In the aftermath of my friend’s mostly disastrous stay in the hospital, I’ve been giving a lot of thought to how one might minimize the potential for things to go wrong during hospitalization. There were certainly more than a few “yikes!” moments during John’s numerous hospitalizations. I’m talking about those surreal situations that are largely unimaginable– until they happen to you.

The days of putting total trust in your doctor, in believing that “doctor knows best”– that thinking is a relic of the past. The abdication of personal responsibility that such a mindset spawns opens the door for a host of disastrous consequences.

The new medical paradigm works best as a partnership– at least, that has been our experience, over and over. Particularly with the advent of the hospitalist, it is highly unlikely that the doctor who is overseeing your case knows you personally. If you have been paying attention to your medical circumstances, you definitely know more than he/she does about the needs and peculiarities of your own body. By sharing that information (when appropriate), you not only make your doctor’s job easier (he/she does not have to re-invent the wheel), but you ensure that you get what you need and minimize the chances that things will go wrong.

By way of illustration, I offer the letter John wrote to one of his favorite hospitalists with a detailed list of requests for how he wanted his post-RFA hospital care managed. Although more than a few friends were aghast at the perceived audacity of writing such a letter, the hospitalist was very pleased with John’s clear and reasonable requests and mentioned repeatedly how much easier this made her job. She is still talking about this even now, a year after John’s death. When I ran into her in the hospital hallway recently, one of the first things she said to me was, “You guys were such a team. You were so articulate about what you  needed from us.”

If you are reading this post, it is probably because  you or someone you love  is going to be spending time in the hospital soon. If that is the case, then you have stumbled upon a rare opportunity to learn first-hand from another colon cancer patient’s four years of experience in navigating the colon cancer maze.

The rest of this chapter in Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze lists 5 basic guidelines for ensuring that your hospital stay is a short one, and includes a copy of  the letter to my husband’s doctor which she was delighted to copy into his chart and which was used as a guideline for all of his subsequent hospitalizations. I strongly urge you to consider crafting a similar letter for your own hospitalizations.

Our doctors told us we were the most informed patient team they had ever encountered– yet we felt utterly lost a great deal of the time. Every cancer patient I’ve talked to felt the same way. We learned so much about The System, and how critical being  an informed patient is to getting the treatment you need, how to deal with difficult doctors, troubleshooting and taking charge of pain control– and so much more, none of which you will hear about from your doctor.

You owe it to yourself and your loved one to benefit from all that we learned the hard way.  This is the kind of information that, until the publication of this book, could only become part of your database by living through it and  realizing in retrospect how all the pieces fit together: colon cancer from the patient’s and caregiver’s point of view.  $9.99 seems like a very small price, considering the emotional and physical suffering you will likely be saved by learning from our experience.

Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze can now be read on any computer or other reading device. The reader interface is available free from Amazon and is downloadable in seconds.

I will realize absolutely no profit from the sale of this book.  All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.



About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
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  1. Ann says:

    May my own tears remind me how strong one must be
    if ever in this situation with myself or anyone
    else and may I not only be compassionate without
    fear but knowledgeable and educated to be able to
    work through it all.
    Thanks for being a sharing survivor!
    Another excellent read!
    A warm hug!

  2. You have created an incredibly valuable blog, worthy of being written into a book. As a Professional Patient Advocate, I can tell you the experiences you are sharing through your first-person voice are amazingly common and your solutions are very direct and very accurrate. Information that only comes, unfortunately, from only first-hand experience. I am experiencing cancer treatment of a loved one in my family, and what you have written so incredibly parallels our experiences with medical care and the medical system. I hope you will continue to write in such great detail, as you are helping more people than you will ever know. Thank you.

    • surfingon says:

      I am so grateful for your taking the time to write this, Sheryl; your comment represents the ultimate validation of my motivation for starting this blog. That someone who is working as a patient advocate experiences the same obstacles that John and I came up against is on the one hand shocking– and yet, sadly, not so surprising. Knowing that you find my writings helpful gives me great hope and inspiration to continue. A big mahalo from Hawaii.

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