April 2015

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Humidity... Relatively Speaking News & Events
VoicePoints Nash & Doyle Body Image as a Component of Survivorship Education-Med
Between Friends Donna McGary Cat Talk Commentary
Speaking Out Members Larys and Their Pets Opinion
Dear Lary Noirin Sheahan Silence and Speech Commentary
Travel With Larys Jack Henslee Favorite Places Experiences
The Speechless Poet Len A Hynds The Spring Fanfare Prose & Poetry
Bits, Bytes and No Butts! Frank Klett New Gadgets Galore Computers
P.S. Brandon Holmberg Sam 'n Me  

 

 

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

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Humidity, Relatively Speaking

We hear about humidity all the time but we need to think of it in the way that it affects our lives. We, as laryngectomees, because of our changed breathing patterns, are very much affected by humidity but we don't necessarily understand the numbers. We know that hot summer air often feels heavy with moisture and cold weather is often referred to as dry, crisp, air and we can suffer either way. We often hear the question, "What percentage of humidity is recommended?" Mostly the answers say about 50% and that is not a bad goal; however, 50% is not always the same amount of water vapor in the air. It depends on the temperature.

The term "relative humidity" is used for the moisture in the air "relative" to the temperature, meaning that warm air holds more water vapor (the gaseous form of water) than cool air. The measurement is the percentage of what it would take to saturate the air "at whatever the current temperature is ". By the way, the "dew point" is the temperature at which the relative humidity reaches 100% and the air cannot any longer hold that moisture, so if that air cools and cannot hold that amount of moisture any more, you have dew.

In the Winter, as cold air leaks into your home and is heated, its relative humidity goes down. For example, if outside air, temperature at 40°F and a moist 80% relative humidity, is heated to 70°F, its relative humidity drops below 20%. Too low. Homes are comfortable at a relative humidity in the 30% to 50% range and we larys tend to need it at nearer the 50% or more, but our houses do not need to be that moist. Anything much lower than 30% causes static electricity, dry skin, chapped lips, and respiratory problems even for people who still breathe through their noses. We larys have dried mucus and the possibility of having tracheal dryness and breaking capillaries as we cough. That's why so many of us have trouble when we turn on the heat in the Winter. We lose a lot of moisture every time we exhale, approximately 3 pints per person per day are exhaled into the air and we can become dehydrated, which we try to avoid by wearing HMEs and stoma covers, using humidifiers, and drinking liquids (preferably water). Houseplants help by adding humidity. I especially like the plants that grow or root in water. If we have 50% humidity in the Winter, we may save on fuel bills since the damper air feels warmer to us and we can turn the thermostat down a degree or two. Watch for constant condensation on the inside of your windows as an indication of more humidity than you want for your house. When you shower, breathe in the wonderful moist air, but, in the summer, leave the vent fan on for a while to get rid of the moisture when you are through, especially if you hang your damp towels. In the Winter, when it is difficult to get enough moisture, it is the reverse. Hang your towels and leave the door open. Anytime your humidity is low, wet down a stoma cover or wash cloth and get the moisture where it does the most good, right over your stoma.

Pay attention to the relative humidity outside and get a hydrometer ($5 at your local home supply store) so you know what is going on in your house. This is mainly written about Winter time because that is when we have most of or respiratory problems, but be careful of getting the humidity too high in the summer. Your wooden furniture and floors will swell and you need to strike a balance that will not cause mildew and mold in your house but will keep you breathing right.

Personal Humidifying

We all know about humidifiers, dampened stoma covers, and irrigation, so, what else can we do to help the situation?

If someone told you about a product that is calorie-free, would keep your skin in a healthy condition, lower your risk of urinary cancers and perhaps colon cancer, hydrate your tissues, prevent kidney stones and, very important to laryngectomees, thin mucus and saliva, you would say, "I want some of that medicine. I don't care what it costs!" That medicine comes right out of your water tap and the cost, even if you prefer to buy bottled water, is one of the cheapest "medicines" around. Feeling tired? You may be dehydrated. Have a few glasses of water! If you wait for thirst, you may have already started to dehydrate.

The problem here is that hardly any of us drink enough water and the only way we can know for sure is to measure. Take a favorite glass and a measuring cup. Don't cheat. Fill the glass 'appropriately' and, pour it into the measuring cup to note how much it takes to fill it to that level. Then it will be easy to calculate how much you are drinking daily. Juice glasses are usually 4 to 6 oz. Tea and water glasses are probably 10oz or 12oz. How many of these do you need? For years we have heard that we should drink 8 glasses of water a day and they are talking about 8 oz glasses. That's 64 ounces or ½ gallon and doesn't sound so bad if you get to count coffee, tea, and colas, but you can't count that way. These other drinks are dehydrating so you have to drink more to come out even. Count these drink as about 2/3's of actual liquid content. A 6oz cup of tea would count as 4oz. Any noncaffeinated beverage counts as water. Foods have water content, but not enough to add much to your list. To make it even worse, Mayo Health says to divide your body weight by half and that's how many ounces you really need each day. That means the ½ gallon would only be enough if you weighed 128 pounds! So, if you weigh 200 pounds, drink 100oz of water a day. Think how important it is to a laryngectomee that water carries oxygen to your cells and helps to thin mucus.

Keep a jug in the refrigerator, carry a bottle around with you, and keep a glass at the kitchen sink. Drink a glass as soon as you get up in the morning and drink water with your meals. Swig a little extra when you take your medicines, especially vitamins, which need water to dissolve and be accessible to your body. Flavor it with lemon or lime or make a juice spritzer. Substitute some Gatorade but no more than a glass or two a day. It was meant for drinking after heavy exercise.

Any moisture that you can put "in", "on", or "around" your body will help to moisturize. Use your humidifier, dampen your stoma bib, hold your hot drink up so you are breathing in some of the rising steam, carry the water glass or bottle around with you and sip often. Water is an excellent expectorant and it may be that water alone is the medicine you need.

 

Enjoy,
Pat W Sanders
WebWhispers President

 

 

 


 


Body Image as a Component of Survivorship


Melissa M. Nash, BHSc, MSc & Philip C. Doyle, PhD, CCC-SLP
The Laboratory for Well-Being and Quality of Life in Oncology
Western University
London, Ontario, Canada

Introduction

As the population of cancer “survivors” continues to grow, it is becoming increasingly necessary and important to identify and address important “quality-of-life” (QOL) issues that can negatively affect one’s perceived well-being following the completion of treatment. Perceived QOL may be directly influenced by changes in one’s physical, psychological, and social functioning not only due the diagnosis of cancer, but also as a consequence of its treatment. This is of particular importance to those diagnosed with head and neck cancer (HNC). One of the most difficult and often persistent challenges facing this group of survivors may be their ability to cope with changes in their physical appearance. This in turn will likely influence one’s social functioning. The consequences of HNC and changes secondary to treatment may be quite obvious to others; this is particularly true in those who undergo total laryngectomy. Laryngectomy will result in changes that are both heard by others (alterations in the characteristics of one’s voice and speech), but also visual (alteration in the observable physical features of the head and neck). Given the often-dramatic changes in appearance and functioning that commonly result from treatment of HNC, a disturbance in one’s “body image” may develop and interfere with the resumption of previous roles and routines, which in turn may impede the important task of rebuilding the self.

Does Body Image Matter?

Research conducted in our lab and that of others has demonstrated that body image concerns are present for both men and women following treatment for HNC. Further, these concerns and the social consequences that emerge based on physical disfigurement can lead to increased levels of distress. However, these concerns may be reported regardless of the presence of actual and noticeable physical disfigurement. Further, it also has been shown that distress can lead to poorer medical “outcomes” both in the short- and long-term period following completion of treatment. In particular, it has been demonstrated that postsurgical coping is decreased when the individual identifies a concern related to their perceived body image.
Over the last 15 years a dramatic shift has occurred in the diagnosis of HNC that has increased the need to consider broader QOL concerns relating to the after effects of cancer and its treatment. Approximately 15 years ago, statistics would have been substantially different with the overall men-to-women ratio ranging from approximately 6:1 to 10:1; today, that ratio has dropped to approximately 3:1. Additionally, individuals are being diagnosed at a younger age and, therefore, the individuals will be living longer than ever before with the effects of treatment.


What is Body Image?


As a concept, “body image” is an incredibly complex issue that requires careful consideration and assessment with all individuals treated for cancer regardless of gender or cancer site. Body image reflects much more than one’s view of his or her physical appearance. It includes perceptions, thoughts, and feelings about one’s entire body and how the person’s body functions, as well as his or her ability to relate to others. Body image is often reflected in social interactions and has strong links to what is considered “normal” within society. An essential element of the body image experience must consider many related issues. Given that body image is highly personalized and is based on an individual’s feelings and interpretations, the experience “may not reflect the objective reality of the body.” Further, because of the broad nature of body image as a clinical concept, it must be recognized as an important area that will influence the individual’s status during recovery, rehabilitation, as well as short- and long-term survivorship.

How Does Body Image Relate to Survivorship?

Within the area of cancer care, the term “survivorship” pertains to the health and life status of the individual from the point of diagnosis, through treatment, and until the end of life. Survivorship includes multiple areas associated with physical, psychosocial, spiritual, and economic as well as many other issues secondary to cancer. Survivorship extends beyond the period of cancer diagnosis and its treatment to include issues such as one’s ability to access health care and follow-up treatment, obtain information about the disease, and when possible, intervention for the late effects of treatment, second cancers, and quality of life concerns. A focus on “survivorship” may provide opportunities to address the broad range of issues that emerge following a cancer diagnosis and to attend to individualized concerns. The ability to acknowledge body image concerns as part of survivorship has the potential to motivate development of new, less invasive surgical techniques, to advocate for pre- and post-treatment counseling to help minimize distress associated with treatment related disfigurement and its potential social consequences and finally, to potentially facilitate assistance with re-integration into life roles. Because disfigurement may have a clear and substantial social impact and as a result an understandably negative influence on QOL, more formal consideration of aspects that comprise the concept of body image would appear to be an important and valuable consideration in one’s clinical care.

Body Image in Practice

Measures of body image usually take the form of simple self-report questionnaires. These questionnaires are usually short and relatively easy to distribute, complete, and score. The questionnaires exist in both generic and oncology specific forms. Use of these types of questionnaires may serve as an easy and cost-effective way to monitor one’s concerns related to body image, and subsequently permit the initiation of counseling which may ultimately serve to optimize QOL. As research in the area of body image among individuals with HNC continues to emerge, it is hoped that monitoring this critical component which impacts QOL will foster better patient care and result in improved short- and long-term rehabilitation outcomes.

Note: For references on the topic of body image, please contact the authors at:
mmandevi@uwo.ca  ---or---   pdoyle@uwo.ca

 


 
 

 

 

 

 

 

 

Cat Talk


To go along with this month’s Speaking Out question I decided to re-cycle an old column of mine from back in 2006. A few things have changed. My son and his wife now have two beautiful daughters and I live next door. The two little kittens grew up and were wonderful companions for the oldest girl but unfortunately both of them met with an early demise. One ran off to join the circus, apparently, and the other suffered from an insidious inflammatory bowel disease. They have been followed by a particularly vocal black shelter cat (re-named Dinah, after her predecessor). After a bit of a rocky start with the two young girls she has become an absolute sweetheart. I am thinking it may be time to find her a little companion kitty. Once a crazy cat lady, always a crazy cat lady. And I did NOT actually live naked in the woods.


How Have the Mighty Fallen


This month I want to talk about how much I love my new little babies and what joy they have brought to my life.  Now, before you gag or choke, if you are NOT an animal lover, perhaps we can agree to meet here again in a month or two.  And if you did happen to read my last column about sex, I trust you realize I am NOT talking about the product of my recent forays back into…well you know.


My darling son and only child just turned 30- he married his sweetheart back in September- and I couldn’t love them more if I tried.  They are awful good to me and I think my son, especially, worries that I spend too much time alone.  We adopted a dog from the pound when he was just a toddler and our Sheppie turned out to be the best dog ever in the whole wide world.  We also always had at least one cat while Emeth was growing up and he decided I needed something warm and furry.  He sent me the pictures first knowing I would melt and then brought over two little kittens- brother and sister- then only 8 weeks old.


Now before you scroll down thinking this has absolutely nothing to do with being a lary…bear with me.  First of all, I live alone and use an EL exclusively.    I do NOT walk around the house with it hanging around my neck.  Nevertheless, I have developed a very satisfactory way of communicating with my little bunkies. 


Cat lovers will tell you that you don’t train a cat- it decides to allow you to be its human.  Cats have no concept of the “alpha male”.  But if a kitty cat decides you are its mama, it will hear you no matter what.  So I don’t need my “other voice” [what I call my pre-cancer voice] or my Servox to make my babies hear me.  I use the rattle of the just filled cat food dish- universal cat talk- or smoochy kiss sounds to call them when they have hidden under the sofa- or chchchchch when they start to scratch the sofa or climb up my pant leg and I am saying, No!.... or ssttt when they jump on the counter- that needs to be followed by a judicious spray from the water bottle…lately I don’t even have to pick up the water bottle, just pretend to be pointing something at them and make a ssttt sound.


My son’s dogs are trained to hand signals but they know my “voice”.  They respond to my “sh..sh…sh…when I first come in to the house and pet them and my “ch..ch..ch” when they get too rambunctious.  They know if I stamp my foot, I am serious- they need to calm down and if I clap or slap my thigh they must come right now.


This is important because sometimes newbies are told they shouldn’t have pets because of the hair and allergy issues.  I am here to tell you, kitties ARE fascinated by stomas…get yourself an HME or couple of bandanas…the joy you get from that warm, cuddly, curious, funny little creature is far outweighed by its dander.


Plus, if they start to annoy you in the night, just scoop them up and put them outside the bedroom door.  Try doing that with a boyfriend! HA!!


Seriously, multiple studies have shown that pets are good for you…if you like animals.  I had a grandmother who really did not like house pets…the nursing home she was in at the end had a cat and I can tell you that creature did nothing but elevate my Nana’s blood pressure!!  Thankfully, he had a much better reception from the other residents.


My point is that if you have a beloved cat or dog or gerbil or chicken (yes, I actually have friends with pet chickens)  or you want to get one, it is a non-issue for us.  Let’s face it- they probably didn’t understand our spoken language before our troubles all THAT well- animals read body language and tone and frankly, cuddling is THE universal language.


I was thrilled to get one of those Ad-Vox amplifiers at the IAL in Chicago…Thank you , Bruce Medical, Richard Najaarian & Linda Rainbow, and I have had great fun experimenting with it …although my son did make some rather rude comments about where I could place the speaker for maximum effect….these kids today!!  But my kitties were so startled by my new booming voice they hid under the bed until I took it off and used my “regular voice” to call them. 


It appears that I am well on my way to becoming one of those eccentric old cat ladies who putters around in her flowerpots while she mutters to her cats.  My son and I have joked for years that I am going to be that granny with the wild hats…the one his wife will say about as they drive over for a visit with my grand children, “You know, I love your mother dearly, but do you think you could ask her NOT to tell the children AGAIN about when she was in the cult and lived naked in the woods?”


Hmmph…my cats LIKE that story!


 

 

 

 

Larys and Their Pets

Please tell us about your pets and how they adapted to your new voice and life.

How important are they to you?


 

 

Debbie Deaton, Cincinnati, OH, February 28, 2012

I believe with all my heart that my dog, Sara, missed me talking to her. I almost feel like she thought I was mad at her. I hated very much that I could not talk to her for so long. Once I got my prostheses and I talked to her, I think she was afraid for a while. It took some time for her to get used to my new voice, but today, it is like nothing ever changed. My family members said I sounded like myself right away. I don't agree with them, but I can talk so I truly don't care what I sound like....LOL.

I'm very thankful to be able to talk.

 


 

Ed Kuszajewski, New Stanton, PA, 2014

Hi everyone, Ed K here class of 2014. I was in the hospital for 18 days with my surgery. I originally went in to have a scope done but they had to do an emergency trache on me to get an air way. The tumor grew very fast in the two weeks of my initial ENT visit.

My dog Mazy the Beagle was very confused when I first came home. She couldn't figure out why I didn't talk to her. It took about 6 weeks to rebuild our friendship and now she won't let me out of her sight! Since I am home alone most of the day she is the only one to talk to. God bless our animal friends.

Thanks for listening.

 


 

Sharon Severini, Waterbury CT, 11/2012

Hi all. I do have a black cat. Her name is Baby because when she was born on Halloween 1999. I was in the room and the mom tried to kill and eat her as she was the runt and possibly going to die. I eye drop fed her baby formula until she could care for herself to eat and kept saying 'oh you poor baby'. She came to believe that was her name. 14 years later I had my operation.

She can't read so at first, before my TEP voice, I mouthed words with the best sound I could.. She was always near me…More than ever then. Well I began using my TEP voice about 1 1/2 months post-op and when I came home that day and said “hi you little poochie baby” she began running around through the dining room, and kitchen to living room and up then down the stairs to the bedrooms. She acts now as if I am still the same.

She is my “Baby” and she will turn 16 this Halloween. We love that cat!! Especially my granddaughter who lives with me and is younger than her by 3 1/2 years. LOL...

 


 

Phil Walrond, Roanoke, VA, 12/5/07

My Mother had a dog (Molly) who very much understood me even after my total laryngectomy. She understood "Molly lets go to the grass" and "Molly speak to me". I speak with a Servox EL.

Molly passed away several years ago. Even thought she was my mom’s dog I still miss her. It was not hard to figure out when I said "Molly lets go to the grass" She would run to the door. And when I said "Molly talk to me" She started barking. She understood a few other commands too, "Molly lets go" and "want something good to eat.” She would react to hand signals also. I could point my finger at her and she knew I was disappointed in her. Dogs understand a lot.

 


 

Len A. Hynds, Newtown, UK

In deciding what pet I should buy when I lost my wife and was living alone, my first thoughts were naturally for a dog, or even a cat. But as I spend so many hours out of my bungalow, I felt it would be unfair on the poor creature to be left alone, locked in, so eventually I decided upon goldfish.

So I went and bought a large tank and cabinet, but that brought further problems as I had to completely re-arrange my lounge, and finished up buying a new three piece suite, plus a smaller circular table and chairs. So having spent a vast amount of money to get a pet, I purchased 15 small cold water goldfish, all of the most beautiful different colours, plus all the paraphernalia that goes in the tank. Then came the learning period, and there are a lot of things to learn to keep healthy fish.

At first they would hide in the foliage, but they only hide from visitors now, recognizing my face when I feed them by hand. I have had to take eight of them to a restaurants open air lake, as they were all getting too big for the tank. And the seven I have left are eight inches long. I have purchased a commercial filter which is much better to keep their big tank crystal clear. That installation cost £85, so my venture into having a pet has cost a fortune over the past 18 months, so I have changed my view of fish, and am sure they have feelings, they ignore my hand usually in the tank, when I am re-arranging plants or air filters. Otherwise they actually let me stroke them, or nestle up to my hand.



 

Gary Gierhart, Lakeland, FL

I lost my voice in March 2013 from surgery. Cancer struck me twice and as a result of it I now use an EL to speak. I have a dog who now is 8 years old and the love of my life. When I came home from the hospital she was happy to see me and waited for me to say something. I had to use the EL to speak and when she heard that voice she seemed afraid and didn't know what to do. I worked with her for some time and she began to understand what I was saying. I also worked with her on hand signs and it took some time working with her to understand what I was trying to say. After a couple of years she now understands what I want her to do. So a dog can be trained to deal with larys. Love, affection and determination go along way with pets. Now I can clap my hands and she knows what I want her to do. What a beautiful dog.

 


 

Lorna Larson, St. Louis. MO, January 2014

So, I've never been a dog person, mostly because of the smell. Got a laryngectomy - problem solved!

This is Gunny. He is a 7 month old shepherd - Dutch and Blue Mountain. Seems to understand me mouthing commands and pointing - and I also clap to get him to come. My husband has trained him well, so I rarely have problems with him (the dog, not the husband). Oh, and he's cute too (dog and husband)!

 


 

Lynn Foti, Akron, Ohio, May 2009

My name is Lynn Foti. At the time of my laryngectomy, I had 2 cats. One, a 16 year old Manx, and the other a 7 year old black female, who was the sweetest, most loving thing. I had been sick for some time and had to give my dog to a friend because I could no longer take care of him, but have had dogs and cats together most of my life. After my lary, I was unable to speak, or make a sound for 7 months, and in order to get the cats' attention I would clap my hands, or my lap. They learned that pretty quick.

The day I got my prosthesis, I came home and was changing clothes, my black female, Lilly was sitting on the bed, looking out the window. I said "Lilly", and she shot her head around and came running to me. It made my day, and also brought tears to my eyes. Both of those cats are gone now, and I have 3 newer cats and a 55 pound lap dog. But... I will never forget how Lilly would come to me when I was sad, or crying, and just give me lovins...my pets are very important to me, and I do feel that they help me so much in healing and being able to go on with life. It is a lonely world without pets. At least for me. I have my son, who is my caregiver, but need my fur babies too.



Mike Rosenkranz, Plantation, FL

My daughter Sue and I share our household with four furry friendly felines; a never-ending series of cat-ventures which always amuse, but more importantly, put into purr-spective the joys that are present in our lives but too often obscured by the strains of day to day living. Our four have known only the sound of my Servox, but treat that sound no differently than previous cats had treated my original voice. They completely ignore it. Oliver has chosen my right shoulder as his night's resting place, and within seconds of my turning off my light nuzzles me with his nose and is curled snugly in place.


 


 

Joe Hilsabeck, Edelstein IL, Radition[07] lary [09]

I have a yellow lab named Dude, acquired him 2 months before I started radiation for cancer of vocal cords, 2 years later became a lary. So he had heard me speak and learned hand signals in about 2 weeks after I came back, even though I now have a TEP he responds better with hand signals. My wife still doesn't do hand signals well, so if she wrinkles her brow I send her a text message to get even. We have had a menagerie of animals horses, cats and whatever kids brought home, our pets have always been special to us, but none more so than our labs. When I was doing radiation and would be up at night feeling bad Dude would sit with his head on the arm of my chair all night, till someone else got up. He just seemed to make me feel like he was watching over me, he is very special.

 


 

Loyd Enochs, Evansville, IN

My wife has always had pets but I never did (except for a few aquariums). When we were dating, prior to my surgery, her Dalmatian and I became fast friends and she took note. About 6 months after my coming home after surgery, we started discussing adopting a puppy. We both agreed that small, yappy dogs weren’t appealing to either of us and we decided on large breeds; like Dalmatians, Mastiffs and the like.

As we started actively looking, one puppy became two (so the first wouldn’t be lonely) and then she saw these three adorable, 8-week old litter mates on an online adoption site.

 

Who could pick just two and leave one behind?

Their mother (a mastiff mix) gave birth to them in the shelter after she had been rescued. We called the shelter where they were living and made arrangements to drive the 5 hours up to Chicago to get them. The volunteers at the adoption center hadn’t gotten the word and were shocked when they realized we were adopting all three of them at once. (Happy, but shocked.)

Yes, that is the same gate, just two years apart. Today, (as seen at the same, but reinforced, gate) they are 4 ½ years old and, left to right, weigh in at 85, 90 and 93 pounds.

The three boys have never known me except as a lary and consequently learned to respond (or not ) to my TEP voice. They have given us many wonderful hours of joy and love.

 


 

Frank Klett, East Brunswick, NJ June, 2008

I had my lary on 2 June 2008 and was in the hospital for 3 weeks afterwards...which I hadn't done before.

I've had a cat named Bernie since 2005 when my youngest girl and her family were transferred to San Diego (Husband works for FEDEX). They had my grandson Roco then 4 months old, and Sarah asked me to Cat Sit Bernie (her cat) then 6 years old. He and I bonded as they say, and I became his best buddy (he liked my treats) and he was always at my side.

He is a Main Coon which are noted to be a large breed and a "one person cat." When I was gone he slept in the entrance hall each night waiting for me. When I came home he was all over me whenever I sat down or laid down...like glue! He still hasn't figured my not talking to him as I once did...but I now use my hands to clap and let him know when and where.

Yesterday was his 16th birthday and for a cat that's pretty old. I have him on a low fat diet so his weight in now 20 lbs.. down from 33 lbs. a year ago. Better for his tired legs!

 


 

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

Staff of Speaking Out

 

 

 

 

 

 

 

Silence and Speech


I’ve just finished a 2-month winter retreat at a small meditation centre in Wales. We were in silence most of the time – only talking when we needed to communicate about practical matters. That might sound weird if you haven’t been on a similar retreat, but silence plays a large part of allowing our spirits to heal. So much of our normal daily chatter is unnecessary – just to fill what would otherwise be an uncomfortable silence. We so easily read a message into silence – that the other person is withdrawing, in a bad humour, that they’re withholding something, that they don’t trust me, that they think I’m not worth talking to ... and so on. Or we blame it on ourselves, feeling uncomfortable that we have nothing to say, feeling small or stupid as a consequence and assuming the other person is condemning us in similar tones. But if there is a rule of silence, it lessens the power of these negative thoughts, and we can enjoy the ease of not having to think of things to say.


Ironically I often find myself fonder of others when we are in silence! For example as we shared the kitchen work, I was usually chopping vegetables, Sarah often washing up, Hui and Wendy were in and out of the kitchen during their various cleaning chores. With my head clear of the need to form any thoughts or opinions, I could be more sensitive to the others and keenly aware of their whereabouts and movements, letting their presence evoke a natural response of friendliness and joy. It was often a lovely part of the day - as if we were all participating in a graceful silent dance!


Of course there were times when we spoke. But these were usually simple statements and to my great relief, the others could normally read my lips and gestures so there was no need to wear the electrolarynx all the time. I felt very grateful for their skill in interpreting my ‘silent speech’. It made things easy for me. It also helped me see that the burden of laryngectomy is shared: it’s not only me who feels my lack of easy speech, the other person also feels this and has to make an effort to compensate – either by tuning into the EL, or interpreting signs or lip-reading. Rationally this is obvious, but when negative emotions strike they cause a split between the heart and head, and I feel isolated, as if I’m the only one suffering from laryngectomy. Those moments of easy, happy communication lifted that veil of loneliness to see (always a surprise!) the patience and goodwill in others who help me live with this condition.


I noticed this in a different way on the morning the resident teacher, a Buddhist monk named Bhante Bodhidhamma, came back from his retreat in Germany. I was the only other person in the centre at the time. He had arrived late on the previous evening and so we hadn’t yet said hello. After the morning meditation, he lit a candle and started the morning chant. Pre-laryngectomy I would have joined in, but now I don’t see the point in inflicting an EL squawk on the proceedings so his voice was the only one chanting. For the first time since my operation I was the only other person in the room during the chant, and I felt my silence very acutely. I also heard sorrow in his voice, which again drove home the message that it’s not only me who suffers from the loss of my voice. In so far as anything of value has been lost, it is lost to the world, not just to me.


Now that I’m back in ‘ordinary life’ I’m wearing my EL all the time again. I find that amplification helps so I also wear a headband with a mike attached as well as a loudspeaker strapped around my waist. Even then, it can be a struggle to be understood. I brought my mum out for lunch today to mark my return to Dublin. As the waiter couldn’t understand me, she did the ordering. Not a big deal, but a small trickle of humiliation leaked into my good humour for a while – and probably mum felt something similar on my behalf. Sixty years of living with a good voice have led me to expect that I will be understood easily, and my psyche hasn’t re-programmed itself to suit the reduced expectations of laryngectomy.


Not yet anyhow – but I have great faith in the power of mindfulness here. Today for example, I could sense humiliation tempting me towards anger and self pity. I could feel these pulling my tissues into a tight knot around my neck and shoulders. There was something satisfying about tightening the knot – as if I was confirming my worst fears, saying: “See, I’m totally incompetent now, I can’t do ANYTHING right”. At the same time the bright scene in front of my eyes, the prospect of lunch, the pleasure to be celebrating with mum – these all brought lighter, pleasant sensations which strengthened my resolve not to tighten the knot of misery.


And so the humiliation passed, and we spent a happy afternoon lunching, driving around the hill of Howth, making plans for Easter. I firmly believe that meeting each of the small challenges of laryngectomy in this way is gradually re-programming my psyche. I know it will take time – sixty years of living with one set of expectations can’t be written off easily. And no doubt, I’ll keep asking for a reverse-laryngectomy miracle! Wouldn’t it be wonderful? But until that moment, I’ll do my best to let mindfulness teach me the deeper truth on offer here: not to expect happiness based on easy speech or anything the world can offer; to seek instead that quiet unworldly happiness based on acceptance of things exactly as they are.

 

 


 

Favorite Places

~ Jack Henslee

 

Florence, Italy

Ponte Vecchio


My first trip to Florence was in 2006. I had attended the Congress of European Laryngectomees conference in Croatia that year and that as a great adventure in itself. We drove from Amsterdam, NL (courtesy of Marianne Kooijam, a WW member) through 4 counties to get there and on the way back she dropped us off in Northern Italy where we took a train to Florence.


Unfortunately I had gotten ill my last day in Croatia but I wasn’t about to miss going to the cradle of the Renaissance that I had read and dreamed about most of my life. It was # 1 on my bucket list and I was going. The highlight of that trip was a city tour that ended at the Uffizi Museum; one the world’s greatest for Renaissance art. Other than that my illness prevented me from doing a whole lot more but I vowed to return someday.


That return happened in 2012 when we did a combined trip to Rome and Florence. What a fantastic experience! After visiting Rome we hopped the train to Florence (about a 90 minute trip) and stayed at the really, really elegant St. Regis Hotel (love using points). Back to the Uffizi to marvel at the art by the masters Leonardo da Vinci, Sandro Botticelli, Titian, Raphael, Michelangelo, Francisco Goya, Pieter Paul Rubens, Rembrandt, and so many more. Then off to the Accademia Gallery to view (in my mind) the greatest sculpture in the world, Michelangelo’s David. It is truly stunning plus there are many more sculptures by Michelangelo and others.


The city itself is just a true joy. The main part (old city) is mostly blocked off to traffic and the flat terrain makes it an easy walk to many attractions such as Boboli Garden, Church of Santa Maria Novella, The Basilica of Santa Croce (burial place of Galileo Galilei, Michelangelo, and other notables), the Pitti Palace, and the famous Ponte Vecchio Bridge. These are just a few of the many sights and things to do in Florence in addition to the shops and fantastic food. Your options are endless.


If you like art, history, archeology, food, wine, and maybe a little romance….. Florence is my # 1 recommendation. I know I’m returning because there is still so much I haven’t seen, and who knows… maybe we can share a glass of Chianti together!

 

Carmel, CA (Monterey Peninsula)

Lone Cypress


This jewel is close to home with only a 2 ½ hr. drive for a quick and enjoyable getaway. The entire area offers two of my favorite past times; playing golf and looking at art. Plus a great added bonus is lots and lots of great restaurants featuring a variety that mostly leans toward Mediterranean (think Italian) and seafood but there is something to please everyone. A couple high end places in Monterey are the Whaling Station and the Sardine Factory with lots of other options around the Wharf and Cannery Row. The Monterey Aquarium is one of the best around and there numerous art galleries scattered around town.


My preference however is Carmel…..specifically downtown Carmel on Ocean Avenue which leads to the beach. Be forewarned though, if you take the wonderful walk down Ocean Ave to the beach you may have a hard time walking back up. Its 4-5 rest stops for me when I do it, but the good news is they have numerous benches to accommodate us.


Ocean Ave and its side streets must have 50-60 art galleries.. If you like art this is heaven with hundreds of great artist’s work on display and for sale. I normally stay in one of the many small boutique hotels/motels downtown so I can easily walk to anything I want to see or do. Right now the Candle Light Inn is my favorite mainly because of parking, location, a great fire pit outside where we enjoy a little wine and some deli snacks for dinner on one night and then on the other nights we walk to 3-4 other great options. Bistro Giovanniv is a fantastic little place just across the street from our room that serves the best sea bass I’ve ever had and great paella; I will probably be celebrating my birthday there the day before you receive this. Other notables are Flaherty's (best seafood platter ever, and giant crab legs), and Little Napoli (great Italian food and a grilled artichoke to die for). But my must do, one stop is Ah Shucks Oyster Bar. I usually just do a martini or two there along with some fresh shucked oysters or a fantastic sampler plate for 2 before we head out for our real dinner.


Then of course there is the golf. I know…. Most of you don’t play and it can be very expensive in this area depending on where you play but there are bargains also. Pebble Beach is probably the most beautiful and well known course in the world and it commands a $495 fee but specials do occur at times.


Just one more thing… Everyone speaks English!


Footnote:
I submitted this article in hope that it might in some way encourage others to share their travel adventures and dreams with all of us. I made this one a little long to illustrate 2 examples of my favorite places but we would love to hear about your favorite place or events. If you’ve been anywhere interesting and enjoyable we’d like to hear about it.

Please note; this is not restricted to laryngectomees so please send you submissions to: editor@webwhispers.org

 

 

 

 

 


 

 



We've had a strange winter in the South of England, with plenty of snow in the North. I always get purple crocus showing first, but this year everywhere we have yellow crocus in full bloom, plus snowdrops, but even more amazingly daffodils. So a poem dedicated to my American friend, Joeann Bowerman, who, like many others, is yearning for spring!

 

THE SPRING FANFARE

The rising sun smiles on all today,
the daffodils turn and begin to play,
blowing their trumpets so silent and clear,
so that all the fairy folk can hear.

Tossing their heads in the gentle breeze,
spreading their arms with carefree ease.
Wriggling their toes beneath the ground,
avoiding those stones which always are found.

Telling the flowers " It's not so bad."
now spring is here, you should be glad.
Their flash of yellow, covers the earth,
giving crocus, narcissus, such joy and mirth.

Trumpeting to all, you must today,
happily feel glad and gay.
Look up, look up to greet the sun,
and give a smile to everyone.

 

 

 

 

 

 

 


Cord Cutting, Windows 10, and New Gadgets Galore

 

In just a few months we have been bombarded with new products and reinventions of others. We now have iphone 6 and 6+, Galaxy 5S, Galaxy Edge and Note 4, consumer quality drones, 4K TV sets that no one can afford and that has no programming, You Tube preparing to launch a Netflix killer...and blah blah blah.

All this reminds me that we now have our once sacred durable goods electronics becoming consumables. We find ourselves "upgrading" our phones to a newer model, not because the old one is defective, just because a newer model has been introduced.Of course the mass feeding frenzy we have created has led to lower and lower prices, which just happens to further increase the frenzy. You just have to love capitalism!

To further encourage us to upgrade our hardware the industry fans the flames by developing new and in many ways of using our hardware with "improved" ways of using it. Enter Windows 10...To use your computers and phones ot a more personal level we now have touchscreen technology to enhance and expand our use of our hardware gadgets.

Dave's Computer Tips gives us a brief summary of just 10 things you couldn't do 25 years ago.
http://www.davescomputertips.com/10-things-you-could-not-do-25-years-ago/ 


Internet Explorer Going Away.
As you probably know by now Microsoft has announced the effort to further eliminate security isses and huge advancements for the use of our hardware. Here’s another new selling point: Project Spartan. The current Internet Explorer is a hellacious can of worms, demanding massive security fixes every month or so. Microsoft’s been working on a replacement for IE for years.
Project Spartan is a “Universal” browser that, obviously, uses the WinRT API. With Windows 10’s ability to run Universal apps inside windows on the desktop, Microsoft can finally start the migration away from IE — replacing it with a vastly less buggy and infection-prone Spartan. (Win8’s full-screen Metro version of IE has always been a cumbersome and unintuitive joke.)
The link below will give you more information and the link to download the latest version of Internet Explorer if you haven’t already done so.
http://techbeat.com/2013/03/internet-explorer-10-coming-to-windows-7/

TV and Media
We already have many alternatives to broadcast television...for the new generation the cable companies have been hard pressed to give a compelling reason for them to "pay " for their entertainment. the reasons are various but most its a matter of expense and lack of choice.

Once upon a time the cable companies convinced the government entities that in order to build an infrastructure to support providing cable service to their communities thaey would need the right to be the sole provider of those services in order to recoup their costs and to continue a viable long term service. And there you have it "Hook Line and Sinker"...we were had! Contrary to cable the satellite providers did not have the same protection required, hence we can select their service instead of cable.

The new service market includes many new ways to select your entertainment provider or providers. We have Netflix ($8 per month), Hulu ($8 per month), Amazon Prime (included in Prime Membership), Sling TV ($20 per month), Snag Films (Free), and soon to be You Tube Pentium (No Pricing announced) and Apple TV (no pricing anounced).
Depending on one's tastes and budget it is now possible to selectively purchase media services as yu desire or none at all by using the old standby antenna for over the air broadcasts.
The links below will provide more info and reviews on the various products;

Sling TV
http://www.cnet.com/news/sling-tv-comes-to-xbox-one-adds-history-lifetime-to-base-20-package/

Apple TV
http://www.cnet.com/news/apple-said-to-plan-launch-of-subscription-tv-service-to-in-the-fall/

Tablets and Smart Phones
Today’s tablet prices have fallen below $100 for Android models. At the same time prices for phones have gone up...considering what they do (which is supposed to be making phone calls).

The latest hot item is from "OnePlusOne" a Chinese company that has produced an Android phone that rivals Samsung's Note 4 and Apple's i Phone 6+. Very well received by the tech community it is quickly winning over many fan boys...the phone sells for $299 or $359 depending on memory choice selected. This is well below hte Apple and Samsung phones. The most relevant cost item is not in the quality of this phone but in the marketing...there is NONE! Sales are limited to those who are sent an invitation to purchase. Hence the company has no advertising costs. The OnePlusOne may appear on Amazon from time to time but sells out in a matter of hours.

Net Neutrality & Network Providers
The FCC has finally put the brakes in the cable industry's desire to charge a premium for a higher speed Internet connection. The ISP's wanted to charge Netflix and other media providers for access to high speed connections, which they in turn could pass on to their customers for a "more appealing" experience. In essence, the FCC has assured the American citizens that they will be spared a cost added on to their Internet usage.


Tips and Tricks
For those who enjoy Facebook, this article has some good tips to help maintain your privacy and security
http://techtalk.pcpitstop.com/2015/03/18/facebook-privacy-survival-guide/

Dave's Computer Tips dispels some common myths for us and explains why your never too old for a desktop PC;
http://www.davescomputertips.com/too-old-for-technology-not/


 


 

 

 

 

 

 

Sam 'n Me

 

Dr. Branton Holmberg was a college professor and business consultant for most of his life. He and his wife Margaret, a retired nurse, live on the water outside of Seattle, WA. After his laryngectomy, Branton felt he was limited in his communications with his grand kids so in an effort to entertain his grandchildren and great grandchildren,.he opened a door he never knew was there until he lost his voice.  He started writing short adventure stories that are entertaining, fanciful and very well written. His series Sam ‘n Me are about his grandchildren and great-grandchildren, all out of his tremendous imagination as they wander together into different adventures."

Branton wrote about his stories. “The format for the stories comes from my love of the Saturday matinee movies my older brother and I went to when we were kids back when WWII was still going on. I loved the serial nature of them because they always had me wondering what was coming the following Saturday. They are also intended to be brief reads that one can easily spend an enjoyable hour or two reading, which was the length of those Saturday matinee movies.”

This was started to entertain the children and ended with a big change for this laryngectomee.

HIs books can be found on Amazon under his namehis name. The link below can help you find them.

http://www.amazon.com/Branton-Holmberg/e/B00J906VWI/ref=sr_tc_2_0?qid=1424898365&sr=1-2-ent

 


 

 

 

 

Branton is a WebWhispers member since 2010, the year he had his laryngectomy. He is a great example of finding a new passion in life after becoming a laryngectomee. I have read several of his books and have enjoyed them very much.
Ron Mattoon

 

 

 


 

 

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