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I Wish I'd Known Earlier...Each New Diagnosis Has Unique Demands


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Ever heard the saying "You never step into the same river twice"?

It has taken me a long time to apply its meaning to my experiences with five different forms of cancer as well as a variety of serious late effects of my treatments.

Each time I get the news of a new diagnosis, I have tended to fall into the trap of thinking that since I know a lot about the kinds of cancer I have had, and even more about being a cancer patient, I can predict exactly what this next adventure will be like. Given the amount practice I've had, that reaction is understandable.

But it is also dangerous. I can (and do) scare myself silly or confront my situation with far-too-casual equanimity, depending on which memories I dredge up. Some of the memories are pleasant (the relief of finishing treatment, the camaraderie in the radiology waiting room) while others remain horrifying (a painful surgery, a bad drug reaction). Because cancer treatment at its best is inconvenient and at its worst is uncomfortable and disabling, the bad memories tend to crowd out the good.

But neither a casual nor a frightened response is particularly useful when, once again, I am thrown into that post-diagnostic uncertainty. I can't afford to rush into hasty, unconsidered actions based on one test or one doctor's recommendation, and I can't afford to minimize the threat and head off for a month's vacation before I put a plan together.

During such times, I wish I could remember that while a familiar river may look the same each time I gaze at it, the water flowing between its banks is not. While on the surface, the disease or symptom may appear to be similar to past diagnoses, it is not the same. It is different first of all because each new symptom, late effect or cancer diagnosis is taking place in a body that has been scanned and drugged and radiated and surgically rearranged. Cancer changes us; its treatment changes us; other non-cancer disease processes change us. Time changes us. So each new diagnosis, symptom or problem places unique demands on us.

It's also different because the diagnosis and treatment of cancer and associated late effects are changing all the time. I may think I know how the monitoring of thyroid irregularities is approached based on my experience six years ago but I find out I'm wrong. I may think I really understand how to take anti-emetics post-chemotherapy but the cocktail of drugs and their timing is different now, not only because the general approach in the scientific literature has changed but because I have a new doctor and a new kind of cancer and a new chemotherapy regimen.

And it's different because I am different. Time has passed since my last diagnosis. I have once again absorbed and accommodated the limitations cancer has imposed.

And so, even as practiced as I am, I've found that actually finding the right care and then making the most of that care has to be discovered de novo each time a new condition or symptom is revealed.

Yes, there is much that I have learned that remains the same: I know I need to resist making decisions without careful consideration of alternatives; that I must educate myself about my condition and treatment options; that I should share the news with others about my health selectively and carefully; that the chaos I feel following a bad diagnosis will eventually reside and I will return to some semblance of the life I love; that I must ask for help.

I am deeply familiar with the process I must go through when I receive a new diagnosis, but I Wish I had known earlier that knowing about the process provides no shortcut for the sheer hard work that we patients must do to fill in the details — the content — that will bring us to and through good treatment. Rather, what I can be sure of is that I am not an expert in what is to come and that the new diagnosis is a signal to gather my energy and say to myself, "Hey! I need to know about all the new water flowing through that old riverbed."

This post is the eighth and final in a series about lessons I have learned over the years about the unique needs and responsibilities of those who have been diagnosed and treated for cancer. The series explores what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

Tags for this article:
Cancer   Inside Healthcare   Patient Engagement   Seek Knowledge about your Health   Jessie - Cancer Survivorship Series  

Comments on this post
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LindaB says
August 28, 2013 at 9:39 PM

What an eloquent statement of the challenges, Jessie. I think of you often and am in awe of your clarity and strength.