|Name Of Column
||News & Events
||Smelling Lakes & Tasting Cakes
||Depression Scares Me
|The Speechless Poet
||Len A Hynds
||A Shooting Star
||Prose & Poetry
||More Speaking Out
Have an opinion?
Give us your
I have been giving some thought to the differences in WebWhispers in recent years... not just growing but the differences in the people coming in and what they need of us.
I joined Dutch's site in August 1997 when we had 67 patients signed up and about 20 caregivers, professionals and vendors. Very few people knew anything about computers. We didn't grow up with computers, didn't have them at work and certainly not at home. Many of the new ones coming in did not know how to copy and paste and there was no Google! Many people did not have an SLP and their only contact with one was at the hospital where they had their surgery. If they were one of the few who had the newer voice, TEP, often their doctor ordered the prosthesis. Yet ,the people coming in to join us were more experienced at being a laryngectomy than they were at using a computer. We even decided at one point Dutch should write an article every month with computer hints!
Now, 15 years later, we have many coming in who are experts at using a computer and some have been fortunate enough to have found a good knowledgeable SLP and a local club where they learned from seeing and hearing each other. Others are still new at one or the other but sometimes I am stunned to think that they have their surgery, someone puts a prosthesis in and they never learn to occlude properly or use an AL.
We have new people coming in who have the technology down but are lost on the self care for a laryngectomee. The ones that find us early and check out our website are usually very grateful. This is one reason we want everyone, who can arrange it, to attend a Voice Institute and meet many new people and see the way others talk. The other new ones are people who are long time larys who finally got a computer!
2006 was the 10th year for Dutch and the group that became WebWhispers and was the year he passed away. Many of you never saw the site that Dutch built. That was the year I was supervising the design of a new website for WebWhispers and we introduced it in October. We moved all members to the database and our record keeping got better!
All of this aroused my curiosity so I looked to see how many of the patients were with us in 2006. We still have about 1000 patients who had the surgery before 2006 and about 1150 since then. 67 of you had your surgery in 2012. Class of 2011 has 159 still around, but the years 2008, 9 & 10 have more than 200 each. Makes me wonder if they did more treatments and surgeries of a "partial" type starting in 2011 and reduced the numbers.
Our longest term laryngectomee is still Frances Stack - 1955.
The Epidemic of HPV-Associated Oropharyngeal Cancer
Kristina R. Dahlstrom, M.S., and Erich M. Sturgis, M.D., M.P.H.
Departments of Head and Neck Surgery (KRD,EMS) and Epidemiology (EMS),
The University of Texas M.D. Anderson Cancer Center, Houston, TX.
Significant site admixture occurs in the annual U.S. “Cancer Statistics“ overview where all subsites of pharyngeal cancer are listed as a single site, “pharynx“ (including not only oropharyngeal cancers but hypopharyngeal and nasopharyngeal cancers) and where base of tongue (lingual tonsil or oropharyngeal tongue) cancers are often listed collectively with oral (mobile or oral cavity) tongue cancers as the generic site, “tongue“.(Jemal 2010; SEER website) Regardless of these site admixtures and without consideration of a growing and aging U.S. population there is an increasing number of both pharyngeal and tongue cancers (approximately 13,000 and 11,000, respectively in 2010).(Sturgis 2007; Jemal 2010) As early as 2005, a conflict in the trends in age-adjusted incidence rates was noted with increasing/stagnate rates for tongue and oropharyngeal cancer but significantly decreasing rates for laryngeal, hypopharyngeal, and oral cavity cancer.(Carvalho 2005; SEER website) With more careful site stratification, it has become apparent that oropharyngeal cancer age-adjusted incidence is rising dramatically (225% from 1988 to 2004) in the U.S. while oral cavity cancer incidence is falling (approximately -50% from 1988 to 2004 ).(Chaturvedi 2011) Furthermore, the increase in oropharyngeal cancer incidence for the most part appears primarily to be represented by middle-aged (40-59 years) white men.(Chaturvedi 2008) Notebly, these trends among white men have completely eliminated the dramatic racial disparity that existed in oral cavity/pharyngeal cancer incidence.(SEER website)
Following the Surgeon General’s Warning and mounting evidence of the association between tobacco and cancer, per capita tobacco consumption and cigarette current smoking prevalence rates have declined relatively consistently since the mid 1960s.(Giovino 2007; Sturgis 2007) In 1965, more than half of men and one third of women in the U.S. were actively smoking and presently less than a quarter of men and less than one fifth of women currently smoke.(Giovino 2007) As might be expected for diseases with a long initiation associated with chronic tobacco exposure, the primary public health goal of reducing lung cancer (as well as laryngeal, oral cavity, and hypopharyngeal cancer) incidence did not begin to occur until the late 1980s.(Sturgis 2007; SEER website) However, during this same period oropharyngeal cancer incidence initially plateaued and subsequently rose dramtically.(Carvalho 2005; Sturgis 2007; SEER website; Chaturvedi 2008) These complex trends in oropharyngeal cancer incidence are consistent with the decline of one etiologic exposure (smoking) but during the same period the emergence of a second unrelated etiologic exposure.
Approximately 7% of the U.S. population are infected with oral HPV with men being 3 times more likely to be infected than women.(Gillison 2012) Several lines of evidence have established the oncologic potential of HPV, and since the early 1990s HPV DNA has been consistently identified in many head and neck cancers.(Schwartz 1998; Gillison 2000; Mork 2001; Dsouza 2007; Gillison 2008; Smith 2004) A systematic review and meta-analysis have confirmed that the oropharynx is the principal head and neck site involved and that HPV type 16 accounts for more than 90% of positive cases.(Kreimer 2005; Hobbs 2006) Cohorts composed of patients chiefly from the 1990s had reported HPV prevalence rates of approximately 50%, while more recent reports were in the 70-80% range.(Kreimer 2005; Hobbs 2006; Ernster 2007; Dsouza 2007; Ji 2008; Nasman 2009; Attner 2010; Hong 2010)
Numerous case series have also established that HPV-positive oropharyngeal cancers have unique demographic and behavioural characteristics. HPV-positive oropharyngeal cancer patients tend to be middle-aged white men, to be of higher socioeconomic status, and to be nonsmokers and nondrinkers.(Dsouza 2010; Gillison 2008; Ji 2008; Guan 2010; Settle 2009; Dahlstrom 2010) However, sexual behaviors do appear to be associated with this disease, and HPV-positive oropharyngeal cancer patients as a group have a higher number of sexual partners, and in particular, oral sexual partners.(Dahlstrom 2010; Dsouza 2007; Gillison 2008; Heck 2010; Dsouza 2010) HPV-positive oropharyngeal cancers tend to occur in either the tonsils or base of tongue rather than other oropharyngeal subsites, and they often have non-keratinizing histologies, including basaloid, lymphoepithelial, or poorly differentiated.(Marur 2010) Finally, these patients usually present for medical care because of nodal metastases and after initial evaluation found to have small primaries with multiple positive nodes.(Marur 2010)
Several population level trends support HPV as the cause of the national increase in oropharyngeal cancer incidence. Firstly, the increasing incidence appears greatest among the middle-aged white male population.(Chaturvedi 2008) While many behavioral researchers have suggested that oral sex prevalence has risen over the past 3 decades, reliable data on such national trends is lacking. However, it is clear that smoking prevalence has dropped over this time period and, as expected, tobacco-associated malignancies have subsequently declined in incidence with a notable exception being oropharyngeal cancer.(Sturgis 2007; Chaturvedi 2008; SEER website; Licitra 2008; Mork 2010; Auluck 2010) And more specifically, it appears that the increasing incidence is restricted to the oropharyngeal subsites that tend to be HPV-positive (tonsils and base of tongue).(Mehta 2010) National trends also reveal a rising proportion of higher-grade tumors for cancers of the tongue and tonsil but not of other sites.(Mehta 2010) Additionally, in recent years a greater proportion of oropharyngeal cancer patients are presenting with regional rather than localized disease.(Carvalho 2005) Most importantly, several groups have shown within population-based registries a dramatic increase in HPV-positive oropharyngeal cancer among archived tumor specimens over time.(Ernster 2007; Nasman 2009; Attner 2010; Hong 2010; Chaturvedi 2011) Taken together the findings within case series and these national epidemiologic trends support the assertion that the U.S. is experiencing an epidemic of HPV-associated oropharyngeal cancers, in direct opposition to declining incidence of tobacco-associated cancers. Current HPV preventive vaccines are now available that may prevent oropharyngeal HPV infection and subsequent oropharyngeal cancers. These vaccines have recently received Centers for Disease Control and Prevention (CDC) recommendation for routine use in boys; however vaccination rates remain low among the U.S. population. (CDC 2011) Unfortunately, there is not a clinically applicable equivalent to the routine cervical Pap test available for detecting oropharyngeal premaligncy or early cancer screening.
References: there are 11 pages of references, which will be sent email to requests in FEEDBACK
It strikes like a lightening blot. It knocks you to your knees. It takes your breath away.
Depression weighs on you. It pulls you with an iron grip into a pitch black bottomless pit of despair.
Obsessive thoughts play in a loop of destruction – over and over and over, no rest, no peace - wrenching all hope from your grasp, destroying any sense of self esteem, beating you down – It must be your fault. It’s all you. You are to blame.
Anxiety and fear are constant companions.
Tears and heartache are never ending.
Each day is a little darker – no joy, no desire, no love, no life, NO HOPE.
Life is not worth living.
Don’t want this struggle any more.
So very tired, incredible weary…Just want to let go.
God help me - Just let go.
Resolve finds a foothold, refusal to surrender.
Friends, family, doctors, therapists, medication - love stops the downward decent, offers a life line, a hand up, a way back, HOPE.
Finding the courage to change – to let it go - shows you the way.
Slowly, ever so slowly - Acceptance is the pathway to peace.
On Smelling Lakes and Tasting Cakes
“But when from a long-distant past nothing subsists, after the people are dead, after the things are broken and scattered, taste and smell alone, more fragile but more enduring, more unsubstantial, more persistent, more faithful, remain poised a long time, like souls, remembering, waiting, hoping, amid the ruins of all the rest; and bear unflinchingly, in the tiny and almost impalpable drop of their essence, the vast structure of recollection.”
Marcel Proust ~ Remembrance of Things Past~
Proust is beautifully intricate, elegantly crafted and, let’s face it – dense. The madeleines which provoked this passion are light little cakes, undeniably French. They require a special tin and a bit more finesse than your average sweet treat. Not surprisingly, no one has ever written a seven volume tome about coming of age in America which memorably features a passage about a chocolate chip cookie.
Still, I love the way he describes the hold that smell and taste have on us. That I understand. I am not a laryngectomee, but I might as well be. Radiation fried my vocal cords and my trachea into a prize-fighter’s cauliflower ear mess of scar tissue. I breathe only through my trach. It took several years before I could even tolerate my beloved pesto - many favorite tastes were distorted for a while. I still don’t have the palate I used to, but I do okay.
Smell is another matter. That I miss. I have to be downwind of anything before I catch it easily and that whole snort/gulp thing they teach us to do I find annoying, except under duress. It has its advantages, I suppose. Changing the latest grand-daughter’s diapers are not the “stinky poo-poo” that her three year old sister seems to delight in announcing. Plus living in rural Maine, most of us get accustomed to the smell of skunk - either dead on the road or pissed off out by the garage. The wind has to be just right for me to catch that pungent scent.
A friend who knows of my frustration with this predicament, told me of a book she is reading called “Season to Taste: How I Lost My Sense of Smell and Found My Way”, by Molly Birnbaum. The author, a young aspiring chef, was hit by a car and suffered terrible injuries. As a result she lost her sense of smell, derailing her career plans. She eventually got back on track and this chronicle of her journey apparently reveals some fascinating details about our sense of smell.
For those of us in the lary community who love to cook, whether professionally or as a pleasurable necessity, having a diminished sense of smell and distorted sense of taste can really seem like adding insult to injury. During the first three years after my treatments, when I was nearly incapacitated by side effects, I watched a lot of television. The Food Channel was new at the time and I was hooked. I couldn’t afford or even eat much of what they were making, but I ate and cooked vicariously and learned a whole lot about what elevates a dish from good to great. When I finally started to get back on my feet and back into the kitchen, the results of my three years at the Food Channel Culinary Institute were immediately evident. I had learned to think about how flavors and textures worked together, to not go just on my own habits and senses. Even today, frequently when I make something, I am not able to pick out the distinct and varied flavors that make up a dish. I know it tastes good, but others can pick up on those subtle notes of lemon or herb that I know are there because I put them there knowing they would play nice.
The sense of smell is not just about food, of course. I remember the first time I went back out on a boat after everything. An old friend has a place on a beautiful lake here in Maine where I have spent many, many days over the years. It is a magical spot and I have treasured memories of that lake and that camp (that’s what Maine folks call a seasonal cottage). We gently tooled around the lake at dusk and I was just enjoying the feel of the breeze on my face and the beauty of that spot, when as we rounded the tip of Blueberry Island, I caught the distinctive whiff of Maine woods, of balsam and pine needles, of the sweet clean smell of the lake and I nearly cried. I made Peter motor around the island again, while I held my nose to the breeze, like a dog with her head out a car window, and drank in the smell of summer in Maine on a lake.
I hadn’t seen Peter for several years but went back out to the camp yesterday for a long overdue visit. He was out when I arrived so I just wandered around, taking in the familiar sights and smells, noting the changes and delighting in those dear things which stayed the same. I had forgotten just how much I loved it out there. I will go up again next week and bring food and cook for him just like I did those many years ago. He has a very refined palate, so it will be a joy to watch him as he savors each bite, commenting on this or that, knowing that I know it’s there even if I can’t taste it.
And lo and behold, as I was leaving he went to his workshop and came back with a bag of treats. His step-daughter works for a very high-end importer of specialty foods in NYC and in the bag, nestled in with the Italian pasta and French pralines was a bag of St. Michel Madeleines, Recette de Commercy au chocolat. I did wait until I got home before I savored one; my first ever, actually. It was pretty amazing. I may have to buy that tin and make some myself. But for now, I think another one is in order as I give thanks for old friends, the smell of a lake and the taste of a petite gateau.
Talk to us about depression that you faced as you approached or dealt with a life altering event.
What did you find that helped you through it?
We have had an amazing response to this month’s question about depression. Unfortunately, all too many of us have struggled with it at one time or another. We would like to thank all of you for your thoughtful and honest comments. It is not always easy to write so openly about such personal matters. Our hearts go out to those in our lary family who still battle this awful condition and hope that perhaps you may take some comfort in knowing that you are not alone and possibly even learn about something that could help you feel better. WebWhispers was created for just this purpose: to educate and support.
~The Speaking Out Team~
Terry Duga - 1995
I had depression after going through radiation. I talked with my Doctor and he put me on Prozac, which helped. It does not make you feel "good" but it evens the playing field so you can cope better. I take antidepressants still but the Prozac was a godsend at that time.
If you are depressed, get help. There is no reason to suffer alone.
Pamela OLeary - 2011
I am a long time depression person; been taking anti-depression medication for several decades now - with some off time. I have tried to go off them, but it doesn't work well for me. I have had several bouts of calamity with the cancer recurring, but, amazingly, doing well with the depression.
Initially, it was a bummer, but I thought radiation would be ok, the ENT said having throat cancer was one of the better diagnoses. It was localized in one spot, etc. That was when it was on my epiglottis. I proceeded to radiation with a good prognosis. I didn't realize the side effects and how difficult they were to deal with. A side effect of antidepressants is dry mouth - very dry mouth. Yet, the dry mouth caused by the anti depressants was nothing compared to the dry mouth caused by radiation.
Everything was fine for a few months, then I called the ENT, moving an appointment up because something was wrong. He referred my to a surgeon. There was a possibility they could do a partial laryngectomy. I couldn't sleep for the 2 weeks leading up to the surgery. I figured that if I couldn't talk, then I couldn't work. I went in for that surgery, cried silenty several evenings but went on.
When I started speaking with the TEP, I became the model patient. A great speaker and quick recovery. Everything was fine for several months. In February, this year, I went to the dentist and then the ENT with a terrible pain in the left side emanating as an ear-ache. Now I cry. I am out of work - the place where I meet people. I am primarily out of work because I cannot talk anymore. It took 3 months of daily pain, living on ibuprophen and 3 visits to the emergency room before they figured out the cancer had returned. I cried frequently, but am accepting I have less than 18 months to live, even with chemo and radiation. Now that I am accepting the diagnosis, I am crying less. Except when I think of the things I wish I had done when I had the health. I can speak, but build up mucus so frequently that my prosthesis gets blocked if I am not speaking continuously. So I speak infrequently.
Marlene Haynes - 1996
I would like to add my experience with depression, after my surgery. I was alone and deeply depressed. I would not leave my house and refused to use the electrolarynx because I did not want anyone to hear me with (what I called) that silly sounding device.
My radiation treatments were at the same hospital where there was a support group and they had been calling and calling me trying to get me to come. One day after my treatment I stopped by there and I met my Sarah, who was the president of the support group and also turned out to be my dearest friend.
She just looked at me and knew what I was suffering, she took me under her wing and soon we were visiting in each others home. One day she said,
"Marlene do you knit or crochet?" (she was an excellent crocheter). I said, "I used to crochet."
She asked, "Do you sew?" I said, "Oh, I have not sewn in years."
Then, "Do you like flowers?" I answered, "I dearly love flowers."
"Do you love your children?" I answered "Yes, of course, I love my children."
She said, get you some crochet thread or yarn and make something for your house, get that sewing machine out and make yourself a dress or gown, go out and plant a flower garden, and call your children and tell them you love them.....
I took Sarah's advice and soon I was so busy I had no time at all to wallow in my self pity, I crocheted a queen size bedspread, I made several house dresses, I planted roses and flowers and even trees on all four sides of my house and started a house plant garden, I learned to use my electrolarynx so I could call my children (all out of state) and tell them I love them, they all understood me too :)
I use my Sarah's advice to this day, I stay busy all the time. What a wonderful gift she gave me.
Linda Bohart - 2012
I had severe depression, cried all the time about everything but I sought professional help and they perscribed a anti-depressant and I am feeling better everyday. I get up everyday and I'm so glad that I am alive to live the rest of my story!!
Smile it's a Wonderful Day!!
Lynn Foti, Akron, OH - May 2009
It is hard to admit that you experience profound depression. I was diagnosed with stage 4 throat cancer in April of 2008. At the time, I was separated from my husband and although had a decent job, I had no insurance (which was a lot of the reason it got so bad, I tried getting help for a prolonged sore throat, but couldn't afford the specialist's fees).
Once I was diagnosed I was immediately put in the hospital; treatment started right away. The first thing they did was pull all of my teeth because the radiation doctor said it had to be done. My teeth were actually in good shape, but she said there was a gum disease that would kill me if I did treatment with it. That was VERY depressing, as I had no insurance, it was done at a dental clinic, I was awake during the entire thing. AWFUL!! Soon after that chemo and radiation was started. I was not getting much information about my cancer, and had no computer or Internet access to research it. The treatment was brutal, and I could no longer go to work, extreme fatigue and hair loss, nausea, and an awful burn on my neck prevented me from keeping my job. I just never felt any better and nearly a year later was told the cancer was either back, or still there.
I was sent to Cleveland because no ENTs in Akron could do the lary surgery. The day I went to visit the ENT in Cleveland, I lost consciousness and had to have an emergency tracheotomy. I woke up 3 days later in ICU not remembering anything about it. What had happened was my esophagus had been so badly damaged that I was drowning and could not breathe. About 10 days after that, the lary surgery; and two weeks later an esophageal replacement with my inner forearm, skin, vein and and artery. Needless to say, I was reeling from it all and it had happened so quickly I really had no time to digest the entire thing.
At the hospital, I was told there were support groups in the area and given a list. My niece called every one of them and they had all been disbanded so I really never got to know what the heck was going on! My doctors were great, but had very little to tell me about how to live this way. I became very depressed and didn't want to go out of the house. I couldn't eat or drink and had to use a peg tube for nutrition. I couldn't make a sound and was fearful of something happening and not being able to call for help. That made it even worse. I just started praying for help of some kind. Finally I was able to drink and eat, and was given the TEP and prosthesis which made life so much easier. My son was there to support me, but he didn't know much about being a lary either, he just did his best to be there for me. Just when I was sure I could never live this way, an old friend gave me her old laptop computer. My SLP told me about WebWhispers and I got in touch immediately. I have gotten so much better since then. Physically and emotionally, just finding this group has made all the difference, helped so much. I thank God for WebWhispers, and all of the members of this wonderful group.
Sorry this was so long, but there is a lot to say about it. Now I have found my new normal that everyone talked about, life is good again; although it isn't the same, it is fine. I am grateful and blessed in so many ways.
Thank you all, my son, and God.
Mohan Raj, Bangalore - Mar 2010
When the Biopsy result showed positive for Malignancy it was indeed shattering.First reaction was to refuse treatment, come what may. As the pros and cons of such a decision sank in, slowly, I measured up to it. I Googled and found that survival rate for Laryngeal Cancer is about the best. That was uplifting. From Google I also came to know about WebWhispers. Became a member and read every thing that I needed to know which no Doctor could have told me in such detail and clarity.
I became very confident. That attitude helped. Recovery from surgery was faster and better.
Thanks to WebWhispers I had a clear idea of what to expect post surgery. Even the surgeon was amazed that I did not keep asking the usual questions most people ask about "after Laryngectomy".
Knowledge is power and more so when it comes to Laryngectomy surgery. Surgeons world over should advise all patients to read through WebWhispers library before they lie down on the operation table. That is the best medicine to deal with depression.
Jack Craig - July 1997
After my operation, and while I was still in the hospital, I tried to think of ways to commit suicide. After I was out of the hospital I purchased a flexible drier vent hose, a roll of duct tape, and carried them in my pickup. I was going to connect one end of the vent pipe to my exhaust pipe and run the other end to the rear window of the cab.
I looked for two years for a place that would provide me with privacy and away from people. It took me two years to find that spot, but right after I did the doctors told me that I had gone over two years since the operation and the chances were good that the cancer would not return. I went out and purchased a new pickup, threw the vent hose and duct tape away and went to my first post op lary meeting.
Time does work wonders.
Peter Powell, NY City - Dec 2010
I spoke with my PCP about the serious bout of depression . He suggested I begin a starting dose of Prozac, explaining that it works in a way that takes away the feeling of half empty and goes to half full. I also went to a knowledgeable psychiatrist who specializes in cancer patients in all stages. He is part of the extended help that is offered at Beth Israel Med Center In NYC. He also recommended the Prozac. I also found that in the test for Thyroid , that It was a very low output of the necessary hormone so also went on Thyroid meds daily. This combination took time, several months to level off. It did, in my case. I also found an interesting meditation group in my church, and have been meditating twice daily, most days. This "centering" that the meditation does has a positive effect.
Bob Keiningham, Broken Arrow, OK - 2008
In the spring of 2008 I became angry and depressed as my body was progressively getting weaker by the day, my voice was constantly hoarse, breathing was difficult and I coughed myself to sleep each night. My doctor diagnosed the condition as a product of scar tissue from radiation and surgery done on my left vocal chord two years before, and concluded that nothing could be done other than drink lots of fluids and try not to talk much.
By early August I could barely walk and merely dressing myself exhausted me. That's when a son-in-law saw Dr. Zeitels of Mass General in Boston being interviewed on TV about his work with singers and entertainers who exhibited my symptoms. I e-mailed the Doctor that evening and one week later we were in Boston where his examination revealed massive cancer on my Larynx. When he described the operation needed, I decided to have it back home.
Six hours of surgery by Dr. Medina at Oklahoma University Medical center occurred on September 18, 2008. I awoke with no voice but able to breathe deeply for the first time in months and could actually feel my strength returning as I lay there writing notes to my family about how wonderful it was!
I started walking the next day and haven't stopped since ... went home the fourth day, played nine holes of golf two weeks later ... got my TEP installed by a wonderful gal (Tracy Grammer) about then and began talking within minutes ... and sailed into life as a Lary with a new appreciation for life in any form!
Mucus, TEP replacements, people who stare, and all the other stuff that tries to bother us just doesn't stand a chance against the fact that I am alive when I could be dead, and at age seventy-seven I can still get around my golf course with buddies and enjoy my God, my family and my friends with these extra days I've been given.
Sure, I know there's a day not so far away when things won't work out. My heart goes out to WW members whose experience is so much worse than mine and my fondest wish is that I find the strength they exhibit when that time comes ... but in the meantime, I simply don't have time ... to let sadness or depression into this wonderful extension of my time here that modern medical science and my "team" have provided me.
Len Hynds, Ashford Kent England - 2004
I had secretly suspected the worst before being told that I had cancer of the throat, but it still came as a shock with the realisation that I would possibly die, as people with cancer normally did. My wife Tilly was the first person I told, and I think she had been fearing this news, and had been thinking what effect it would have on me. After a few tears she became quite adamant in trying to convince me that I would be a survivor. I knew that we were trying to support each other in this dreadful drepression that we were trying to hide, in both giving confidence to the other, upon the eventual outcome.
The result on family and friends, whilst showing a brave face, but secretly making arrangements for a sudden unscheduled departure, was varied in many ways. Family took my stance as a lead, but acquaintances were embarrassed and didn't know what to say. I called my staff together, and told them the news, and there was a stunned silence. I told them that I was preparing my departure to make life as easy as possible for Tilly ,and I was giving the company to the two longest serving members, and I knew everybody would still work as a team.The company had no debts, and there was sufficient cash to continue to purchase stock.
I wrote to the Inland Revenue, putting my own tax in order, six months before due, explaining the situation, and after a week I received a letter from the top man saying how sorry he was, and saying in my personal tax I owed nothing, and in fact sent me a cheque for £200. That I had over-paid was not possible. It was many years later that I discovered that the day he received my letter he had just been told that he had terminal cancer himself and died within a matter of weeks.
I survived, but learnt so many things, that we survivors are so very lucky and one in every twenty five thousand of the world's population will suffer from cancer of the throat, and as survivors we have so much to be thankful for.
David Blevins, VB,VA -1998
I frequently send new laryngectomees (and loved ones) an email. This is what it says about depression:
"It is fairly typical to also "'mourn' the loss of our voices, and it takes awhile to get over the trauma of all of this. And mourning is perfectly ok, it is also part of the healing process. You might need some professional help to deal with the understandable depression this may cause. But do know that there is life, and a full one, on the other side of this healing process.
Families of those facing cancer also can suffer and require counseling help."
The IAL News two page "Notebook" section from the May 2002 issue deals with the issue--"Laryngectomee and Depression." I think it is timeless. That issue is not currently on the IAL web site, but will be. In the meantime I would be happy to send a copy of that article in the PDF format to anyone interested.
DEPRESSION SCARES ME!
This month’s request for our experiences with depression from WW's "Speaking Out" team led to an interesting personal revelation that I thought might be a good topic my column. Simply put, I discovered that I'm more scared of depression than I am about all the things that might cause me to become depressed! It's true! Somewhere along my way I seem to have decided that it was a frame of mind that promoted failure far beyond any of the obstacles life put in my way. That decision quickened my brain to recognize the early signs of depression and fear them more than any problem or worry that might allow depression to take over my life.
In my column of September of 2011, http://webwhispers.org/news/sep2011.asp I wrote that our most limited and our most unlimited resources were first, the 1440 minutes of time we all receive each day, and second, the freedom to think about anything we choose to think about anytime we choose to think about it regardless of our circumstances.
As I answered the question about depression I discovered a genuine and lasting personal fear of wasting either of those two precious resources by allowing myself to slip into what my dictionary defines as a "low state of mental or physical activity, or an attitude of dejection". In other words, I've become so scared of depression as to put aside all else when I sense its presence slipping into my life and do something, even if I do it wrong. Actually it doesn't seem to matter what I do or how I do it. I just mentally and physically get up, get out, and get going on something (almost anything!) until that creepy feeling of lethargy and hopelessness is defeated.
I've done a lot of silly things to address that fear, and I'll do some more in the future because I'm terrified of the handcuffs depression brings with it and I've learned how to avoid putting them on,
A SHOOTING STAR
A shooting star which sparkles white,
which trails so far across the night.
I dare not ask, why it is there,
just marvel, and in wonder stare.
Our head and eyes, are drawn to earth,
we rarely gaze on heaven’s worth,
those million stars that fill our sky,
in galaxies above so high.
Yet some have looked, beyond our moon,
wanting to journey, all too soon,
to go beyond our atmosphere,
those astronauts that have no fear.
Glimpsed perhaps as a shooting star,
could it be others, from a planet far,
as they descend, a burning pyre,
their rocket ship a raging fire.
If that be so, what creatures there,
falling, as we stand and stare.
Are they the same, as you or I,
from distant planets in the sky?
Now of course, we will never know,
as dust they fall upon our snow.
But one day, a star will land,
and offer us our cousin’s hand.
P.S. from SPEAKING OUT STAFF
I don't usually contribute to Speaking Out since I'm the one asking the question and some could possibly misconstrue my intent as an attempt to somehow skew the responses. But I do, on occasions, submit other items that may be considered in support of a "Speaking Out", or vice versa I may submit something as a result of the "Speaking Out" responses. With that caveat stated I would like to make an exception this time and respond to my own question.
Jack Henslee - Classes of 1979, 1988, 1995
I have had "throat cancer" 3 times! The first time was a shocker since I was only 34, well below the average age of 60+. But I was young and arrogant and well prepared in my mind to not only fight this but to beat it as well. I ended up with only a partial laryngectomy (lost one chord) and could still speak very well but not as loud. Plus, and this was a big plus, no stoma!
Nine years later I had a recurrence and that resulted in a total laryngectomy. I met with the tumor board and discussed the options before deciding on the total. I was also offered the opportunity to meet with another laryngectomy for a post op discussion. I declined...didn't need any nonprofessional help or sympathy.
After the surgery I was again offered a post op visit from a laryngectomee, and again I declined. I felt I fully understood everything and could accomplish whatever I needed to do on my own. I had my wife drive to Sacramento to pick up my free AT&T electro larynx because I wouldn't wait for it to be mailed. I was determined to talk "yesterday!" She wasn't very happy.
My ego was devastated! I could not be understood no matter how hard I tried...and I worked very hard. Finally I agreed to a Lary visit and in 2 minutes, he explained that the problem was swelling in the neck and it should subside..just give it time! That worked and I was soon talking and on a quest for esophageal speech. That took another 6 months of extreme frustration but the mission was finally accomplished and I was well on my way to recovery.
What does all this have to do with depression? Well for years, almost 25 now, I have been asked many times if I had been depressed. I have always said, without a doubt,.....NO! I was extremely angry with myself for a long time because I didn't meet the standards or expectations I expected/demanded of myself, but I was never depressed!
But then recently someone very close to me casually pointed out that in many cases depression is actually expressed as anger. It doesn't have to be just tears, fatigue, lost ambition or loss of esteem. Wow, that sounded pretty familiar! In some cases that depressive anger can be a good thing. I think it was for me!
I think my depression/anger kind of culminated when I wrote my first poem, "Sounds of Silence." That's when I tried to express what had happened to me and in my way I described the stages I went through.
The Sounds of Silence by Jack Henslee
An ominous cancer raged within the darkness.
Yesterdays sun that caressed and nurtured life
Was but a distant memory lost.
A storm of despair and fear was conceived in fury
As I prepared for the sounds of silence.
The lightning struck as a surgeons knife.
Destruction was swift and final
To flesh, and dreams of future life.
Thoughts of rising from the pain and fear
Were thunderous sounds of silence.
The terror of death subsided in the eye,
Replaced with self pity and surrender.
An exodus of pride and dreams
Bred malignant tumors of apathy in the mind,
As I accepted the sounds of silence.
It was easy to forsake confidence
Then slip into the shadows of the tempest.
Yesterdays dreams became thoughts of failure
As lost ambition poisoned the mind and soul.
Despair and pain were born from the sounds of silence.
The light struggled through slowly at first,
Just enough to reflect some silver in the clouds.
As rays of hope melted the indifference
Particles of esteem and self worth fused together,
Like a laser attacking the sounds of silence.
A vibrant rainbow embraced the passing storm.
Powered by the music of children’s laughter,
Supported by love, faith and encouragement.
It lights the gateway to the impossible dream,
A challenge is issued to the sounds of silence.
Dawn brings a new day, a new life,
Like ivory swans rising on thermals of promise.
Successes path will be lined with failures thorns,
But roses will blossom every few miles.
Victory is certain over the sounds of silence.
Today is a kaleidoscope of love and life,
Filled with opportunity and rewards of endless vision.
I no longer cringe and hide from the pain of silence,
The quest for speech once lost is fulfilled.
Only a distant memory remains of the sounds of silence.
I agree with Jack and usually do not put messages in Speaking Out, except as a P.S. with some comments and an article from the past that applies.
Pat Sanders - 1994 (Breast Cancer) & 1995 (Larynx Cancer)
Waiting to hear test news is hard for me and the feelings of dread are like a black cloud that settles like a weight over everything I do. Once a diagnosis has been reached, acceptance is fast. In the early years after my cancers, there were various times I waited to know test results and I was nearly useless. Then, if the news was bad, I would cry myself to sleep and get up the next morning with acceptance, pull on my stompin' boots and start planning, ready to take on the battle for my life and health.
After my laryngectomy surgery, I was almost giddy with relief to have made it to the rehab stage. But then I began to have fatigue. I wasn't just tired, I was exhausted, and it kept getting worse. I couldn't even think straight. When I told my cancer docs, they said... look what you have been through! I went to my doc for my regular checkup and blood tests, expecting him to tell me what was wrong. Instead, he said, your blood tests are great, you are healing well, and picked up his things and walked to the door, saying, see you in 6 months. I called to him and, as he stood there looking back at me, I started to cry as I tried to tell him that I was so tired I couldn't do anything... that I was miserable. I told him, "I am not me!" HIs reaction was to say immediately that he was going to send the nurse in for more blood to run a thyroid test (not part of the other regular blood tests!). He knew immediately that I was hypothyroid.
They told me that it would take about 3 weeks to steady out... but in 3 days, I could feel a slight difference, a lighter spirit, an alertness that had begun to come back. My small dose was doubled with the next test and has stayed the same through all these years.
I wanted to share with you that depression is not always emotional or mental. It can be physical. For me it was a return to being ME, with a small yellow pill every morning that let my body recover what it had lost with the damage to my thyroid. We check my thyroid every year in addition to the regular blood tests.
Please have yours checked regularly.
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