Silent Voices of Blood Cancer

When I meet with fellow blood cancer patients, the conversation often turns to the many physical trials and challenges we can face, along with discussions about the countless and complex variations of this disease.

The spotlight on physical indicators

 
From the initial diagnosis and well into treatments, medical practitioners, their support teams, patients, and caregivers focus almost exclusively on addressing the physical indicators. Some patients lose hope, while others maintain a laser focus on the possibility of a remission or cure.

Lives and conversations are filled with questions such as: Is the chemo working? If so, how well, and what can I expect as a physical outcome? The list of questions regarding blood cancer's physical aspects is almost endless. While the exchange of facts and information about the physicality of the disease is critically important, something is typically missing.

Deep concerns and fears remain undiscussed

Many of us have quietly said to ourselves, or perhaps we  heard someone say, “ I will not allow cancer to define who I am.”  

Yet, our conversations often reflect deep concerns and fears at every turn. From birth to death, our interpersonal communication and interaction skills define us and frame our unique identities. When the unwelcome guest that is cancer comes calling, too often, all the vestiges of meaningful communication fade away and take on a secondary role.

Refusing to talk about the big unspoken questions

Exactly when our communication skills should kick in and go into overdrive, many choose to withdraw into silence. Perhaps we don’t want to know the real answers to the questions we should ask. Perhaps we become so numb that we lose focus. Perhaps we choose to presume the worst rather than affording ourselves the luxury of assuming a positive future.

As humans, we are blessed with the ability to communicate in many ways: verbally, through our eyes, facial expressions, and body movements. If we try, we can learn and communicate volumes if we take the time to understand what others are silently saying. While we have two ears, the sounds and noises they detect are automatically received.  

Ask yourself this question: Do our doctors really listen and internalize what we say to them?  Often, I have seen too many doctors and nurses routinely nod their heads in agreement and not listen to what patients are saying.They simply wait for the patient to finish speaking so they can return to where they left off.

Required to communicate clearly and listen intently

As patients or caregivers, we have an obligation to communicate clearly, and we have a greater obligation to listen and absorb what is being said. I have been diagnosed with multiple cancers over the past 10 years. When I heard the word cancer applied to me, it was devastating; I heard almost nothing after that and immediately presumed my death was imminent. It turned out I had many more years to live.

I learned that you must press your medical team for details.  Following my first dose of chemo, I developed a level of constipation that required hospitalization. While there, I experienced intense back and intestinal pain. The night nurse on duty put in a request for oxycodone, which relieved the pain but caused even more severe constipation, eventually requiring a surgical procedure. 

Ask questions of your care team

These days I ask questions and press for detail versus blindly going down a path. Whenever I receive a medical explanation, I make it a point to repeat what I heard in plain English and then ask if my understanding and description were accurate. It’s amazing how often my MDs have corrected what they said and offered clearer details.

Thanks to our ever-changing technology, one-on-one interpersonal communication skills have  almost become a lost art. Do yourself a favor … Speak up … Ask Questions ... Verify by playing back what you thought you heard.