|Name Of Column
||When Did You Become a Lary
||News & Events
||Jana Childes M.S., CCC-SLP
|This Lary Life
||My Story for Timothy
|The Speechless Poet
||Len A Hynds
||The Yo-Yo & A Cup of Tea
||Prose & Poetry
|Bits, Bytes & No Butts!
||Little Things that Make Life Easier?
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
When Did You Become a Lary?
In seeing new members come into WebWhispers over a long period of time, I noticed that more people are getting to us faster. That's good and every year we are found by larys, who hear about us from the Doctors, SLPs, Clinics or other lary's. Some just accidentally find us on the Internet. New members who are long time larys may be new to the computer and glad to find us.
Total Patient members count is 2,171 and we have about 75 with no date of surgery marked. It may not have been required when they joined or some join before they know for sure what their treatment will be and when.
Our current chart shows patients marked with these years for their surgery. Some refer to that as Class of '04 so we can start with Class of '14.
Patients who had their surgery in:
2014 - 5
2005 - 90
2004 - 85
2003 - 77
2002 - 62
2001 - 70
2000 - 70
1999 - 50
1998 - 38
1997 - 33
Prior -250, with 6 of these being laryngectomees over 50 years.
I am Class of 1995 and there are 24 of us in WebWhispers.
The beginning of Dutch's website group was Dec 1996.
For 2013, how about our web presence?
While we are looking at figures, in 2013,
we had 142,605 visits to our website and 296,038 page views.
I am surprised when I look at the browsers we use.
IE -- 43,551 visits, Safari -- 37,640 +(in apps) 2,710, Chrome --27,314, Firefox --15,992, Android Browser --10,449.
And to show you further the changing world we live in, you are using:
Desktop -- 94,974, mobile -- 29,608, tablet --18,023.
When we started, our computers took a large desk top to hold the computers and equipment... we had mobile phones but they were for talking! And we would have said," What the heck is a Tablet?" thinking it was a yellow ruled stack of paper with a pencil.
I cannot imagine what we will have in the next 17 years, but we have come a long way.
Use of Communication Technology after a Total Laryngectomy
Jana Childes M.S., CCC-SLP
Speech-Language Pathologist, Instructor
Oregon Health Science University NW Clinic for Voice and Swallowing
In 1984, 8.2% of U.S. households had a computer. That number has increased dramatically each year since and by the most recent census reports that 75.6% of households have a computer. Computers now have a role in the majority of our daily activities. Computers are used by people of all ages, and the 2011 census showed that 61.8% of individuals age 55 years and older live in a home with a computer (www.census.gov).
Computers are no longer large, desktop machines for home or office use only. Many people carry a laptop computer, tablet (e.g. iPad), or Smartphone everywhere they go. Many computers and handheld devices have software programs to assist with various health issues, including communication impairments. These software programs or applications (also known as “apps”) can turn a standard laptop, tablet, or Smartphone into a speech generating device (SGD). A speech generating device (SGD) is any computer device that assists with communication by allowing the user to create a message that the device then speaks aloud. Traditionally, speech generating technology has only been available through devices that were designed specifically for this purpose. Now that there are speech generating programs for personal computer devices, more persons with communication impairments have access to this technology than ever before.
In 2011 my colleagues and I designed a research study to learn more about how laryngectomees use technology for communication. With the group’s permission, we posted a survey on the Web Whispers message board and interested members were invited to complete it. The response was phenomenal; 250 members completed the survey, providing us with a wide array of information about many different communication methods. Of the 250 participants, a smaller group indicated that they were using, or had previously used, some type of speech generating technology for communication. Those members were invited to complete a second survey related to their experiences using a speech generating device (SGD).
Following review of the survey responses, we identified four distinct patterns of usage or ways that SGDs are used. Our survey data indicated that the majority of persons use integrated communication devices (e.g., computer devices or tablet that were made to function as a SGD through a specific software program or app) while a minority use dedicated devices (e.g., devices that are designed to be a communication device and are sold as medical equipment). The descriptions of these patterns, as well as specific examples of each, follow and will provide insight to the many uses of speech generating technology.
The first usage pattern was labeled “transitional use,” and refers to use a SGD for communication immediately after surgery. For example, one woman described, “I used an iPad with a speech generating application for the first nine months following my laryngectomy because I had a hard time accepting the electrolarynx.” She stated that she was eventually able to speak with an electrolarynx, but continues to use the iPad to communicate in situations where she anticipates difficulty being understood, such as when talking over background noise. Another man stated that, prior to surgery, his doctor advised him that it would be at least six months before he would be healed enough to begin speech rehabilitation. He knew that he would need to return to work during that time and found that use of speech generating software program on his laptop computer allowed him to communicate at work until he was able to use an electrolarynx.
The second pattern consisted of persons who used a SGD as their primary method, or the most frequently used method of communication, typically due to inability to use an electrolarynx, voice prosthesis or esophageal speech. For example, one man began to use an iPad with a speech generating application immediately after surgery, as he was informed before surgery that his ability to regain speech would be limited due to having tongue surgery as well as a total laryngectomy. He described that although most people respond favorably to his communication method, one of his greatest challenges has been that, “some people cannot keep their eyes off of it, as if the thoughts are coming from the machine and not from me. Some people want to speak back to me by typing into the iPad.” Another example of primary use was a woman who began to use her SGD after several months of speech rehabilitation. She tried to learn to speak with several different methods, but ultimately was unable to due to complications of her surgery and previous radiation. She uses her SGD both at home and in the community. She appreciates that her SGD is understood by both adults and children, and with it she is able to continue her volunteer work at a local elementary school.
The third pattern of usage is that of “dual use,” or use of both speech and a speech generating device in a majority of interactions. One participant in this pattern describes use of multiple communication methods, including an electrolarynx for face-to-face communication in quiet environments, text messages on his Smartphone for telephone communication, and use of an iPad with a speech generating app when he needs to communicate over background noise. He reports that each of the various methods meets a specific communication need. He appreciates being able to use his iPad for communication since it is lightweight and something that he typically carries throughout the day. Another interesting example of this usage pattern was a man who had been an esophageal speaker for many years and then began to use an iPod with a speech generating application while in the hospital following surgery for another medical condition. He found communicating with his iPod as an SGD was helpful while he was unable to use his esophageal speech. He was able to resume esophageal speech once he recovered, but continues to use the iPod to clarify his speech if he is not understood.
The fourth pattern is that of “infrequent use” or use a speech generating device only occasionally. One man, who uses an electrolarynx as his primary communication method, described, “I am generally understood well in person, but not over the telephone.” He uses his computer for telephone communication by placing a speakerphone next to the computer speakers, which allows the speakerphone to pick up the message once it is “spoken” by the computer. He described one situation where he used this method to call a store and inquire about specific parts that he needed to repair his lawnmower, “It is easy to use. If I had not had this on my computer they would not have understood what I wanted or who I wanted to talk to.” Another participant, who uses an electrolarynx primarily, also has a speech generating software program on his desktop computer and feels that this is a useful “back-up” communication method, “it replaces paper and pencil communication if my electrolarynx needs to be charged or repaired.”
It is evident that speech generating devices are useful communication tools for many laryngectomees. There used to be a belief that speech devices were only useful for people who had no other method of communication, but this is no longer the case. Many participants in our study find benefit from using a SGD in addition to other communication methods, especially if there are situations where their most frequently used method is not easily understood. While there were four distinct patterns of use, these patterns were not fixed and persons who begin with one pattern of use may move to another due to changes in communication needs, medical status, etc. It is important that laryngectomees, physicians and speech-language pathologists become familiar with the role of these devices and provide support for those who communicate in this manner.
Finally, I would again like to say THANK YOU to WebWhispers for supporting our research and the many members who took the time to share information about their communication methods and experiences. If you would like to know more about specific devices, their features and use, please look for a second VoicePoints article related to this topic in the March newsletter.
“The first thing you learn when you find out that you are sick, really sick, life-altering kind of sick, that it is not going to go away without a fight, indeed, may never go away and for sure will change your plans, is that life goes on. Not your life, but everyone else’s. Even though they all say and truly mean that they want to be there for you, they cannot help the fact that their life goes on and yours has just stopped dead in its tracks, which is an unfortunate metaphor that just happens to be true for you.
You stop being the person you were the second before you heard the news and you become your diagnosis. It defines you the way that other more traditional and hopefully pleasant life passages define you: spouse, parent, grandparent, business person, academic, community activist, horse lover, church volunteer. You add to the list - survivor / fighter / advocate / teacher for a cause you never wanted to know about. That’s what happens to you if, when your life stops, you want to jump-start it again. That is, if you have the strength and the concentration, which is no small feat, when your life has stopped and all the cheerfulness you can muster is necessary to encourage all the people you love, who also love you, to believe that you are going to be fine. When, in fact, you are not sure at all that you are going to be fine. As a matter of fact, you are never going to be fine again and life has just tilted at such a crazy angle that you think you are going to be sick to your stomach, possibly forever.”
I wrote that April 23, 2000, one month after I learned I had throat cancer at age 47. It also became part of the first column I ever wrote for Whispers on the Web in February, 2005, nine years ago. I am nearly 61 now and the world did eventually right itself but I don’t think you ever forget that feeling. Unfortunately we are reminded of it all too often as new folks join WebWhispers and as friends and family join “the club no one wants to belong to”.
I was prompted to look back at some of my early columns after a new laryngectomee, Maureen Mark, wrote that she went back into the archives and discovered that some of the articles I wrote back then mirrored her own feelings and that it was nice to know she wasn’t alone.
We have a mantra, of sorts, here at WW: “we are all different” and certainly that is true in many ways. We all recover and rehabilitate differently. We don’t all voice the same and we all make our peace with being a lary differently. But we are not alone and so it is important to tell our stories, each and every one of them. You never know just who might stumble across your story some sleepless night and take comfort from the fact that while her journey is unique she is not alone.
When I went back and re-read some of those early columns of 2005 it is obvious I was still struggling in many ways, not the least of which was with my skill as a writer!! But I do love the quote I used at the end of that very first column.
The drawback to a journey that has been too well-planned is that it does not leave enough room for adventure.
John Haedtler, New Mexico, USA - 2001
Nothing to do with Laryngectomy’s but still bad every where!
1. People that drive and talk on their cell phones! I hope it is outlawed real soon! Here in New Mexico we are # 1 for drunk drivers in the USA and we have more people killed from Cell phone accidents then drunk drivers! Really sad!
2. People that drive in the left lane of an expressway! We Call them Left Laners! Also part of the cell phone problem, as most are talking on there phones and not even doing the speed limit! or paying any attention to their driving!
3. This one does have to do with Laryngectomees! We don’t have enough group meetings here in New Mexico. There are only 1 or 2 a year. But we all get so much out of them. Even the professionals! It really helps all of us when we can see others with the same problems! Both emotionally and physically!
Len A.Hynds, The Speechless Poet of Ashford, Kent, Englan - 2004
1. Not being able to talk whilst eating, as food or drink rests on top of the TEP valve, in the space from where the tumour was removed, and before it can be swallowed, rather like a chickens crop. Living alone, the telephone rings just as I have eaten the first mouthful of delicious dinner, and while it rings, to dash to the bathroom to try and disgorge what is in the crop, to quickly gargle to ensure every vestige of food is removed and air getting through,
only to reach the phone to find the caller has rung off.
I have arranged that my family ring at certain times, but if I cannot talk, I knock three times, and they know the situation. But telesales are the most aggravating, and so much food is wasted.
2 My next irritant is well meaning people who naturally assume, that because you have a voice impediment, is that you are deaf as well.
3 Helping out at seminars, or training sessions, and frequently going to college courses to keep the grey cells working, I find the artificial voice is too feeble to be heard at the far end of the hall or classroom, so I purchased a voice amplifier which fits to the belt. A marvellous thing, but being made in China, the belt is always made to fit a person with an 18” waist.
Joe McGoff, Houston, TX. - August 13, 2013
Only one pet peeve comes to mind, and I'm not even sure it's a "peeve".
Not surprisingly no one is in the best frame of mind after having their larynx removed. So after an extensive hospital stay I was released and returned home. I live alone so in anticipation of some of the challenges I would be facing I printed up a brief note explaining I had just had a laryngectomy, was unable to speak and would be communicating by writing on a small 12" x 10" white board with a black erasable marker (I was on a short waiting list for an EL, electro-larynx) and, of course, had yet to have my TEP implanted. This way I would not have to write out the same message every time I went shopping, the bank, filled up the car and all the other mundane contact you have every day with people. Invariably, I would say about 8 out of 10 times, people would increase the volume of their voice, some almost to the point of screaming when they responded.
My ENT surgeon didn't warn me deafness would be a side effect of my surgery!! I wasn't offended but did find this reaction curious. I had heard, and probably guilty of it myself, people had the same reaction when interacting with the blind or sight impaired.
Overall people are very helpful and considerate given half the chance.
Debbie Deaton, Cincinnati, OH - 2012
1. when someone uses the word "seen" without using have or has, ie: I seen her yesterday, it should be I "saw" her yesterday. I "have seen" that movie 5 times.
2. when I try to talk and my drink or food comes up in my mouth and spews out so I can't talk while I eat or have something to drink.
3. people complain about dumb little stuff that is SO UNIMPORTANT and they don't see the good in life.
My life has changed so much since becoming a lary that it really irritates me when people gripe every minute of their day, I just want to shout at them to live my life for a day. Even tho my life is much different as a lary, I still have a positive attitude and I'm very thankful for all the good people and good things in my life.
Live life and be happy! May God bless you today and everyday!
Frank Klett, NJ - June 2008
1. This is the most irritating one...when someone calls me and then asks if they can put me on hold!! Well, you can only imagine my response.
2. When someone calls when I am not home and doesn't leave a message, but a day later asks me why I didn't call them back!
3. And my Number One Peeve is getting an email asking for a review of a product a had bought...then finding a 10 question response page and even if I answer them all and want to submit the review...I can't until I write a 40 character summation of my review! Well, excuse me, but what were the 10 questions for?
Margo Ziegler, Minnetonka, MN - Permanent trach 1996
I am a person who does not get mad very often. But, one of my greatest pet peeves is "tail gating". I normally drive the speed limit or normal speed for the weather conditions, and just don't understand the reasoning for someone to pull up so close to the back of my car, that I can no longer see their headlights! And even when there has been opportunities for passing, they choose not to pass, but just stay behind you making it terribly dangerous in case you have to make a quick stop. There have been times where I will find the closest exit off the road just to get rid of them. What is wrong with these people???
My other two pet peeves are regarding dog owners. I have been a dog owner most of my married life (47 yrs now) and have always been a good dog owner. My dog is always on a 6 ft. leash when we walk, yet many people on the trail walk their dogs with no leash and no control. Many times some one else's dog has tried to attack my dog who is obediently walking next to me on her leash. I will do anything to protect my dog.
The second pet peeve I have about dog owners is that many do NOT pick up after their dogs. Our city even provides doggie bags! I always carry bags with me when ever I take my dog for a walk and always pick up after her. It's especially frustrating to me to notice these same people over and over, just letting their dogs poop and keep walking. Do they actually think their dog's poop will just disappear? If it's directly in the walking path of the trail, I will pick it up so others don't walk in it. What is wrong with these dog owners???
Scott Sysum, Concord, CA - Aug 2008
1. When people cannot understand me on the phone. I use a Cooper-Rand Electrolarynx. I work in a office environment, where the use of the phone is sometimes required. I have got mad and hung up a few times. Then I reflect, it is not their fault, my voice is compromised. I remember what Elizabeth Finchem told me, you have to speak slowly and really ennunciate the words and sounds. It has been a while since I got mad about that. Heck, I did not talk much on the phone before the surgery, I talk even less now.
2. Medical Insurance. I have been fighting multiple battles with the health care industry, I know it is a fact of life for us larys. My insurance denied a PET/CT exam because, well basically, they said I was already heading for death, so no help from the procedure. That was $24,000. Went to collection agency, so I talk on the phone even less now.
3. Lymphedema of the face. Last year my face started to swell up. It was gradual at first, puffiness around the eyes, then it progressed to full blown, bloating of the whole face. There were a couple of days I could barely see, the swelling was so bad. My Stanford ENT told me there was nothing he could do. Oh he gave me prednisone, had me take an MRI (what a loud procedure), and in the end I had to go out and seek lymphedema treatment by myself. It worked, I got treatment, the massage (oh, that is so good), and I am maintaining so far. But I am still a little puffy, and I wear this Kinesio tape on my face, while I commute to work. As Russell Thompson, my new Lary neighbor says, things are getting better. We plan on starting a club here in the San Francisco East Bay.
Bob Megrey, Brunswick Ohio - 2011
Some things that really irk me.
When a person asks me a question and I respond in my best sounding voice (in my opinion) . I speak pretty darn good with my TEP and they are too lazy to listen, they say "WHAT?" and make me repeat.
Another one is when I cough, They say,"Are you gonna be alright?"
And the third is, even after 2 years a Lary, not moving fast enough to remove my HME before the cough.
Dave Aitchison - April 2012
Three things that irritate me are:
People that assume I am this way because I was a smoker. Never smoked!
People that ask what hands free device I am using. I use esophageal speech.
People that assume because I talk softly they need to talk loudly.
Tom Olsavicky, Newport News, VA - 2008
The things that really "get my goat" are:
I really get frustrated when in the hospital and the nurse responds to my call button as "Yes, can I help you" over the intercom from her nursing station, when she knows I am a laryngectomee.
I hate it when people talk or answer their cell phones in a movie theater. It shows a definite lack of concern for others.
Wearing baseball caps in restaurants or in church is something that seems to be more accepted now than ever before, but not in my family.
Tom Olsavicky, Pres.,Peninsula Lost Chord Club
Marian Cure, Cedar Creek Lake, TX - 2009
I’ve always thought to give an annoyance too much time just gives it negative energy. One of my favorite thoughts is get over it and move on. It works well for me.
Having said that, my top peeve is for people to say “ oh, I bet you smoked”. My friend with pancreatic cancer didn’t drink any alcohol either. Five weeks out of my surgery, I went to my first Lary Conference. A non lary lady lectured me on the horrors of smoking. Seriously?
My voice confuses telephone operators; however, sometimes that’s just downright fun. God bless those who listen and treat the call as a normal call. I wish I could use my Bluetooth in the car better.
My third ( I’m on a roll now) are people who talk very loud for no reason. Maybe my softer voice has made me more aware of loud talkers.
Well, I’m feeling guilty now for complaining and imagine these are many people’s peeves. I’ll just get over it and move on.
Lillian Parra - 2001 to present ;-)
No peeves here, just appreciation. I know I haven't said much thru the years but have been lurking and taking all your joys and pain and trials to heart and praying for you.
Love you all,
Robert Legros, Gatineau, Quebec, Canada - 2011
NOISE! NOISE! NOISE!
This has got to be the number one irritant to me, and , I suspect, to most laryngetomees.
I use esophageal voice to speak, and, as you know, the volume is insufficient in many circumstances, such as restaurants, shopping centers, or wherever there is substantial background noise. Even when I use my TruTone, noise is an ever present irritant. But, after almost three years as a Lary(4/11), I cope with it.
Another major irritant to me, is to be in company of people who suffer from chronic verbosity. Some believe that everybody is interested in the smallest detail of everything they have experienced. Briefly, you ask them what time it is and they tell you how to build a watch.
The last, (I'm only allowed three), is the tailgater. I love driving down the highway, dutifully following traffic, when someone sneaks up behind me as if wanting to examine the contents of my trunk. Not only irritating, but downright dangerous. Oh to have a 'James Bond Car'! So there, my rant for today.
Not being able to eat solid food , swimming,and dinning out with friends
Joe Hilsabeck, Edelstein,IL - 2009
Three Things that annoy me:
1 Things that say 'easy open', that aren't
2 My wife insisting that I answer, when I'm in other room with both hands full
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
My Story for Timothy
I had a recent medical emergency that took me to Johns Hopkins Hospital where 18 years before I had undergone a laryngectomy. I don’t live very far from Hopkins, but it’s still an hour’s drive and I had eaten something at lunch that just wouldn’t go down. Laryngectomees often have esophageal issues and mine could fill a few medical books.
Prior to the removal of my larynx in January of 1995 I had insurmountable problems with scar tissue that developed from a diagnostic biopsy that revealed a squamous cell carcinoma of the right true vocal cord. They prescribed an aggressive regimen of radiation, and although the treatment promised a 95% cure rate, the fine, fine, fine print (which few of us ever read) indicated that I may ultimately face a laryngectomy which I did a year and half later.
A fistula developed shortly after the laryngectomy, requiring a longer than normal hospitalization, and two very difficult surgeries over a six month period were performed, in hopes I’d be able to swallow again. Tube feeding kept me alive while these surgeries left me speechless and unable to eat for two plus years, during which time I struggled with an esophageal voice prosthesis, leaving me frustrated and hopeless. Continually focused on my stoma, I was speaking erratically without any kind of flow and I was hostage to mirrors, tissues, Q-tips and tears.
Shortly after my diagnosis of throat cancer in 1994 my doctor recommended I speak to a woman who had lost her voice and was speaking “electronically”. I shuddered at the thought and it took me two weeks to build up the courage to go see her. I wanted to believe radiation would save my voice and my denial coupled with my fear of having to sound robotic for the rest of my life led to one foot on the brake and the other on the gas.
Her name was Doris Auble and she worked for a real estate company in Key West, Florida where I was living at the time. Newly divorced at 47, I had gone there to begin a career as an artist and writer and was fighting the idea of losing the very thing I had spent my life trying to perfect, self- expression. I surrendered my pride and walked into her office. I could hear some buzzing in the back of the room but when she rounded the corner to greet me I fell into her deep blue eyes and her bright white smile.
She spent the better part of an hour sitting at her desk, speaking rapidly with her Servox, answering phones, dealing with interruptions, and conducting business as any normal speaking person would. I was in awe of her and had no difficulty understanding anything she said. I left and although I refused to believe I would share her fate, I never forgot her.
She was the hope that showed up in that dark hour 18 months later when I woke up in Intensive Care after my own laryngectomy. There was no more denial. It was real, it was permanent, and there would be no going back.
Months into my rehabilitation Doris came to me in a dream and I told my speech therapist that I wanted to speak with a Servox, that I didn’t care how it sounded, that I just wanted something that could keep pace with my thoughts.
It didn’t take me long to perfect it mechanically. Finding the “magic spot”, I eventually learned where to press it and how to manipulate the buttons, pausing between words and sentences, and how to avoid troublesome words. Realizing I was pushing a button for every syllable, I sharpened my skills of verbal shorthand and years later, after re-joining Toastmasters and winning the valued prize of “Best Speaker”, I felt like I had traveled a very big circle. Having had years of acting experience and public speaking in my community, I had the kind of preparation most laryngectomees aren’t fortunate enough to apply to their rehabilitation.
Eventually, the esophageal issues lessened and with a system of self-dilation, I was able to swallow normally and institute juicing and a healthy diet. Having been born in North Carolina, I was raised on tobacco, diet coke and roast beef. A child of the 60’s, smoking and drinking were the norm and remained so for many years, so my health turnaround had to be drastic in order to survive. Seven years after my laryngectomy and a return to health, I was diagnosed with a Stage III lung cancer, which almost got me. But because I had strengthened my body, I was strong enough to undergo the chemo, radiation and surgery without succumbing to the ill effects of such critical treatments.
Unlike a lot of laryngectomees, I didn’t join or start a club or spend time with others like myself. If anything I wanted to push forward and return to the mainstream speaking world as fast as possible. On a mission to use all avenues of expression to illustrate the devastating effects of tobacco and alcohol abuse, I began speaking at schools and eventually was able to narrate and film a documentary about my life and loss to educate and inspire children to never start.
Along this path my trusty Servox has never let me down. Year by year I have grown and perfected the ability to keep vocal pace socially and professionally, and speak any-and-everywhere with confidence and gratitude. Yes, indeed, it comes with potential hazards. Like keeping the battery charged enough for the amount of speaking I do, and the chronic neck, shoulder and elbow pain that results from constant use. Speaking on the telephone is problematic but with texting the new technology, I don’t feel compromised or “handicapped”. I am truly blessed to have survived what so many don’t, especially with my genetic history of cancer and years of smoking and drinking that precipitated my loss.
Redemption is the hardest part of overcoming what initially feels like a self-inflicted loss. The guilt and remorse that eats away at you early in the diagnosis because you know you participated in the path towards your loss is hard to overcome. But forgiveness is possible. Because I’ve been able to use my experiences to help others, and serve my community and country through activism and determination, I see great value in the challenges I’ve faced and the opportunities they provided.
You wouldn’t have known this to see me weeks ago when I was propped up by six pillows with an IV pumping fluids and a really bad hair day at Johns Hopkins. My swallowing emergency happened on a weekend so I had a couple of days to patiently spit in a cup, quell my hunger and wait for a surgeon to remove the obstacle and dilate the opening to ward off future problems.
The nurses and staff at Hopkins are the best and in the 18 years that I have been away have made incredible advances in patient care. Even though I couldn’t swallow, I could still speak and use my Servox so I spent the hours trying to engage as many of the staff as possible. I connected with one nurse in particular who was curious about my journey and the excellent way in which I spoke. Shortly after my surgery, which went gratefully well, she told me about a man named Timothy who was a few rooms down the hall from me who’d just had a laryngectomy. I asked if he would like a visit before I left and an hour before I was discharged the nurse came in and said that he would like to see me.
Definitely ragged around the edges I knew I couldn’t leave without seeing him. Applying my favorite “Red Stiletto” lipstick, accompanied by wild hair and a happy heart to be leaving, I wanted to leave this man with some hope. The nurse wheeled me into his room and within seconds I had returned to a day I’ll never forget. He was a big hunk of a darling man in his late fifties and was seated in a chair near his bed being administered to by a nurse. Remembering well the horror of this surgery with the multiple tubes and drains and swelling and the open stoma and the crust and nastiness of lung suctioning – all the while being speechless and helpless in ways no one but a laryngectomee can understand, I caught my breath and started talking.
I’ve long since learned that you don’t ask a new laryngectomee a question that can’t be answered with a yes or no. Having to write down your responses can be an exercise from hell and this man had a small note pad and a pencil. I was lucky to have techy children who supplied me with a laptop and since I am a writer and can type at the speed of a bullet, it was exponentially easier for me to communicate. So In introduced myself and gave him a quick recap of my own laryngectomy, which he seemed intent on hearing.
I’ve also earned that you can’t be in the company of someone you know is feeling great fear and panic and sadness, feelings you know all too well yourself, without the immediate and spontaneous urge to want to touch or hug or comfort in any and all possible ways. But because I remember being self- sufficient and determined to do as much for myself as possible, I didn’t want my sympathy for Timothy to override hope or my humor to dispel compassion.
It all spilled out of me, sitting next to this man, the feelings and the memories and then the stories of how I eventually found my Servox and learned to use it. He had one sitting on his bedside table and I asked if he’d been able to use it. He shook his head no, so I knew where to begin. Giving him a quick bedside instructional I explained what he’d find as initial difficulties. He had a full and swollen jowl so I told him he’d have to be patient in exploring the underside of his chin to find that magic spot where his mouthed but unspoken words would meet his Servox. I explained the buttons and volume control and showed him how to use them between syllables and words and sentences so he could avoid the oftentimes typical streaming of robotic sound. I explained pitch and how to lower it using the upper button and took apart the instrument to demonstrate how to fine tune it to his preferred tone.
After my technical explanations I asked him for his address and he wearily wrote it down for me. And then I looked him in the eyes and told him that he WOULD recover from this; that he would grow and change and learn to speak in a whole new way again; that the future didn’t have to be a lonely isolated place of regret and humiliation. I shared my funniest story about being ridiculed, which made him laugh, and then the tears began to spill out over his rosy round cheeks.
Just like I was years ago when I walked out of Doris Auble’s office, Timothy was also grateful and in that small piece of hope I gave him as I was wheeled away and left the hospital knowing the real reason I’d had to go there. Timothy.
May God bless him and his recovery.
(Geraldine Lloyd's story was sent to us unexpectedly from a mutual friend and we are delighted to publish it. Geraldine is not yet a member of WebWhispers but we hope to be able to reach her with an invitation to join.)
Two light-hearted true stories from the old police days, when I was a uniformed officer in South London.
I had promised my small daughter, Pat, that I would take her and Tilly, my wife, to the seaside at Little Hampton in Sussex the following day. But I had the whole night in front of me on duty, walking the beat along the Old Kent Road.
I knew that I would have to avoid if possible making any arrests that night, to avoid having to go to court in the morning, and not being able to keep my promise to young Pat, who already had her sand bucket and spade ready. We were going to the coast in my ancient, battered old car.
Quite early on in the night, I had waved to the PC on the other side of the Old Kent Road, who was from Tower Bridge Police Station, that main road being our boundary. It was about midnight when I saw a drunk staggering along on the other side of the road, and he collapsed in a shop doorway. I went across the road, to make sure he was alright, and left him there, knowing that the Tower Bridge PC would be along shortly, and would have to arrest him for his own safety, as being “Drunk and Incapable”. I continued my patrol, and shortly afterwards found the same drunk, but in a shop doorway on my side of the road. That crafty PC had carried him across the road and deposited him on my beat. I promptly lifted him up and carried him back again.
I later found the same drunk on my second beat, further along the Old Kent Road, and that PC could not possibly know that I was covering two beats. I got the poor chap to his feet again, and half carried him to the canal bridge, which was the boundary with yet another police station at Peckham. After carefully looking round for any inquisitive Sergeants or Inspectors I carried him over the boundary onto Peckham’s Manor, and gently lowered him into yet another shop doorway.
As I did so, he looked up at me despairingly, saying, "I wish you two would make up your mind. I feel like a bleedin’ yo-yo."
"DONT GO TILL YOU'VE HAD A CUP OF TEA "
I was patrolling my beat along Kennington Park Road, when an elderly lady told me that she had heard calls for help coming from the basement flat of the house next door. I went with her to the premises and could myself hear those plaintive cries for help. Looking through the letterbox, I could see a key on a string, and pulling it through I let myself in.
There was a middle aged lady lying full length on a sofa type bed, moaning pitiably, and rubbing the area near her heart.
She was absolutely obese, and it would not be untrue to say that she was bordering on the mountainous. I asked her what was wrong, and she told me that she had pains around the heart and she was convinced that she was on the verge of dying. Almost constantly, she kept saying, "ooh -ooh - I'm going". I felt her pulse and her heart beats were regular and normal. She was not clammy, and had a fairly healthy colour. I told her not to worry as she appeared to have a strong heart and the pain must be due to something else. The other elderly lady went to phone her doctor, and I made the obese lady and myself a cup of tea. This constant, "Ooh - ooh - oh, I'm going" was being shrieked out, and she was obviously in pain in spasms. I had seen too many people who were about to expire, to know that she wasn’t at that time.
The doctor was some time in coming, and that constant shrieking was beginning to get on my nerves. Passing her tea cup for her to drink, I said in sheer frustration, "Don’t go until you've had a cup of tea." It was a ludicrous thing to say, and she looked at me in amazement. The funny side of the comment suddenly struck her and she started laughing, until her whole huge body shook, and then suddenly she passed wind, and it was so loud that I swear the furniture vibrated. She then said, still with that smile on her face, "The pain has completely gone,"
I stood in the open doorway, and when the doctor arrived, I saw his nose twitch, and he looked at me accusingly. I shook my head vigorously.
I was foolish enough to mention this incident at the station, and for a long time afterwards, some wag would call out, on seeing me about to leave the station, "Don’t go yet Len, not till you've had a cup of tea."
The Sergeants were no better, and I entered the front office one day, to see one of our Sergeants on the other side of the counter, bandaging up the knee of an elderly lady who had fallen down outside. I heard him say, "We can deal with anything here, love," and looking up and seeing me, "Why that officer there has special training in heart complaints."
Little Things that Make Life Easier?
Our Love of Gadgets
We will all sooner or later come across a gadget that will steal our technology loving hearts and forever change the way we do something. Our phones have no cords and can even work while we are away from home. It turns out that the cell phone was just the tip of the iceberg of things to come in our techno-enabled lifestyles.
Cameras have been outdated (except for professionals) by the cell phone and the personal computer has been replaced in many households by a tablet.
This week just saw the Consumer Electronics Show 2014 (AKA: CES 2014) in Las Vegas and interestingly was attended by mostly company sales reps and technology engineers. During the CES many new products were introduced and some were seeking funding to continue development...which can often lead to a buyout by larger firms.
Some items shown off were new cell phone models, household automation, self-driving cars, PC's that resembled large tablets, smart televisions, robot cleaning systems, and many more.
The link below is from Dave Taylor and provides a good summary of the most interesting gadgets demonstrated at CES 2014;
Have You Found Yours?
We are all searching for that gem which we know is out there. If you are into fitness there is a fitness bracelet (Fuel Band) that will track your cardio through the day, as well as, your blood pressure and pulse. Depending on the information you want to collect you can find the right match “Fuel Band” to meet your needs. Several sports apparel companies have their own versions of the fuel band available including Reebok and Oakley.
If you are deeply into tech innovations then you may want to check out the latest in “smart watches”. Now you can have your phone, simple data access, fitness info on your wrist. The market leader today is The Pebble watch, but it is soon to be joined by Apple, Google and others in the race for your technology dollars.
Do you Use a Cell Phone or a Phablet?
With the advent of the cell phone technology companies quickly made use of the idea of mobile data services. Today Phones are getting larger and are more than simple communications devices. You can find smart phones that can offer many of the same features that you once needed a personal computer for and the mobile communications companies that offer them include data plans to go along with your phone plan, giving you everything you may need in one handy little device.
As phones have gained in features, they have also gained in size. Today's smart phones are getting larger to accommodate the additional user preferences...longer and wider phones have picked up the title of “Phablets” since they are combing the capabilities of both a phone and a tablet.
Do You Have Your Data in the Clouds?
We are all in need of data storage for our photos, videos, personal documents, etc. As we fill our hard disks with our personal treasures we are putting ourselves at risk of a hard disk crash or corrupted data. Another tech innovation that has taken off and has more than met the expected value is the use of cloud storage. Simply put this is allowing our data to be stored off-site by a company who makes money providing secure online storage. Since they want to gain customers through offering small amounts of free storage to try out their service.
I have taken advantage of the free storage being offered by Dropbox, Skydrive, Google Drive and iCloud. In total I have about 30 Megabytes of no cost storage...more than enough for my needs. Bob Rankin offers some advice and other names in the following article:
Another upside of cloud storage is the ability to access your information/data from any location where you can log in. You may be visiting Auntie Freeze in North Cheek Creek and want to show her your vacation pictures from the Summer. No problem since your photos are all in the cloud in your personal folder...just log in with your phone, tablet or Auntie Freeze's PC and you are there.
Tips and Tricks!
For the Firefox and Chrome users...did you know that you can keep your bookmarks available in a “Bookmarks Toolbar” by going to the View heading in your menu and selecting the Toolbars icon and the the Bookmark Toolbar. Now your bookmarks will appear directly under your navigation toolbar. You can now add bookmarks to it by dragging your open tab to the toolbar. You can also add folders to the toolbar such as Webwhispers, Recipes, Daily Reads, News, and so on. Then you can add you bookmarks into the right folder.
The Fun Place..
Do you want to send another Webwhispers member your thoughts during this holiday season? Do you find yourself wanting to have a cup of coffee with a group of your closest friends? Be sure to check into the Webwhispers Forum during the week and join the rest of us in sharing information in a coffee in the morning sort of way. All sorts of “hot” news and tips that make our lives richer and just plain fun. You'll find everything from Lary issues, Life lessons, Marlene's greatest tips ever, and just plain fun with Maureen's cartoons. And don't forget to sign up for the givaways from our vendors! If you're not using this great little bit of high tech you are missing one of the best things in our Lary life. Hope to see you there.
And then there is our new editing program in our Delphi Forum which Mike R has activated for us. This is a welcomed improvement in how we send and reply to messages and offers much friendlier options. You can post your wishes and photos to share with the Webwhispers community.
Forum members can read all about the new features of the Delphi editor...on the Delphi Member Services Forum.
Frank in NJ
My 24 year old daughter had the opportunity to go to a fundraising event for Prostate Cancer a couple of months ago. I think it's great that she attends these kinds of functions and supports these types of events that raise money for research. She took this opportunity to talk to people about how the event got started. Specifically, she talked to a surgeon (urologist). She told him about me and the type of cancer I have and the fact that there is very little awareness about head and neck cancer in general.
He talked about how he has close colleagues/friends that work specifically with patients with head and neck cancer and agreed that there is a real need to raise awareness and funds for that specific cause. They decided to meet to discuss what they could do to get things started. One of the options they discussed was to figure out a slogan or a symbol that would be specific to head and neck cancer. For instance, Breast Cancer has the pink ribbons that everyone now recognizes as symbolic to that. Prostate Cancer has the yellow bracelets.
My daughter told him how much Webwhispers has helped me with my journey. So,from that, we discussed that maybe this group could help to figure out a slogan or symbol that could be specific to head and neck cancer.
One of our new members wrote in last month about how she was embarrassed to go out in public. I think many of us have felt or still feel like this. With more awareness about head and neck cancer, we may not have to feel the stigma related to this type of cancer and at the same time raise money for research.
So, I would like to send out a call for ideas about how we can create some positive awareness related to head and neck cancer. Specifically, ideas related to symbols or slogans that we could use to identify these types of cancer and in turn, raise funds to help fight against these types of cancer.
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