This is a continuation of the tips from yesterday's post on tips to help navigate your cancer treatment.
The health care system is large and complex, with its own culture and way of doing things. Understanding how it works, and specifically how your medical team and the system work for you, makes things easier.
Here are some additional points that have helped me navigate the system.
It helps to have a partner
There is an incredible amount of information to take in during a medical appointment, and the specialists in particular are pressed for time. Having a second pair of ears at appointments is helpful in understanding and recalling all the key points.
In addition, when things get rough with side-effects, it's critical to have a partner who can communicate with the doctor on call. There were several times when I was not fully coherent and couldn't articulate what I was experiencing. My wife spoke to the doctors in these instances, which helped ensure that we were on the same page in all aspects of my cancer treatment.
Make sure to monitor your care
My daily journal helped me remember reactions to medication and flag those reactions when I went in for a repeat cycle. Where there was confusion - such as one week where it was not clear whether I had one appointment or two - I could find answers or, as happened more than once, benefit from a communications mix-up that resulted in a second meeting with a doctor during the same week, helping my case move forward more quickly.
As I became familiar with the hospital and treatment routines, I started to understand the standard procedures and could ask appropriate questions when something was not right.
Given my weak immune system, I was particularly concerned about minimizing the risk of infections, so if the nurse wasn't following what I thought was the standard procedure, I asked -- respectfully, of course --why they were doing it a certain way when I had noticed others doing it a different way. Usually, their answers satisfied me.
Show your appreciation
Support is always appreciated. The more I recognized my medical team's efforts and took interest in them as people, the more they responded with compassion and made my hospital stays more bearable.
Repetition is very important. I was dealing with a number of different specialists, doctors, nurses and other health care providers. One he hematologist gave me the wise advice that if something was important to me, I had to tell every one of them.
It was really important for me to be able to drop my son off for his first year at college, for instance. So, I told all the specialists, as well as the clinical doctor and the nurses, about my desire to do so. The specialists first expressed doubt about whether my request could be arranged. But when the whole medical team met to review my file, they decided to adjust my cancer treatment to accommodate my life priority.
That made all the difference in making me feel like I was a person, not just a number or an illness.
Andrew Griffith has mantle cell lymphoma. He lives in Canada and is married with two young adult children. He blogs, has published Living with Cancer: A Journey, and can be followed on Twitter @lymphomajourney.