How to Be A Better Patient
Your doctors and nurses should never assume that they have a real understanding of what you are actually going through. Unless they have been there themselves, it is impossible for them to really know. It must seem to them as if they do know because of how many patients they see, but seeing it and living it are very, very different. So it is up to you, as a patient and your own best advocate, to make sure that you are very clear about what you are feeling and experiencing. For example, anyone who has had chemo knows there is a difference between the heartburn you get from chemo and the steroids to the nausea you get from it. If you tell your doctor you have a bad tummy, he may give you more anti- nausea meds instead of a prescription antacid. So be clear: say what is wrong as specifically as possible.
If you are expressing fear of the future and the unknown and in return are told, "Don't worry your hair will grow back", tell your doctor that is not helpful and is actually a hurtful comment. Your doctor should be smart and sensitive enough to know the difference between someone who is afraid for their life and not just their appearance. Speak up! You want answers; you are having the fear, let them know what you want so they can help you.
A health care worker should be empathetic to your experiences, should acknowledge your fears and concerns as real, and offer help outside of their office.
Your doctor might suggest a therapist, or a support group, or a "cancer coach" who will get you through the things that cannot be dealt with adequately in his office. You should find ways of letting go of the built up fears and emotions and these outlets may help you enormously.
A support group can help with feelings of isolation and help you to share with others who are experiencing everything you are. But a word of caution: it can be a double edged sword. As helpful as a support group is, there will always be someone there who is sicker than you and who might not return. This can be extremely frightening, even though we know that all our cancers are different and everybody is not the same and does not end up the same way. When you are there sharing with someone who is no longer able to come to the meetings and you are newly diagnosed or in the throes of treatment, it can do more harm than good to imagine not winning this war. You need to know this before you join a group. If you can join a newbie group then that is the best thing. Avoid the groups that have all ranges of illness and all types of cancer. That is why online support groups - such as the No Surrender Survivor Forum, are the best choice of all. You read what you want to read, get help where you need it, turn off the computer when you don't want it and best of all, you can attend this type of support 24/7 in your pajamas.
Remember, your doctor is only human. You cannot expect every detail of your case to be remembered, even with a medical chart. It is up to you to make certain you have all your questions answered, and if you feel something is wrong, it is up to you to call it to your doctor’s attention.
Know your test results from the last set of tests you took. This way, when you are sitting across from your doctor and a question comes up regarding the results of your last bone scan, you will be able to report, right away that the test was clear. You just saved yourself the extra five minutes it would take for your doctor to wade through your chart to answer his own question.
Gone are the days where we handed everything over to our medical team. In today’s world of HMOs and timed office visits, an informed patient can save her own life.