One of the most confounding, mind-boggling aspects of this cancer journey was that the medical professionals we were counting on to co-ordinate John’s care sometimes seemed to be not communicating at all, each operating under a plan of action of which the other was completely unaware. One of the questions that continued to haunt us for this entire journey were:

“Who is in charge here? Who do I talk to?”

The answer to this question was for the most part buried in the shifting sands of circumstance. Even more daunting was the realization that the professionals to whom we were entrusting John’s life didn’t themselves seem to have a clear idea of the answer to this question. Furthermore, the miscommunications were so glaring that when we reported to one doctor what another had told us, the second doctor was so appalled that he immediately assumed that his colleague would never have said such a stupid thing– therefore, John and I must be complete idiots to have so grossly misunderstood.

For us, the majority of these problems initiated with the oncology department, the “black hole” of our HMO, to quote the vice president its Consumer Affairs department. Let me give some examples of the kind of routine occurrences which left us reeling in disbelief…

If you are reading this, it is probably because you have encountered some of the same mind-boggling, totally demoralizing medical miscommunication that we experienced– the kind of surreal exchanges that leave you feeling as though you might be losing your mind.

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. It is compiled here, in an easily searchable format:

The rest of this chapter illuminates what we had to learn the hard way: about the need for both the patient and their advocate to look beyond the apparent contradictions for the absolute truth as it relates to their particular circumstances, about how vital it is for both to be firmly grounded in the details of their case and be prepared to correct misunderstandings and misinformation before it gets out of hand, and much more.

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. It is unfortunate that these and I’m sure many other “communication” mishaps occurred, but the good news is YOU didn’t lost your mind, which is clearly evident in your frank willingness to share information with the general public so wisely and in such great detail. As a Patient Advocate, I am all too familiar with the type of “communication” you are writing about in this blog; it’s mind-boggling, as you say. I encourage you to keep “surfing on,” making others aware of all these nuances and intricacies of John’s care (or lack thereof); it is saving many people headaches, frustration, and mistakes. Thank you.
    Sheryl Kurland

  2. Laura says:

    I agree with you that this is one of the critical areas that patients find frustrating…and perhaps it’s a reason why patients disengage from the process altogether.

    Who you’re talking to makes all the difference to how the cancer is viewed and what is considered “treatment.”

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