The Education of a Caregiver: The Importance of Being Your Own Advocate in Fighting Cancer

by Nancy Hoey, caregiver on December 10, 2010

I have been asked to write something from a caregiver’s prospective on the new and improved ACKC webpage. What are my qualifications? I guess longevity would have to be one of them. I’ve been a caregiver for over 15 years now, and while my husband, Mike, is the actual kidney cancer patient, I do all of the research and ask all of the questions.

By way of introduction, I will try to summarize how we’ve gotten where we are today. Our journey with this beast actually began in 1995 when Mike had blood in his urine and went to the doctor who felt it was a kidney stone and he put him through some tests. When the tests were completed, a report was forwarded to the doctor and the first paragraph of that report said, “No evidence of a kidney stone is noted.”

With that, the x-ray, the file and the written report went up on a shelf and stayed there for the next 18 months.

We absolutely felt like we’d been run over by a truck!

In August of 1996, Mike again had blood in his urine, and he went to a different doctor who requested his medical information from the previous year. I will never forget how matter-of-factly the doctor presented us with the news. “You have kidney cancer and you’ve had it for over 18 months.” We absolutely felt like we’d been run over by a truck! He handed us a copy of the written report from the previous year. The second paragraph of that report stated, “However, it should be noted that the patient has a 9 cm mass on his right kidney, suspect kidney cancer, immediate follow up recommended.”

No one bothered to read past that first paragraph that said no kidney stone. After six weeks of tests and more tests, Mike was finally given the go-ahead for surgery to remove his kidney.

Even with the news that we so wanted to hear – WE GOT IT ALL – our lives were forever changed. We were cautious to accept the all-clear diagnosis. How could a doctor be sure that “it” was all gone. What if one cell escaped? How would they know? Would that change things? If “it” did come back, where would “it” go and how would we deal with “it”?

We needed a plan, we needed options, we needed information and knowledge. Back in 1995-96, we didn’t have a home computer or access to the internet. What we needed to learn about kidney cancer came from frequent trips to the medical library at our local hospitals. The news then was very grim. Those were the days before Avastin, before Sutent or Nexavar. We hadn’t even heard of HD IL-2 and had no idea the impact it would make on our lives and the lives of others. Mike insisted on having a chest x-ray every year because we’d read that if “it” were to come back, “it” would attack the lungs.

After five years of x-rays, the doctor wanted to declare Mike cancer free and clear. Fortunately, neither of us were comfortable with that so we insisted on continuing with the annual chest x-ray. We know now that it should have been an annual CAT scan but insisting on that yearly x-ray saved Mike’s life. There is no doubt in my mind that it made it possible for him to still be here with me and our two adult children.

3 Responses to “The Education of a Caregiver: The Importance of Being Your Own Advocate in Fighting Cancer”

  1. February 03, 2011 at 9:27 pm, An Introduction to Caregiving | ACKC said:

    […] Read Installment One: The Importance of Being Your Own Advocate in Fighting Cancer […]

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