It never occurred to me, in my darkest imagining, that our very first experience with the oncology department would be adversarial. Wasn’t this supposed to be a bastion of hope, a supportive environment in which  a team of dedicated professionals would support us in bringing this cancer to its knees, or perhaps even banishing it altogether?

Sadly and unimaginably, the truth was that we found ourselves in an “us versus them” situation, even before John walked through those doors for his first infusion. The first sign: I was told that I was absolutely NOT allowed to be in the treatment room with him during his infusion. Despite multiple protests on my part, their “accommodation” to my desire to sit quietly by his side and give him Reiki was that I would be allowed in the room for 10 minutes– during the remaining  4-6 hours, I was “welcome” to sit in the main lobby of the hospital (!!)

The next unbelievable “rule” was that the blood work that had to be done before every other infusion could NOT be done on the same day as the appointment with the oncologist. This meant that we would have to make a 1 1/2 hour drive on Monday, just to get the blood work– then make another round trip on Tuesday for the infusion. This just did not make any sense at all to us, nor was it logical from a systems operation standpoint. I decided to raise my concerns to someone higher up in the chain of command.

In this chapter of   Shedding Light On the Cancer Journey, you will learn about my tactics for dealing with these completely illogical and obstructive “rules”,  how I succeeded in getting them changed within 48 hours for the benefit of all future cancer patients in this system, and how my new ally in this cause helped us to change other systemic glitches in other departments that had been causing more needless patient suffering.

The whole story  is available in my E-book, now available on Amazon :
If you are reading this post, it is probably because you or your loved one is a cancer patient. I’ve written about this because I suspect that it is a very common occurrence, and because I want others to know that the system CAN be changed.

What we found out through hard experience, personal research and through conversations with John’s other doctors was far more illuminating than any of the meetings with his oncologist. All that we learned on this topic and everything else about this cancer journey is now compiled  in an easily-searchable E-book format:

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.

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.
This entry was posted in cancer treatments, side effects of cancer treatments and tagged , , , . Bookmark the permalink.


  1. Eve-lynn says:

    Rachel, so sad and true that such a situation did exist but I want it to be known that for the same organization, on our little island, it was a very different scenario.

    When my husband, Richard was receiving his chemo in 2001 to 2003, we were treated with respect and open arms, and I was always allowed to sit & give Richard Reiki for each and everyone of his treatments. Our beautiful RN’s allowed me to stay with him for his entire treatment and even let me bring in food for us to eat while waiting.

    Due to their awareness and kindness we all became quite close, allowing each of us to share our feelings and stories together throughout Richard’s chemo.

    What a difference just a little caring and compassion can make when having to spend a large part of what is left of your life, taking treatments for your body. Treatment of the spirit is just as important!

    Thank you Rachel for bringing that to the attention of those who did not at first honor that relationship. Thanks to those beautiful souls in the medical field who do so!

  2. Ilona says:

    I am actually shocked with what you wrote. I didn’t know things like that still go on. I’m sorry for all the trauma you and John went though but good for you to share with us. I think it is called Control. Ilona

  3. Carol Shutt says:

    I so agree with you, Rachel, that we must be the advocates for our (and our loved one’s) health and treatment. All the systems and institutions in place in our communities (and world) will only change if we ask and expect that of them. You remind us that we can all work patiently, but fiercely toward that end. As I think I’ve told you, I was very lucky to have the kindness and humane care of one doctor and many nurses, as my father lay dying in our local hospital here on Mount Desert Island in Maine. We were allowed to have a friend do reiki with my father as my sister and I sat with him, which so calmed him and changed his breathing and his spirit (from agitated to calm). We had a wonderful nurse, who belongs to a women’s accapella group ask if she could sing to my father, which she did. It ended with her asking us what were some of his favorite old songs, and soon we were all singing oldies together over my father’s bedside. On my father’s final night, the nurses encouraged my sister and I to stay and brought in cots and a tray of fruit and other food. We were so touched and were able to be with our father when he drew his last breath. I have believed, since the death of my mother (12 years ago today!) that if we can be with a beloved when they take their last breath, it is a privledge and a gift that they give to us that stays with us and helps us on our own journey. I wish all hospitals could be as human and caring as ours in Bar Harbor was. We can only hope that they are moving that way-but kind and gentle advocacy like yours is how it will happen. Love, Carol

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