My mother had been complaining of exhaustion for a couple of years. She seemed to fall prey to every virus that came along, and by the time her fatigue reached the point where it became quite alarming, nobody was surprised by the diagnosis: lymphoma -- cancer of the lymphatic system. When mom's family practitioner called to provide the details of her appointment with the chosen specialist, he said, "You're lucky. Doctor X is the best in his field." If anyone could help mom, he could.

Her appointment was for 10 a.m. on a cold, drizzly Friday in November 1991. I met my parents at the hospital at 9 and we settled into our seats to wait. At 11 I asked when mom would see the doctor and was told he was running late but would be with her "soon." It was 1:30 by the time she was escorted into the examination room and told to strip and put on a johnny shirt. At 2 p.m. I marched past the protesting nurse and found my mother cold, nauseous and utterly terrified. I got her a blanket and pulled in chairs for my step-father Charlie and myself. By the time Doctor X made his entrance at 3 I was just about ready to eat him alive.

Dr. X introduced himself to my mother, completely ignored Charlie and I, briefly consulted mom's chart and informed her that her disease was too advanced to be expected to respond to treatment. He said that lymphoma is not usually a "curable" cancer. He would try a new drug that might help. He said a nurse had been assigned to her and would be in soon. He told her to come back in a month. Then he left.

I was stunned. He hadn't said a word about what to expect or what she could do to supplement or complement the treatment. He allowed no time for questions. I shot out of that examination room like a mad woman and grabbed Dr. X by the sleeve. "Hold on just a second!" I struggled to control my shaking voice. "My mother has some questions and so do I. And I'd appreciate it if you'd show a little sensitivity and give us a chance to absorb what you just told us."

He repeated that the nurse would be in soon and turned to leave. I grabbed him again. My voice was much stronger this time. "You've just told my mother she has a terminal, untreatable illness. She's been waiting to see you since 9 a.m. this morning! And you just walk away? That's just not good enough!"

To his credit he managed not to lose control in front of the entire waiting room, but one look at his face and body language left nothing to the imagination. He was livid. But he did come back.

I asked mom if she wanted to talk to the doctor herself or if she wanted me to speak for her. She wanted me take over. I knew what to ask. I knew what I'd want to know. I was polite, but extremely firm. By the time the disgruntled doctor was finally released from his first meeting with the dragon daughter we knew what dietary changes would reduce her impending nausea, what side effects to expect, what support services might be required, how the chemotherapy worked and for how long she would take it, and much more. This was no more than she deserved and no more than he should be expected to provide.

We all need doctors when we are ill. No question. But specialists treat disease, not people. Doctor X probably believed, and may still believe, that he has no responsibility beyond treating his patient's disease. Quite possibly all he learned from his first meeting with my family was that he couldn't get away with his normal behaviour around mom's uppity daughter. That's okay. He did learn that. And he's been wonderful with mom ever since.

My mother's generation is unaccustomed to questioning the medical profession. Extremely ill people often become very passive and experience feelings of helplessness in the presence of health professionals. Advocating for my mother did not cure her disease. It did enable her to make informed decisions and it empowered both of my parents to manage her disease appropriately. And it made Doctor X respond to my mother, not just to the disease.

A small army of health professionals has passed through my mother's life over the past five years. Under the expert care of Doctor X and the tender nursing of Charlie she enjoyed a long remission. When Charlie died of colon cancer in 1994, mom had been his nurse and case-manager until the end. She became a strong advocate for him as he had become for her. By seeing the power of my questioning voice they each found the power in their own.

1996

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