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Finding My Voice: A Laryngectomee’s Story

Posted in Cancer and Current Therapeutics, tagged , , , on May 8, 2016| Leave a Comment »

Finding My Voice: A Laryngectomee’s Story

 

Guest Author: Itzhak Brook MD, MSc, Department of Pediatrics, Georgetown University School of Medicine Washington DC

 

Learning that I have throat cancer shook me to my core.1 As an infectious diseases physician for 35 years with a special interest in head and neck infections, I have had extensive experience in otolaryngological illnesses. However, when I was exposed to new, different, and challenging experiences as a throat cancer patient, I had to deal with these as a patient — not as a physician.

Unfortunately after the cancer was surgically removed and I received local radiation therapy, I had a local recurrence 20 months later. My surgeons were unable to completely remove the tumor using laser and I had to undergo complete removal of my pharynx and larynx (pharyngo-laryngectomy).

I was told by my surgeons that even though I lost my vocal cords there are three potential methods by which I can vocalize again. They explained to me that all the vocal cords do is generate vibrations and the actual phonation of words is done by the tongue and lips. In those who had undergone removal of their larynx vibrations can be generated either by air that is “burped” out from their esophagus (used in “laryngeal speech”); by an external electric vibrator ( called Electro-Larynx) placed on the checks or under the chin, or by a tracheo-esophageal voice prosthesis that connects the trachea with the esophagus. Speaking is possible by diverting the exhaled air through the prosthesis into the esophagus by occluding the stoma. This can be done by sealing it with a finger or by pressing on a special Heat and Moisture Exchange (HME) filter that is worn over the stoma. The filter is inserted into a baseplate housing attached to the skin around the stoma.2 I chose the last method and my surgeons made a hole connecting my trachea and esophagus during my laryngectomy where my speech and language pathologist (SLP) placed the voice.

In the weeks that followed my surgery I gradually began to speak again but soon realized that my new voice was a very weak and rusty and barely resembled my previous one.

Using my voice is difficult and frustrating. I need to exert my respiratory muscles and diaphragm very intensely to force the exhaled air into the voice prosthesis. This makes speaking very tiring and slow. My ability to speak can be interrupted without warning by the sudden accumulation of mucus in the trachea which has to be coughed out. I can also lose my speaking ability if the seal that holds my baseplate in place breaks. When this happens I can no longer force air into the voice prosthesis. Furthermore, I cannot vary my speech to express emotions or alter the intensity of my voice. I often find it frustrating when I am unable to express emotion such as anger, or joy through my voice, and consequently many of my emotions remain bottled up. At times I get angry and loss my temper because of this. 3

I often find it difficult to speak when I need to. This usually happens after I have not been speaking for a while and the voice prosthesis is plugged with mucous. It generally occurs when I wake up in the morning, and sometimes when the phone rings. My family members have become used to it but it creates embarrassing situations where I cannot respond in person or over the phone.

Having a weak voice limits my ability to us my cell phone especially in noisy places. I cannot respond to a call in a busy street or on the train. Even when I use a regular phone in a quite room it is sometimes difficult to understand me. This is very upsetting especially when I call people who are unfamiliar with the quality of my voice. I often experience situations where individuals hang up on me when they cannot understand my voice. When I called a former co worker for the first time after my surgery he hanged up the phone when he heard my voice. He thought that this was a crank call.

After a while I learned to immediately inform the people I talk to over the phone about my weak voice and ask them if they have any difficulty hearing me. If they do, I suggest that if possible they increase the volume of their receiver. This is helpful in some situations. I often do not answer phone calls on my cell phone in noisy places and use my phone much less than before. I am also reluctant to use my house phone and screen the incoming calls to prevent these unpleasant experiences. I also avoid answering calls when I do not want to make the caller aware of my weak voice.

Speaking in noisy restaurants is especially difficult and challenging. I try to look for a quite place and sit close as possible to my companion. In addition to the difficulty I have to eat and speak at the same time, it is hard for me to speak laud enough if the background noise is high. Sometimes I cannot overcome the noise even to order food and have to point out my choices on the menu without speaking.

One of the frustrating aftermaths of having a very weak voice is the difficulty I experience in social gatherings where the background noise is high. I am sometimes reluctant to accept invitations to meetings when I foresee such a problem. I sometimes bring a small microphone and speaker with me, but I found out that even this device does not allow allow me to be audible in noisy locations. I often end up staying silent for the entire event unable to communicate with others except by speaking to their ears or by writing notes on a piece of paper.

I quickly learned that I am no longer able to fully participate and enjoy many social gatherings and events. With the passage of time I got used to my new reality and returned to attend parties, dinners and celebrations, and try to enjoy them to the best of my ability. I realized that avoiding them will keep me and my wife away from friends, and family and will lead to social isolation. I found that other people generally understand and accept my disability and try to communicate with me despite my difficulties.

Participating in conference calls that include multiple participants is also very challenging for me. I noticed that I can be easily ignored by the participants as well as the moderator, when I try to voice my opinion or speak out. A contributing factor is my inability to make others aware of my wish to speak. Even when I speak out it is hard for them I to hear me and since they possess stronger voices, they dominant the conference and I am ignored. To correct this situation I learned to inform the moderator of the conference call ahead of time about my weak voice and ask that all participants turn the volume of their phone speaker higher. Unfortunately, some participants forget to do that, although occasionally a sensitive moderator would turn to me from time to time and asks for my input.

I also find it difficult to participate in conferences and gatherings in large rooms. I try and seat close to the speaker so that I can be heard when I ask questions. I often bring with me a small microphone and speaker system that is of some help. In some lectures I am assisted by the presence of a microphone that is circulated among the audience at the end of the presentation for questions and answers. On one occasion when there was no such microphone available, I none bashfully walked over to the podium and used the speaker’s microphone to ask my question. I realized that I have to be assertive and unashamed if I want to be heard.

The medical students I teach during medical rounds in the hospital quickly learned to listen to me despite my weak voice. I found out that I can communicate with them as long as there number is small and the surroundings are quite. I noted that when there is a group discussion and I wish to speak, the other participants yield to me even more often now than they have done prior to my surgery. Some participants have learned that I wish to speak when I place a finger to occlude my HME. This is why the method of speaking by using a hand operated HME is of greater advantage to me in these settings compared to the hands free HME system. This method requires me to manually place a finger over the HME and signals to other participants that I wish to speak.

In some of the meetings that I attend the participants are very vocal and competitive and strive to speak as much as possible filling up all the allotted time. In these settings I often find myself pushed a side and ignored. I realized that I have to assert myself and compete for my place if I want to be heard. On one occasion I became more and more frustrated and upset as I felt pushed aside by everyone even though I tried to signal my wishes to speak. As I kept failing to be heard the level of my frustration grew to the point that I even wanted to leave the room as a sign of protest. I finally decided to speak up and interrupted the discussion and told the participants that I have something to say and because of my weak voice I want them to pay attention to me when I signal I want to speak. This assertive and direct approach was unusual for me, but seemed to have worked. Since that time I noticed a change in the attitude of the participants of this weekly meeting and even though I sometimes need to wait for my turn to speak, this group has become more attentive to my needs.

Another consequence of having a weak voice is its impact on my lecturing ability. Prior to the laryngectomy I was a very popular and effective public speaker. I gave numerous lectures in the USA and other countries. However, the laryngectomy changed all of this. Even though I had delivered local, national and international lectures, I am often frustrated by the difficulties I experience in their delivery. I always need a microphone, and have to speak slower than before. Lecturing has become more difficult because it takes a greater physical effort for me especially when I have to speak for more than 20 minutes. 4

I am always fearful that the seal of the base plate for my HME (around my neck stoma) will break in the middle of my lecture and I will be embarrassed in front of the audience because I will not be able to continue lecturing. Fortunately that has not happened yet. To prevent it I use a large base plate and glue it very firmly to the skin around the stoma a short time prior to my talk. I always adjust the microphone and speaker system to their maximum. I also hold the microphone very close to my mouth to reduce my vocalization efforts.

Despite these measures delivering the presentations was very challenging. I often became breathless, and felt dizzy after speaking for more than 10 minutes. I was having difficulties regulating and coordinating my breathing with my speaking and often tried to compensate for my weak voice by generating a stronger expiration pressure. This quickly led to breakage of the baseplate’s seal making speaking even more difficult. On one occasion I felt very lightheaded and confused at the end of my presentation and was taken to the emergency room because of observation.

I sought the advice of my SLP how to improve my lecturing ability. I realized that even though I had been a laryngectomee for more than six years, I was never trained how to speak correctly. MY SLP embarked on an intense speaking training course that lasted four month aimed at training me how to speak and lecture. With the assistance of expiratory intra-tracheal air pressure manometer, she trained me to improve my speech. I practiced how to speak slowly generating minimal air pressure (almost whisper), over articulate my words, and inhale air every 4-5 words. It was a difficult and slow process as I had to change the way I spoke before which was rapid and flowing.2 I had to learn how to economize my words, delivering the essentials of each topic using fewer words. Once I mastered these techniques lecturing became much easier. I could speak for a full hour without breaking the base plate’s seal. As I became more proficient with my new skills my self-confidence increased and I no longer dreaded failing in delivering my lecture.

Some of the invitations for lecturing I receive are from organizations that are not aware of my unique voice. Accepting these assignments and delivering the lectures is always a personal challenge and subsequently an accomplishment for me. Delivering the lecture lifts my self-confidence and contribute to the feeling that I am a step forward in the process of my recovery. However, this feeling is always mixed with frustration because I know that I am not as good a speaker as I used to be.

I have wondered for a long time if I will ever be invited to lecture again by those who had heard me. As I started to receive encore invitations, I realized that the message I deliver and the contents of my presentation are more important for those who asked me to return than the quality of my voice. I noticed that my audiences are listening to me more attentively now as compared to the way they did prior to my laryngectomy. I always start my lecture by informing the attendees about my weak voice and explain its origin and how I currently produce my voice. I have been told that after an initial adjustment I am very understandable and people get used to my voice. 4,5

Despite my ability to lecture effectively I have encountered individuals and organizations that stopped or denied me the opportunity to speak because of my weak and whispery voice. I assume that I will no longer be able to be as popular a speaker as I had been before the laryngectomy and when given the choice, organizers will select other individuals who do not have any speaking impairment or deficiencies. The only topics where the organizers may be willing to accept my disability are those where I am the best or only expert in that field.

One area where my impaired speech may be an advantage is when I speak about my experiences as a patient with throat cancer and direct my lecture to either health care providers or to other laryngectomees. I realized this after I was asked to give a grand rounds lecture on this topic by one of my colleagues.

In that presentation I speak as a patient with a potentially fatal illness and described the challenges I face every day. I talked about how my impairment made me extremely vulnerable and how the compassion, empathy, and concern of treating nurses, speech therapists, and physicians could make a positive contribution to their patients’ recovery.

Since that lecture I have given similar talks to medical professionals and laryngectomee support groups across the country. These presentations allow me to share my experiences with medical providers, hoping that they better understand and appreciate what their patients go through. It is my hope that this would improve the care of their patients. I offer suggestions how to improve the patient’s post surgical care.4 This include thoroughly educating the patient and their family about the short and long term medical and social implications of the procedures, greater personal attention by the surgical team that includes spending more time with individual patients, providing patients who wish to be informed with explanations about their medical care and condition, implementing standard techniques by nursing care, and greater vigilance and better communication among staff to avoid medical errors. I stress why surgeons in training should be educated about the proper medical and psychological post surgical care and the special needs of patients after major surgery including those after laryngectomy.

Laryngectomees benefit from my personal experiences and practical advice and also realize that their own experiences, feelings and responses are shared by others. My ability to speak even with rusty and week voice becomes an asset in these setting rather than a liability and is a sign of recovery and sets an example of resilience to other patients.

I feel invigorated by the positive responses to my presentations. I have finally found a new mission that turned my voice weakness into strength and where a whispery voice has the impact of a shout.

 

REFERENCES

  1. Brook I. Neck Cancer- A Physicians’ Personal Experience. Arch Otolaryngol Head Neck Surg. 2009;135:118.
  2. Brook I.: “The Laryngectomee Guide”. ISBN-13: 9781483926940. CreateSpace Publication, Charleston SC. 2013. http://www.entnet.org/content/laryngectomee-guide 3. Brook I. Rediscovering My Voice. JAMA.2009; 302; 981.
  3. My Voice. http://dribrook.blogspot.com/
  4. Brook I. My Voice: A Physician’s Personal Experience with Throat Cancer. ISBN:1-4392-6386-8 CreateSpace Publication, Charleston SC, 2009. http://www.entnet.org/content/ebooks

 

 

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