Doctors, don't just hear us, listen to us.
Ryan Hamner is a four-time survivor of Hodgkin lymphoma, a musician and a writer. In 2011, he wrote and recorded, "Where Hope Lives" for the American Cancer Society and the song for survivors, "Survivors Survive" used in 2015 for #WorldCancerDay. Currently, he operates his website for those affected by cancer, 2surviveonline.com and drinks a ridiculous amount of coffee per day.
"We normally wouldn't do it this way, but with your background, I'm just going to go ahead and put you on the antibiotics," the ER doctor said.
I had been having nasal congestion, sinus irritation and more recently terrible facial pain on the right side of my face that was now going down into my teeth. It had started five days earlier and had progressively gotten much worse. It turns out, it was "just" a bad sinus infection.
So, what does a sinus infection have to do with cancer? Well, nothing exactly. However, if your immune system has been compromised by cancer treatment, then treatment of an infection might need to be approached a little differently.
The ER doctor understood how my health history fit in to the picture. In my opinion, he totally made the right choice with the antibiotics. He didn't stick to the textbook protocol that had gotten me into trouble months earlier at the same "top" hospital – a situation that went from a nasty stomach virus to brutally painful pericarditis accompanied by a seven-day hospital stay
– a stay in which I literally laid there in pain with no treatment. It was all in the name of "protocol.”
The situations were very much alike, but had much different outcomes because of one thing. The ER doctor considered my history and knew that standard protocol wasn't the best route for me.
He also listened to what I had to say. Whereas, in my opinion, and in the opinion of other doctors, the internal medicine team from my hospital stay in January of 2018, who followed protocol by the letter in regards to how antibiotics are administered, got it all wrong. Again, it made me worse, much worse and I ended up being in the hospital for seven days.
"My advice to docs: be careful in extrapolating protocols to heavily treated cancer survivors likely not included in the original data set. They have less reserve," says Rick Boulay, M.D.
So, what are the key takeaways here? For former cancer patients, you know your body. So always be sure to speak up when you are communicating with doctors and medical staff about your health and what's worked in the past, what hasn't. Be sure they "get" what you are trying to communicate; make sure they listen.
As for doctors, we all get it and appreciate it. You have spent a lot of time studying, learning, observing. You're loaded with knowledge, and we can all respect that. Please though, listen to your patients. It could mean the difference in a discharge from the ER with a script for antibiotics or a seven-day stay in the hospital.