The Consulting Writer

aka The Frazzled Mom

Cancer Patient Advocacy for Dummies

hands

Cancer

When that single word is uttered, the body and mind seem to shut down. There’s a waterfall like sound in the ears, blocking out anything else being said. The heart palpitates as anxiety kicks in and the mind races with the inevitable question: am I going to die soon?

This post is actually in response to a daily prompt, so forgive the “for dummies” part of the title. When it comes to the diagnosis of cancer, it isn’t so much that anyone is a dummy, but rather it is such an overwhelming subject that it typically stuns the patient into silence. Often, the physician continues on, but the sounds is like droning. No words are registered. The patient shakes hands with the doctor, a follow-up appointment is scheduled, but it isn’t until the patient has sat in the car that everything comes flooding back. Did he say cancer? What am I supposed to do now? Will I have surgery? Chemotherapy? I can’t remember when my next appointment is.

The confusion is very real and very frightening. How could one word interrupt the normal functions of the body?

I can tell you from the perspective of friend and daughter (two separate occasions), I’ve noticed this firsthand.

The first happened when I had just started my studies as a cancer registrar. I felt so small, knowing so little. Yet, the little I knew was still enough to help. It was really only a brief bit of information in class, perhaps a comment from a lecturer at the national meeting. Patient’s go into shock at the diagnosis. So what can be done when this happens? A patient needs an advocate.

In the case of my friend, I had typed up a list of questions that might be of benefit to ask the medical oncologist. She had already gone through surgery and the diagnosis was confirmed. As luck, or a higher power, would have it, I happened to enter her patient room just as the oncologist entered. With her permission, I stayed and listened to what he had to say and what he recommended. I furiously wrote, trying to capture everything I heard, even the type of chemotherapy recommended. Most of the questions I had down were answered by the doctor. So what happened after he left?

I kid you not, less than five minutes later the information was a confusing muddle of instructions for both patient and spouse. Is she having more surgery? When is chemotherapy starting? When is her appointment? Where does she need to go?

All I could do, the only way I could help, was to offer the messy notes that I had taken for them to look over. At least that might give a better idea of what to expect at their next doctor’s office visit.

At the time, I’d wondered if this was common. Then it happened again. My mother had suspicious microcalcifications seen on a routine mammogram. The physician, who I knew personally, recommended excision just to be safe, but didn’t feel it was malignant. I returned with my mom the next week. I sat down next to her, suspecting the reason for the follow-up. That’s when he laid the bomb. She had breast cancer. At that time, I wasn’t prepared as I had been before. The only benefit was more years of experience in the field. So I still managed to ask questions, write notes and retain information.

Once again, when I got her in the car and was driving her home, she’d completely forgotten his recommendations. The only thing she remembered was that she had breast cancer.

So for those who might go through the same experience, I highly recommended bringing a trusted friend, neighbor, someone who could stand by your side objectively and take notes. Here are some questions that might help ease some of the anxiety of such a diagnosis: (or Click here for downloadable PDF to print)

What type of cancer? Where is it?
Do I need other tests before started treatment?
How often do you treat this type of cancer?
Any members of my family at risk?
Where can I find more information about my type of cancer?
What tests or procedures will I need?
Where will I need to go for these tests?
When will I get the results?
What stage is my cancer? What does that mean?
Has it gone into my lymph nodes?
What is my change of recovery (prognosis)?
What are my treatment options?
What is the goal of the treatment? To eliminate the cancer or for me to feel better?
What treatments do you recommend?
Are there risks or side effects?
Will I be able to have children after treatment?
How often will I need to come for treatment and tests?
How long will treatment last?
What if I have to miss a treatment?
Will I need to make changes in work, family life, sex life or other activities?
What are the names of the drugs I’ll take? What are they for?
Who will be in charge of my treatment?
Will my cancer come back?
Can I drink alcohol?
What will my insurance cover?
If I have more questions, how can I reach you?
What if I need someone on weekends or holidays?
Should I consider a clinical trial?

dp

 

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This entry was posted on February 12, 2015 by in Daily Prompt and tagged , , .
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