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 : http://www.amazon.com/dp/B004T3331M
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: http://www.amazon.com/dp/B004T3331M
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 http://www.amazon.com/dp/B004T3331M 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.