Thursday, April 9, 2015

Thoughts On Being A Patient Advocate for a Friend or Relative With Cancer

Dear Lit Loves,

Well, I was quite struck today upon seeing the news that Taylor Swift announced that her mother had been diagnosed with some form of cancer.  Having been a part of a family of cancer warriors, I immediately wanted to give her some advice from a Generation Xer who has experienced both friends and relatives combat the big C or cancer.  Obviously, most people realize that I write in the memoir genre and much of what I write about deals with what my family has been through when it comes to cancer and its treatment.  Honestly, I would love to be able to send someone like Taylor a completed book demonstrating and outlining our experiences, but alas, it's been deemed by the great powers that be in publishing not to be a worthy book topic nor I a famous enough person to warrant having a book involving cancer published.

At any rate, here are the finer points to remember when being a patient advocate for someone newly diagnosed with cancer:

1)  Make sure, doubly sure, you get the entire pathology report on the specific cancer with which a person is diagnosed.  This is crucial.  Make sure you also ask about the stage of the cancer and whether the cancer is slow-growing or aggressive.  The answers to these types of questions will dictate treatment protocol.  Also, I've always kept a copy of my father and mother's pathology reports involving cancer because I could inherit it myself and it would be informative for my doctors in the future in terms of diagnostic screenings and treatment.

2)  Make sure a cancer patient has someone to accompany him/her to oncology appointments, labs, and treatment.  I can't stress enough how critical this is.  I've watched many times at various cancer centers and it is so true that if you have someone with you, you get better care.  It's not always possible for a person with a cancer diagnosis to remember everything a doctor or nurse says.  Sometimes, the patient becomes panic-stricken and it's always good to have someone with you for support and to take notes and ask questions.  Remember, the squeaky wheel gets the grease.

3)  Follow a cancer patient's lab reports closely.  It may be you, the patient advocate, who first identifies that your friend or parent with cancer is low on hemoglobin, platelets, or red blood cells.  You want to make sure the doctor or nurse is monitoring for these type of side effects during the course of cancer treatment.  You also want to make sure that the cancer patient gets the transfusions he/she needs in a timely manner. 

4)  Although people will want to visit with a cancer patient, often he/she only has so much energy.  People generally mean well, but it's okay to say that someone is in need of rest or to even let people know that the patient does best with short visits.  Obviously, there will be days when a cancer patient cannot or is unable to receive visitors.  Just be polite, but assertive and informative as an advocate for a friend or loved one with a cancer diagnosis.

5)  Cancer treatment changes a person.  There will be side effects of surgical treatment for cancer, chemotherapy, and radiation.  My dad can no longer tolerate sweet foods.  His taste buds have been forever changed as a result of multiple treatments for lymphoma.  A friend of mine found that radiation therapy made her violently sick while chemo caused no nausea whatsoever.  It all depends on the individual and how their body reacts to the treatment.  Also, there can be confusion and memory problems related to cancer treatment.  My dad refers to this as "chemo brain" when he is unable to remember someone's name or the precise word he is trying to retrieve. 

6)  Go to a hospital where you can get the best cancer treatment.  I'm very serious.  Some cancer centers are better than others.  Some university research hospitals are on the cutting edge of cancer treatment; they are aware of the latest treatment advances and drugs that are in the pipeline with a clinical trial.  You want the very best minds to be trained on the cancer patient and you also want doctors and nurses with vast experience with the type of cancer your friend or loved one has. 

Those are my words of wisdom today for Taylor Swift or anyone else who finds themselves in the position of having a friend or relative diagnosed with cancer.  I wish I could send people a book that relates me and my family's experiences with our healthcare system, oncologists, cancer, and the entire cancer treatment/remission/cure process.  If it doesn't happen soon with a major or independent publisher, I might just have to self-publish because obviously, there is a need for these types of books even if the publishing world doesn't yet see the importance of it.

Till my next post,
Grace
(Amy)

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