Boy is that the truth. I have been priding myself on having a good day, good attitude, and positive mojo as much as possible with everything going on….even when I’m gasping for air and unwinding like a clock or repeating a test for the 100th time. But sometimes, I am just mad and frustrated and over it. Sometimes I have a bad day. I really can’t afford to beat myself up about it like I do. Just another something to work on. For me, I have to realize that a bad day is not purposeful or the result of something that I did. They just happen sometimes. I have to just let it roll and move on. Dwelling on it won’t help me or anyone else.
Trust me, I want to be a role model for myself and for patients. I want to be the one to bridge the lack of adequate communication gap between the patient and the doctor. This is who I truly am. But sometimes, I am just a patient who doesn’t know what the hell she is doing because I have never done this before.
This experience has made me realize even more how poorly we communicate the details of every day care. I want to be part of the solution in helping patients through the tough stuff the right way. I am already thinking of ways that I could participate in facilitating change in the care of cancer patients.
The first thing that I would change is to provide all patients with a navigator to help them wade through this process, not just the ones in a study or with a “more popular” cancer. It goes with what I have said before. All cancers matter. All cancers are scary. All cancers could potentially kill you.. Every patient needs someone to help them through outside of their family.. The more appointments and doctors get added to the team, the more confusing and potentially convoluted things get. Our family members are the ones closest to us and they love us,but they have never done this before either. They don’t know how to instruct us and they can’t really understand what we are going through. I hope to God that they never have to.
This brings me to the second change that I would make in the cancer patient process. I would assign each patient a mentor….someone who has been through it before..someone who can really understand first hand. I know it helps me when I ask a question about a symptom I’m having if I can speak to someone who actually had it and made it through. Actually those conversations have more impact on me than asking my doctor about it. I realize that there are cancer support groups out there, but I am talking about one on one mentoring.
Another thing that I would like to change in the process is to provide mental health support and counseling to every patient. We always say that attitude is everything and that quality mental health has a positive impact on healing. It seems logical then that each patient should have their own counselor or therapist to talk to regularly. It just makes sense.
I guess that even on my bad days I am still trying to do something productive. I really can’t just let it go. I know that things are not always going to go the way that I want and sometimes I won’t accomplish a darn thing besides survive to the next day. It is just so hard mentally to think about letting some illness get the better of you, even for a day. I guess the better way to think about it would be to realize that your body is telling you that you need a break today so you can get to the next day. After all, it’s a marathon,not a sprint. Ok. I’ll work on that.