Yesterday I had the wonderful opportunity to assist CancerCare with allowing the second-year medical students to hear about a patient’s experience regarding a diagnosis of cancer. While a privilege to share my thoughts, the experience did, once again, dredge up emotions that clearly I have not yet fully processed. In odd an way, I was grateful for the tears that came as I knew immediately that I was so very fortunate to even be there to tell my tale.
I began by asking how many doctors they thought I had seen since my initial complaint. Guesses in one group were conservative–six–and high in the second–30. I counted 8 doctors, not including the students who came by each morning while I recovered from the surgery. Add them to the mix and I was dealing with approximately 20 or so personalities, communication styles, egos, and opinions. Mix in nurses, health care aides, housekeeping staff, pharmacists, nutritionists, receptionists, and the like, and the number rises to over 30. That is a lot of people. My health team was, for the most part, phenomenal, with really one exception.
My major points were about patients being individuals. For myself, I do not like being engaged in a battle against cancer, which I need to beat. I love that my oncologist gets how I am approaching my illness. I do not feel a need to be aggressively seeking a cure (partially because there is not one short of a miracle–which can still happen). She has not suggested restarting chemo and I appreciate that she has heard me on this issue. The battle field image works for warriors. I am more of a pacifist which does not mean I have given up. It simply means that I am focusing on living and not letting fear get the best of me. The person in front of them is who they need to take their cues from. My dad and I are different people and require different care. I am much more curious than he is and tend to ask more questions so that I do not have to check Dr. Google afterwards.
I also spoke about how the patient knows his or her own body best and that the doctor can help us by believing we do. I advocated for the role of an accompanier–mine, as many of you know, has been terrific and for the most part, has been welcomed by most of the professionals. I told them it is in their best interest to have this person in the room so that the information is remembered and recorded for future use by the patient. I mentioned how confusing it got at times with so many people telling me what to do or not do. I told my inner boss story about being empowered again to take control of my own healing process instead of surrendering it totally to others.
I talked about what each doctor had done that was helpful and then shared the one story about a particular doctor that could have devastated another patient who had not fully heard the surgeon say from the beginning that there was no surviving this cancer. However, his statement that I would be well at the end of chemo, rather than in reality, have cancer that had metastasized, was shared with friends who then had to deal with the painful truth that I was no longer cancer-free.
The audience was attentive and a couple of excellent questions were asked. The topics ranged from how exactly did the surgeon balance honesty and compassion to had I changed how I was living now that I knew my prognosis. The conversation hopefully was helpful in forming kind, gentle human-doctors. Many of them seemed that way already from how they listened to me with respect and interest. I love that this type of event happens for them.
I knew I had to open a piece of my soul for them for this to be of benefit. Being vulnerable gets easier in this process. As I said to one of the other patients, I have stopped apologizing for crying and she should too. There is no shame in my emotions, given all that I have been through. I like to be transparent at the best of times and so I hope that people could see right through me to the heart of the matter of what patients need from their physicians.
What would you say to a doctor about what patients need if you had the chance?
Have you ever made yourself vulnerable for a good reason?
Great Physician, how would you have us heal one another? Speak to your earthly angels and healers and let them know what it is that is required of them. Amen.