|Name Of Column
||Thank you, Thank you very much!
||News & Events
||Jennifer Craig, MS, CCC-SLP
||Don’t Throw Your Electrolarynx Away!!
||Yuk It Up
||Giggles with Robots and “Ladies Och”
|Travel With Larys
||From Russia With Love
|The Speechless Poet
||Len A Hynds
||Prose & Poetry
|Bits, Bytes & No Butts!
||We Have Come A Long Way
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Thank you, Thank you very much!
Many of us have been shipboard during rough seas or have flown through extreme turbulence. These experiences have similarity. In both cases, things always feel better when the rough going is over with. Until then, we rely on the dedication, skills, and effort of people who love their job, know how to do it well, and execute to the best of their ability to take care of business. For volunteers, all that is in place, plus a desire to give as one has received.
WebWhispers is sustained on the backs of her generous donors and devoted volunteers. A number of us were present at the WW dinner in June, at which 28 vendors, officers and other volunteers were recognized for what they do for us. For the benefit of our other 3500 or so members who were missed at our dinner, here is the list of those who were recognized, in addition to our vendors, along with a very brief description of what they do. As you can see, many wear multiple hats. Scholarships for attendance at the AM/VI were also presented. InHealth Technologies presented scholarships to Dariella Chavez, Lupita Garza, Jay Wade, David Kinkead, and Tom Whitworth (surprise!).
Dar, Lupita, and Jay were also awardees of our Buck Martin Scholarship Fund.
WW Plaque Recipients:
Board of Directors
Tom Whitworth – President, previous VP-Finance & Admin, Mail List Moderator
Jeff Vanden Hogen – VP Internet Activities (aka Superman), Board Member
Jack Henslee – Editor WotW – “Speaking Out” Coordinator, VP- Finance
Donna McGary – Board Member, Columnist “Between Friends”, Managing Editor WotW
Mike Rosenkranz – VP Website Information
Scott Sysum – VP Member Services
Michael Csapo – Board Member
Terry Duga – Board Member
David Kinkead – Internet Activities, Mail List Moderator
Jody Ann Black – Mail List Moderator, Administrative Asst.
Marilou Percival - Donor Letters
Harry Jensby – Brochure Distribution
Carol & Roger Johnson - Loan Closet Custodians
Herb Simon - American Cancer Society Representative
Newsletter, Mail List, & More
Noirin Sheahan – WotW Columnist, “Dear Lary”
Len Hynds – WotW Columnist, “The Speechless Poet”
Frank Klett – WotW Columnist, “Bits, Bytes and No Butts!”
Kim Almand – WotW Coordinator, “Voice Points”
Tom Olsavicky – Mail List Chief Moderator
Ron Matoon – Library Chair, Webmaster Extraordinaire
Carl Strand – Mail List Moderator
William Cross – Forum Moderator, Facebook Admin
John Isler III – Facebook Admin
I am excited about this issue of Whispers on the Web and grateful for the effort that has gone into it. A
backup EL user, with my TrueTone and the Jim Lauder named “WW Presidential Servox” close at hand, I knew the EL article would resonate with me. Whatever your preferred method of communication, a backup is a must. This issue is loaded with Lary humor, too!
Enjoy, learn and laugh,
“Wait, Wait! Don’t Throw Your Electrolarynx Away!!”
Although many laryngectomees use a tracheo-esophageal prosthesis (TEP), and some use esophageal speech as their primary form of communication, that doesn’t mean that their alaryngeal device (ALD) or electrolarynx is useless. In fact, it should really be treasured as the dependable, cost effective form of communication that it is. Learning how to use and maintain a backup ALD in case of emergencies is always a good idea, even if you do not plan on using it as your primary method of voice. Even if it’s not an emergency, an electrolarynx is an ideal backup in many situations, for example: a blown baseplate seal, excess mucous, a plugged or blocked TEP. Perhaps you have been in the hospital and do not have the ability to clean or change your prosthesis, or you just don’t have the respiratory drive, energy, or inclination to make your primary voice work the way you usually do.
There is a sharp learning curve to becoming an excellent communicator with an ALD. Frequent practice with a communication partner using these basic tips can prove helpful in improving how much others understand.
Placement: Whether you’re using an intraoral adapter (tube adapter) or neck placement, everyone has a different “sweet spot” that transmits sound the best. This can be particularly tricky in those that have radiation fibrosis in their necks. Experiment with placing the device on your neck in different places, like under your chin, above your stoma, on one side of your neck, or even on your cheek. If you use an intraoral adapter, experiment with placing the straw on top of your tongue, to the side between your tongue and teeth, and further forward or backwards into your mouth. Be sure to hold the device in your non-dominant hand so that your dominant hand can remain free during communication.
Activation: Turning the device on and off at appropriate times can significantly impact how well others understand you. The device should be turned on at the same time as you start speaking and turned off at the end of a short phrase or at a natural pause to reduce the unnecessary mechanical buzz. Avoid turning the device on for each individual word or keeping it on for an entire conversation without a break. Short phrases are the easiest for conversational partners to understand.
Rate of speech: Slowing down how quickly you speak allows the listener to understand the message more easily. While you want your rate to remain natural, speaking too quickly can have a negative impact on your intelligibility.
Over-exaggerate your mouth movements: Move your mouth, teeth, tongue and lips slightly more than you would usually when speaking. This will allow your speech to be more accurate. The more precise you can make your sounds, the more people will understand you. Start with sounds like “p” or “b,” focusing on building up air pressure in your mouth to make the sound “pop.” Continue practicing with the “ch, t, f, and k” sounds, by themselves at first, and then include them in short words (i.e. “cat”) followed by short phrases (i.e. “Pet the pretty cat.”).
Practice: Using an electrolarynx takes lots and lots of practice!! Find a communication partner that is willing to practice with you. Establish a topic of conversation first, such as sports or family. Then, practice using the strategies above for the next 5 minutes using only your electrolarynx. Your conversational partner should ask confirmatory questions (i.e. “I heard you say… is that correct?” or “I understand you are talking about…. Could you repeat that last word?”) to help the conversation progress. As you get better at using the electrolarynx, increase the amount of time that you rely only on your electrolarynx to communicate.
If you have misplaced your ALD or just need a new one, you should obtain a prescription from your physician. Most insurance companies will cover a new device every 5 years, but you should always check with your individual insurance company. Some states also have assistance programs that can help you obtain a new device. There are several different types of ALDs, many of which are described in further detail on the WebWhisperers website: http://webwhispers.org/library/Electrolarynx.asp.
Possibly most importantly, if you have decided that your electrolarynx is still not for you, please consider donating it to the WebWhispers Loan Closet at email@example.com where we offer refurbished ELs to members free for the asking on the honor system. Requests can be made by patients, their caregivers or SLPs and are usually sent out within 24 hours. Alternatively you may want to offer it to your local laryngectomee support group, SLP, head and neck surgeon or the International Association of Laryngectomees (IAL) - www.theial.com. All options serve the laryngectomee community and may give someone else the chance to speak again - a true gift.
Jennifer Craig, MS, CCC-SLP
Vanderbilt Voice Center, Nashville, Tennessee
Yuk It Up
It has been my experience that you simply cannot successfully navigate through life without a well-developed funny bone. Folks who can “take a joke” can also “take it on the chin” without going “down for the count” – how’s that for a mouthful of metaphors! Seriously, though, there is a lot of truth packed into that punch. [groan- I promise to stop now - maybe]
I bet you all have heard about Norman Cousins and his unorthodox approach to dealing with chronic illness and pain. “Told that he had little chance of surviving, Cousins developed his own recovery program. His positive attitude was not new to him, however. He had always been an optimist, known for his kindness to others, and his robust love of life itself. ‘I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep,’ he reported. ‘When the pain-killing effect of the laughter wore off, [Ellen and I] would switch on the motion picture projector again and not infrequently, it would lead to another pain-free interval.’ [ Google him for this citation and more information on his life and writings.]
This month’s Speaking Out question asks about humorous experiences related to being a lary and we had some wonderful responses. Some are sort of sad/scary funny and others are perfect examples of a well-developed humerus bone/nerve or maybe an oft-banged one. And if you don’t get enough funny stuff this month just go to our website and under Library, click on How We Live and there is a section called Laryngectomee Humor with 144 separate entries submitted by our members over the years and guaranteed to make you laugh.
Laughter is the great leveler. Humor is no respecter of persons. It is not mean-spirited or bitter. It is a joyous recognition that even with all our faults and foibles we are in this together and human beings are a pretty silly bunch, once you come right down to it.
True humor, the kind that rejuvenates our spirits and expands our perspectives, may be a uniquely human quality. The jury is still out on that but, for now, it is surely one of our best qualities and one we should vigorously cultivate. So don’t just “Suck it Up” – “Yuk it Up”!
“Have you ever had an unusual or funny experience directly related to being a laryngectomee?”
Len Hynds – Newtown, UK
Many funny stories come to mind whilst in the hands of the medical experts.
Whilst awaiting open heart surgery, the Nursing sister was explaining what was to happen, and that two teams would be working on me at the same time. One replacing the Aortic Heart valve with a metallic one, and one on the leg, extracting a suitable long vein to use as a bypass, who would then pass it to the heart surgeon in the second part of the operation. I asked her what would happen if the leg team couldn’t find a suitable vein, and she said,” Not to worry, by that time your chest will be opened up with the ribs peeled back, and they will take the memory vein.”
After the operation and recovery, and back in my ward, she came to me, and I said,
“They had the vein from the leg then, I remember this ward and you,” She replied,
“You fool Len, it’s my Irish accent. I said Mammary Vein.”
Another Quickie. On a Pacemaker replacement, lying awake to control my own breathing, and chatting to the two doctors and team, when it was over and sitting on the edge of the operating table waiting for my bed to be wheeled back in, I said to them all busily cleaning up, “Can I have your attention for a moment.” All looking up in surprise, I continued. “You have all done a good job. I’m very pleased with it. Have any of you ever thought about doing this for a living.” After a stunned silence they all burst out laughing.
Jim Fohey – Oscoda, MI
Class of 94 & 2016
About a year after becoming a lary I went to Ireland to see where my family came from. While traveling I needed gas and at that time they pumped your gas. When I pulled up no one came out so in I went and there was a young woman behind the counter looking at something. I asked her, using my EL, if I could get gas. Such a scream she let out, turned and looked at me so I told her I come in peace, she said in her wonderful Irish brogue that I had scared to hell out of her. We shared a laugh; they pumped my gas and off I was with a smile on my face.
Rita in NJ
I have two really interesting and funny stories. Years ago my husband gave me a new laptop computer for Christmas. I was having problems with it...I don't remember exactly what the problem was but I called the help line. At the time, I believe the calls for assistance were taken overseas. Between the accent and my speaking with an EL, you can imagine the problem I was having. The man on the other end of the line just refused to answer my question. He had his list of questions to ask, none of which pertained to the problem I was having. I continue to tell him that he wasn't answering my question. After a very frustrating hour, my husband came home and into the room. I handed him the phone, to see if he could get an answer. The first thing the man on the line said to my husband was, "I've been speaking to a computer." I don't think we ever got an answer to the problem I was having with the laptop, they replaced it.
A few years ago I bought some small bells to put on Christmas packages as decorations. I put them down on the counter for the cashier. She was looking down at them as I said something to her. She said that she didn't realize that they spoke, too!
You definitely have to have a good sense of humor. It is easier to laugh than get upset!
Malcolm Graham - Lancashire, England
I had my surgery in November 2014. In November 2015 I had to have a shoulder replacement, partly due to wear and tear and partly to having had lymph nodes taken from my neck.
I attended pre-op with details of medication I was taking, I saw the anaesthetist who was quite intrigued with the laryngectomy not having had contact with a laryngectomee before. I had been told by a member of our group to make sure I asked the doctor and nurses where did they think I breathed from, "the nose and mouth of course", wrong I told them, through the neck to which they replied, "how often".
It is amazing how little medical staff, not involved with ENT know about neck breathers, but, we are trying to educate them, especially in our area, and hope that future laryngectomees benefit from our experiences.
Ian Coates - Bury, UK
I belong to a church in Bury UK. We have a lot of lovely old ladies at the church who know I have been through a rough time with my laryngectomy over the last three years. Some of them still keep coming to me and miming words to me. I do not have the heart to say there is nothing wrong with my hearing but my wife does sometimes and they get very embarrassed.
Martin Mc Dermott – Pearl River, NY
Hi all. This isn't what you call a funny, funny experience but I laugh at this all the time. I have a small fistula and can't use my TEP yet, so a lot of people when they see I can't talk , think I can't hear as well . I usually reassure them I can hear perfectly fine!!! Also I find funny is that I live in Pearl River, NY and I'm in NYC all the time, but since my surgery I have not met or seen another lary . Are we that few?
David Rankine – Vernon, CT
I’ve had a few funny moments and some uplifting observations:
At first I used an electro larynx with pitch control, for which I was fortunate enough to have a perfect sweet spot and could enunciate clearly and easily a day or two after surgery with the mouth accessory, and then on my neck as soon as my neck was healed enough for contact.
Since my surgery, I’ve never been shy about being out and about in public, and I’d always catch children staring in wonderment. With a smile and a nod from a parent, I’d always engage them and explain what was going on. Sometimes I’d buzz them on the arm for a giggle, or let them try it out themselves. They especially liked the old underarm pumping fart noise. Parents are always very grateful to have learned that we’re just normal folks, and for teaching the kids not to be spooked and making them laugh.
Sometimes I’d surprise people by singing. Or hiding the device behind my back in an elevator and giving it a honk, then looking at the guy next to me.
There was an episode when engaging in some poolside horseplay with my nephew, I lost my balance and fell in. Luckily, there were enough quick-thinking young guys close by and they had me up and out in no time. A little sputtering and I was fine. My brother-in-law, before it sunk in, said to my panicking wife, “What’s the big deal? Dave knows how to swim”.
Since I got my TEP three years ago, I still talk to people I meet in shops and other venues and find that being upbeat and comfortable keeps life cheerful and others always seem to react really positively. Many share stories of friends or relatives who have had laryngeal or throat procedures of various degrees. All you need to do is make them feel comfortable and they light up. I always get a laugh when I say “You’re gonna like the way you look, I guarantee it.”
Occasionally I get a call from the doc or the nurses at UCONN when there’s a new laryngectomy patient, to visit and try to help them see that the future isn’t necessarily as grim as they might fear and anticipate. A few shenanigans and some genuine reassurance and questions & answers about aftercare, etc. sure works wonders, especially with the worried family members. My wife (truly the wind beneath my wings – corny as the saying is) being with me is also a comforting presence and helps to validate the positive. Nothing beats the feeling that you’ve helped to ease some fear and anxiety.
For me, the only significant losses are inability to play the bagpipes and swimming. Both activities I loved. There are however alternatives and solutions to both.
I keep thinking I’d like a job as a spokesman for one of the medical supply companies that specialize in laryngectomy products. That would be fun.
Best of luck to all, and endless gratitude for WebWhispers!
Margo Ziegler - Minnetonka, MN
I am not a "lary", but do have a permanent trach and about 6 months after getting my trach, I had biked to the bicycle shop and wore my bike helmet in there to pick something up. I do bend my chin down over my trach in order to talk, as I can still talk, and I seem to make a "whistle" noise every time I speak. Well, the sales person and myself were exchanging conversation and finally she spoke up and said "This is the weirdest thing, but every time you speak, your bike helmet WHISTLES!!!"
I really thought it was funny to hear this from her and said that I had a trach and I bend my chin down to speak and it sort of makes a whistle sound and that it was not my bike helmet making that whistle sound! Her smile left her face and she got terribly serious and apologized about her comment. This was a good time to explain to her what a trach was and how I breathe and talk now and that I did find her comment quite funny! But, she felt very bad and I assured her it was fine.
That was about 19 yrs. ago now and I think about it now and then and still get a chuckle from her comment. She had looked at the top of my bike helmet even to see what was up there that would whistle when I talk. I'm chuckling right now thinking about it.
Kirk Swan – Sherwood Park, AB
My humorous story is while lying in a hospital bed a couple days after surgery I woke up and unable to breath so I pressed the Nurses call button and she came over the Intercom and said “Yes can I help you". Here my poor Larynx was probably in a petry dish somewhere getting dissected. My wife and I still chuckle at that one.
Linda Shingler – Myrtle Creek, OR
Laryngectomy in 1996
I was living in Hayward, CA, using an EL on a phone call. He asked, “Are you a machine?” I now live near Roseburg, OR. and I went for an out-patient procedure requiring anaesthesia. When I explained to the nurse that I am a neck breather, she said, “You mean this oxygen cannula won’t work in your nose, right?”
David Hughes – Sun Lakes, AZ
Not long after my surgery, I experienced difficulty breathing and my wife called 911 to which the local Fire Station responded and took me to a local hospital emergency facility. Convincing the EMS tech that the oxygen mask he was holding over my nose was probably not going to help he quickly moved it into place on my stoma. However, despite that little event there was more to come. The problem seemed to lessen initially but on the 2nd day in the hospital it returned and it became obvious that there was something in my stoma which was moving up and down with my breathing (mucus plug) although this was not something the med staff were familiar with. After several unsuccessful requests by my wife to get a pair of tweezers, she ended up grabbing the plug with her fingers before I finally choked. The gathered group of med staff seemed quite amazed by this but the final "jaw dropper" was a resident’s comment came as he tried to comfort and assure me. "Don't be concerned about the opening in your throat, it will close naturally over time"!!!!
Brenda Jackson - Riverside, Ca.
My Speech Pathologist told me to practice taking deep breaths through my nose. "That's when I decided to learn "ES" on my own.
Noirin Sheahan – Dublin, Ireland
Recently a group of strangers were teasing me about my bad parking - all quite good humoured. When I replied using my electrolarynx most of them looked embarrassed and turned away. I'd say they were embarrassed to find they had been teasing a 'handicapped' person. But one man was really open and asked me what the electrolarynx was and why I was using it. When I told him about cancer and losing my voice box, he became really animated and said "Look at how well you are now. Driving out here on your own and putting up with us lot teasing you - you are an inspiration!" I was delighted and as I was leaving I could hear him telling all his friends my story and what an inspiration I was. I felt really uplifted by his response. It wouldn't have happened without the electrolarynx to break the ice.
Barbara Nitschneider – Cary, IL
Class of 1974
It was the Christmas season and my husband and I had been invited to a neighbourhood open house. The people there had just moved here from Arizona. They had met Bob on one of his daily walks. Bob loves to talk and everyone knows “Bob and his dog.” I had not met them yet. We drove to their house. As we walked in people and children were there to greet us. I started talking with my EL and a little girl was clapping her hands and said, “Mommy! Mommy! A robot has come to our party!” She was so happy. What a great way to break the ice.
Next Month's Question:
"When did you meet your first laryngectomee?"
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
Giggles with Robots and “Ladies Och”
This month’s Speaking Out question made me think back over a few sweet things that happened
because of laryngectomy. Here’s a sample:
While I was recovering from surgery I stayed with my friends Margaret and Pat. They have two grandchildren – about 4 and 5 years old at the time. I could hardly interact with them at all at first, but luckily they were happy enough for me to ‘play dead’ so that they could construct all kinds of games involving someone who was fast asleep and didn’t notice there were two boys up to no good messing about beside them. Then as I got through radio and chemo I started getting a bit more outgoing and tried to join in some of the games. I was still really unclear using the electrolarynx, and once when the elder boy, Conor, and I were left alone in the room together, he got a bit upset because he couldn’t understand me. I racked my brains to think of a way we could get over this. The next day the kids visited, I asked Margaret to explain to them that they were going to help me learn to speak properly. I started off by holding up a finger and since the consonants were the hardest for me, I’d muffle something like “INNE”. They burst out laughing and told me how to say it properly. “Finger” they both insisted at the top of their voices. ”Fffinne” I repeated , and they laughed and laughed at this weird adult who had to be taught to speak properly. We went on from there, me holding up my foot and saying “OOD” and them rolling around laughing while they tried to get me to say ‘Foot”. It was good fun and the barrier was broken.
A while later, the younger boy, Aaron, was given a toy telescope which looked a lot like my electrolarynx. Instead of trying to look through it, he used to walk around pressing it into his neck and making weird noises! To him, speaking with his ‘electrolarynx-telescope’ was something to be proud of!
When I first started using the electrolarynx with Pat and Margaret, I found myself getting frustrated that they couldn’t understand me. Then I said to myself “Don’t take it so seriously, Noirin. Make it a bit of fun”. We started playing games like “I spy”. I would make my best attempt at “Window” which probably came out as something like “INNO” and whoever was the first to guess “Window” would get a star. We also played ‘Hangman’ with another bit being added to the scaffold for every wrong guess at what I was saying. Instead of getting frustrated I could enjoy taunting them with “Tut, Tut” and sad shakes of my head as I drew the next line in the hangman’s noose. Then there were the lists of words that Clare, my SLT, gave me to practice with: Back, Pack, Bag, Bog, Throw, Grow …” I’m sure you’ve all been through them. We’d make it a competition between Margaret and Pat to guess at which word I was saying. It was all good fun and electrolarynx practice became something to look forward to rather than to dread.
Christmas dinner at my cousin’s house was the first time to meet many of my cousins post-laryngectomy. It all felt a bit weird at first. They just let me slip in without any fuss – no big ‘Hello Noirin”. I’d say they were all a bit embarrassed, not knowing what would be the right way to treat me. At first I just used a whiteboard, but when everyone was settled I took out my electrolarynx to try to talk with a cousin beside me. Other people heard the weird noise and the table went quiet, so I used the opportunity to turn to them and say a few fairly obvious things that I knew they would either understand or be able to guess. “Hello Cousins” I beamed at them waving my free hand. “Hello Noirin” they all called back in unison, delighted to be able to acknowledge me. “Happy Christmas everyone!” I then said. “Happy Christmas Noirin” they chorused, like a group of children saying ‘Good morning teacher” before class. I could see they were all enjoying this unexpected return to primary school so I milked it as long as I could with questions like “Are you all enjoying yourselves?”, “Did you get any dinner yet?”, “Did Santa bring any presents?” and so on. So again, the ice was broken and it was possible to turn the speech difficulty into a bit of fun.
About a year later on my way to stay with friends, I discovered I had forgotten to bring spare socks. There was a short delay between the train arriving and the bus leaving, and there was a shopping centre nearby so I raced (as quick as rucksack and suitcase will allow) around the centre, looking for a clothes shop. I found one, but could only find men’s socks. Unfortunately “Socks” is one of the hardest words for me to say. “S” is hard and also “k”. So what comes out is something like “Och” – in fact it’s just the “O” part that can be heard so I’ll spell it “Och”. But with only a few minutes to till the bus departure, I had no choice but try to get help. I took a pair of men’s socks with me in the hope that this would convey what I needed. The assistant was near a queue of people waiting to check-out. I held up the socks in my left hand, did my best to point to them with my right while saying “Ladies Och” with what I thought was obviously a look of “Where are they?” on my face. She started at me blankly. I shook the socks in front of her eyes and repeated “Ladies Och”. “You want the Babies section?” she ventured. I shook my head, and pointed at myself “Ladies”. Another blank stare. By this stage I was giggling to myself at the situation especially as most people in the queue were also looking at us in bemusement. I addressed them with my shake of socks and pointing to myself with my “Ladies Och”. Between us all it eventually worked out and I got my “Ladies Och” and my bus too and a lot of giggles in my tummy to boot!
More recently I was at chatting to a friend at a community centre, when I noticed two small children staring at me in fascination. I got down on all fours and crawled towards them saying “I am a robot from outer space …. I’m coming to get you””. I don’t know if they could understand a word but they got the spirit of it and retreated shrieking with laughter. I kept crawling towards them with “Here comes the bad robot” and they kept trying to get away from me in mock terror. Again it was all great fun and everyone at the centre was laughing. It wouldn’t have happened were it not for my trusty electrolarynx.
So yes, the electrolarynx has added its own moments of joy to life.
From Russia With Love
Hermitage – St. Petersburg, Russia
One of my favorite pleasures is visiting a great museum with lots of history. Plus, if the city/country it’s in has or had an ancient culture and architecture that has been preserved, then that makes everything even better. Now I don’t claim to be any kind of art expert and I don’t know beans about brush strokes, the blend of different colors, styles, or any of that stuff. I just know when I like something plus I enjoy looking at the “masters” and trying to figure out why everyone thinks they are better than the local artist with a $200 canvas for sale in Carmel by the Sea.
For many years the Hermitage in St. Petersburg, Russia has been on my bucket list. It is the largest museum in the world with over 3 million art objects…. Not all displayed at once. So a couple years. ago we booked a 10 day Baltic/Scandinavian cruise from Amsterdam to, Denmark, Germany, Estonia, Russia (with a 2 day stop at St. Petersburg), Finland and Sweden. I was really excited but then Russia invaded Ukraine and I canceled because of the uncertainty. But then I got a better offer for this June for a 12 day cruise with a 2 day layover in Copenhagen Denmark, and a 3 day layover in St. Petersburg.
First stop was in Amsterdam, NL where we arrived 3 days early to see the sights and meet up with my longtime friend, past IAL board member, and past Congress of European Laryngectomees President, Marianne Kooijman. Day one was an early morning arrival after a 10 hour. flight from San Francisco, and of course no hotel check-in until 3:00. We had booked a hotel in the Museum Quarter and they stored our luggage for us while we went sightseeing.
First stop was the Van Gogh museum which houses the largest collection of Van Gogh’s in the world plus many paintings by his contemporaries. The entire exhibit was wonderful but very crowded. After a long day we made it back to the hotel for a much needed rest after being up for over 30 hrs.
Day 2 we took a trolley to the city center for more sightseeing. After wondering around and enjoying the sights we stopped at a lovely outdoor café located on one of the many canals for a nice lunch and few cold beers. Then we crossed the street to the Tulip Museum which was very interesting but not really worth the price, but the next stop more than made up for it. That was the Anne Frank House! This was a very moving experience where you actually see where this Jewish family and friends hid from the Nazis for 2 yrs. before being found and sent concentration camps.
Day 3 we met with Marianne and she took us to the Rijks Museum which is the National Museum of the Netherlands, and it is huge. For me the main attraction was the Rembrandt paintings because I had never personally seen one before. Some of them, like The Night Watch, are really huge and must have required a ladder or scaffold to stand on to reach the top. Amazing detail! After that it was lunch and another Dutch beer, then a very pleasant canal cruise. Amsterdam has over 60 miles of canals.
On day 4 we sailed off to Copenhagen where we spent 2 days. The first day we just took a shuttle into town and walked around, stopping to see the Royal Palace then pausing for a very nice lunch and of course a Danish beer. They claim their Carlsbad is the best beer in the world! On the second day we took a nice all day tour to 3 different castles. The first was the Summer Palace and it was nothing but a photo stop from outside the grounds. The second was the Kronborg castle which the play Hamlet was staged in. Again this was just a photo op that lasted over an hour while we waited for lunch. Next stop was Frederiksborg castle which is also the national museum. This castle was magnificent but it was last and we were given very little time to enjoy it. If you go, and you have the opportunity, try to spend a t least 3-4 hrs. here and skip the other 2.
Our next stop was Germany but we stayed on board because the only excursion that looked good was a trip to Berlin that would have been nice except it involved a 6 hour round trip train ride with only 2-3 hours in Berlin. At about $200 per person it was easy to pass up, and I was also starting to feel a little ill.
Estonia was next but again not much to do. However I wanted to see the old walled inner city so we took the shuttle and started the hike into old town. Unfortunately I didn’t get very far and decided to return to the ship because of breathing problems and weak legs. Turned out I had acute bronchitis which the ship did a good job of treating for about $800.
On day 8 we finally reached Russia and for the first day I had booked a 4 hour tour of the Hermitage and then the ballet that evening. I was still suffering the effects of the bronchitis and had breathing treatments scheduled for that morning and afternoon, but I skipped the morning treatment because I was not about to miss the Hermitage. That was a decision I certainly do not regret because even though we only saw a small portion of it, and it was very crowded, it was magnificent. Just the building alone minus all the art treasures would have been worth the trip. But, if you don’t mind the cold I would recommend flying in during the off season to beat the crowds and have a lot more time to see it all. I did take my afternoon breathing treatment however but the medication caused some bad shaking and dizziness so we had to pass on the ballet.
I had to cancel my part of the next days 9 hr. tour and lunch to Peter the Great’s palace, as well as Catherine the Greats palace, but Jeanette went and really enjoyed it. I spent the day reading and received 2 more breathing treatments with a change in the medications which worked pretty well. I was able to hit the streets again the next day for a visit to 3 magnificent churches, St. Nicholas Naval Cathedral, Church of the Savior on the Spilled Blood, and St. Isaac’s which has the 4th largest dome in the world. Jeanette has now seen all 4 while I have seen 3 of them.
For our stop in Finland we had planned to just take a nice bus tour with little walking involved but we didn’t book anything because of rain forecast, and while it was raining the next morning it cleared up around noon. But we just spent the day reading and of course eating. Some of my best cruise moments have been spent doing that and I knocked down 4 books on this cruise.
Final stop was Sweden for an overnight stay but because of high winds they couldn’t take the ship into the channel for docking, so we didn’t arrive until the afternoon and that was too late for any sightseeing. All we had planned was a nice bus tour and maybe sample some local food but it was not to be...maybe next time.
This was our ultimate cruise mainly because of St. Petersburg, and while a bit expensive it was well worth it…. You just have to do those bucket list items folks! Next stop? Well we don’t know yet but it will be an adventure, memorable, and maybe we will see you.
To view a slide show or just browse through the pictures of my Europe cruise please go to https://larytravel2016.shutterfly.com/pictures/8. At the top of the page (in small letters) you will see “Slide Show”. Just click and enjoy Amsterdam, Denmark and 4 castles ,then Russia featured in this order; The Hermitage, Catherine's Palace, Perterhof Palace, and the St. Nicolas, St. Isaac, and the Spilled Blood churches of St. Petersburg.
We laryngectomees are the world’s worst people, when asked by an old friend or acquaintance if we are alright, by giving a big smile and saying “Yes, I’m fine”. On many occasions this can be far from the truth.
“ THE PRETENCE “
The mask we wear that smiles and lies
So hides the tears that’s in our eyes.
We practice hard, with inner guile
With torn and bleeding heart we smile.
Why should we show them other-wise?
Why should we let them hear our sighs?
Let them not think, or dare to ask,
that this our smile is just a mask.
The voice is gone, but we are here,
and gone is that once dreadful fear.
The mask will vanish, just like a pain,
And then once more, we’ll smile again.
I think I am a pretty standard laryngectomee, unable to show emotion or feeling in my robotic words, but Mother Nature gave me a brand new method of expressing my feelings; that of poetry and telling stories. No longer can I cry in sobs, but my eyes water profusely in silence, as my intact nervous system still does its job in part. Also I cannot laugh out loud at a joke, or some pleasurable thing, but just maintain a pleasantly inane grin, whilst a very slight pain indicates that the nervous system would love to give forth a roar of laughter.
You know I’m not one to bemoan my fate,
but getting older, more frequent of late,
I stop and I think, of just how I was,
Healthy and vital, and it’s all because,
of the life I’ve led, and this ageing curse.
Many survivals, it could have been worse.
My once former self, has now surely drowned,
Submerged under water, and yet to be found.
Yet I still dream, of those days as a child,
fervently wishing those waters so wild,
would uncover my body and wash it ashore,
so I could reclaim it, and wear it once more.
But we Laryngectomees have an impish sense of humour, and like nothing better than to make others laugh out loud, maybe it’s because that is something we cannot do ourselves. This can be done in many ways. Many of us give talks to medical groups, where to involve the audience, I get them to gently touch with their fingertips the Adam’s apple of their neighbour, and get that person to say hello, when vibrations from the vocal cords can be felt. You cannot feel your own.
This can start all sorts of conversations, and if you have a colleague who is giving a demonstration on speaking with purely air from the stomach, it causes roars of laughter when you remind the audience where the air is coming from. Those noxious gasses who have their own means of escape via an adequate exhaust system. So laughter is a very important factor in people getting over cancer, as in every disease. A golden rule is never (unless previously arranged with them), to make fun of another person, but to rather make yourself look foolish. This month’s theme on Speaking Out is about true funny incidents that happen to us laryngectomees. I’m sure that you all have something to contribute.
Farmer’s Almanac On-line
We have come a long way in the past 20 years and mostly due to the huge advances made in technology. I came across this old favorite that I thought had long passed on, but here it is large as life and still full of great info. To follow this journey click here to visit the Farmer's Almanac site.
Grill Gadgets for Geeks
It somewhat amazes me how technology seeks to takeover our lives in ways that I had never considered. The uses for microchips in our lives grows more each day. I often peruse on-line tech products and many times have no idea what they are trying to sell but sure enough the next day or two I find myself looking back for one of those products that now I have an urgent need for - I think I just catch on slower! We are seeing cars that park themselves, slam on the brakes to avoid collisions, and have built in sensors to determine if any occupants have been left in an overheated vehicle; if the sensor decides there is a problem it will send a signal to Mr. Window and Ms. Window to open 2” for a cool down. Follow the link below to learn more about how your backyard grilling will be changing, thanks to Bob Rankin: http://askbobrankin.com/sizzle_grill_gadgets_for_geeks.html?awt_l=CasIU&awt_m=K4z2VNDmleP6SL
We are approaching the first anniversary of Windows 10 and with it the end of the free to all updates (maybe) and the release of major updates. Many folks still have held on to their Windows 7 (and some even Windows XP) for lack of the motivation to learn a new operating system. In many ways I can relate to that and at the same time I find myself facing reality and wanting to keep my on-line life as safe as possible. By not upgrading our operating systems we are leaving the door open to the dark world of hackers and identity thieves. Microsoft and many other independent developers have tried since day one to try and familiarize us with the nuances of Windows 10 but it seems that in spite of all their efforts there remain those of us who are still afraid of the dark. Once again Bob Rankin has come to the rescue! He has put together a few of the best teaching videos for Windows 10 and left them on the table for anyone who still needs some reassurance and guidance. Follow the link below and take a few minutes to learn a bit more than you knew about Windows 10 and the future as seen by Microsoft:
Bob also has his best advice for those who want to try Windows 10 while keeping their existing operating system:
[HOWTO] Install Windows 10 and Keep the Windows You Have Now
Another “New” iPhone is headed our way
Soon the iPhone 7 will be available in the U.S. (already being sold in dark corners of China) and as always there is an air of anticipation regarding the hottest new features. As I read about the guessed at new features for the iPhone 7 it occurred to me how we buy phones today, cell phones that is. Once upon a time we bought a phone to talk on and if we were lucky we shared a decent “party line” with neighbors and strangers who always acted courteously and showed the utmost consideration for time usage so as not to be a hog. Then we no longer had to worry about party lines and we simply had the phone that was provided by Ma Bell when they installed our service. We had a choice of basic black or not so basic black (looked the same to me). For the wealthy and affluent Sears carried several phones in designer colors and some even had gold trim. We now have a generation that buys a phone for the new “features” which have nothing at all to do with making phone calls. Today’s phone buyers are actually buying better camera features under the guise of buying a new phone. If you think about why you would buy a new phone when the one you have works just fine for making phone calls you may better understand why many folks are returning to the basic, not smart, phone. Bob Rankin describes the current phone market for us in this article: http://askbobrankin.com/flip_the_rise_of_antismartphones.html?awt_l=CasIU&awt_m=Ja3psd3SheP6SL
All in all our lives are changing more rapidly than ever as the technology gains accelerate faster and faster.
In the meantime we as consumers are able to harness the gains and use them to our best advantage. WebWhispers is an excellent example of the gains technology has given us in the past 30 years. Without the invention of the personal computer there would be no WebWhispers or Amazon, or……
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