Importance of Self-Advocacy

Through my involvement with support groups and by the virtue of being a cancer patient/survivor, I get to talk to a lot of people about cancer.

Given we are living in the 21st century and experiencing the highest levels of education and information availability in human history, it is surprising that so many people are taking what I consider a laisssez-faire attitude  towards their, or their loved ones’ disease and treatment.  I sometimes wonder if such an attitude is borne out of sheer fear; the “head in the sand, what we don’t know won’t hurt us” mentality. If this is the case, the irony of the matter would be that the fear of the unknown just adds to the stress and anxiety. 

I’m not suggesting that one should sit in front of a computer all day using “Google” to search out survival statistics, a truly depressing pastime! What I am suggesting is that patients and caregivers take control of their disease and not have the disease control them. 

When I was first diagnosed, I knew absolutely nothing about colon cancer.  In fact, I really didn’t know much about that part of my anatomy at all.  I felt as if I was thrown into another universe; a universe full of words and jargon I have never heard before let alone understand. Two years ago words such as: sphigmoid, ileus, lymph node, vascular involvement, carcinoembryonic antigen, and neutraphils were just not in my vocabulary! As a result, I made it my pet project to learn as much as I could, not because I wanted to upstage my doctor(s), but I truly wanted to understand my disease and its treatment. I also did not want the doctors to feel obliged to ‘talk down’ to me like I was an ignorant child.  I wanted to let the medical team know that not only was I going to be actively involved in my treatment, I was going to be the one making the decisions. It is my life after all: I have ownership, I have the responsibility.  And you know what?  The doctors were not only okay with that approach; they seemed relieved to be dealing with an informed, consenting adult.

Given today’s medical system pressures, I think it’s unrealistic for patients to delegate all matters concerning their health and well-being to their doctors.  Doctors have enough on their plate because of a demanding case load without having to hold each patient’s hand and guide them through the cancer journey.

 

While they are important players in the cancer fighting team, no one doctor is the captain, the patient is. It is up to the patient to formulate questions and have them ready for the appointment, making the often short visits with the doctor that much more productive. At the same time people should not be put off when the doctor answers some of the questions with, ‘We don’t know’.  He or she does not have a crystal ball; there are still too many unknowns with the disease and its treatments.

Here are some handy tips I have put together based on my own experience:

-         Obtain copies of your medical procedures; ie: surgical report, pathology report, CT/MRI reports, blood work, etc. Your medical records contain lots of important details that your doctor may not always have time to discuss with you. These are YOUR records and you have a right to them.

-         Formulate your questions ahead of your doctor’s visits.  Write them down if necessary.  Bring them with you to your appointments.

-         If at all possible, bring someone with you to your appointments.  This person can help you recall what was discussed and/or take notes.

-         If you don’t understand a particular medical term, look it up!  There are numerous medical dictionaries available on-line.  If you don’t have access to a computer, the Ottawa Cancer Centre has a library and fabulous research support waiting to help you!

-         Keep a diary/journal of your symptoms.  Sometimes treatments, especially chemo can cause ‘chemobrain’, and you won’t always remember to mention things at your appointment.

-         Raise any side-effects or symptoms with your doctor. Many treatments and drugs can be modified and/or changed if you are not tolerating them well. If you are suffering incapacitating pain, ask the Cancer Centre or your doctor for a referral with the pain specialist.

-         Do not be scared or intimidated to ask for a 2^nd opinion if you are not comfortable with your doctor’s diagnosis or medical advice. A good doctor will welcome a peer’s opinion.