BE PROACTIVE: Make it clear to each healthcare provider you see that you are a patient who wants to know that your questions will be answered, who wants to be copied on all test results, and who wants to be involved in treatment decisions. Not all patients are this proactive and it is important to be up front about it. Your concerns, including your quality of life priorities, must be considered by everyone on your team.
KEEP RECORDS: Keep copies of your test results and other file records from all your healthcare providers organized by topic. By law, patients are allowed to have copies of their medical records and they cannot be withheld from you.
ASK FOR EXPLANATIONS: If you do not understand an explanation by your physician, ask that it be explained again, and continue asking questions until you understand the answers regarding any issue involving you and your disease.
NOTE YOUR QUESTIONS & ANSWERS: Prior to your medical appointments, make a list of questions. At your appointment, explain that you don’t want to forget anything that is said, and that you will take notes if you need to. Most doctors do not favor being taped during an appointment. Notes are very useful for remembering what is said. If you can bring someone with you to take the notes, that is even better.
TAKE TIME TO DECIDE: It's okay to say, "Let me think about that" when your oncologist tells you that "we're going to start treatment immediately.” WM is a very slow-growing cancer, and you need to think, research, talk with others, and even get a second opinion before agreeing to treatment. Ask for treatment options (that's plural) and ask about the pros and cons of each one. Ask why your oncologist favors the treatment being recommended. You may want to check with one of the WM experts listed in “Getting a Second Opinion”.
EXPLAIN YOUR PAIN: When you are experiencing pain, be candid about it and disclose it to your healthcare team. They cannot know if you don’t tell them about it.
VERIFY EVERYTHING: When in the hospital, don’t be afraid to question the nurses and doctors. Verify that you are receiving the correct medications and the correct dosages of those medicines. Verify that you truly do need those extra blood draws and medical tests while in the hospital. Be sure that medical personnel have washed their hands before examining or treating you. If your situation needs special handling (such as keeping blood warm if you have cold agglutinin disease), don’t be afraid to always remind doctors and nurses of your special needs – it saves much time and trouble for everyone in the long run. You or your advocate should remain vigilant in this regard – the hospital staff does its best, but there are many other patients besides you to care for. You are the one who knows your own body and condition.
QUESTION EVERYTHING: Question anything that you suspect is not correct, especially with technicians and office staff. But don't become a constant complainer about everything. An office policy or practice will probably not be changed just because you don't like it.