WHEN IT COMES TO SIDE EFFECTS FROM CHEMO/RADIATION, LOUD COMPLAINING IS A SELF-PROTECTIVE STRATEGY

After spending a week with a dear friend who was eventually hospitalized for severe vomiting and diarrhea as a result of chemo-radiation for anal cancer, I’ve concluded that any cancer patient who is suffering these side effects MUST complain loudly and repeatedly in order to ensure that they receive appropriate corrective treatments to reverse these symptoms. Whining is a self-protective strategy!

My friend had lost 7 pounds in a week, was so nauseous that her daily food intake was down to one bite of banana and 2 bites of toast each morning, and spent the greater part of her afternoons vomiting and pooping simultaneously. She was completely wretched.  When I accompanied her for  IV hydration (which a nurse friend and I had  to forcefully urge her to request) at the  clinic, I began to understand how her situation had become so dire.

Asked “How are you doing?” by the concerned oncology nurse, her response was “I’m really tired.” [understatement of the month…] Asked “Are you able to eat?, her response was “A little.” I’m quite sure that the nurse’s imaginings of what “a little” might constitute was considerably more than one bite of banana and 2 bites of toast per day. To the nurse’s query about her liquid consumption, she replied, “I’m trying.” The nurse had no way of knowing that whatever meager food and liquid went down my friend’s throat exited quite rapidly via vomit and poop. Outflow far exceeded intake on a daily basis.

I couldn’t hold back any longer, knowing that my friend’s situation was dire; I spoke up and explained in detail what I had observed. My friend was not at all happy with me. She was the quintessential “good patient”, keeping a stiff upper lip, not wanting to be perceived as a complainer, not wanting to rock the boat, doing her utmost to be likable and cooperative. After all, her doctors had told her that diarrhea might be a side effect, that she might have trouble with her appetite, that chemo-radiation could cause intestinal cramping– so she just assumed that what she was experiencing was “normal” for anal cancer patients. She felt that asking for IV hydration was being pushy and demanding,  incorrectly assuming that “my doctors will tell me what I need.” The problem was that neither her doctor nor the nurses had any idea what she needed because she was not being forthcoming about her symptoms.

As I pondered how this might have played out in a way that could have prevented at least some of my friend’s suffering, I realized that the most effective solution was not necessarily the  most obvious…

You may be reading this post because you or someone you love is being treated for cancer and the side effects from the treatment are becoming onerous.

If so,  then you have stumbled upon a unique 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.

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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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One Response to WHEN IT COMES TO SIDE EFFECTS FROM CHEMO/RADIATION, LOUD COMPLAINING IS A SELF-PROTECTIVE STRATEGY

  1. Charlotte Flavin says:

    Rachel, You really got the message across in a thorough and graphic way! From experience with other patients, what you say is absolutely correct. The patient needs to explain the symptoms in detail, and fares even better when he or she has a family member or friend who has the courage and knowledge to speak up for them. After listening to several friends’ experiences in hospitals recently, I realize that patients are suffering unnecessarily because of a lack of an advocate; not one with the “title” but a person who loves them, and is there on a daily basis to witness and understand what is transpiring,and therefore can speak the truth to those with power.
    Thank you,
    Charlotte

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