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8/28/15, 3:08 PM Whispers on the Web - September 2015 Page 1 of 22 http://webwhispers.org/news/Sep2015.asp September 2015 Name Of Column Author Title Article Type News Views Pat Sanders Food Rules? News & Events VoicePoints Paul Evittts, Precision Medicine - Research Corner Education-Med Between Friends Donna McGary TEAM ROC ( Run Over Cancer) Commentary Speaking Out Members Food Changes Opinion Dear Lary Noirin Sheahan Swimming our way into the Paralympics? Commentary Travel With Larys Joss Berndt Impressions of a Furtive Observer Experiences The Speechless Poet Len A Hynds The Dangerous Bath Seat Prose & Poetry Bits, Bytes & No Butts! Frank Klett Software Hints - Q & As Computers P.S. Lewis Trammell Point A - Meeting to Point B- Symposium Experience INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp COMMENT HERE FEEDBACK

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Page 1: Whispers on the Web - September 2015webwhispers.org/news/documents/WhispersontheWeb-September20… · morning and my RX Insurance had a special newsletter on Food. Like it was meant

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September 2015

Name Of Column Author Title Article TypeNews Views Pat Sanders Food Rules? News & EventsVoicePoints Paul Evittts, Precision Medicine - Research Corner Education-MedBetween Friends Donna McGary TEAM ROC ( Run Over Cancer) CommentarySpeaking Out Members Food Changes Opinion

Dear Lary Noirin Sheahan Swimming our way into theParalympics? Commentary

Travel With Larys Joss Berndt Impressions of a Furtive Observer ExperiencesThe Speechless Poet Len A Hynds The Dangerous Bath Seat Prose & PoetryBits, Bytes & No Butts! Frank Klett Software Hints - Q & As Computers

P.S. Lewis Trammell Point A - Meeting to Point B-Symposium Experience

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

COMMENT HEREFEEDBACK

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Food Rules?After writing to ask WW members to send a messsage to Speaking Out about Food, I opened my email thismorning and my RX Insurance had a special newsletter on Food. Like it was meant to be!

After a larygectomy, we might have more trouble chewing and swallowing which naturally changes somethings you eat. Some of our changes are due to other illnesses and find we like more food choicesthan wethought.

Are you on a restricted diet? Do you keep your calories or carbs to a certain level? Do you avoid fats? 4years ago, I found that I was diabetic, If you have to be interested in needs instead of wants, you likely needto read the labels on packages of food to know if you are staying within restrictions. Even if you are notrestricted, it is interesting and sometimes surprising to see how much is in a serving and what the servingsize is. Do not try to diet on both Calories and Carbs because the allowed items are almost totally different.

You can be on a low carb diet for things like diabetes or yeast (candida), which is a problem for many larys....and not need to count calories or fats but they can add weight so don't eat too many of those two. All lowcarb diets are not the same and, if the only thing you specify is for it to be low in carbohydrates, you can stilleat fats, preferably the good kind...and fats have a lot of calories which puts a lot of weight on you. Mainthing to stay away from in low carb is SUGAR! Anytime, anyplace, anywhere.

Let's just think about carbs and how to count them. I like to count about 20 carbs as all I want in one meal. Iam on a perpetual low carb diet. I look at canned green beans as almost a free food on any diet without a lotof the additions. In most regular sized cans of green beans, there are 3 1/2 servings. If I am havingsomething with extra carbs like a small potato, adding 1/2 can of beans lets me have the taste of potato buthelps me to fill up without adding many carbs so it requires some simple math to count to the serving size Iwant. If the net carbs in the beans per serving is 4, then in the whole can, it comes to 14 and my 1/2 can is7. No carbs in meat, Hardly any in lettuce with Balsamic vinegar & oil Lite, .... so excepting the potato, it isnot over 10 and they are large servings. What I have to watch for is the size of the potato (if it is big, I mighteat 1/4 of it) because I would like to keep my whole dinner not much over 20 carbs. By setting my goals low,if I run a little higher on carb count, it is not a worry.

For those on a calorie diet, this is also a good food. Green beans might be marked 20 calories in a serving...Following the same pattern, that would be 70 calories in a can and 1/2 can would be 35 calories.

As with the green beans, you might want to check out tomatoes.DelMonte, Petite Cut Diced Tomatoes,

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One serving - 1/2 cup (with 3 1/2 servings in a can.) Total Carbs - 6gAND you get to subtract the Dietary Fiber of 2g)... so 4 grams per serving that you eat.

Let me give you an idea of a cold plate for supper and how you count the carbs:0 carbs - several slices baked chicken0 carbs - ounce or two of cheddar cheese, bite size.4 carbs - 1/2c cottage cheese, topped with:4 carbs - 1/2c Petite cut diced tomatoes 2 carbs - 1/4c green beans

4 carbs - 1/4c dry roasted peanutsIf you need something else, slice up lots of cucumbers or yellow squash for another 3 carbs, put some rawcarrots, broccoli or cauliflower on the plate.) and dip them in sour cream (1 carb for 2 TBS) instead ofcrackers, (which are 10 carbs for 5 crackers. Enjoy your picnic type dinner for 20 carbs.... Oh, watch whatyou drink and leave off the dessert.

Your diet or diabetes will love it... no sugars, no need to strain your body to take care of it.Your yeast will hate it... no sugars to eat for them and that is their favorite thing!

In your checking what you are eating to fit your diet:

Calories, fats and cholesterolFat-free doesn't equal calorie-free. If a product has no fat, it may be loaded with other unhealthy ingredientsthat increase the calories but add nothing to nutrition. Keep an eye on "calories from fat" and try to makemost of your fats monounsaturated or polyunsaturated fats. Cholesterol is found in animal-based foods.

CarbohydratesMeats, eggs, cheese are freebies on low Carb diets. Fruits, vegetables, beans and whole grains containhealthy fiber and natural sugars, give you energy and are good for your digestion and your heart. Butcareful!ly choose small amounts and look forthe word,"whole" as in whole wheat, whole grain, whole oats -and throw brown rice into this list. Now, about sugars. Sugars are carbs, too, and they exist naturally in manyfruits, starchy veggies so if you are really controlling your diet, you will go light on fruits.

Enjoy,Pat W SandersWebWhispers President

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Precision Medicine

One of my goals for a Research Corner has always been to educate people on WW about new research. Mylast article was all about the importance of physical exercise and its important relationship with quality of lifefor people with cancer and for overall brain health. (Hopefully, some of you started an exercise program overthe summer!) One of the best places to learn about new cancer research trends is to go the National CancerInstitute (NCI) website http://www.cancer.gov where they remind you, "Some people with cancer will haveonly one treatment. But most people have a combination of treatments, such as surgery with chemotherapyand/or radiation therapy. You may also have immunotherapy, targeted therapy, or hormone therapy."

A key initiative led by the White House is all about precision medicine, also termed individualized medicine.When I teach my students about this, I liken it to good ‘ol Bones McCoy on Star Trek and that scanner hewould always put on people before treating anyone. The crux of precision medicine is to use specific,individualized information from the patient (e.g., genes, environment, proteins, lifestyle) for an accuratediagnosis and to develop the most appropriate treatment plan. This also takes into account specificinformation about the type of cancer. This isn’t just about cancer therapy either: the future of medicine will beheavily focused on precision medicine.

This hit home for me recently as my aunt had her hip replaced and the physicians can’t seem to find a painmedicine that she can tolerate. Rather than just trying a variety of different pain meds, the future health careteam would have a much better idea of the most appropriate medications from the start.

Getting back to the role of precision medicine and cancer, the director of the National Institutes of Health andthe former director of the NCI wrote an excellent article detailing the future of precision medicine with cancerprevention and treatment http://www.nejm.org/doi/full/10.1056/NEJMp1500523?query=featured_home. In thearticle, they discuss how cancers are a “clear choice for enhancing the near-term impact of precisionmedicine.” Treatments with "targeted therapies have been (and are being) developed and several have beenshown to confer benefits, some of them spectacular."

I’ll be sure to keep my eye out for any updates on this for future articles but in the meantime, you can startenvisioning going off to your doctor’s appointment someday and having your doctor wave some device overyour body. Just like Dr. Bones McCoy.

RESEARCH CORNERPaul Evitts

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TEAM ROC ( Run Over Cancer)

Every year Eastern Maine Medical Center Cancer Care holds a fundraising event called Champion the CureChallenge. It a walk/run/ride held on the 3rd Saturday in August and it is huge. This year they had 2400participants and as of August 25th had raised $572,000 of their $600,000 goal and donations were stillcoming in. Every penny benefits research and cancer care right here in Maine. This was the second year I

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have walked the 5K as part of Team ROC (Run Over Cancer) started three years ago by my nephew after hesuccessfully completed his first round of treatments at EMMC for lymphoma. Every year the team gets moremembers and raises more money making Team ROC one of the top fundraisers; all the more amazing sincewe have no big corporate donations - it’s all just individuals getting involved one way or another.

Last year I walked with my grand-daughter, Kayleigh, then just 5 and about to start kindergarten. This yearour whole family walked. Kay and her Dad pretty much jogged, Kiera, age 3 made a strong start but neededsome assistance from Mom the second half and Nana, slow and steady, kept up the rear! We weren’t topfundraisers but we were part of the 95 member Team ROC effort that contributed $18,500 and counting sincedonations are being accepted through the end of September.

This year was particularly poignant for us since my Dad died from prostate cancer in January and mynephew having graduated from the Maine State Police Academy in March, had a miracle baby girl in Mayand learned the cancer was back in June. He ran the 5K with his wife and they pushed their baby girl in herstroller over the finish. He is in an experimental immunotherapy treatment in Boston that looks promising andis responding well at this point but, obviously, we are all worried.

Last Saturday was a day of extreme emotion. The event itself is extraordinary in many ways. It is extremelywell-organized from registration, parking, food, music, support services before, during and after the races tothe tee shirts, giveaways, photographers and volunteer army. But it is the tangible feel of the day that I mostremember – the cameraderie among many folks who have never met before, the recognition of a sharedcause, the profound emotion of the participants, some crying as they crossed the finish line, the tee shirtsemblazoned with people’s names and yellow ribbons everywhere, the colors we wore for our teams and theway too many cancers we were there for. That is what I took away, as did everyone else in my family, on ourteam, on all the other teams – why everyone there will probably be back next year and every year after thatthey are able. Some to mourn, some to celebrate, but always to fight.

Events like this are held all the time in communities everywhere. If you haven’t been a participant yet, I urgeyou to try. The EMMC Challenge offers everything from 1K family walks to 100 mile bike rides and prettymuch everything in between and if you can’t walk, run or ride you can donate and perhaps go to the race andcheer. Let me tell you, as I crossed that finish line after my modest 5K walk and the announcer said,

“Another survivor coming over the line, folks. Let’s give her a hand. That’s what we’re here for – to make surewe have more survivors!” and the crowd cheered…well, that felt pretty darn amazing.

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Mike Smith - 9-11-2008 North Augusta, SC

I am just a few weeks short of being 7 years since laryngectomy surgery. I don't eat or have the appetite I didor had previous to my throat cancer, with one significant exception.....and that is me and Little Debbie havedeveloped a very personal relationship!

Throughout my adult work life I pushed hard and long, averaging about 4 hours sleep a night, and during thattime ate all the good and bad things. My weight didn't change more than 3 or 4 pounds during a 30 yearperiod. Then the cancer diagnosis and radiation, and as a result I lost about 12 pounds. What kept me goingduring the treatment and right afterwards was vanilla milk shakes with 2 packets of Carnation instantbreakfast in each one of them, and I was able to limit the weight loss without going the feed tube route.

When I had my actual laryngectomy surgery, I was blessed in being able to eat on the third day after surgery,and I gradually returned to a normal diet (at least normal to me). While most of the taste of my favorite foodshad changed, some better and some worse, the only thing I had to remove from my daily diet was un-toastedbread....I just have never mastered getting bread down, even in very small amounts. The other significantchange was immediately learning to take smaller bites, take my time, and chew everything about 3 timeslonger than what I had been used to. I quickly found if I took too large of a bite, and/or didn't chew it longenough, the food would come back and out. Not the most impressive thing to do when you are out eatingwith friends and you throw up in front of them. I learned quickly....

Back to Little Debbie......I think my attraction to these cakes is pretty simple, and that is the acid taste I can'tseem to get rid of (and yes, I take Omeprazole). I brush my teeth a number of times each day along withmouthwash and that takes the acid taste away for a short period of time. Eating the Little Debbie cakes doesthe same, and I like the taste of them. I can see everyone is imagining me sitting on my couch watching TVwith a number of Little Debbie boxes on the floor and crumbs on my shirt...well, it’s not that bad! Almost 8years ago when I was told I had throat cancer, I weighed 178 pounds. This morning I am at 179. My wifedoes say, however, that she is very jealous of me being able to eat them without gaining any weight.

The radiation has done a number on my lower teeth, as they are becoming quite brittle and I realize it is onlya matter of time before I have to address that. I think the condition of my teeth is affecting how I eat nowmore than anything else. We have been holding off doing anything about this because my insurance does

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not cover it and almost everything will be out of pocket.

One last thing......put two Little Debbie Swiss Cake rolls in a bowl, then 3 scoops of vanilla ice cream, drizzlesome Hersey's Chocolate Syrup, and top it off with a bit of whipped cream and a cherry! Ha! Mohan Raj - March 2010Bangalore, India

No, I have not made any diet changes, voluntary or on purpose, afterbecoming a Lary. Evanlee DaumAtlanta, GA

Eating has become far more of an adventure that I should have avoided sadly. I've found that the very thingsthat are supposed to be healthy i.e. chicken and turkey are just impossible for me to swallow now. Anythingthat is the slightest bit dry just will not go down easily.

I swallow a lot of stuff two or three times before it stays put. Now if that item happens to be dessert then I geta couple shots to enjoy it but if it is dried out pork roast, not so much. On the up side I've learned that by farveggies are the easiest to eat.

I'd like to have some idea if this is going to get better or if it will continue to degrade. Seems there is alwaysone more unknown around the corner when it comes to eating. That can be a good thing. I've never toleratedhot spices very well but I may give that another try. A lot of foods now seem more tasteless than they werebefore. I have become quite good at adapting, I think those of us who do have a much easier time of it.

Lorna Larson - 1/2014St. Louis

Orange! Tootsie Pops, Skittles, Starbursts! If they were orange, they were MINE! I would never share with myfamily. After my surgery, I had my first orange candy on a trip to New Mexico last August. Tootsie Pops whiledriving to help break up the monotony - and help me stay awake. Of course, the first one I grabbed wasorange. DISGUSTING! I still try the orange candy occasionally, but it is all still disgusting. Pete Meuleveld – June 2010Salem, OR

I am lucky, I guess, in that I can eat anything I want to since my surgery in 2010. But, I have found that Icannot tolerate bananas anymore. They taste very metallic to me and I just can't eat them. On the otherhand, I never used to care for blueberries. Now, they taste really good to me. So it all evens out I suppose.

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Debbie Deaton - 2/28/12Cincinnati, OH

Hi. I began to love spicy foods once I could eat after my surgery. The spicier, the BETTER! Hamburgers andfries used to be my favs but since surgery, it’s Mexican or any other foods loaded with spices. Jack Henslee – Class of 79,88,&95Stockton, CA

I have been at this for long time and through the years I’ve had numerous changes to my diet. Of courseearly on I had the normal (for most people) changes related to swallowing, lack of saliva, loss of smell andtaste and some coronary problems that dictated a lot more caution in what I ate but also how much I ate.

Some of the things I gave up on I returned to at a later time as conditions improved or changed, or I justlearned to eat smaller bites, swallow better, and maybe substitute water for a little wine. A lot of things justkind of gradually changed with no clear cut deliberate action such as this year I’ve had exactly 2 hamburgersand I love a good hamburger! I’ve also only had about 4 -5 steaks this year and virtually no other red meat tospeak of. Of course my cardiologist thinks that’s a good thing but in reality I never started out to do that…itjust sort of happened.

That’s the reason I posted this question… to maybe see if anyone else has experienced this. I’m not surewhy I’ve changed this much but I suspect it’s simply because as I’ve aged and traveled I’ve just tried a lot ofnew things, or old things prepared differently. A really good way to experience this is to take a WW cruise.Just try spending 10-12 days with all that fantastic food without trying something different. You paid for it sotry it all!

Also, at least in my case, I really do eat less… because that’s all I want. I’ve always loved salads and soupsbut now I’m happy making one of them a meal instead of a side, A 3 egg breakfast with toast and hashbrowns is now only 1-2 times a month, with a piece of toast and yogurt, or a bowl of cereal being the norm.Well 1 egg and hash browns sneak in 1-2 times a week and maybe some rare biscuits and gravy on a coldmorning. Lots of pasta (easy to swallow), sea food, and some chicken but all the portions are probably half ofwhat I used to eat. My newest craze right now is grilled vegetables; artichokes (fantastic), all kinds of squash,tomatoes, bell pepper or whatever. It’s amazing what a little char will do to the flavors! Scott Sysum - Aug 2008Concord, CA

HiWell I don't eat as much as I used to. I still like spicy food, and my taste came back sometime after thesurgery, don't remember when. The first thing I had to eat after I was allowed to swallow after the surgerywas bacon, still love it to this day. I have difficulty swallowing, so I have to choose my food carefully. Plus Icut it up fine and chew a lot!

As for tastes, lately I have been cooking Korean, Japanese and Filipino dishes. The Korean because its veryspicy (I am making Napa Cabbage Kimchi this weekend). The Japanese because it has such subtle tastes,but very good. The Filipino is also spicy. I also cook a lot of Chinese stir fry dishes, they are easy to swallowsince the ingredients are all chopped up pretty fine. But that and Mexican food I have been cooking and

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eating for years. Next I think I will attempt Thai and Indian food cooking.

As Jack said, there is so much out there to choose.

Sharon Severini - 11/2012Waterbury CT

Hi all,Well glad to say my habits have not changed at all! I am a lucky one! Only during rads after my Lary op did Inot have appetite and luckily lost about 60 lbs which I needed to lose. But... Once it was over and I startedtaking Ambien to sleep all weight and then some I gained back! Funny. Not.

Also overactive thyroid doesn't help. Take med for it but Ha ha! I gained back about 80 lbs. instead of onlythe 60 I had lost! Omg! I feel like a good year blimp but love my food. Maybe I should take up drinking andwon't eat as much. Oh well at least I can eat unlike some of us lary's. Now I think I will go eat me a giantsandwich with a can of coke! Lol.. C ya .....

Henry Large - December 2014

I was cleared for liquids within a week and soft food a day or two later. Within a month I was eating prettymuch whatever I wanted. These days my diet is much what it was before my bout with cancer. The folks atMass Eye and Ear from surgeon to nurses were, and still are, terrific!

Tom Whitworth - Atlanta, GAMarch 2014

For a good many years, I favored any kind of lettuce over iceberg, proclaiming to anyone who would listenthat it is comprised almost totally of water and therefore of little nutritional value. Basically, that is true, on thesurface. But iceberg was on the anti-reflux/Barrett’s Esophagus list of things to eat. “Yuck” I thought, “iceberglettuce? how boring!”. Then I considered the potential benefit of all that H2O not only in neutralizing acid butin battling dry mouth. I have learned also that the crispiness of chilled iceberg makes it much less likely thanits cousins to get hung up on my TEP valve or elsewhere en route and can be quite refreshing on a hot,summer day.

While at the voice institute in Baltimore, I tried a wedge salad. I used to laugh at people who did that, thinkingthey were getting ripped off, paying for a hunk of lettuce on a plate. As I began to dig into this simple, yetdelectable dish, I think I fell in love, as did my mouth and my tummy. I now enjoy it as often as I can. Therecipe:

¼ to 1/3 chilled head of lettuceCold grape tomatoes, halvedBacon, fresh cooked, crumbled (I use the preservative free. I figure if I’m going in for the fat and sodium, Ishould at least avoid the carcinogenic nitrates and nitrites. )Red onion, in rings (very few for me, but go for it if you can)Bleu cheese crumblesBleu cheese dressing

Any ingredient can be replaced by your preference except for the chilled hunk of lettuce. My GI Dr. does not

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need to know about the fresh cracked black pepper I add. It’s none of his business.

Betty Belou 2005

Hello everyone, when I first had my surgery, I lived on mashed potatoes & gravy. I never thought I would eatthem again. As everyone knows food tasted so bland then, that was almost 10 years ago.

Now I eat anything I want and it tastes pretty good! I really can't remember the taste before the surgery, Iknow it had a good taste, but now it's not so bad.

I can actually taste the food and it's pretty good! Good flavor, good taste, in all, I'm glad to have my tastebuds back.

Dennis Koob, May 2015

My wife is close to being a vegetarian. I never cared for food like this but have since changed my mind. Iguess when you are on a feeding tube once you get to start eating every thing is good.

Avocado dip is new for me, fish dishes other than shrimp, and lobster. I am now willing to try other dishes thatI would never have considered eating before.

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of themonth. Staff of Speaking Out

Swimming our way into the Paralympics? Last month I had my first dip in the ocean since laryngectomy. And it literally was just a dip. I can’t claim tohave swum but there were definitely a couple of occasions when neither my feet nor bum were on the sandand I was kind of floating somehow. What was really great was the exhilaration. Perhaps the wildness and

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vastness of the sea stirs some responding energy inside us. It really lifted my heart and the exhilarationlasted for hours afterwards.

I had wondered about swimming again and luckily had read the WebWhispers library section on swimming(http://www.webwhispers.org/library/Swimming.asp). But last month was the first time I’d actually put a toeinto the water. It wasn’t planned. I was on holidays with friends who aren’t usually interested in the water so Ihadn’t even brought my togs. But they were just back from a holiday in the Mediterranean, and having beenforced into the water by the heat, decided they wanted to keep up their daily swim. On our first day, at a littlecove in Ardmore off the Waterford coast, the sea was rough and the weather dull. I was relieved to be justwatching as they braved the cold Atlantic waves. But a seed was sown, and next day I found myself packinga towel and an extra pair of knickers and a long t-shirt that would cover the basics as well as lots of warmclothes for afterwards.

That day I started off by just paddling at the edge, getting acclimatised to the cold. The waves were still quiterough, so knee deep was enough for me. But once my friends had finished swimming and ready to help if Igot into trouble, I knelt down with my back to the open sea and let the waves wash up to chest level. Eventhat felt exciting and invigorating. And the buzz lasted for hours afterwards. On the following day the seawasn’t so rough and I wanted to make some effort at swimming. I stayed in very shallow water – about kneedeep between waves, and had my friends beside me in case of problems.

Remembering Pat’s advice from the library section on swimming, I first got confident with closing the stomawith my thumb and that this really made a waterproof seal. I ducked down into the water and exhaled slowlythrough this ‘closed’ stoma and learned to wait till I was well above water again before uncovering to inhale.All sounds simple, but it took several such ducks to feel anyway confident that I knew what I was doing.Then... lift off! I let my legs leave the sand during the waves – stoma closed of course. My feet or bottombumped off the sand again when the wave passed but somehow I would find myself floating again during thenext wave. So I suppose I should call it bumping rather than swimming – but it felt wonderful!

Then last week, we had a great celebration here in Ireland when the Special Olympics athletes returned fromthe games in Los Angeles. Newspapers and radio / TV carried interviews with athletes and their friends andfamily, talking about the powerfully positive impact of the games – how it helped to be focussing on thepositive, on what the person could achieve, on having a goal. And how it helped others view the ‘special’person more positively and gave them something interesting to talk about.

Now, I’ll readily admit I’m a bit of a dreamer, so it’s hardly surprising that my imagination started to run in thedirection of a Paralympics swimming event for laryngectomees! As well as all the positive effects of exercisethat Paul Evitts wrote about in last month’s WoW, and the psychological benefits of having a goal and anachievement to focus on, we would be dispelling the myth that a Lary can never swim again or even go nearwater. And of course we would be increasing public awareness of our condition and letting people see us in apositive light. This would reduce the embarrassment or fear that can surface when people meet a Lary for thefirst time.

As we know from the recent discussions in the Digest and the videos now in the library, one thing that isbadly needed is education for emergency paramedics on the condition of laryngectomy and how to helpneck-breathers in an emergency situation. What better way to support this than a Lary-swim, showing thephysical consequences of neck-breathing?

OK ... an Olympic event might be a pipe dream! But maybe we could move in that direction. Lary swimming

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is taught at the IAL, and each year there is a special time set aside for a Lary-swim. Could we build aroundthat? For example, people who can’t attend IAL could be at their local swimming pool or beach at the sametime, and maybe link into the IAL event via mobile phone so that someone could keep count of the numbersinvolved and all the different countries represented. And maybe we could find a way of counting the collectivenumber of swimming strokes we do – or some other measure of achievement? So each year we would havea target to achieve, and something to celebrate? In time, perhaps, the event could generate some publicity.

If you are tempted to get back swimming, do take every precaution to be safe. Read the library for tips. Wedon’t want to get publicity for the wrong reasons. And then, with your stoma covered, enjoy the bumps andthe buzz!

Impressions of a Furtive Observer

BUENOS AIRES – October 2011

Beautiful, vibrant, polluted by 24/7 buses & protracted construction.

Dirty. Cunning. Dangerous. Passionate. NOT a destination if you are looking for calm & relaxation but by allmeans a hot spot if you want to feel alive. The melting pot that is the typical ‘porteño’ has Italian as a mainingredient, seasoned with a mix of ‘viveza criolla’(1), English cool and Northern European candor – if it’spossible at all to make such broad demographic generalizations.

The stylish neighborhoods, the busy commercial strips and sophisticated business centers are surroundedby an asteroid belt of poverty. Out of these cardboard & corrugated metal shanties dart arrows of misery andcrime that hit both local and foreigners alike with painful reminders of the darker side of humanity.

In 2011 food is still (mostly) inexpensive. U$D 10 for a great lunch at healthpods in Palermo Soho, likeKrishna or Ricon de Las Flores. For U$D 3, a dozen empanadas and U$D 2 will buy you a dozen (small)croissants.

Has it bounced back from the dark pit of financial default and the depression of the 2000’s? Maybe. But it’sstill very far from its Glory Days of the early 1900’s. And apprehension, the feeling that this present affluence

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is precarious, can’t be escaped. Like someone who has been wounded too often to trust in life’s goodness,the ‘yeah, but…’ expression filters into any conversation about the present bounty.

I walk down Borges to Avenida Santa Fe and I flag down the bus that will take me to Barracas. It barely stopsfor me, rushing to make it through the light –which is already red--, its louvered doors hissing and flappingclose as soon as I’m on the inside step. I grab the bar with my left and fumble in my pocket for change withmy right hand, which leaves me nothing with which to operate the squawk box with which I speak. The driverlurches the bus forward while I to mouth to him “how much to Barracas?” No sound comes out, just thepursing and stretching of lips over silent words. He looks at me as if to an idiot. Not with malice, but withabout zero sympathy, he lifts his head and makes a fast swiping motion with his hand under the chin – “macomo, can’t you see sho non capicce silent speaking? (what do you have, lady, shit for brains?”

And I LOVE it! Here’s someone who just sees me as another someone, a clueless passenger distracting hisdaring high speed zig-zag through traffic in the city. Not a gimp, not a person to pity, just another commuter,sardined in among the suited office workers, the chattering students, the distracted home makers and dourlooking matrons.

Ah, Buenos Aires! God bless your Italians and their daring, your Latin DNA and Nordic spicing. I am alive andwell and ready for the adventure!

Joss Berndt

“Viveza Criolla” loosely translates to “Street smarts” with a tinge of deception. It was a term used bymany of Northern Europeans immigrants to define certain behaviors and actions by the local folk, the“criollo”.

Emerging designers showtheir creation at the CMD(Centro Metropolitano deDiseño) annual fair. A hub for creatives, theCMD partners with theArgentine government topromote design bothdomestically and in theinternational stage.

Tango –both past andpresent—impregnates thesights and sounds ofBuenos Aires.

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From the colors of muralsto what spews out of radiosof taxis and buses, tango isthe soundtrack and the soulof the city.

Of the manyneighborhoods, PalermoSoho is one of my personalfavorites. Teeming withlocals and tourists, thisenclave of chic holds manystreet fairs, remodeled oldbuildings, wonderfulboutiques and interestingcafes and restaurants,where you can have a 2-hour lunch under the lazyshade of old algarrobotrees.

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A recent request to do a poem using double meanings of medical terms reminded me of some ten years ago,when I got Tilly out of hospital, and became her full time carer. She was wheelchair bound and we used toget visits from nurses of the early discharge team, to ensure I was coping alright. One of them was calledSarah, a lovely young lady, always so correct and efficient., and she brought various things to make lifeeasier, including one day a bath seat, which clamped on across the top of the bath, making it firm, with gapsbetween the slats. Ideal not only for Tilly but also myself, in sitting comfortable and directing the shower byhand. I remember a conversation she had with me, warning me of those gaps in the seat, but being a shyyoung lady she would not say what could be trapped. Being ever mischievous I tried to draw her out, but withno success.

So a play on words of those many years ago, to answer the challenge.

THE DANGEROUS BATH SEAT

I answered the door and Sarah was there, that charming nurse, who had last brought a chair. She now brought a bath seat, for us both to share, as we are both aged and have to take care.

She fitted it up and explained it all, showed how to use it, with me in the hall. Told the wife how to sit and never to fall, clever young woman, like being at school.

Then to me she said," Watch your follicles, sir, when your sitting on the seat." For a bit of fun I queried her, asking, " Do you mean my feet.?"

But no, she was very mystical, looking slightly red in the face, or maybe she was diplomatical, but then spoke with a very good grace.

She referred to my ' Follicles ' as ' Articles,' and started all over again, and in a musical way, quite dramatical, she spoke very briefly of pain.

" You might find yourself in a manacle, and you would have to phone us real quick. That wouldn't be classed as a jolly call, to disentangle's a clever old trick."

" It would then be quite problematical, to the hospital we would have to send, as the problem would be purely medical

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the seat being attached to your end."

" I'm sorry I'm being political, it's the job that makes it so. My upbringing was strictly clerical, the daughter of a vicar, you know."

" Now Sarah, you know I'm amicable making tea whenever you call, but your shyness is quite pathetical, please tell me that word after all?"

" Hush sir, you’re being too naughty-cal, I'm going quite red in the face. I will have to make this a shorty call, and rush from this embarrassing place"

" Oh Sarah, I know you’re being tactical, and believe me I'm not a prude, but do you think it's quite practical, with all this to avoid being rude?"

Software Hints - Q & As

If This Then That (IFTTT)?

If you can recall your first lessons on spreadsheets, then you may recognize IFTTT as an operation youcould place into a cell and get a result for a formula. The use of this expression has become the bread andbutter of a software firm that now produces "recipes" using it to forecast weather, music selections, and in

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general any other things that you want selected for you. Once the recipe completes its search the result canbe sent to your email inbox. You can access one of their websites at the link below and checkout the freeofferings..IFTTT's Maker Channel Connects Your Electronics Projects to Nearly Everything.http://lifehacker.com/ifttts-maker-channel-connects-your-electronics-projects-1725690723

Eli, the Computer Guy in Videos (short ads are in place in front of video)

Do you really need anti-virus Software? Well, there are different responses to this question and they all boildown to "It depends". Eli the Computer Guy offers a very good short video to easily explain what thedependencies are...https://www.youtube.com/watch?v=gmALK-RsXJ8#t=264

On or Off? That is the question....There has been an ongoing debate for several years on whether it is betterto turn your PC off when you finish you work or to allow it to continue running ...there are many good ideasand reasoning behind each side of this debate. On the shutdown side we have power saving, less wear onthe equipment, less chance of aliens invading your hard drive...just to name a few. Meanwhile on the never shutdown side we have less chance of an alien invasion since you anti virussoftware is on and running, less expansion and contraction of the metal screws nuts and parts, an eventemperature is maintained thereby extending the life of your hardware...to name a few.https://www.youtube.com/watch?v=ngGm78FyIBY

Windows 10 (patience, another ad in front of video)

The release of Windows 10 is now well under way and there have been new reviews coming out everydayfollowed by updates on newly discovered features. The majority of reviewers have been positive. There arenew menus and much more emphasis has been placed on touch screen systems. For now the ideas thatMicrosoft has developed seem like a direction for their vision of the Company's future. The Wall StreetJournal has a brief video that best summarizes the reviews.

Windows 10 Review: A Worthy UpgradeMicrosoft's new operating system is free to owners of Windows 7 and Windows 8 PCs. WSJ Personal Techcolumnist Geoffrey A. Fowler explains why WIndows 10 is the best PC experience since Windows XP.https://www.youtube.com/watch?v=GBUU0FR3E00

If you're considering an upgrade, but aren't certain whether you'll be happy with Windows 10 then you mightwant to know they do offer you a parachute. If you are unhappy with the newest Windows you can use yourSystem's rollback feature to back to the version you had prior to installing the upgrade, Bob Rankin does agood job of outlining the steps to take and what to expect...

How To Undo a Windows10 UpgradeWindows 10 has a lot going for it. Improved speed and security, the return of the Start button, and the Edgebrowser are just a few things I like about the new Windows operating system. But it also has a few roughedges right now. The good news is that Microsoft has provided an “Undo button” for those who've triedWindows 10 and want to go back to what they had before. Here's how it works, and my experience using it...

Any newly-released major upgrade of complex software is going to have bugs. If you find them too annoying,and you're not interested in waiting for Windows 10 to stabilize, or you just prefer the comfort of your old

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Windows 7 or 8 system, here's good news: The UNDO Button for Windows 10. If you've upgraded toWindows 10 and you don't like it, you can do a "rollback" to the version you had previously.http://askbobrankin.com/how_to_undo_a_windows_10_upgrade.html

Apple iPhone 6S and iPad4 coming soon with iOS9

Apple has leaked an announcement for the release date of their iPhone 6S which will come with OS 9.1 andwill not bend at 30 lbs. of pressure as the iPhone 6 does...it is rated to not bend until at least 80 lbs. ofpressure are applied. there is expected to be a release of iPad 4 on the same date and again it will beequipped with OS 9.1. iOS 9 is full of enhancements you’ll appreciate every day. Your apps become moreessential. New multitasking features on iPad make you even more productive. Siri can do more than ever,and new proactive suggestions help you get things done before you ask. And improvements at thefoundation of the operating system enhance performance, battery life, and security. The more you do withiOS 9, the more you’ll wonder how you ever did without it.

One person who will be sure to be an Apple buyer for life is Sam Ray,18 year old Tennesseean, who becamepinned beneath the two-ton truck while working under it. He faced being crushed to death when no oneheard his cries for help and he could not reach his phone. He tried to see if he could move anyting besidesmuscles..Then he heard Siri, the hands-free virtual assistant, activating in his back pocket.

Sam pushed up on his hip to activate Siri and called to her to call 911. After several attempts, he heard avoice on the other end of the line. He said, “When I heard a woman talking from inside my pocket, I juststarted shouting,”“I didn’t know if she could hear me or not, but I heard her say that help was just around the corner.”And he heard the sirens.

Share your decisions with friends

Have you upgraded? If you have why not share your thoughts on Windows in the Webwhispers Forum or inthe Facebook group? We can all share experiences and learn from one another.

Have you made a visit to our Forum or Facebook group recently? The discussions have been extremelyinformative and helpful. Beside reading for your own benefit you can help others to find answers they areseeking by adding your thoughts and experiences to the discussions.

Why not make a plan to stop in at the Forum and our Facebook pages for more community news updatesand personal exchanges.

Frank in NJ

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Getting from point A - First meeting topoint B - First Symposium

Lewis Trammell

The purpose of this story is to let anyone who is thinking of starting a meeting/group/club know that it ispossible but it takes work and patience. We do have to work hard so they will have these places to visit andto meet other members to learn from and relate to. My goal was to start a club that could reach out to theothers in the area and bring the whole community together. Not an easy task.

My journey started, although I didn't know it at the time, in 1992 with seeing an oncologist for chemo andradiation. My dream began to form in June of 2009, when my brother and I visited my surgeon and, thatsame day, we decided the laryngectomy surgery would be done on September 8th. The surgeon providedme with the name WebWhispers, a site on the Internet, and told me that's where I needed to do my research.Little did she know I didn't own a computer and had never been on the Internet before but my brother who issomewhat of a geek had me up and running within a week. I learned fast and the WW taught me well so thesurgery was performed with just a few minor problems. After the surgery, I had real problems finding otherLarys because I didn't drive and the only meetings I heard about were all in the suburbs.

In June of the next year ( 9 months after surgery ) I wanted to talk with someone at the Speech departmentbecause I had insurance and I was buying everything out of pocket. I also didn't feel I was learningeverything I wanted to learn. When I met with the manager there, she was very condescending, first saying Iknew enough to get along and then commented that working with insurance companies was labor intensive.

In the 5 minutes it took me to walk out of that hospital, I knew I needed to help those other patients whoneeded help so I walked over to my surgeon's office and was lucky enough to catch her there. Afterexplaining what had just happened and how I felt about it, she said she would try to support me and shecalled in her social worker in. We went over what she could try to do but, of course, it would be up to thehospital. After some months of talks about starting a group, the decision was not favorable. However, duringthat time I made contact with many club leaders like Herb S. and Tom O. looking for the best info I could find.And yes Pat S. told me it's going to be hard, Elizabeth F. said you're going to get a bunch of no's but youneed to keep asking and Jim L. said you have to ask for what you want and keep asking. So when thehospital turned me down, I decided to try the VA hospital, where they were interested but only for Veterans,so I had to back off because I needed a place for everyone, not a select few.

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I was pretty down and about ready to give up but then I remembered Mary Ellen, the head clinic nurse at thelarge Cancer Treatment Center where I spent time during the 15 years before my surgery. I knew I had togive it one more chance. She was one of the people everybody went to when something needed to be done.I emailed her with the concept of the meeting at 3:30 that afternoon and by 9 AM the next morning she said,"It's a done deal." Stunned, after all these months to get a positive response overnight! The next week, I metwith Emily Poole, SLP, and her boss and they loved the idea, that was in October but it still took 5 months toiron out the details. We opened March 17, 2011.

Our first meeting had a half dozen professionals and only one patient (who never returned). Verydisappointing, but our second meeting was great because Jim Lauder was there. We were able to telleveryone he was coming and several people came to greet him. This included Francis Stack, a well knownlaryngectomee of over 50 years, for a total attendance of 10, which was good. After a year of meetings withwith low or no attendance, we had one meeting with a few new members who all liked each other and theybecame our core. We built up from there and had a regular crowd of 10-12 at all meetings so my work therewas a great learning experience. When the hospital decided they wanted to change our format, I decided toleave in Feb 2014. We had a good run.

Around April of 2014, after a couple months off, I receive an email from a friend ( SLP) who sent me a list ofabout 6-7 teachers at a small University that had speech classes and she said that the area was in the needof a meeting. I remembered they had a meeting there about 3 year prior and while I was busy building myLary's Speakeasy in Facebook, I really was missing those live meetings. So I sent a bulk email to all theteachers, again explaining our meeting concept ( group therapy) and in a few days I received an email fromProfessor/SLP Miriam Alfano who was interested. Over the next few weeks we exchanged many emailsabout the details and then we finally met in person where I received the final yes and we opened June 17,2014 with 7 patients and 2 caregivers along with the 2 students who spend their grad semester with us (about 4-5 meetings for them). What's great about meetings with the students involved, is if we don't have anew visitor, then we can give them our full attention. Of course, the newbie always receives the full focus ofthat meeting because we want to give them as much as we can in that very first meeting.

What is great about doing the meeting at the school is that it's neutral so we have patients coming from allthe cities hospitals and the school gives us more freedom to do public service announcements andawareness which were my main concerns from the start as no one in the area was working together.

So I had a dream from back in 2010 and that was to get the different groups talking again and in January of2015, I received an email from Jim Lauder that he wanted to visit our meeting on May 26 Th. so I decided itwas time to go for the “Gold”. I asked the Miriam if we could do a 1/2 day event and bring in a few speakers(vendors) and it would be open for everyone and she said Yes!! 5 years of hard work finally paid off for meand the rest of Chicago with the first All Chicago Laryngectomy Symposium. We still have more work to dohere but I feel we're now on track and besides, there is no end to my dream.

I hope you follow your dream.

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WebWhispers is an Internet based support group. Please check our home page for information aboutthe WebWhispers group, our email lists, membership, or officers.For newsletter questions, comments or contributions, please write to [email protected] Managing Editor - Pat Wertz Sanders Editor - Donna McGary

Disclaimer: The information offered via WebWhispers is not intended as a substitute for professional medicalhelp or advice but is to be used only as an aid in understanding current medical knowledge. Aphysician should always be consulted for any health problem or medical condition. The statements,comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authorsonly and are not to be construed as those of the WebWhispers management, its general membership,or this newsletter's editorial staff.

As a charitable organization, as described in IRS § 501(c)(3), WebWhispers, Incis eligible to receive tax-deductible contributions in accordance with IRS § 170.

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