The above dialogue was between myself and Dr. Saurabh Jha, better known as @RogueRad on Twitter.
Little did I realize that in less than 24 hours this dialogue would move off-line and impact me directly….again.
I received a message from a colleague asking me to help one of their family members with a difficult diagnosis on a GI tumor. As I always do, I shared my contact information and said, please have them give me a call.
During our conversation all of the same signs and symptoms were coming up in the conversation: bad indigestion, hart burn, blockage, over the counter prescriptions, months of switching between good days and bad days. Finally all things leading to the culmination of having symptoms that cannot be resolved by over the counter medication. Imaging being ordered, blockage identified, biopsy occurring, and a diagnosis of late stage cancer.
It all came crashing back to me in a flood. It was a reflection of my dad’s own story.
The conversation then moved from where I have been, to what do I do now?
“The chemo docs want to give me some platinum and hook me up to a fanny pack. I was told I will lose my hair within the week. I will be sick, but they will give me some medicine to help with the sickness.”
We began to discuss things like “quality of life” and “expectations.” What does it mean if the tumor “shrinks” and my cancer is “late stage” and “incurable” and “inoperable.”
I began with I am sorry to hear of your news. This is a life changing event. I also shared that I apologize for your healthcare team. They are trained to understand what is wrong, and conditioned to do whatever is possible to fix and try and make it better.
I took a deep breath and shared the story of my father. His choice to choose life, and to go leave peacefully.
I began to ask questions such as: What do you do on a daily basis? What do you do for work? What do you on the weekend? What are your hobbies? What do you do with your family? How active are you? What kind of foods do you enjoy? Where do you like to go out to eat?
From those questions we began to discuss the things that are the most important to continue to do for as long as possible. We began to talk about priorities. Economic, social, spiritual, professional, and personal.
We started to think of questions that needed to be asked of the physicians: How many cycles of chemo until you can test for a response? What does a response mean, look like? If there is a response, then what? If the tumor shrinks, are there new options and choices? Does it mean more time? Does the more time align with expectations? Are there implications to trying and discontinuing, or is it better to not try any chemo?
I was asked if it made sense to seek a second opinion?
If you want peace of mind it is good to hear things from other people. Even if it is the same news, told the same way, or in a different manner, it is always good to have it reiterated to you. Ultimately it is your choice and depends on your level of trust and confidence in the team that is caring for you.
I ended the conversation by sharing the rest of my contact information. I told them that if there is anything I can do, please let me know. If you need to talk, discuss the information, need help seeking another opinion, or even practice the conversation of asking questions prior to your appointment, to just give me a call.
It reminded me that in the world of cancer time trumps all.
My ability to empathize and listen doesn’t change the diagnosis. It doesn’t change the outcome.
I can’t scale it. I can’t monetize it. I am not incentivized to do it.
Yet they ended the conversation by telling me,
“Thank you for your time. It has made all the difference to me. It changes everything. You made the difficult seem simple for me.”
I can only scale impact by the N of 1.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek