Most of us have 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 are not oncologists or hematologists. However, we can learn to improve our discussion with our medical team.
Build your knowledge. By the time you start your treatment, you will 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 fora help give a real world view of the range of experiences, you are 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 fora, and use the search function (general terms like cancer or lymphoma) to narrow down articles of interest.
Keep a notepad. At each appointment, take notes. Chemo brain or not, this is new territory, and hard to master. Come with someone, either as a listener or a scribe. My wife played the first role and it helped ensure that we both heard and understood the consequences the same way.
Start a binder. As you go through treatment, you will 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 give me time to answer my questions. If I was not 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 judgement 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 round, I switched to an iPad (initially to have a new toy). This included the following apps (equivalents available for Android):
- Evernote for clinic notes and questions, as it kept everything easy to find
- Numbers to track my blood counts
- Withings to track my blood pressure and weight
- Documents to Go for Word files such as my journal
This was very effective in keeping me on top of my medical file with my medical team – they become used to me being very prepared.
While all of us have different ways, being organized is one of the few areas in which one can have some control in something beyond one’s control, and strengthen the partnership with one’s medical team. It may not change the outcome, but it will increase one’s confidence in treatment pursued.