September 2012

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders The Old Is New News & Events
VoicePoints E Feldman, MS,DMD,MS Dentition After H&N Cancer Education-Med
WebWhispers Columnist Dorothy Lennox Luminaud Emergency Communication Education
Between Friends Donna McGary Help From My Friends Commentary
Speaking Out Members What Advice Helped You Opinion
Travel with Larys D McGary & P Sanders This Lary Life Travel
The Speechless Poet Len A Hynds Duchess Of Richmond's Ball Prose & Poetry
WOTW Editor Rose/Powell/Fein Feedback Comments Opinion

 

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

 

COMMENT HERE

FEEDBACK

 

 

 

 

 

The Old is New!

 

Just when I think the whole world has changed, I find a new study of an old cure and the headlines today in August 2012 read:

1. Mom Was Right: Honey Can Calm a Cough

2. Honey really helps to quiet nighttime coughs

3. A Spoonful of Honey Helps Cure Sleepless Nights from Coughing

4. Honey can ease cough symptoms in kids: study

So let's see what WebMD has to say:
"Aug. 6, 2012 -- Ask any parent: When your little one has a cough, no one gets any sleep. But 2 teaspoons of honey before bedtime may safely relieve your child's coughing and make sure everyone gets their ZZZ's."

That's the main message from a new study in September's issue ofPediatrics.
"Today's parents don't have many options to safely treat colds and coughs in their young ones. The American Academy of Pediatrics states that over-the-counter (OTC) cough and cold medicines don't work for children younger than 6 years and may pose risks. The FDA takes a similar stance."

Gramma was right when she went for the honey... but, likely so was Grampa, when he called from the other room, "Add a teaspoon of Whisky to that." Bet they haven't tried a study on that!

However, that does bring up the subject of FLU SHOTS. It is time again to plan for one. The new Flu Shot is still the old stick in the arm. Others may be able to get the one you sniff... not for us.

The flu itself might not be too bad if you got a light case but the complications are usually worse for older people, and for those who have had cancer, or are undergoing treatments, have....asthma, COPD, heart, lung, endocrine, kidney, liver, types of disorders. Is there anything not covered? I will just go get my flu shot.

Many can get it at their own doc's office or clinic. I have seen notices for Walgreens, Walmart, and even local grocery stores will be setting up clinics.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 


 

Changes in Dentition Following Head and Neck Cancer Treatment

Elizabeth Feldman, MS, DMD, MS
MD Anderson Cancer Center Orlando


There has been great progress in knowledge of head and neck cancer and treatment with radiation and/or chemotherapy. However patients undergoing such treatment still encounter oral and dental complications. The dental complications are manifested by xerostomia, candidiasis, periodontal disease, osteoradionecrosis, and trismus.


Xerostomia: Xerostomia is known as dry mouth. Salivary glands are sensitive to radiation treatment, causing changes in the quantity and quality of saliva produced. Xerostomia leads to a shift in salivary pH, providing a highly acidic oral environment and resulting in rampant dental decay, sometimes evident as early as 3 months after completion of radiation treatment. Patients will develop more dental plaque due to dry mouth, increasing the presence of bacteria, gingival inflammation, and dental decay also known as radiation caries. Patients who suffer from chronic dry mouth are at risk of extensive dental decay, because the protective mechanism of saliva is diminished. Dental decay after radiation treatment is very unique; it can destroy the teeth from within in a very short period of time. Radiation caries will spread from tooth to tooth. This is evident with noncompliance with oral hygiene, including disuse of fluoride.


Candidiasis: Candida is a fungal infection most commonly referred to as Thrush. The increase of thrush is encouraged by radiation-induced dry mouth. Thrush can present as white plaques, redness, and a burning discomfort to the tissues of the mouth and tongue. Commonly patients who are denture wearers will harbor yeast and bacteria within the dentures. Dentures are readily colonized with microorganisms and act as reservoirs for infection, therefore predisposing patients to candidiasis.

Periodontal disease: Radiation therapy decreases oxygenation and blood supply to the tumor bed. Teeth are attached to the dental sockets within bone by blood vessels and ligaments. Teeth and surrounding soft tissue that are in the direct field of radiation will be devascularized, the blood supply and nutrients to the tooth will be diminished. Coupled with dry mouth, the overgrowth of bacteria will accelerate the periodontal attachment loss from the tooth. The progression of periodontal disease due to noncompliance of oral hygiene may precipitate a need for dental extractions.

Osteoradionecrosis: Osteoradionecrosis (ORN) is caused by devascularization and deoxygenation effects of radiation therapy on bone. Radiation therapy reduces blood and oxygen supply to the tumor, however in the way of the tumor are tissues, bone, and teeth. Clinically, ORN presents as exposed bone in the oral cavity. Commonly, ORN is associated with extraction of teeth after radiation therapy due to lack of blood and oxygen supply in the dense bone. Micro-trauma of the tissues in compromised bone may also lead to ORN. Any oral surgical procedures performed following radiation treatment may result in delayed wound healing as well as possible pain and discomfort. Prior to any extractions the dental professional must attain records from the radiation oncologist of exact radiation fields. Hyperbaric oxygen treatment must be considered prior to extensive extraction of teeth. Hyperbaric oxygen treatment promotes oxygenation and vasculariztion to the wound site supporting the healing process.

Trismus: Trismus is evident when the patient gradually loses mouth opening. This condition may be intensified by surgery prior to radiation. Patients most likely to develop trismus are those with tumors of the palate, nasopharynx, and maxillary sinus. Radiation of the highly vascularized temporomandibular joint (TMJ) and muscles of mastication will lead to trismus. Chronic trismus gradually leads to fibrosis. Trismus impedes proper oral care and treatment and may cause speech/swallowing deficits.

Post treatment oral care
Most patients have a high risk of radiation caries. The risk of radiation caries can be greatly reduced with meticulous oral hygiene, daily fluoride application at home, and frequent professional dental care. A home care dental routine recommended to patients with teeth is the following:

(1) Floss each tooth and brush with toothpaste.

(2) Brush the tongue with a tongue brush or a soft bristled toothbrush.

(3) Rinse with a baking soda rinse. Baking soda helps neutralize the mouth. One teaspoon added to 12 oz. of water. The baking soda rinse can be used throughout the day.

(4) Once a day use fluoride in fluoride carriers made by a professional dentist. Place 1.1% sodium fluoride or 0.4 %stannous fluoride in the fluoride carriers and apply over teeth for 10 minutes. Do not rinse, drink, or eat for 30 minutes after fluoride application. This is a life-long routine. Compliance with fluoride treatment typically decreases a few months after treatment is complete, which may cause dental decay as soon as 3 months post-treatment.


Home care for denture wearers is the following: The oral mucosa of a denture wearer should be cleaned 3-4 times a day, after every meal. The patient should use a tongue brush twice a day to brush away debris. Dentures should be cleaned daily. All dentures must be cleaned outside of the mouth and soft tissues cleaned separately. Because dentures are fragile they should always cleaned over water. Dentures should be held under water to remove debris; they may be brushed with a soft bristle toothbrush without toothpaste, and then soaked in commercial denture cleaning products. Ideally dentures should be rinsed after every meal. Dentures should be removed at night to allow tissues to rest as well as for an hour during the day. Calculus or tartar may form around dentures. Therefore a frequent follow up with the dentist is recommended for a professional cleaning of the dentures. The denture should be soaked in an ultrasonic cleaner with special solution available at the dental office. Dentures should be disinfectected by using chlorhexidine gluconate 0.12-0.2% solution on a daily basis. The solution may be prescribed by a dental or medical professional.


Conclusion
Working primarily with head and neck cancer patients before and after cancer treatment allows me to see and follow patients from the beginning to the end of their treatment. There are challenges that patients face throughout and after treatment. Many times oral care is forgotten about, until it is too late. The most important part of care we can provide for our patients is support and encouragement. It is important to understand that patients must be followed on a regular basis to encourage compliance with oral care.

 

Murdoch-Kinch, C. A., & Zwetchkenbaum, S. (2011). Dental management of the head and neck cancer patient treated with radiation therapy. The Journal of the Michigan Dental Association, 93, 28–37.
Thariat, J., Ramus, L., Darcourt, V., Marcy, P. Y., Guevara, N., Odin, G., Righini, C. (2011). Compliance with fluoride custom trays in irradiated head and neck cancer patients. Supportive Care in Cancer. Advance online publication. Retrieved from www.ncbi.nlm.nih.gov/pubmed/21947441
Toth, B. B., Chambers, M. S., & Fleming, T. C. (1996). Prevention and management of oral complications associated with cancer therapies: Radiotherapy/chemotherapy. Texas Dental Journal, 113, 23–29.


 

 

 

 

 

 

 

 

Emergency Communication

SPECIAL FORMS OF COMMUNICATION FOR DAILY OR EMERGENCY USE

 

I am not a laryngectomee or a speech pathologist, but a WW Vendor Member with almost 40 years experience in the field of communication. Over the last few weeks, reading the WW mail list, there have been posts regarding special problems that members have had with communication and here are some of the things our customers have found helpful.

Glossectomies (loss of part or all of the tongue), and damage to tongue nerves and muscles, can make speaking very difficult. If you have lost so much of your tongue or if control of your tongue movement is so limited that you cannot learn to speak well - BUT you can still make varying sounds, make use of those sounds! At least you may be able to develop basic communication with family and others who are with you, often without resorting to writing all the time. Working with a loved one or caregiver, figure out the different sounds you CAN make and assign them meanings. If you can put two sounds together quickly, one after the other, there are possibilities for "two syllable words" for more meanings. Sometimes having your own private language works very well. You can't make phone calls to order things or start a conversation with a stranger on the street, but you can often learn to "talk" to those you love or spend a lot of time with.

You may have all of your tongue but still have difficulty learning to pronounce words understandably, regardless of what means of speech you are trying to learn. If so, ask your surgeon or speech pathologist if you might have nerve or muscle damage to the tongue severe enough to limit your tongue movement or your control of it. We have had many customers who were not told, or do not remember being told after surgery, that they had damage that might make it difficult for them to talk. When they complained about this after months or years of frustration, some finally found out that nerve or muscle damage could be the reason for the difficulty. Once you know that you truly have a problem, you can get a speech pathologist’s help in making the most of what tongue movement you have - or you can find out what other alternatives may be helpful to you. .

If you do not have enough sound production or differentiation to develop an oral language, work on a sign or touch language. With the help of people close to you, you have many choices. You can go all out and learn standard American Sign Language or one of its variations - or make up your own sign language! Think of all the possibilities - not only finger positions but also one or two fingers to the right or left eyebrow, the cheek, the chin, either ear, the right or left palm or back of the hand, the forearm, the elbow, the shoulders, crossed arms, rapid blinks, head nods or shakes, etc. If you partner with cooperative support people in your life, you can practice, keep going and make it work for you.

Actually developing a sign or touch language can be very helpful in many instances. You may be an excellent speaker using esophageal speech, TEP speech or an ElectroLarynx, but suppose your speech fails you due to illness or loss or damage to the equipment you use? We have known people who went into a major panic when suddenly, they couldn’t speak - but this can be avoided by some kind of pre-planned alternate communication. This is especially important if either the laryngectomy or the person closest to him or her cannot read or write. Of course, it is good for everyone to have a back-up means of speech, but it can be a great relief in many emergency situations - an auto accident, for instance - to have at least an elementary preplanned visual or tactile back-up other than speech and writing. You might also consider making a page or notebook with pictures for pointing at - good for people who are illiterate or maybe for those who have problems with dementia. There are also many of these picture sheets and books available for purchase from companies that sell special speech and commmunication devices. See more on that below.

A touch language is a particularly important emergency back-up when a laryngectomee's spouse or closest loved one is blind. We have had many desperate calls over the years for that kind of situation - "Help, my Dad’s a laryngectomee and his artificial larynx just went out. My Mom is blind and they don’t have any way to communicate. I can’t stay here to help them for very long!!" The only thing we can do in those cases is rush out an emergency loaner EL, but I've often thought I should also have included something strongly suggesting developing an emergency touch language - so now I’m taking the opportunity to do that. There are so many ways of touching or tapping or stroking the blind person’s arms or fingers to convey various simple messages - and that can be a really big help if ever needed!!.

For people who want to be able to "talk" and just cannot manage it with Esophageal Speech, TEP or EL, there are dozens and dozens of communication devices available. See the WW Library's Talking Again section for the Text to Speech and Alternate Communications options. Use of these devices can be learned quickly and the communication rate will speed up with a little practice. Many of them have large memories that learn and provide often used words or phases for you to select with just one touch instead of having to type every letter. Many of the devices are quite small and easily portable. Some allow a person whose voice you like to record various messages that you can play with the push of a button or a tap on the screen. These can usually be recorded and re-recorded very quickly - so you can go to the library and tell the staff what books you want, for instance or order exactly what you want at your favorite fast food drive-through. Communication devices dedicated specifically to providing speech (as opposed to "I-Pad" type devices with a speech app) are at least partially covered by Medicare, which refers to them as SPGs - Speech Generating Devices. For those with multiple problems, for instance, loss of larynx and loss of hand control, there are still possibilities.  You might include use of one or two fingers, head movement, arm movement, leg movement or eye gaze. Many of the companies providing this equipment have dealers in major cities and representatives who may come to the home to do demos for people unable to come to their stores. A couple of companies with good products are listed in the WebWhispers Suppliers section under Telephone and Computer Communication.

I hope this will be helpful to you for either special forms of primary communication or in preplanning for emergency communication. If you have any other suggestions for special and emergency communication, you may want to post them on the WW mail list.

Dorothy Lennox

Luminaud, Inc.

 

 

 

 

 

 

 

 


With A Little Help From My Friends

“What would you do if I sang out of tune,
Would you stand up and walk out on me.
Lend me your ears and I'll sing you a song,
And I'll try not to sing out of key.
Oh I get by with a little help from my friends,
Mmm,I get high with a little help from my friends,
Mmm, I'm gonna try with a little help from my friends.” *

 

Do you need anybody? Well yes, we all need somebody. A few years back I made a new and unexpected friend. Through some convoluted family connection, it turned out she needed a house/pet sitter and I was available. Initially, it appeared that the only thing we shared was a love for animals and a need: financial (mine) and practical (hers). And for a while, it was just business. After all she was from Virginia, a true southern girl, conservative in dress, precise, composed. I was a Yankee, not true to my roots, in that I had been wild and unpredictable in my youth and while I was settled now, those things change you forever. Still, there was something about her I really liked and that she liked in me, as well. I believe it surprised us both.


We became friends in a way that simply can’t be predicted or explained. Maybe it was our shared love of cats, good wine and pesto pizza. I don’t know, but it happened. I have thought maybe it was her sharp wit that you might have missed the first time round listening to that Virginia drawl or the fact that she and her husband would still disco dance together around their living room on a Saturday night, just for the fun of it. How could you not love these folks?


Then she moved away. Her husband’s dream job came calling and they were gone. Tennessee is a long way from Maine. It’s not easy to make new friends at any age and she has had a hard time adjusting to life in the fishbowl that is their world now because of her husband’s position. It’s not easy to make new friends as we get older and unfortunately the three things that fire folks up most in her neck of the woods are UT football, the church, and country music - passions she simply does not share. We e-mail, we SKYPE, we visit once a year or so as they come north to visit his family. It’s not the same but it is important to both of us that we stay connected.


WebWhispers has also fostered some unlikely friendships. We are very diverse group, who just happen to share an unusual condition. And there have been some bonds made here that can’t be broken simply by age or distance or time. Folks we feel close to who we may never meet in person or maybe see only once a year or so at the IAL.


Friends need to stay in touch and so to help us do that, we are starting a new column called “This Lary Life”. Pat Sanders and I kick it off this month with a few of our favorite pictures. This month and next we will feature Travel. Each month we plan to publish the photos you send us – snapshots from your life so we can get to know each other better. Although this month the pictures are of dear friends we made through WebWhispers, in the future it is not at all limited to just WW. Each month we will have a different topic, such as travel or family or furry companions and you can send in your photos with a little caption. Think of it as your chance to let your WW friends know what you are doing. The daily list is about our practical needs as laryngectomees and caregivers. This new photo section is just for fun and a way for us to “meet face to face” and stay connected. Check out the “Travel with Larys” section for more details. Remember, we all get by with a little help from our friends.


*Lennon/McCartney 1967

 

 

 

 

 

 

 

 

 

What advice or event helped you the most with your recovery?

 

 

 


 

Tim Hembree - Feb 2008

The event that helped me the most was at the beginning of my journey. When I went in for my first radiation treatment I saw a young child who I judged to be 7 or so with no hair obviously getting treatment too. The second day was another child a little older. I decided right then that no matter what happened I wasn't going to feel sorry for myself. I've lived a good life and if I drop dead today, then so be it.

 


 

Marian Cure, Tool, TX ( Cedar Creek Lake) - 2009

The first help I received was from Jessie Hart as she visited me in Baylor Hospital in Dallas prior to my surgery. I must admit that my family listened to her better than I did as I was in shock and couldn’t take in what was about to happen. One of the things she spoke of was getting online with WebWhispers. My children insisted that I start corresponding with Jessie and joining WW. Jessie was always quick to respond to my emails before I got my TEP. My daughter insisted that we go to the Texas Laryngectomee conference five weeks after my surgery. We both learned so much from that conference. Dr. Larry Myers was a speaker at the first conference and I made the change to his office and found a wonderful SLP, Janis Deane. One must have a doctor who walks beside you, not in front or behind. Jessie’s emails and WebWhispers kept me informed on laryngectomee issues. I’m sure there are many who will miss Jessie Hart. My family and friends were always there for me. There are so few of us so I give my name and email address to anyone who might need help. Jessie was an angel to so many and will be missed.




 

David Blevins, VB, VA - 1998

Saying "yes" to a question from my ENT before surgery, "Would you like to meet with the president of the local laryngectomee club? Her name is Pat Morgan."

 


 

Len Hynds, Ashford, Kent, England - June 2004

To answer the question posed caused me much thought on the matter, and in spite of all the expertise in saving my life by those devoted surgeons and nurses, I could still have fallen by the wayside if I had been in the wrong frame of mind. In short, if I had given up hope. Every one of us is different and, mostly, at a certain age when struck down with the fearsome thing cancer. We are set in our ways, but at that early stage when the strong possibility of a premature death looms, and in some an almost certain thing to happen, a metamorphic change in our outlook commences.


On the negative side, as you slowly learn about it, you discover you are unique, in that only one in every twenty five thousand people in the world will ever get throat cancer, and there are thousands of doctors who can go through their whole career without ever meeting one of us. So without question, the most important thing in my recovery was the unfailing help, friendship and comradeship of fellow Laryngectomees. From before my operations, they were there under our ‘ Buddie ‘ scheme, giving me that most important thing, ‘ confidence.’ My club the Ashford, Kent Laryngectomee Club goes from strength to strength, and really become like family. We do many things for other less organised cancer groups, and our social life is great. We even have our own Chaplain, Tricia, who is the hospital Chaplain,
and was an ENT nurse before taking holy orders.
I always feel sorry for you Laryngectomees who live many miles from any club or support group, and that is why Web Whispers becomes so important to you.
So my answer is, “ COMRADESHIP

 


 

Carolyn Anderson, Green Bay, WI - 1988

The best advice I got after my surgery, twenty-four years ago, was "Let's start a support group." said to me by the patient representative at the American Cancer Society. That was in the days when the ACS was still supported the IAL. The group was a big success and is still sponsoring lary conventions in NJ. Get involved and out of your own troubles. Worked well for me.

 

 


 

Harry Wintemberg, Ormond Beach, FL Class 1982

In the mid-80's (about 4 years after my surgery and my development period for the esophageal form of speech), I began teaching an in-plant seminar on the The Principles of Steam Turbine Design and Axial Flow Compressors. Classes were in a small conference room with about 15 engineers in attendance. I experienced no difficulty with the public speaking aspect before this small group and my students were very understanding and respected my handicap.

I developed a self-confidence that was really challenged several years later in the mid-90's. After retiring, I became very involved in our community homeowners association and in1995 was elected president. One of the duties of the president was to chair monthly meetings with about 250 residents in attendance. The first time I picked up the gavel and microphone and looked out at nearly 250 pairs of eyes watching and listening, my throat became very dry and my nerves started playing havoc with my ability to speak. After that 1st meeting the secretary suggested I join Toastmasters Club to help get over my nervousness.

Despite my fears, I did in fact join the local Toastmasters. At the first meeting, I was understandingly quite tense
and nervous, but after giving a short profile introduction of my background, I felt a warm supportive reaction from the group. Despite the rigorous experience of standing before a group of strangers and speaking on whatever subject was thrown at you, I began to develop a self-confidence that I could have never realized by myself. Amazingly at subsequent Homeowners Association meetings, I felt a new level of confidence and gave no thought to my different way of speaking that no one in the audience had ever witnessed. I always had a very attentivegroup and they showed me a level of respect that I had not seen with the previous administration's officers.

So in looking over the past 30 years, there is no question that the combination of the Toastmasters club and then being forced to speak before a large HOA audience was most responsible for helping me with my recovery.

 


 

Elizabeth Finchem, Tuscon, AZ - 1978

Looking back to the beginning of this adventure as a perspective laryngectomee I have to start with pre-operative counseling with Bob Keith at Mayo Clinic, Rochester. MN. We had a couple sessions that covered what Total Rehabilitation means and what was possible for me. I had the chance to watch videotape showing two women who taught school (3rd grade and high school French) speaking esophageally with fluent feminine intelligible voices. Next, I was assured that once healed well enough I would have the opportunity to learn how to use the Larchel swimming device so I could continue swimming and boating as I wished. In time I did master esophageal speech, with a detour that also taught me to use electro larynx very well. I resumed all my water activities and added sailing on the ocean as a crew member and Skidoo around an inland lake for fun.

The best advise for life growth came as a referral from my local SLP to a Family Counselor that is a psychologist. I was later told by a PhD, SLP who is well known, “Laryngectomees do bring their personal baggage to the event called laryngectomy”. When we cannot speak as we did pre op the stuff in our baggage does pile up and it is not communicated in those written notes very well. It can become an emotional block such as was demonstratated in
the movie, “The King’s Speech”.  It may not be the laryngectomy, but something unresolved that happened so long ago, it is well stuffed out of sight and mind.

We may find that we need assistance to learn some new problem solving skills we never knew we would need until now. After all, we’d been managing just fine until “this”. This is a whole new deal that may require time and objective guidance to sort through. It did take some time, but I learned how to peel back the layers of the “onion” that represents the various layers of relationships we deal with everyday; spouse, children, parents, in-laws, friends, etc. Since we are born alone and die alone, hopefully we do come to realize that we are also provided everything we need to get through this life. We have the personal power to get the job done, if we don’t give it away in bits and pieces to others, to do whatever they will with it. We are here for a reason, and it is up to us to determine what that purpose is to be.

 


 

Talk of Whales and Things by Dick Scheele


After retiring from the Air Force in 1969, I moved to Hawaii thinking it would be a nice place to live. I got a job in Honolulu, was transferred to Hilo, on the Big Island, where seven years later, at age 50, I became scuba certified and started my education about the ocean. From then on I was hooked and have not stopped studying it since that day.

After five years of snorkeling and diving around various islands, I changed jobs and moved to the mainland. After retiring a second time, I returned to Hawaii and the ocean I found so fascinating. I discovered Sea Life Park and attended their docent school. As my knowledge of the sea grew I became fascinated with the study of cetaceans (whales & dolphins). Soon I was teaching classes at Sea Life Park in the subjects of whales, dolphins, seals, sea lions, and the octopus as well as various other sea critters.

Eventually I was asked to go to various schools to present programs. Opportunity came my way and I got a job as naturalist on a whale watch ship out of Honolulu and then later, a naturalist job on a whale research ship in Alaska. After returning to the mainland, I volunteered at the Marine Science Center in Port Townsend, WA, lecturing on various subjects and helping in the education department. Then one day I developed a sore throat. You know what that meant! It culminated in a laryngectomy.

While I was recovering, my daughter visited and brought me an American Sign Language dictionary. During all the previous years, one of the things that held a place in my mind and heart was a program on whales that I did for a class of deaf children, with their teacher standing next to me signing. I have always remembered their attentiveness and interest. It was the catalyst to get me moving and after one year and three college classes in sign language, I am once again preparing to lecture about whales and things of the sea. This time I will be lecturing to the deaf.

Hopefully I can bring to them something they might not have otherwise learned. I look forward to this as the greatest and most rewarding challenge of my life.

Dick Sheele wrote this for HeadLines in 1999 and lived almost 10 more years doing what he loved and was able to do because, when the opportunity came along, he was prepared.

 

 

 

 

 

 


 

 

 

This Lary Life

 

We are starting a new Photo Column called “This Lary Life”.

Each month we will announce a different topic and ask you to share your photos with a short caption. For example, next month (October) we would love to see pictures of you and your travels. It does not have to be with your WW friends, although Pat’s and my pictures this month are from WW cruises. We will post the topic on the list each month. I think we all enjoy being able to put a face to a name and with our far-flung network, posting photos here is often the only way we ever get to “meet” face to face. The address for your photos and comments is editor@webwhispers.org. We look forward to seeing your pictures in next month's issue but you need to send them right away!

To get us started, this month, Pat and I have a few we’d like to share.

 

DONNA AND FRIENDS:

Linda Rainbow, Miguel Hernendez and I met on the Panama Canal Cruise of 2004. It was my first meeting of any WW members except Libby Fitzgerald and her husband John who I had met the previous summer. It was she who encouraged me to join WW.

1. The first picture was taken by Miguel of Linda and me, as we left NY Harbor on the WW New England/Canada cruise of 2011.

2. Miguel caught us mugging for the camera in Quincy market.

3. After the cruise we drove up to visit Libby and John at their Connecticut home, where the last photo of the three of us was taken. Linda and Miguel became friends with John and Libby during another WW cruise that I was unable to go on, so having all of us together in Connecticut was a wonderful visit.

4. The last is the view from Linda and Miguel’s deck, taken in 2010, when I visited them in Cabo San Lucas. This is a friendship which has spanned two countries and nearly 3,000 miles. And we are planning on getting together again in Spokane at the 2013 IAL Annual Meeting

 

PAT AND FRIENDS:

Some of us became friends through exchanging emails in WW and those friedships were cemented by meeting on cruises, where there was plenty of time to visit and share meals and tours, tell stories and compare notes.

1. 2002 - Standing on a high spot overlooking Vancouver with Ron Langseth - CA and Rueben Pruitte - KY, ready to board the ship to Alaska.

2. 2004 - Headed for Panama Canal with my buddies and co-workers on WW, Terry Duga - IN and Dutch Helms - TX, our 4th cruise together and something we looked forward to every year.

3. 2010 - Vicki Metz - WI lined up 4 caregivers, Rachel Armani - NC, Yvette Gauger - OR, Barb Chapman - WA and

Janine Mattoon - WA, pledging Friendship.

4. 2011 - We all enjoyed the spectacular ice show at the rink in the ship. Whoever would have thought that was possible!

 

 

 

 

 

 


 

 

The thoughts of writing this came into my mind back in early 1994, as Tilly and I stood beneath the candle chandelier in the Chateau St Anne in Brussels, Belgium. On June 15, 1815 the Duchess of Richmond held a ball for the officers of the Duke of Wellington’s army, the very night before the Battle Of Waterloo when we finally defeated that tyrant Napoleon who had captured nearly the whole of Europe. On the way home across the channel in the coach, I had nearly finished this poem.


THE DUCHESS OF RICHMOND’S BALL


Oh Chandelier, if you could speak,
of that night so long ago.
That fateful night, the one I seek,
and of those I wish to know,

Oh Chandelier, please tell me pray,
of the dancing in this hall.
Of young couples swirling gay,
at the Duchess of Richmond’s Ball.

Oh Chandelier, those scarlet coats,
with gold and silver thread.
Ensigns, laughter in their throats,
as in their dance they led.

Oh Chandelier, those ballroom gowns,
rustling beneath your light.
You heard the music’s magic sounds,
and saw maidens’ eyes so bright.

Oh Chandelier, please tell me true,
of that battle on the morrow.
Did you know of Waterloo,
and which poor maid would sorrow?

Oh Chandelier, I seek one pair,
young lovers newlywed.
This last night that they would share,
on the morrow his body bled.

Oh Chandelier, as you looked down,
at those waltzing pairs below,
did you see her eyes so softly brown,
and his face framed by your glow?

Oh Chandelier, could you have known,
the last thing that he saw,
as his gallant horse was thrown,
and the lancers thrust he bore?

Oh Chandelier, as he lay there still,
dying, upon the ground,
a vivid light did fill his eyes,
with music all around.

Oh Chandelier, he saw her face,
surrounded by your light,
and as he entered God’s good grace,
he thought about that night.


Editors’ Note: When Len originally sent this to us to keep on file should we ever want to use it, he noted the following: “What made me think of this, is that today would have been Tilly’s and my 64th wedding anniversary – November 1, 2011.” Watch his column next month for the rest of the story of Len and the Battle of Waterloo! This man never ceases to amaze us.

 

 

 

 

 

 

 

 

FEEDBACK comments from our members about last month's issue:

 

Having read the "depression" section, everyone's input was open and honest and from a range of people, which highlights the issue and gives everyone hope. In particular, the way people get around the problem. I thought it was great. Bill Rose, Australia

 


 

I had severe depression about three months after the full lary surgery. I consulted with my pain medication doctor, and also at my son's urging went to the psychiatrist that is connected with the medical center cancer group. He prescribed medication, low dosage of Prozac, which I am still on. Also, enough exercise, which for me is walking as much as I can each day, and stretching exercises. Slowly, and I emphasize, slowly, things got a lot better. Taking each day one at a time is also good to do. We are going through a drastic physical and emotional life change, and you just can't fool yourself to be better. It's a process of adjustments. Peter Powell, New York

 


 

As always, I really enjoyed the monthly newsletter. I really liked seeing the pics of folks at the convention, and perhaps it is shameful of me, but as a new Lary, I am always interested in seeing how people cover (or don't ) the stoma. I found the article on choosing a prosthesis fascinating, but a lot of it I do not understand, being new and not even having seen an SLP yet.(My assumption is SLP stands for SpeechLanguagePathologist, but as with many "tech languages" it takes time to learn. I am fluent in the language of Chemistry, fairly well versed in Physics, elementary teaching and grant writing, quite well versed in on-line shorthand silliness, can read typos like the 20 plus year on-liner that I am, but the Language of Lary's and our situation is slow going for me to learn, so far.

I became a Lary as a complete surprise, literally, overnight...well, two nights, at the end of Feb, beginning of March, and so far, have only seen my ENT, his extensive team of students (at 4am every day for the nearly a month I was ensconced at UC Davis, and now home with just one doc to get CT scans. Daily, my Radiology Oncologist and his delightful team of lady technicians and nurses. That group has made a huge difference for me...finding resources, being supportive and kind, and giving me whatever appropriate reading material they can find. Delightful ladies, I occasionally bring them hand crafted very fancy glycerine soaps I make as little thank yous. Never hurts to be kind to those that have been especially kind and helpful to you.

I very much enjoyed Len's story/essay, as always. What a brave and articulate man, with so much to share and such interesting bits of world history from a perspective of personal experience! Fascinating, and very human, and 'real'.

Well, I have babbled on quite long enough in this thank you letter....keep up the wonderful work!

One suggestion...on each newsletter page, put a link to the last several month's newsletters in case we missed one or want to refer back. I REALLY like that you put a feedback link in, too. Also, maybe it is just me, but a short article for us newbies would be a wonderful addition. For example, a couple definitions, like, what is a TEP, a picture of one, and a diagram to show where they go and what the surgery is like. As I mentioned earlier, every specialty has it's own language, and we get so used to it we forget to use language that the uninitiated do not yet understand.

Anyway, thanks for the newsletter and for listening!  Betsy Fein, California

 


 

Editor's note:

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           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
          
 

 

 

 

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