"Does it bother you to talk about your cancer?"
"Are you uncomfortable or embarrassed by it?"
John Haedtler, New Mexico, USA - 2001
Hell, No! The more people I can make aware of the problem, the better. I feel we can find a cure for this! That is the bottom line!
I love the questions that kids ask. They are not afraid to ask! Kids in the Winter is the best, They see the breath coming from my neck and ask what happened, I normally say, Don’t worry, I’m from Roswell, NM, All aliens breathe through their necks. I guess that you must know about Roswell to get that. But then I tell them the truth about smoking and getting cancer and this was the only way to save my life.
I also volunteer to speak to new cancer patients about what they are about to go through. They all ask why I do this, My answer is, I had no one to speak to prior to my surgery. And I was scared to death when I went in for my surgery!
Madlyn Walton - 1998
I got most questions from kids and since I did not want to get into the cancer info I would tell them I hurt my throat falling off my bike. Then I realized I was creating a fear in them about bike riding. As one little girl said to me, "If your throat ever hurts again, just call me and I will bring you a glass of water." That's when life got a lot easier for me.
Loyd Enochs, Evansville, IN (home), Mechancisburg, PA (work) - December 2009
I am comfortable discussing my cancer, recovery from surgery and day-to-day life as a lary. It happens to me a lot because I am a consultant and I travel all over the country working at different clients' sites. At every new office I visit, someone invariably takes me aside and asks "what happened", and we usually wind up discussing not only my situation, but that of a relative or friend of theirs who has cancer and their situation. Also, the large companies I work with usually have a team comprised of employees that are designated for emergency and first-aid response. I _always_ find these people and ask to speak with them; I show them my safety cards and give them a quick "neck-breather" briefing for their teams. At one location, I was the guest speaker at the monthly training/safety meeting of these first responders.
I recall running into some coworkers during a layover one Sunday afternoon at a Delta Sky Club in the Atlanta airport (we were all waiting for the same delayed flight to the west coast and our client). One of my coworkers wanted to know the technical details of how my "push-to-talk" button on my neck worked; she had seen me around the office in daily activities but wasn't sure how to approach the topic at work. So we got into a "show-and-tell" at the bar with a filter, baseplate, one of my spare prostheses and a safety card I always carry (from ATOS, but all the vendors at the IAL distribute them). By the end of our short demo and discussion, 5 or 6 people had gathered around. One of the Club employees remarked that her uncle had one but she hadn't ever known how it worked.
Because I work on the road, I am in daily contact with hotel desk clerks, airport gate agents, flight attendants, corporate white collar types, manufacturing floor workers, waiters, waitresses, and bartenders. They all are curious, but rarely come forward to ask questions. In my experience, there are lots of people out there who are genuinely interested in our successes and, more often than not, have someone in their immediate circle of family and friends who has experienced cancer. These people are honestly looking for "expert knowledge" that they aren't getting from the medical community - a layman's perspective, if you will - that can answer their questions with less technical answers. I've found that they are just nervous to ask us because they think we might be offended or too angry/upset/mad/sad/sensitive to talk about our cancer. But mostly, they are worried about a friend or relative and need to hear about some positive, real-world experiences. By being forthcoming with our experience and going about our "normal" lives in our normal, no-nonsense way, we can encourage them to ask questions, ease their concerns and, ultimately, help them understand their family members better.
That concern went away really fast. Now, I rather enjoy it when people ask questions about what happened, how I am able to speak, etc. And, my wife often has to restrain me from popping out my HME cassette to reveal my stoma. So, I have learned to not volunteer "Too Much Information".
Tom Olsavicky,Newport News, VA - 2008
President, Peninsula Lost Chord Club
Am I bothered by talking about my cancer? In fact, I'm just the opposite. I am proud of the fact that I was able to survive the operation and get on with the rest of my life. I would talk more about it if people were willing to listen. Like many of us, I had an adjustment period when I was looked at when I started to speak with my new voice or when waitresses could not understand what I was ordering but that quickly went away when I realized that they were curious more than anything. I was never a smoker or heavy drinker so maybe that makes a difference to some who blame themselves. My feeling is that it can happen to any of us and I don't mind telling others how it has effected my life.
Scott Sysum, Concord, CA - Aug 2008
Initially I was reticent about speaking about my cancer. But now it is not about speaking about my cancer, as it is speaking about my voice, I use an electrolarnx, so the mechanical sound is hard to understand sometimes. Really, nobody asks about my cancer. I think people don't like to probe about cancer in a fellow or acquaintance. Only my mother has commented on my cancer, and she said it was all my fault, you know, life style choices, smoking and drinking. Which is true, but why hammer me with that.
So now I am open to conversation about my cancer and surgery, It is what is!. We have to live the life we are given, and for now, I am glad I am alive.
Dick Strauss, Elk Grove Village, IL - 02/07/2002
I am not in the least bit hesitant to speak about my cancer or being a lary In fact I welcome the opportunity to make people aware of how we verbally communicate and what we may require in an emergency. I welcome the times I'm asked to host a program where I'm the moderator or a presenter. What I dislike is when my lady and I go out for dinner and the restaurant is loud with overwhelming music, making conversation extremely difficult. I use an electrolarynx.
Margo Ziegler, Minneapolis, MN - 1996 - Permanent Trach
I always have been very comfortable about talking about my cancers. Not only my Thyroid cancer, but also my breast cancer. When ever someone has asked me a question, I have always given them as many answers that I could. And how it affected my life and how I deal with it. I have not met anyone yet, that asked me a question, that wasn't very interested in hearing what I had to say. I am mainly a "positive" type person and I do think the more we can share with people, is a good thing. Especially to see we are SURIVIVORS!
Marilou Percival - 8/2013
I do not mind talking about my cancer, I think when a person asked me questions, I enjoy answering them and giving them information that may provide them with something they may be able to use someday. I got lots of questions right after surgery, and now only get one once in a while. It is much easier telling people now that I can 'speak' rather than having to 'write' my answer.
I have done a 180 with regards to speaking about cancer. When I had breast cancer in 2001, I would not talk about it much, only to people who knew me. It was simple not to have to say anything since when looking at me you did not know whether I had ever had cancer.
Now with being a total laryngectomee, it is very obvious that something had happened around the area of my Stoma. I really enjoy when children ask me questions and I can tell them about it, show them my TEP.
Therefore, the speaking about my cancer has been a learning experience and has widened my knowledge.
Elizabeth Finchem, Tucson, AZ -10/78
"Does it bother you to talk about your cancer?" "Are you uncomfortable or embarrassed by it?”
Assume these questions are meant essentially for our newest laryngectomees, still I can relate as I can recall vividly what it was like those first few months for me and my family; especially for my six year old daughter that was teased daily by her classmates...even after school hang up phone calls to continue the harassment about her mother using an electro larynx. When I discovered what was going on I dealt with it by arranging to speak to her 1st grade as part of the Health curriculum. (Just two months post op and I took on this public speaking assignment.) The kids all knew me as a regular volunteer and neighborhood friend. Facing them in school was the first step. Once they heard what had happened to me, and they each had a chance to use the electro larynx the tide was turned from oddity to understanding and fun for the kids. The after school phone calls with laughter making hurtful fun, and the hanging up suddenly stopped.
Ever since then the necessity to educate (explain) about my new voice and the stoma are a result of me having had cancer, what kind of cancer, and how long ago it happened. It's been a little over 36 years ago now and I still have to explain this to the curious who may be cashiers, doctors of all sorts...everywhere, friends, and even an occasional nurse or therapist that may see me in the airport or grocery store. The latter always assume I am a "trach patient" not comprehending that it is a permanent stoma and my larynx is gone because I speak very well. "How IS that possible?" So we teach as we go. Am I embarrassed about this? No. It is an opportunity to help others know that rehabilitation and survival post op is possible so many of us live to thrive and enjoy life again.
Marlene E. Grayson
In answer to this months question, I must say, NO! it does not bother me in the least to talk about my cancers or experiences with them, I am not embarrassed in the least, I often forget that I can not talk and only when confronted do I remember to use my writing board to explain that I do not have a voice. Most people can read my lips.
I really like to talk about it or have my story out for all to read, If my actions from the past can educate anyone, child or adult the happier I will be, also I like to show others they can bull up, be strong and get through just about anything. I like to be support to anyone I can help.
Mohan Raj, Bangalore, India - Lary Mar 2010
The truth of the matter is, more often than not, it is the listener who feels uncomfortable and embarrassed to hear of my Cancer. I can see the listener, ever so sadly, mentally writing me off to pass away,in the next few weeks or months. When by chance I bump into the same listener after a few months,the astonishment and the disbelief of that person is easy to see. He stares at me, dumbfounded, as though he is seeing my ghost, being just unable to believe that I can still be alive. He cannot express it, for the sake of decency. But thesilence and the look of wonderment tells it all. And that is an embarrassing and uncomfortable moment for me!! It happens ever so often, as more time passes.
Christo Slatton, Bullhead City, Arizona - Sept. 2014
No it doesn't bother me at all. People are curious especially people who are not complete strangers. Friends and their friends etc. You can tell when someone wants to ask about that hole in your neck but are afraid to. When I see someone with that curious look on their face I will usually “break the ice” by making some comment about what a pain in the butt it can be. Once they feel it’s OK to ask they do.
So far I have never been embarrassed or felt uncomfortable about it. It is what it is. Now if a big wad of goo was to come flying out in a crowd that might cause a little embarrassment . So far I've not had that problem. What I get from 99% of the people I come in contact with is curiosity. I live in a relatively small town and I believe I am the only lary here. There is only one SLP within 100 miles of me and she is not trained to deal with my condition. I did meet a woman at the store whose husband had throat cancer and was a lary but had passed away years ago. So everyone is curious and I have no problems talking about it and educating people on what it’s like and how we have to deal with it. Hey you never know some young person I talk to just might grow up and develop something that will make our lives easier in some way. Wouldn't that be nice.
I have no problem speaking about my cancer and find many people would like to know more but are afraid to ask. I do not like friends who have used me as a poster child for their relatives to get them to stop smoking. It is very awkward and doesn't work. I think the more we talk about cancer the easier it is to find correct information and we aren't so uncomfortable. We can support each other.
Len A.Hynds Ashford, Kent, England
I have noticed how the general attitude towards mentioning cancer has changed over the years.
When I was young, cancer was of course still a serious problem, and was spoken of in hushed tones, as if just saying the word would cause you to develop it. And as a young man I saw so many young women die of cancer, and it appeared that any cancer would be fatal. Of course, so much has been learnt over the last seventy years, not only in identifying the many, many, different types of cancer, but slowly, but surely, so many different types have been beaten, but still the more serious types have still to be overcome.
The story of cancer of the larynx, has been with us for many years, and originally nothing could be done, and generations just died as it slowly spread to other organs, or the patient died of strangulation. Then through trial and error the cancer was removed, leaving the patient without the ability to make sound, as the vocal cords had to go. Then through the years, those doctors worked on various methods to renew speech. and most of us now do have the ability to speak again. So your white bib should be worn as a badge of courage, you are a survivor.
Cancer is spoken about these days quite easily, and it is far better than the old days .
Debbie Deaton, Cincinnati, OH - Surgery 2/28/12
No, it does not bother me to talk about my cancer. In fact, I've walked up to a stranger, I've seen smoking and let them know that this is from smoking. I do this to try to help others see what that bad habit can cause. I would much rather talk about it to someone who is curious than to have them just stare at me. When I'm in a room and talk, everyone stops what they're doing and looks at me. Nobody has ever asked me about it but I would not mind if they did. Thank you for listening.
I have been a laryngectomee since 1997 and it has never really bothered me to talk about cancer to anyone at any time. If the subject was brought up about cancer and a question asked i would answer it to the best of my ability I have at times gathered up a bunch of kids and bet them that i could hold my breath longer than they could and would then give them a lecture on smoking and show them what happens sometimes if they do smoke I guess what bothers me most about having cancer is I tell members of my family what i think caused my cancer and they continue to smoke like they don't believe me. Maybe i'm wrong but i think that smoking is one of the worst things a person can do and don't hesitate to tell anyone who asks what i think caused my cancer. Being a forum manager on the WW forum site I have tried to answer a lot of questions to the best of my ability and hope I have helped some.
Joe McGoff, Houston, Texas - August, 2013
We all have our on way of dealing with a cancer diagnosis, cancer treatment or surviving cancer. There is no right or wrong way of dealing with cancer, only the way that works for you. Throat & Larynx Cancer, resulting in a partial or complete laryngectomy, does differ in one major way from many other types of cancer. Now every cancer is devastating to the patient, their families and loved ones. However, for me personally, it is difficult to ignore the fact I breathe through a hole in my throat (stoma) and speak with an artificial voice prosthesis (TEP). If I were a survivor of leukemia or lung cancer or breast cancer or any number of other cancers people would never know unless I told them. Again, for me personally, being a cancer survivor is a fact of life and I put it right out front whether in a social situation or a job interview, as they say "it is what it is." I am a volunteer for an organization called CanCare. We provide help, support and identify resources for cancer patients and their caregivers. Volunteers are composed solely of cancer survivors and/or current or former caregivers of cancer patients. The CanCare staff tries and match up cancer patients with a volunteer who has survived the same or similar type cancer. A lot of what we do is listen but we also answer many questions from the cancer patients and/or their caregivers concerning what to expect. Personally my biggest fear after being diagnosed with Stage 4 Throat & Larynx Cancer was fear of the unknown .... during and after chemo and radiation treatments and post surgery. It is during these situations where I mostly speak about my cancer and it does not bother me in the least nor am I uncomfortable or embarrassed by it. In fact it is not only helpful to the cancer patient and their caregivers it is extremely helpful to me as a cancer survivor.
Well, once again I am amazed for a fellow with no voice I still don't know when to shut up! Cheers and Good Luck to All
Ann Buckley, Irmo, South Carolina - September 2012
I was really sick before surgery so I really didn't care what they did to be. Honestly, I just wanted to be better. At first it was really frustrating but I had one person who could read my lips and hear me, my daughter. It seems to me even now that men can't understand me, with the exception of my hubby but thats ok. Now I'm really fine by using my el. I didn't want the other done, I hear too much about problems, so I decided on the el. I'm doing fine now and had a great speech therapist. She was awesome and made me feel human and a woman again. I just thank God everyday for life. We all never know when this rotten cancer might creep back so I enjoy each day to the fullest. Us larys will make it, just believe in yourself, have faith, a good support system and love conquers all. But most of all my strength came from God and I thank Him everyday. Have a blessed day.
Carl Strand, Mystic, CT - Radiation summer of 1991, Surgery February 10, 1993
I made a conscious decision when I was first diagnosed with cancer to involve all the groups I was part of. I found that, for the most part, people were supportive and were very much a part of my successful recovery. Those persons who were uncomfortable dealing with and discussing the issue of cancer were just left alone. I did not push nor get defensive with them.
Maria Taylor, Abington, MA USA - June 2013
It does not bother me at all to talk about it; matter of fact I tell anyone who wants to listen what my doctors have told me why I have it in the first place; due to my cigarettes smoking for 43 years. When I was 19 years old female smoking was not socially accepted in Genoa (Italy) where I lived; I thought not only was it a rebellious move on my part in fighting the establishment but also it made me look sophisticated. We had no idea in 1961 how dangerous was the chosen path we took. Later when we started hearing scary statistics of lung cancer, it did not bother me because ...... I was not inhaling, so I could not be effected by their alarms.
Uncomfortable or embarrassed? ---- No. I am either blessed or cursed by my medical condition, which ever one prefers to believe. On my part I think I am neither .... God must have a reason for me and I just need to find what mission He has for me. It wasn't really something I could control once it came so I am not embarrassed and certainly not uncomfortable because my diversity/difference is a badge of honor for now since I AM A SURVIVOR!!! Breast cancer in 2008 and so far 4 Neck & Head ones since 2011. Planning to ride this train as long as I can.
Terry Duga, Indianapolis, IN - 1997
I have never been particularly shy about discussing my cancer. When people ask about how I speak, I am more than happy to show then my valve and stoma and talk about the prosthesis. (SLP's refer to this as being a "Flasher"). I have found that people are interested in my mode of speech and this can be an ice breaker at times
Bill Cross, California - Oct 2013
No it doesn't bother me to talk about my cancer or say the word cancer. I know some it does very much, they don't want to use the word. The fact is, yes I had cancer. Not too many thought I would survive it. I think only five thought I would and that counts my wife, Doctor, myself and two friends. My father in law drove 300 miles to be there for me and would not leave until I was out of surgery, then he drove back with his Granddaughter, he was 86. I was told my lungs are too bad to do surgery and can't survive radiation. They will do the surgery if I have a laryngectomy so I can breath through the trach. Wasn't too hard of a decision, lose my voice box or die.
There are times it is hard to talk because I need to clean my TEP. Yes if you go to Walmart some people will stare. That is because they just never saw a person who breathes through his neck or pushes the button to talk. I would have to say over 98% of everyone I meet treat me great and no different.
I will say the only time I am uncomfortable is when I have to go to a hospital. Most Doctors and nurses have never seen one and do not know how to treat you. They have no idea how to get me on oxygen, and the very nice pulmonary specialist had no idea how to give me the test and he has been doing it for 35 years. When we talked on the phone the day before I said, you know i'm a neck breather? Answer was yes that is no problem. Well we figured it out when I showed him what adapter I needed.
Tim Perkins - Feb 1, 2013
I'm hitting my two year anniversary this week. I'm a 65-year old American living and working in France, and had my surgery in Toulouse.
Some thoughts about the topic.
Above all, I remain in healthy denial about cancer! I'm one of the lottery losers (the Fickle Finger of Fate) who was in perfect health until polyps on my vocal chords turned bad. And as researchers are now realizing, there is a definite randomness to cancer. Someone like me who never smoked, exercised frequently, ate well, didn't drink too much, and literally, in sixty years, had only been in a hospital for the births of my daughters -- kaboom, kabam -- to get cancer seemed surreal.
So my approach to life has been to treat my laryngectomy like an inconvenience, and to continue working, loving, eating and drinking as if none of this ever happened. No time to feel sorry for myself. No time to spend obsessing about every little or big inconvenience. No time to be embarrassed about having to press my button to talk. As I tell anyone who is interested, "Hey, what am I going to do? It's the hand I was dealt."
And this, I think, is the most important point: If I'm not embarrassed about this, others aren't either.
Every laryngectomee underwent a brutal operation. The doctors did their jobs. We survived. Now it's up to us to move on. Yes, I wish I could still sing, could dive under water, could bend over without feeling as if my stomach was going to empty. But I have also come to realize that some doors closed meaning I need to open some new doors. Instead of running, I hike. Instead of singing, I've taken up the bass guitar. Nothing embarrassing about that.
Yes I had cancer. So what? Anyone reading this is a survivor. There are millions of us, and, thanks to modern medical advances, the percentage of us who do survive continues to increase. I haven't talked with anyone yet who doesn't know someone who has had cancer.
Do I talk about cancer much? Nope. I'm too busy to waste time on that.
Betty Belue - 2005
Hello Everyone, I am not embarrassed when people ask me about my cancer. I would much rather they ask then just stare at me. When they stare at me, this does make me feel uncomfortable. I work in retail so I am stared at quite a bit.
What really bothered me was one day 3 girls (17-20 yrs. old) asked me where something was and when I answered her she started laughing right in my face and choked on her gum. This hurt my feelings real bad, I wanted to slap her, I wanted to cry. I just said to her would you laugh if your mother had cancer? She never apologized or anything. Just kept on laughing, the other 2 just stood there with sorry looks on their faces. This happened last year and I'm still jittery when the younger generation asks a question. Every now and then I get to thinking about it and wonder what I should have done!
Joe Hilsabeck, Edelstein, IL
I don't have any problem talking about my cancer, it is what it is. If someone asks me what happened I will explain what was done and answer any questions. I wear a tube with an hme, do not use a bib or cover as it seems people are more curious as why I have a scarf around my throat, this way they know it is a medical reason. Its never bothered my friends and I don't worry about strangers, if it bothers them its their problem not mine. Maybe I would be more self conscious if had an open stoma they were looking at.
Roger F. Broderick, Indianapolis, IN - August, 2012
After becoming a Lary in August of 2012, in October of 2012 I had a recurrence of cancer at the base of my tongue which needed to be cut out & rebuilt with other body parts. I was fine until the cancer, and ever since.
Yes I was a little embarrassed at first but I had a great speech therapist & eventually began to talk. With therapy & working hard I got better & better. I will be 69 at the end of January and If I am in a loud place I have learned to be a better listener, which my wife appreciates!
My father lived to 97 & lived in his own house with the exception of the last year of his life. My Aunt’s & Uncles have had long lives as well. Until throat cancer I just assumed I would live a good long life & thought I would live forever. So In a strange way cancer has helped me realize I will not be around forever & I should live everyday as if it is going to be my last so I try not to postpone many things.
I emailed a good friend not long ago & told him I was doing pretty well but just talk a little differently now. He emailed back & said Roger you always talked a little differently! I guess that pretty much sums it up for me. I am happy to be alive & try my best to make every day a good day whether I talk funny or not.
Lorna, St. Louis - 2014 (& tonsil cancer in 2007)
Since I’m new to this, I’m kind of torn between talking about the cancer or not. This cancer is usually associated with smoking. I would love to tell people who smoke that this is what can happen to you - so stop smoking. But, that’s not what happened to me. And, this is my second cancer that is typically associated with smoking So, instead, I just tell people I’m tired of taking it on the chin for all the smokers out there. Brutal? Maybe, but it is how I feel.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out