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.
Working for the government has given me insight into the various approval levels, procedures and strategies sometimes required to move things along during my cancer treatment.
The following points helped me navigate the system.
Get a second opinion
After you meet with a specialist, who recommends a cancer treatment, the process kicks into high gear. The specialists all work on a team basis, so the process includes an element of agreement and second opinions.
However, for peace of mind, I consulted with doctors in other hospitals to see if they thought the recommended treatment made sense. These consultations confirmed that I was getting the current, 'state of the art' treatment, and put my mind - and the minds of my family members - at ease.
After my relapse, when I was faced with the higher stakes of an allogeneic stem cell transplant, we sought a formal second opinion from a different hospital. This helped confirm the options and identify some issues with the recommended treatment, which we were then discussed with my medical team.
Learn to own your file (own yourself)
This may sound silly, but you are the only person who will worry and think about you all the time. Doctors and nurses are juggling many patients, and while they have access to your file, keeping your own parallel file is essential.
I started keeping all the key documents in a binder. I included my treatment schedule, medication information, test results, contact numbers, important reference materials and so on. I always brought the binder to the hospital and to appointments. That way, whenever I was asked what medication I was taking, for example, I could just pass on the list from the pharmacy.
The health care system is overwhelmingly paper-based, and I was asked the same standard questions time and time again. Having my reference binder ensured that I was prepared and had everything the medical staff needed. I also could give them a paper copy of the information they needed, rather than filling out information again.
To simplify things even more, I transferred most of my important health records to my iPad so I could avoid carrying the binder. This was particularly helpful during my second opinion consultation, when I was able to call up relevant information as needed.
For more details on what worked for me, see my blog post on organizing your medical file.
Be prepared for clinic (and other) visits
I prepared questions before every appointment and treatment. Sometimes these were as simple as when to take certain medications; other times, I had broader questions about how I was doing.
During one treatment, for example, I asked my doctor to walk me through my mid-point CT scan. During my treatment for relapse, my questions became sharper, my feedback more direct and my requests and suggestions more blunt. At the same time, I ensured that I was respectful of the team treating me.
It's not only important to know your file and significant indicators like blood counts. Secondly, 'how do I feel' aspects of treatment also make a difference. My favorite indicator was the 'crumminess' scale, which I used to tracked how I was feeling overall (a 1 being mild chemo taste and 10 being constant vomiting) so my care team could help address any problems.
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.
Tomorrow, I will discuss other tips for navigating your cancer journey.