I had no idea just how much guilt comes with chronic disease. This may not be true for everyone, but it is definitely true for me. I just can’t seem to balance the whole “just concentrate on getting better” side of me with the side that is worried about everybody else, my business, other people’s schedules, my patients, and just generally letting people down with all of my limitations. Sometimes I think it takes me more time and energy to process all the guilt and worrying than it would just to be sick. I get it. That sounds ridiculous, but it is the truth for me. It is just a tough balance for me.
You know what I think would be a good idea? We should sit patient’s down, after they have had a chance to digest the news of their new diagnosis, and hook them up with a mentor or counsellor to sit them down and help them start to wade through and plan for all the other complications and stuff that comes with any chronic illness. It might make it less overwhelming than just having everything smack you in the face as it comes, while you are busy trying to “just concentrate on getting better.” I get that some cancer patients have patient navigators, but the main role of these individuals is to keep the patient on track in terms of appointments, tests, and treatments. This is useful to be sure, but the real trick is managing all the outside life stuff that is on top of the tests, etc. I say we start offering life navigators too because, in most cases, the damage that is done with all the life fails, failed relationships, missed work, and unpaid bills far exceeds whatever damage the cancer inflicted.
Doctors and health care teams listen up! I have something to say! Some patients are more fragile than others. What the hell does this mean? It means that you have to be extra careful what you say to them. It means that you have to be extra thoughtful before you speak to them. It means that you need to do your research before you open your mouth and accidentally freak them out. You as the physician are part of a team and the whole team has to communicate with each other so that everyone has the same information. The patient does not need to hear different and/or conflicting information from each source. This only leads to potential panic and confusion and makes it difficult for the patient to follow through and get the care that they need. To you it may seem like a simple oversight. To the patient, it can seem like the end of the world.
This really applies to all patients, but the group I have in mind at the moment are cancer patients. This group of patients literally has their lives in your hands. They hang on your every word. They are depending on you to help them get to the other side of their illness with an intensity that is greater than patients with other diseases. You have a direct impact on their physical AND mental health, both of which are key to their survival. Think about it for a second. Anything you say to them is regarding a disease that could kill them. You tell them if they qualify for clinical trials. You tell them what chemo or radiation they will get. You talk about costs. You have to talk to them if their cancer is not responding like you hoped. Sometimes you have to tell them they are going to die. Every word out of your mouth carries the weight of their future. One bit of discouraging news may not just mean a bad day for them. It may affect the rest of their lives. No. I am not exaggerating. It is really that important.
The bottom line is that the healthcare team has to be a cohesive, thoughtful, compassionate, comprehensive unit. Patient’s lives, mental health, and physical health depend on it.
How does that Tim McGraw song go? The guy found out he was dying and decided to love deeper and speak sweeter? Now that there was hardly any time left? That song makes me cry every time I hear it, not just because the guy is dying, but because of all the time he obviously wasted when he could have been savoring life, everything and everyone around him.
Let me tell you first hand that I am being worked up for lymphoma right now. One possible type is very treatable and the other is far more aggressive and tricky. Either way, I am in for a fight and, like with any possible cancer diagnosis, there is a possibility that I won’t make it. It’s just the reality of the situation. However, I know one thing for sure: I have tried to live my life to the fullest and love the deepest since the day I was born. I have always tried to put myself out there. I have tried new things. I have been kind. I have always let my family know that they are my true love and my whole heart. Do I have some regrets? Sure. Everybody does. Are there some things that I would have done differently? Of course. I have had a shit ton of tragedy and obstacles too and I have learned from all of it. But, no matter what, I know that I have had a life well-lived so far and that I am going to continue to head in that direction. I am so grateful for that. I can’t imagine feeling like I have to cram an entire life’s worth of experiences and savoring into a couple of months because I wasted it all before that point. It’s an impossible task. My advice is take it all in now! Savor everything now! Send love out to the universe now! Don’t kid yourself and hold back thinking that you’ll always have plenty of time. Tomorrow is never guaranteed for any of us.
Shakespeare had the right idea a long time ago. I think that we have just forgotten it lately. There have been songs and poems written by many about the utter preciousness of life, and yet we still complain bitterly, we forget to notice what we do have, and we have forgotten how to recognize the good.
This also begs the question: Is it really a matter of life being too short, or is it a matter of wasting the time that we have? Seneca once wrote that “it is not that we have a short time to live, but that we waste a lot of it. Life is long enough and a sufficiently generous amount has been given to us for the highest achievement if it were all well invested.” He also goes on to say that most of us don’t even realize that life is passing us by as we are distracted by greed, poor living, etc and that it is only when death is knocking at our door that we finally “get it,” but then it is too late.
The bottom line is that it is up to us to savor live
Hello everyone. This is just a quick public service announcement on behalf of physicians everywhere. Everyone knows that it is our sacred responsibility to care for other human beings to the best of our ability. OK great. What seems to elude everyone is that our ability to be able to care for someone is highly dependent upon the information that we receive from the patient….at the time of their actual visit. I am always talking about the doctor patient team relationship and the communication between the patient and the physician is the absolute pillar and foundation of that relationship. There is no way that I can do my best to take care of you without knowing EVERYTHING there is to know about your health history and the details of the concern that you have. You are master and commander of your own ship. I am just the first mate. I help steer but I am not actually in charge of the course. I cannot act on anything that I don’t actually know about. I need you to tell me all of your symptoms and all of your history in order to help you. Every detail is potentially life or death important. Something you may think is trivial could be the absolute key to your health and survival. It is not safe to think of all the physicians that care for you as separate individuals. We are all on one team and we all need to be on the same page with the same knowledge base so that we don’t do anything that could cause you harm. We may be several different physicians, but we are all working with the same individual and everything that we recommend affects you. You can’t assume that everyone has access to the same information. Most of the time, we are getting our information from you so you need to be an active participant in letting all your team members know what is going on with you. The bottom line is: there is no such thing as too much information. Leave it to me to filter out what I need and what I don’t. Don’t self censor. It could cost you your health. And please, try to mention it while we are still talking in the room if you could. Have a great day.