my anxiety pot, which I tended carefully all by myself, my friends did all the packing and unpacking. All I had to do was stagger from house to car and out again at the other end. Needless to say they did the driving, bless them!

Standard household stuff is not designed for the Unarmed and Fabulous so Mary has put lots of effort into finding the right furniture and gadgets to suit her needs. Perhaps it’s this constant need to ask “What Works?” that has given her a flair for finding super home comforts. This really stood to me on my first visit. She was waiting at the door to greet me. But I was in no mood for hugs, feeling dizzy and sick after the journey and badly needing to lie down and start a nebulizer. I shook my head and she immediately got my message and guided me indoors towards a sofa that would have looked in place in the space shuttle. It had a zigzag base that elevates your knees and keeps your backside bottomed out just as it likes to be, while the rest of you inclines gently upwards towards a head and neck rest. Oh the delight of creature comforts! The moment I got myself and my anxiety pot into it we both started to feel better.

During my first visits I did little else but recline on that wonderful sofa and watch the clouds go by or the cattle grazing in the meadow outside. But doing nothing is actually my favourite pastime –mindfully of course. Not that I was filled with peace and joy. My anxiety-pot was still on full throttle, and it kept me company all the time. But with mindfulness and my soft, curvy sofa-bed, and with Denis and Mary coming and going in the background, I could just watch it simmer away. Each ‘What if…?” or “How will I …?” or “I’ll never be able to ….” that bubbled up from my throat simply evaporated into the wide open space of sky and meadows. Then another bubble, and another, each dissolving into thin air. I couldn’t stop the bubbles forming, but resting attention on the peaceful scene around me, I could track them till they disappeared. The fading away of trouble is very comforting and every moment felt healing as the pot of anxiety hubbled, bubbled, toiled and troubled.

 

One morning we were out on the veranda and I was well enough to try out a few words on the electrolarynx. Mary could understand me reasonably well, though I think it was more from lip-reading than from any sounds I was making. But it felt good to be communicating again. Mary made some lunch, and although I couldn’t eat anything, I enjoyed watching them eat their meal. It was one of the unexpected pleasures from those early post-surgery days – I didn’t miss eating at all, and instead got vicarious pleasure from watching others eating! My favourite TV programs were cookery shows. The thought of food was giving me at least as much pleasure, perhaps more, than the taste of it had previously done. Simpler too – no chopping or peeling, no washing up, and it couldn’t make me fat!

 

Which reminds me of another unexpected laryngectomee pleasure that appeared while I was watching a film on TV. I found myself marvelling at how well all the people could talk! It was the feeling of awe and wonder I’d previously got from watching gymnasts or ice-skaters. Speaking now seemed like a similarly wondrous skill and an incredible gift. I didn’t get that buzz in real life – the fact that I couldn’t join the conversation quelled any joy. But while watching films on TV, when there was no expectation for me to join in, I would be in a daze of admiration for the fluency of all the actors. Even the children had mastered the art! It didn’t really matter whether the film was good or bad, the fact that all the actors kept talking was enough to keep me glued to the screen.

 

But back to the morning on the veranda watching Denis and Mary eat lunch. The sun was shining, my few words on the electrolarynx had been understood, I was in my favourite sofa. For a few blessed moments my anxiety-pot stopped bubbling. In its place came a very intimate sensation signalling total acceptance of my laryngectomy state. My whole body and the world felt warm and soft and my mind was totally at peace. Nothing was amiss and having an intact voice-box wouldn’t have added a jot. It was a very simple, ordinary moment, no trumpets blaring from the sky, but it showed me the deep happiness that would come when I could fully accept myself with all my limitations, including my lary state. Although the feeling disappeared after a few moments and my anxiety-pot started bubbling up again soon afterwards, the memory sustained me and gave me confidence that I would be able to live lary life well and eventually achieve that lasting happiness.

 

Almost four years later, my anxiety pot is much quieter. For sure, life has its ups and downs, but overall I can say that I’m happier than I was pre-laryngectomee. I know I’m going in the right direction, and that’s the main thing. Thanks to Denis and Mary for getting me out on my first few trips, providing lots of creature comforts, a setting of great beauty and the security of long friendship. With all that came the moment of blessing and an assurance that laryngectomee life is not just hubble, bubble, toil and trouble. It’s a treasure to be cherished.

 

 

 

 

 


 

My Cruiser 'The Pelican'

 

It had been a marvellous holiday, in my 30 foot Seamaster Cruiser, travelling from our marina moorings at Allington on the Medway through the tidal lock, along the length of the meandering ever-widening Medway, past the towns of Rochester, Chatham and Gillingham, to stop overnight in Stangate Creek, just a short distance from the open sea at Sheerness. It was a notorious bad holding ground for anchors, so I stayed awake that first night, watching the position of the naked flame burning some three miles away on the Isle of Grain refinery, to ensure our anchor was still firmly embedded, and we weren’t drifting.


The weather forecast next morning was not good, and I had to rethink my plans of cruising up the exposed East coast, to cruise inland into East Anglia. Tilly was never happy at sea travel, and was happier when we were cruising inland rivers. We discussed the problem, and I proposed that we went inland up the Thames Estuary, and we should reach the narrower part of the Thames only about half a mile wide beyond Gravesend well before the storm reached it, and it was only about 18 miles distant.

We decided upon doing that, and on making an early start I entered the Estuary and turned left beyond the Grain Tower, and its buoy marking the dangerous sand spit. I marked the new chart for Len, who was about 13, and let him steer by compass and eventual buoy observance, keeping well out of the deep water channel, but far enough out to miss sandbanks beneath the surface off Allhallows and Cliffe. I got a few hours sleep.

We travelled many miles on that holiday, to beyond Oxford, where the Thames actually is sometimes called The Isis. On the way back three weeks later, we went through the last tidal lock and after a few miles I decided to travel up the Grand Union Canal for about 15 miles where Tilly’s distant cousins lived in a cottage on the banks. By lowering the masthead we managed to negotiate all those road bridges, and spent a good 24 hours with her cousins.

Unfortunately some of those locks had not been used for years, and took time to negotiate, plus the fact one engine filter got fouled with a fine weed, meaning another delay whilst I stripped it down.

I had to make the journey though the tidal Thames with the tide, but a plastic bag wrapped itself around the prop just before the House of Commons, so dropping the anchor in mid-river I had to go over the back and underneath to cut it free.

These unfortunate delays had put me behind with my planned schedule, and going through the London bridges was quite hair raising as the outgoing tide was in full force, and the speed of the water through the arches was like going down a chute, and with the speed of the river more than the speed of my 30 foot cruiser, steering was almost impossible. Passing through the Thames Barrier things seemed to ease as the river widened, and I kept near to the Kent side, and by the time I reached Gravesend, the tide was on the turn. It was now late afternoon, and I still had six hours of daylight left to negotiate the wide Estuary, and then to turn into the Medway, where I knew I could find Stangate Creek, even in the dark.

The weather forecast a bad storm coming down the North Sea towards the Estuary, but the forecaster on the radio thought that it wouldn’t reach the Thames Estuary until the middle of the night, by which time I should be safely moored inland at Stangate.

Tilly and I discussed if in fact we should tie up to a jetty at Gravesend, and Tilly and the two boys, Len and Nicholas should travel home by train or taxi, whilst I stayed with the ‘Pelican’ until the weather cleared before I brought her around.

 

It was decided to press on, and I had travelled about 9 miles along the estuary, and the wind increased so much, that my binoculars could not pick up the next navigation buoy, so it had to be by dead reckoning with the compass, and the incoming waves were becoming so high that we were really close to the next buoy before we could see it. I knew that it would be more dangerous to try and turn to run before those View of rough sea from boatwaves back to the safety of Gravesend, whereas just off the Medway there was always more of a gap between incoming high waves, and all cruisers of the Pelicans length, had no real deep keel, and could easily be turned over if struck by a high wave on the side.

 

We were now close to the Medway, and I steered past it watching for a gap in the waves, so I could do a swift turn, to get them behind us. It was now raining, which seemed to be skimming the wave tops, mixing with the curling wave tops which were blown into the air.


It was then that Len pointed out to me a tiny speedboat containing a man and a woman, and they appeared to be in trouble as they tried to ride the incoming waves. They kept vanishing in troughs. I kept going towards them, and when close enough shouted for him to turn, as he was heading out to sea, and away from Sheerness Beach from which they had come. I turned and sheltered them back towards the beach. His wife was terrified, and I offered to take them aboard and tow his boat into Queenborough, but the fool would have none of it. They had no life-jackets, anchors or flares.

I got them within sight of the beach, but had to leave them, as I was perilously close to the sandbank beneath me. Luckily the coastguard had been watching, and had alerted Manston Helicopter, who saved both husband and wife as their boat sank beneath them just hundreds of yards from the beach.

These idiots who launch their boats from a beach, with no experience, have no ideas of the dangers involved at sea.

In view of that week-end sailor giving poor Tilly a few more shattered nerves, I sold the dear old Pelican shortly afterwards. What really did it was seaweed on the mast rigging, showing how many times we had dipped under curling waves.

Aargh Well!!

 

 

 

 

 

How Much Do I Hate Passwords? Ask Just go ahead and ask...I Dare you!!


I actually remember my early years of learning the basics of the Personnel Computer and the many new terms I needed to learn to be more proficient. I had the most trouble with the difference between passwords and usernames. Now that I got that straight the two things I hate most are usernames and passwords.

I have a running beef with the companies that are "helping us out" by insisting that we change our passwords every 90 days and each change must be new & unique. It seems this kind of rule was generated by some one with lots of time on their hands.

My password/passwords have worked just fine for me for several years so just how does changing them make them any more secure? I suppose that if the Kremlin or the DNC were sitting on my electronic footprint trying to crack the code every second it might just help. I'm not really sure what they hope to gain from my accounts...no big bucks there! It seems more likely they are trying to absolve themselves of any liability should your information become comprised.

This leads me to an article by Bob Rankin regarding hacked email accounts or perceived hacked accounts. Many times, as Bob explains, there is no compromise other than the leak of some or all your contacts information. Facebook is the most notorious for contact leaks and generally though "operator error". Read Bob's article to learn more and just how we should react to the situation should it occur:
http://askbobrankin.com/was_your_email_account_hijacked.htm

Another security issue has a more viable solution (depending on the threat) which is the use of a VPN. A VPN ( Virtual Private Network) shifts your actual location to another to prevent your ISP (internet service provider) from tracking you based upon your location. Using a VPN is very easy to set up and use but unless you have a specific reason for using it may be more trouble than its worth. The average person has no reason to need or want a VPN...unless you are being a super spy in your off time. One thing to consider before using a VPN is that most shopping services and video providers (NETFLIX, VEMEO) use your location to determine if you are in an area authorized to view the contents they provide IE: sports are based upon regional rules for transmission. Your use of a VPN will make you appear to be unauthorized.


The reasons and strategies for using a VPN are outlined for you by Leo Notenboom:
https://newsletter.askleo.com/ask-leo-649-vpn-use/

 

One of the hot sellers lately (based upon the ads per hour) are the many companies offering genealogy services based upon your search criteria or DNA. The DNA can hardly tell you much about your ancestors except they came from somewhere in Europe or Asia. As for your eye color you can look in the mirror and save some cash. As for your search criteria that can be much more useful in providing you the real information you're seeking. Generally speaking they will lead you down the rabbit hole just so far and then demanding money to "unlock" the secret door. At this point it is your choice to pay or to remain in the dark. Bob Rankin has done a nice job of compiling a list for us of the many sites available. Read through his users comments also to get a better look into the benefits of the various services:


http://askbobrankin.com/roots_genealogy_research_online.html

If you are an online shopper you may be interested in Bob Rankin's article on the many shopping services available:

http://askbobrankin.com/alternatives_to_amazon_shopping.html

 

And just the usual reminder to make it a point to visit our forum and Facebook page for more helpful ideas and information on your new lifestyle.

 


 

 

 

 


 

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