By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and has had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com and can be followed on Twitter @lymphomajourney.
Most
of us find it challenging to make sense of the wave of information when
we enter our cancer journey. This is foreign territory, with its own
language, culture and routines. It takes time to absorb and understand.
We're not oncologists or hematologists. However, we can learn to improve our discussion with our medical team.
Tips to help
Build your knowledge:
By the time you start your treatment, you'll likely have searched the
web and read brochures on your cancer. Ask your medical team which sites
have reliable and up-to-date information to avoid old and possibly
discouraging information on treatment outcomes.
While blogs and
support forums help give a real-world view of the range of experiences,
you're an individual, and too much thinking about what happens to
others, good or bad, increases worry further. Moderation!
To save time, set up Google Reader for news sites, blogs and forums, and use the search function (general terms like cancer or lymphoma) to narrow down articles of interest.
Start a binder: As you go through treatment, you'll get more and more paper. I started a binder, organized with these categories: contact info (first page), treatment plan, test results, background information and drug information. The purpose is to have all reference material in one place, to consult and take to hospital and clinic visits.
Be prepared: Prepare a list of questions for the medical team for your clinic check-ups (I found it harder during the daily hospital routine). My doctors are busy people.
However, they always take time to answer my questions. If I weren't prepared, the appointment would be limited to a brief summary of my condition.
As treatment varies depending on the doctor, having detailed notes and questions helps track any changes. Given my group practice, I questioned my team about changes (scan or not to scan, when to stop immunosuppressants) -- not to challenge their judgment but to ensure I understood their rationale for the change.
While every patient gets good care, an empowered patient becomes a partner in treatment, one that my medical team appreciated, and may have resulted in better care.
Go electronic: I started with a paper system. My second time around, I switched to an iPad and downloaded apps that helped to:
- Organize clinic notes and questions
- Track my blood counts, blood pressure and weight
While all of us have different ways, being organized is one of the few areas in which you can have some control in a situation that's beyond your control, and strengthen the partnership with your medical team. It may not change the outcome, but it may increase your confidence in treatment pursued.
Read more posts by Andrew Griffith.
For information, education and support for lymphoma survivors and caregivers, go to
http://lymphoma.peoplebeatingcancer.org/
David Emerson
http://lymphoma.peoplebeatingcancer.org/