Today was supposed to be cloudy and rainy. In the early light of the morning though I could catch an acute angle image of the sky from my bed out the window above our bed. I could see that early morning baby blue of the sky mixed with a slightly pink and white cloud moving silently and slowly through the sky. The sense was that the weather prediction was going to be wrong. I laid there and thought about weather prediction and how despite all our advances in science and understanding of the earth and her moods we still can’t accurately foretell the weather. Granted the ability of the weathermen and women of the world has become far better than it used to be but it is still a far cry from being able to bank on.
In all fairness though medicine and physicians aren’t a whole lot better. We try our best but the complexity of the human spirit can often outwit the smartest, wisest, or most tested physician. There is a saying in the physician world “the body doesn’t always read the books.” The reference is to just this lack of understanding. There is often no reason why some symptoms, issue, problem, or improvement for that matter occurs. I do not have enough fingers and toes to count up how many times what I thought would happen with a patient was completely wrong. This is not to say that what I did or told a patient was wrong. As with most physicians I often prefaced my predictions with the idea that this was an educated guess. Often I was right but I would willing accept when I wasn’t and try to learn from it.
I often think about what I have learned as a patient over this last year. I have often hinted at wishing I could find one tidbit of such value that I couldn’t help but shout it to any physician who would listen. That wisdom continues to escape me. My feeling is that being a patient is just like being a physician in that the more I learn the more I realize I don’t really know anything. With medicine it is become far easier to recognize what one doesn’t know and search out someone who has a better idea. As a patient I think there are so many options for finding the information one is interested in. Whether or not those sources are valid or not is far more tricky though I think. As a patient we can be so vulnerable to what we want to hear we can overlook the lack of supporting data. For this reason I have been some what skeptical to spend lots of time looking for answers to my questions in the general pools (internet, the web, or social media).
Recently though I have come to realize though that maybe I should be more open to these sources. Just as the weather is unpredictable so to our our lives. In the last week I have been recruited to talk about physicians and patients roles in social media and then today I found myself in a discussion where I volunteered to help start a patient portal or patient access point for discussing survivorship (I still don’t know I can call myself such)and clinical trials for Alaskan cancer patients. I will openly admit I haven’t been looking for this (and it may already exist) or have any ability to do such. Yet, the unpredictable nature of my last year has made it all the more clear to me that I have to be willing to catch a glimpse of what the weather may be and just go with it, especially if it looks sunny.
I don’t know where or what this possible source of patient contact will look like but I do hope that with some help I can start to build a source for other not only Alaskans but other cancer fighters to look at for some help in coping. I do know that maybe the biggest point of learning for me this last year is that even with my unbelievable personal social network the ability to contact and feel support from those who have followed me through my blogs has provided me with immense strength. I hope if anything I can convey that to other providers and patients. There is only strength when you speak your heart and someone listens, no matter if you are within the distance of a whisper or on the other side of the world.
Head Up, Heart Strong. I need a cure.