As an infectious diseases physician with a special interest in head and neck infections, I had extensive experience in otolaryngological illnesses. However, when I was exposed to new, different, and challenging experiences as a neck cancer patient, I had to deal with these as a patient — not as a physician. I endured the consequences of radiation, repeated surgeries, and prolonged hospitalizations. I confronted medical errors in my care, discrimination following loss of my vocal cords, and the hardships of regaining my ability to speak.
Perhaps most importantly, I struggled to find a new meaning to my life.
Facing the diagnosis of hypo-pharyngeal carcinoma shook me to my core. I had to accept that I am not invincible, and that my life has an end. Even though the small cancer was surgically removed and I received local radiation, a recurrence two years later necessitated laryngectomy.
I encountered two types of physicians: the optimists who saw the cup half full and the pessimists who saw it half empty. I preferred those who told me the truth about the risks, potential complications, and prognosis, even when those predictions were not rosy. This is the best way one can make an educated decision about the best treatment.
Following my laryngectomy, I endured pain, weakness, the effects of narcotics, inability to eat or drink, and of course, inability to speak. I was rendered completely dependent, staying connected to an intravenous line, needing humidified, oxygenated air and constant suctioning to relieve sudden airway obstruction. All of this was an extraordinarily difficult adjustment. I understood for the first time why some patients elect to avoid heroic measures to prolong their lives, especially when their prognosis is poor.
Receiving empathetic and supportive care by the medical staff was extremely important to me. Surgeons can be impatient, rushing, and in a hurry to finish rounds, especially when they have surgeries scheduled. Most senior surgeons and many of the residents were, however, caring attentive and compassionate. I also encountered abrasive and rude physicians. On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly complied but did it not using a sterile technique and flushed the tube using tap water. The tube he wanted to place back was still dirty, and when I asked him to clean it better, he abrasively responded: “We call the shots here,” and left my room. I felt humiliated, helpless and angry being treated in this fashion.
Physicians need to realize how helpless and dependant their post surgical mute laryngectomees are. They require more patience and time to communicate their thoughts, questions and concerns. Their inability to speak is a very stressful and unfamiliar reality. It requires patience and support, from the medical team. Patients should be encouraged and allowed to fully express their feelings and concerns. This may be a slow and tedious process as they often need to communicate by writing. The emotional well being of the patient is a very important element of the post surgical care and ultimate recovery and adaptation to a life as a laryngectomee.
Life after laryngectomy was different and difficult, as I had to deal with new practical problems like re-learning how to eat and speak and return to a productive life. Moreover, I also confronted a difficult emotional obstacle: the constant fear that the cancer may return.
I had to continuously deal with the feeling of depression and hopelessness. Feeling depressed was surprisingly helpful when I initially faced the gloomy prospect of pending surgeries and uncertain future. It helped me to accept the potentially poor outcome. Yet I did not feel immediate depression after the surgeries because I was focused on my current situation and determined to get better. The depression, however, recurred as I had to deal with my new reality and limitations. This was enhanced by the hypothyroidism and post surgical anemia I developed.
I was determined to cope with my depression by gradually getting re-involved in professional and other activities that I had always enjoyed, including teaching, writing and even lecturing. These were instrumental in enabling me to feel better. The support of my family, a devoted social worker, responsive and caring speech and language pathologist and otolaryngologist , and members of the local support group were invaluable. However, I realized that depression can return and I will have to continuously keep it at bay.
My experiences as a patient greatly affected my approach to my patients and made me more sensitive and understanding to what they and their family are going through and feeling. I try to avoid the patterns of behaviors that were offending and distressing to me and be more compassionate and caring. I strive to model myself in the pattern of devotion, warmth and genuine care I felt from some of my caregivers. I know now better than before how critical they are. I also realize that by doing that I set an example to the physicians in training and students I teach.
Hopefully, my front-line observations will help health care providers to better understand their patients in a diligent and compassionate manner in which they were trained, and which should be the hallmark of their practice.
Itzhak Brook is a Professor of Pediatrics at Georgetown University School of Medicine and author of the book My Voice: A Physician’s Personal Experience With Throat Cancer. He blogs at My Voice.
