When Dr. Ed Pullen’s wife Kay was diagnosed with Stage 3 Ovarian Cancer, he realized that no matter how much background knowledge one might have, those feelings of fear and vulnerability still rule the experience.
My wife Kay was in the best shape of her life, training for a half marathon for the second year in a row, at her goal weight, and over just a few days our lives were completely stood on end. She developed loss of appetite, abdominal bloating and in literally a few days time it was obvious to me as a family physician that something was very wrong. In short order we found that Kay had ovarian cancer. We faced the medical system from the patient’s end for the first time in a significant way. It made me wonder how patients without my inside contacts, understanding of the system and ability to take care of things myself keep from feeling totally overwhelmed.
Rather than give you a narrative of the frustrations of being a patient in the complex, confusing and incredibly expensive medical system we live in, I’ll give a few points that I think our experience taught us that you may benefit from:
- If something seems wrong, don’t hesitate to speak up. It may just be something you don’t understand, but it could be a mistake about to happen. Pleasantly but firmly question a test, procedure, or medication if it seems unexpected or different.
- Keep an organized folder with all of the relevant test results, so any physician who needs this information can get it from you, speeding up the process of decision making and avoiding duplication of testing.
- As a patient be sure you look at yourself first. If you are too tired, ask your family or friends to limit visits. If you are lonely, ask them to visit more. If you want something, ask for it. You don’t need to be the “Mom” or “Dad” as much when you are really sick. The kids you raised are probably more capable than you think.
- Be prepared with basic information. You will be asked the same information many times. Put together a simple one page summary of your full name, address, phone number, emergency contacts, allergy and medication lists. Carry several copies of this to give to reception or admission personnel. It will save you exhausting repetition.
- Consider using a blog to communicate with friends, family and loved ones. It is free, simple, and very effective way to keep everyone who wants to know what’s up informed, yet not overwhelm you with phone calls, visitors, etc. This was probably the number one innovation we found most helpful. Check out the blog we used for this purpose if you like to see how it can work. http://kayandedsblog.blogspot.com/
- Don’t be afraid to accept help. Those who love you need a way to show that love, and providing meals, yard work, housecleaning, prayers and visits can all be helpful. Consider having one person coordinate this. Our daughter was our point of contact. When someone asked is we needed a meal, I just referred them to Jean, and she organized all of this.