This Friday I have an appointment with an oncologist. A new one. I already have several oncology specialists in my corner but I guess one more can't hurt. Right? This particular appointment isn't really a big deal, its simply to determine if my Immune Globulin level is low enough for a immune boosting transfusion. Immune Globulin??? There is a phrase that I never imagined myself knowing or even reading for that matter. But, the last 2 + years has given me quite an education. If you are unfamiliar with my story check out this post (October 10, 2010 Speech) Today, I am a cancer survivor and a professional patient.
What is a professional patient? I think this definition can change from person to person but for me the following 5 things are particularly important:
1. I know where to find snacks and water in any doctor's office. Even in a new place with a new doc I can sniff out the munchies that will insure I'm in a good mood (not grumpy and hungry) when I meet with the doctor.
2. I know which medicines to take at what time and how much. This information has changed over time but my desire to keep track of it has remained steady. I have never allowed a nurse or a doctor to hand me a pill to take without first getting them to tell me what it is and what it will do. I do this even when it is the same amount of Tylenol that they brought to me 4 hours before. I also check my own pills at home. Once a week I refill my "granny box" and although I could probably do it with my eyes closed I still read every label. Better safe than sorry.
3. I very rarely wear paper clothes or over sized hospital gowns. I actually have a "hospital wardrobe". These are the yoga pants, t-shirts, and underthings that I know do not have metal tags or zippers. These clothes are comfortable, clean and totally appropriate for x-rays, CT scans, PET scans and MRIs.
4. I ask an annoying amount of questions. I worry too much and want answers to even the silliest of things. For example, I recently stubbed my toe so badly that I nearly cried for an hour. The pain actually took my breath away. As soon as I was able to get on the computer I sent an email to one of my many oncologists to be sure that a stubbed toe wouldn't be a problem with my new immune system. He laughed at me but also answered the question, "Toe might be broken but your immune system is fine."
5. I know that it is ok to have a bad day. I can have a bad day. My doctors can have bad days. My nurses can have bad days. It is just better when we try not to have them at the same time.
There are probably a million other things that I could add to the list but this seems to be a great start. If you find yourself in the position of professional patient keep these things in mind and remember that your list might be a little different. I'm off to make sure that one doctor has not forgotten to submit a referral for this new doc...wish me luck!
Best,
Elizabeth
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