Andrew Griffith has mantle cell lymphoma and has had auto (November 2009) and allo (August 2011) stem cell transplants. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey, and can be followed on Twitter @lymphomajourney.
Part of the challenge of having cancer is learning how to work with your medical team: doctors, nurses, pharmacists, dietitians, occupational and physiotherapists and social workers.
This is a continuation of the list I came up with of shared responsibilities between patients and their medical team.
4. Be informed and prepared: We surrender much of our life and control to our medical team. One of the few areas that we exercise control over is how informed and prepared we can be for our discussions with them.
Patients spend too much time on the web trying to become instant experts on their particular cancers and treatment options. We need to recognize our limitations, ask the medical team for sites they recommend (for more tips on this see here), read the material they give us, and focus on knowing enough to be able to ask good questions and better understand the information from your team. Generally, the team as a whole will provide the breadth of information required.
Come to appointments with a list of written questions (I keep a running tally). Order them in priority, if time appears to be running out. My hematologist often tells me, when I say I have some questions, "Only three!"
While in practice he and his colleagues are more flexible, it's a useful reminder that their time is precious. As patients, we need to focus, take notes and come with another pair of ears for important discussions.
Alternatively, as one of my doctors suggested, come with a tape recorder, as some of us find it hard to listen intently and take notes at the same time -- and friends or caregivers may be more or less reliable in their note-taking. But ask your doctor first if he is comfortable being taped.
For the medical team, questions are part of the deal in caring for us. Please be patient with us, as we may need more time to process our new reality. Orient us to the sites or other sources of information that can help us as well as help you.
Ask your patients to summarize what you have told them, to ensure you know whether they have understood correctly (patients can also initiate this "replay" technique).
5. Work together as a team: Patients and medical teams are in this together, with the shared objective of as successful treatment as possible. Being courteous and respectful, informed and prepared, open and honest is part of this teamwork approach.
But patients can do more than this and should follow the recommendations of their medical team. Find ways to exercise and be active, commensurate with your condition, and remain engaged in the outside world.
Don't let cancer metastasize your life, to use Mark Dery's wonderful phrase.1 If you have issues like despondency or depression, seek help, whether from a faith leader, counselor or trusted family member or friend. Take ownership of what you can, rather than only submitting to treatment. Be as active and engaged as possible; it is your health, after all.
Medical teams can help by encouraging us. My medical team encouraged physical activity and gave me guidelines on how much -- and when not -- to push myself. They were less active on other aspects, leaving the initiative with me to see the counselor.I have been lucky with my medical team, with whom I developed good and close relationships during the last three years. One of the ironic side benefits of cancer treatments is developing closer relationships with the people caring for you.
While sometimes my questions and probing may have irritated them, it was also clear that they appreciated my efforts to understand, make the necessary decisions and be as active as possible to help my recovery process.
This post was inspired by comments made by my medical team. One of them put this relationship in context, and made the lovely comment on their commitment to our well-being:
... I was happy to see your advice about the Internet to patients. One of our physicians has a good analogy when dealing with patients who are basing medical decisions on information from the Internet for family or friends.
When you get on a plane for a trip, you don't ever think it is appropriate to go to the cockpit and start questioning the pilot on how he flies the plane. You trust that the pilot and team know what they are doing.
Patients are diagnosed with complex illnesses and turn to the Internet for answers. These patients take up a lot of time questioning the diagnosis, the plan of treatment and why decisions are made. You would never turn to the Internet to question the pilot on his flying technique.
Our specialists understand the complexities of your illness and work hard to ensure the best outcomes for the patient. On the other hand, patients are their own best advocate and should be able to openly ask about concerns they have.
None of us feel good when patients succumb to an illness. None of us profit from patients who don't live. I go home every night to my children and hope that I have done the best job I can do to keep my patients healthy and safe.
Read more posts by Andrew Griffith
Working with your medical team
1A Season in Hell, Mark Dery, BoingBoing