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A Survivor’s Journey: One Woman’s Experience with Cancer-Related Fatigue

Ms. Maureen Gilbert, 7 Avoca Place, Blackrock, Co Dublin, Ireland. Telephone: 353-1-288-1504; e-mail: maureengilbert{at}ireland.com

	ABSTRACT

Top Abstract Introduction The Journey Endnote

 
Maureen Gilbert was diagnosed at age 45 with breast cancer in Dublin, Ireland in 2000. She had a mastectomy with immediate breast reconstruction, chemotherapy, and a second prophylactic mastectomy with reconstruction. Soon after diagnosis, she began to experience fatigue that intensified to incapacitating levels with chemotherapy and stayed with her for 18 months. This experience is described in compelling terms. Fatigue was not mentioned by any of her caregivers when they spoke of symptoms and side effects. She is convinced that if the condition of fatigue had been described and validated as a symptom from the beginning, it would have helped her considerably to manage and live through it. There were some very positive outcomes from the whole experience of having cancer, but the journey would have been easier, had someone told her about fatigue.

	INTRODUCTION

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At age 45, I was diagnosed with breast cancer in Dublin, Ireland in 2000. I had a mastectomy with immediate breast reconstruction, followed by chemotherapy with doxorubicin and cyclophosphamide. Nine months later, I had my second (prophylactic) mastectomy and reconstruction. Between those times, there was unplanned surgery that included the removal of my gall bladder; afterward, there was more planned and unplanned surgery.

	THE JOURNEY

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The fatigue was there from the beginning. Three days after diagnosis, I wrote in my journal, "I wake up and think, ‘I want to sleep more; I’m physically worn out.’ Then I think, ‘I’ve got cancer.’ Then I think, ‘Oh, hell, which of the hundreds of pressing things that I have to do will I do? Make lists? Think? Clean the house? Who will I talk to on the phone? What time and energy do I have for practical things?’" After my first mastectomy, the fatigue intensified: "Even writing about it all makes me feel exhausted and makes the task seem damn near impossible." Chemotherapy put the tin hat on it: "Writing is a bit like pushing the pen through resistant mud or treacle....I lack the energy to deal with it any more—I’m just worn down and worn out."...Tzemisht, weak as a kitten, wobbly as a newborn fawn—my journal is full of vivid images. I knew what fatigue was like, all right.

After chemotherapy, I went back to work, and the fatigue worsened. The lowest point—worse than not being able to string a sentence together, worse than not being able to cream butter and sugar together when I was making a cake—came when I burst into tears at the end of my street one morning, utterly defeated by the complexity of deciding whether to take the bus or the train to work. "Ahead of me is MORE," I wrote, "a different kind of crucible, involving a new kind of flame." There was planned surgery, unplanned surgery, treatment, my changing body shape. There were my shifting emotions and energies, there was protecting my friends from as much of the yucky stuff as possible, there was my sense of isolation and redundancy and uselessness, there was....

Any one bit of it was enough to fell a horse. Instead, there were endless bits to it, and it went on and on and on.

In all that time, with the most solicitous and democratic doctors, the most supportive and interested breast cancer counselor and social worker, nobody mentioned fatigue. Blood counts—yes; depression—yes; but fatigue—no.

I think we all took fatigue for granted; we saw it so much as part of the territory that it was just a given, not worth mentioning. At the time I was diagnosed with cancer, I had worked around disability issues for 15 years, including a 4-year stint as head of community services for the Multiple Sclerosis Society of Ireland. I knew a thing or two about fatigue and could also recognize it in myself. I knew what it did to me. To the friend who so nobly supported me through my chemotherapy, I wrote, "The main thing for you to remember is that exhaustion makes me very gloomy, and I find it hard to cope with almost anything when I am in that state." But although we talked about the coping and the gloom—even discussed a sense of depletion, of feeling run down—we didn’t mention fatigue. It just wasn’t on the radar.

What a difference it would have made if my fatigue had been acknowledged! What validation I would have had. I knew that gloom was a byproduct of fatigue and not—in my case, at least—the other way around, so "treating" the gloom would have been pointless. What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously. Instead, there were times when exhaustion was all there was, my own and that of those around me, times when fatigue seemed to expand to fill the whole world—the fatigue of dealing with what had been and with what was coming, of readjusting constantly, of negotiating endlessly.

The worst thing about the fatigue was how it stymied and befuddled all my best efforts—and, boy, did I make efforts—to reframe my cancer experience positively, to see the (truly wondrous) good in it. Navigating my way through the fatigue to access the resources that I knew I had was the really tricky bit of the journey. When I wasn’t worn out, I could get on with my life, no matter how compromised it might be at any given point. When I was fatigued, nothing else existed at all.

I am totally convinced that an acknowledgment of my fatigue would have alleviated many of its excesses. I was doing my utmost—a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides—to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude. For me, anyway, how I feel at any given time is less crucial than how I feel about how I feel. Validation of my fatigue as an integral part of the cancer experience—in terms that were supportive—would have made all the difference and, very likely, would have broken the fatigue-gloom cycle. I didn’t need to hear of "sleep hygiene" with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place.

Nothing stays the same forever, and the fatigue began to fade about 18 months after the journey began. Concurrently, the positive aspects of the whole experience came into ever sharper focus: the life-enhancing changes, the creativity, the celebration of who I had become—and the fatigue itself. Without fatigue, I would have learned less about myself, confronted fewer of my demons, and defeated them far less often. Without fatigue, I would have learned less about those around me—who had the courage and nobility to stay with it, who did not. Without fatigue, I wouldn’t have had the courage myself to take the risks or make the changes in my life that I now am thrilled with myself for attempting. Without fatigue, the transformational, redemptive, liberating, creative aspects of my experience would have been less obvious, less celebratory.

I don’t want to give the impression of nobility gained through suffering. There is nothing noble about hardly remembering your name because you have thrown up four times an hour for a whole day and now lack the energy necessary to find someone to stay the night in your house with you. On the other hand, cancer’s liberating potential is extraordinary: now that I have come to terms with my own mortality, exactly what else am I meant to be afraid of?

What I needed in the long dark tunnel between there and here was acknowledgment, validation, comfort, consolation—the sense that it was okay to be me, that how I was doing was good enough. Because of my journal, my key supporters, and my creativity, I made it, and made it well enough to now want to turn my energy outward, to operate from a new perspective far better for me than the one I endured before I had cancer. I can only imagine how much more might have been gained if my fatigue had received some attention.

	ENDNOTE

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At the time of her diagnosis, Maureen Gilbert was Senior Policy and Public Affairs Advisor at the National Disability Authority in Dublin, Ireland. As a result of her cancer, she took early retirement and is now involved in life-coaching, consultancy, writing, singing, traveling, and enjoying her life.

Received January 10, 2003; accepted for publication January 12, 2003.

This article has been cited by other articles:

				P. A. Daly Introduction: All Ireland Fatigue Coalition Oncologist, February 1, 2003; 8(90001): 1 - 2. [Abstract] [Full Text] [PDF]

This Article Abstract Full Text (PDF) eLetters: Submit a response to this article Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services E-mail this article link to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Reprints/Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Gilbert, M. Search for Related Content PubMed PubMed Citation Articles by Gilbert, M.