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Not Just Tired

By M. Jane Poulson

From the University Health Net/Princess Margaret Hospital, University of Toronto, Toronto, Ontario, Canada.
Deceased.

HERE’S THE CASE: A 46-year-old palliative care physician attends a follow-up visit with her surgeon 2 months after multimodality therapy for inflammatory breast cancer. During the examination, the surgeon asked her how she was getting along. She replied that she was feeling somewhat better than at the previous visit but was plagued by fatigue and lack of energy. "I am feeling as if I can hardly put one foot in front of the other at times." "I sure know how you feel," he said reassuringly. "I was on call last week and I have never seen the service as busy. I didn’t stop all week. I still haven’t caught up yet. A day or two off would be so nice right about now, wouldn’t it?" As I was that patient, I wanted to shake my doctor by the collar of his lab coat and scream. "No, that’s wrong! You have no idea how I feel!" But I did not have the energy. I could not seem to find the words or language which would make the doctors, nurses, and other health care professionals understand just how tired I was.

My health care providers were keenly interested in my level of pain and shortness of breath. These symptoms seemed very important to them. It did not seem to register with anyone, however, when I said that the most overwhelming symptom for me was fatigue. My anger and dismay with the many health care providers who "just didn’t get it" were tempered by the recollection of countless conversations I had had with my own patients who were complaining of fatigue. With some discomfort, I recalled making "supportive" suggestions, such as "Try to get an extra hour’s rest at night" or "Be sure to have a little nap in the afternoon." Other helpful discussions included commentaries about North American lifestyles and what a fast-moving world we were now inhabiting. Everyone was overworked and exhausted. It was becoming the norm of the 1990s. I would also cheerfully remind the patients that their bodies had recently been through a lot. Despite the fact that the majority of my clinical practice was spent with oncology patients, I had not realized the enormity of the problem about which my patients complained.

A PROBLEM OF SEMANTICS
The problem for patients, as I see it now, is that patients and professionals are using the same terminology, "tired" or "fatigue." Because they are using the same words, they mistakenly presume that they are speaking about the same phenomenon. This is the root of the problem. The deadening fatigue which invades the very bones of cancer patients is totally unlike even the most profound fatigue of an otherwise well person, even a busy doctor. When I was healthy, I remember feeling different types of fatigue. After a good run, the physical exhaustion felt wonderful. My muscles would feel soft and supple. Many people become addicted to running because of the phenomenon of "catching their second wind." There is no "endorphin rush" with cancer fatigue. Fatigue after a busy night on call did not feel wonderful, but it did respond to a hot shower and a good night’s sleep. When healthy, I did not realize the energy required for activities of daily living, such as bathing, dressing, or sitting upright in a chair.

During cancer therapy I always felt the exhaustion of prolonged exercise but without any positive attributes. My muscles felt soft and flabby. I imagined tensile myofibrils being replaced with a putty-like substance. My limbs felt heavy. The quality of my sleep was changed. The mere act of sleeping itself seemed like work sometimes. Sleep was not restful and refreshing. I never awoke in the morning feeling energetic and anxious to greet the day.

PROLONGED SYMPTOMS
During my therapy, I kept myself going with the understanding that chemotherapy and radiation were a necessary evil and that fatigue went along with the package. I and many others were disappointed when, at the end of treatment, I did not revert to my old energetic self. Cancer fatigue is not limited to the physical realm. My brain felt tired and so did my spirits. I seemed to have lost my zest for life. Even though I continued to participate in activities, I lacked my usual enthusiasm and sometimes felt I would rather be sitting on the sidelines. The fatigue continued with almost no change for months. For sure, there was a gradual improvement in my energy, but the incremental improvement was small and very slow.

Anemia is frequently promoted as a major cause of fatigue. Transfusions certainly helped when my hemoglobin level was very low, but the beneficial effects subsided after it reached a level of about 105 to 110 g/L. Depression, no doubt, contributes to the fatigue; however, in the 6 weeks leading up to my diagnosis, I was feeling distinctly unlike myself and wondered why. I was doing a lot of teaching at the time. Before each tutorial, I sat at my desk thinking that it was such a long walk to the amphitheater. I usually enjoyed the medical students, but that spring I had to fight the urge to dismiss them at the break. This mental fatigue and inability to focus my thinking persisted for a long time after the acute phase of the illness and its treatment. For many months, I found myself quite content to simply sit doing nothing. I had neither the physical energy to move nor the mental energy to read or to contemplate.

Because I did not understand cancer fatigue, I did not help myself in the recovery period. I started from the premise that at the end of treatment my body had returned to its former energy metabolism. I presumed that patterns of exercise and activity which had previously worked would be reasonable. I set up a recuperation plan for myself. I began walking and assumed that the pace and duration of my walks would increase each week. I allowed myself to continue with afternoon naps initially but was dismayed when these did not shorten nor become unnecessary. In short, I made what I thought would be a reasonable recovery routine, but I fell drastically short of the mark. My body was not responding in a recognizable fashion. What had been reasonable expectations formerly were now far too ambitious.

HELPFUL INTERVENTIONS
How can we help our exhausted cancer patients and families for whom prolonged symptomatology is difficult to comprehend? Health care professionals must recognize that cancer-related fatigue is different from fatigue experienced by otherwise healthy persons. Caregivers and family must also be so educated. While exercising or a nap may be helpful suggestions to normally fatigued persons, these may not be the solutions for cancer fatigue.

It must be recognized that each patient is unique. The extent to which cancer fatigue disrupts normal activities will vary widely. In an effort to be encouraging, many colleagues reassured me that many women with breast cancer continue with all their family responsibilities as well as work full time. Rather than helping me, this made me feel somewhat inadequate or lazy because I was so tired. It also led me to fear that my fatigue was all in my head and that if I could only get a grip on my emotion I would be more productive.

Patients must be reassured that recovery eventually does occur but may be prolonged and incomplete. Rehabilitation may not follow a predicted course. The healing trajectory is unlikely to be straight. Patients should be encouraged to pursue light to moderate exercise as much as possible to preserve conditioning. Exercises such as yoga are helpful as the exercise can be tailored to each day’s energy level. Patients should be encouraged to create a healthy and pleasing environment. Many modalities should be suggested, eg, healthy diet, regular sleeping habits, and creation of a restorative environment with fragrance, sound, and visual effects.

Physicians and patients must understand that recovery may not be complete. Four years later, my total physical capacity is less. It seems to be harder to replenish my energy and every activity seems to take more energy than it once did. My physical and, I believe, mental abilities have much sharper boundaries than before. By this I mean that when I can no longer carry on with an activity, this margin is very clear. Attempts to finish a task or pursue a project are unsuccessful. Empty is empty. I do not seem to have a safety margin where, although the needle is on E, there is still energy to spare. Before my illness, I never considered whether I would have enough energy to embark upon a project or activity. Now, this is a serious consideration. Patients should be encouraged to prioritize activities to ensure limited energy is optimally utilized.

Fatigue is a devastating symptom that deserves the same attention as pain, nausea, dyspnea, and other well-recognized complications of a malignant illness. Oncologists must recognize its common presence and ask the right questions to elucidate its dimensions.

Surely, fatigue is a problem deserving of a priority for research on its etiology and treatment. We now recognize that many tumor symptoms flow from an aberrant inflammatory response in concert with chemical stimuli that may be produced directly by the tumor. There is no doubt that general counseling and psychologic guidance are helpful to patients and families facing the problems associated with overwhelming fatigue. It is to be hoped that in the near future these approaches will be complemented by therapies soundly based on our understanding of the pathophysiology of fatigue with proven successful interventions.

ACKNOWLEDGMENTS

Supported by the G.H. Wood Foundation and The Edward Dunlop Foundation.

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