Ok, I’m not the patient you would wish for as an oncologist.  I guarantee you I did not choose to be an oncology (cancer) patient.  It’s not like going to choose a gynecologist who will deliver your babies, nor even a dentist or root canal specialist.  

No, you are someone we go to in the worst of times, never in the best of times.  For this, the psychologist in me has great empathy for you.  After over 26 years of working “up close and personal” as director of the neuropsychology unit at Shaare Zedek Medical Center here in Jerusalem, I have a read on various medical professions.  They each draw out the strengths of those who have chosen, or whom fate has chosen, to their specific specialties.

Most fields require at least minimal patient interaction. Once the physician has done her or his “thing,” the patient is released and then is free to roam the earth.   Not so oncology patients, who immediately enter into a lasting relationship with their oncology doctors, who will always be on their minds. That relationship may be better described as one of protector and protected, rather than doctor and patient.

For the most part, in my experience as both an observer of human behavior and a patient, the emotional needs of this relationship are unique. To succeed, it needs to be respectful and wary, friendly but correct, close but appropriately distant. Doctor and patient are simultaneously attracted and repelled by powerful needs that converge and compete for dominance in the relationship.

Surely there will be better days and worse days when you or I will share information about me.  On the one hand, who would not want to be the main topic of conversation?  As a psychologist with over thirty years of professional experience, I have had many patients for whom just being the main topic of the conversation is intoxicating. 

I know I am annoying, maybe because I read the same professional journals and weekly updates that you do on my type of cancer.  I know I ask you many questions and send you numerous emails and text messages, but you said that I may.  I also accept that you won’t respond to all of them, since you also warned me that while you would try to find time to read them, I should not expect a response unless the query relates to a dire situation.

Ok.  During and after the first round of surgery, chemo, medications, blood transfusions and radiations, I began to express annoyingly difficult opinions.  As in, “maybe this medication is giving me some side effects that might be reduced by using this other medication.”  Or possibly, “the chemo seems to be killing my immune system and not really the cancer, as, surprise surprise, I seem to have ‘made’ a new tumor while on the chemo. How about using radiation instead for a second (and third and fourth) time, as that seemed to have knocked out the mean buggers for a longer period of time than the chemo the first time you recommended it?”

I know that oncologists ‘do’ chemo, radiologists ‘do’ radiological interventions, and surgeons ‘do’ surgery, but maybe those two latter options seem to work better for me than the chemo?

I notice that you want to recommend doing chemo on a tumor that was stumbled upon and then quasi-diagnosed by a CT scan. As someone who works in Traumatology, I noticed that my reactions were similar to those of a person with PTSD (Post Traumatic Stress Disorder) when I felt the same sensations that preceded my initial diagnosis, even though all the current blood work and tests came out dandy. 

I’m sure it was also quite annoying when I turned down doing chemo to shrink the tumor the CT found before operating, and when I insisted on the PET (Positron Emission Tomography) which I paid for privately because of my insurance company’s weird policy of not paying for this expensive test unless it finds something.   We now know that the PET proved beyond a colorful shadow of a doubt that there was indeed a dangerously large tumor, vague CT findings and negative blood test results notwithstanding!

I know that I haven’t had years of medical school and done years of internship and residency in oncology, and haven’t seen hundreds (if not thousands) of patients, but my limited logic forces me to ask: “How could reducing my immune system and weakening me with chemotherapy and then doing surgery, albeit on a tumor that has been reduced in size, be better than finding an onco-gynecological surgeon who would be willing and able to operate without doing the chemo first?!”

Ok, I have a systemic disease  in which the bad buggers have invaded my whole body in microscopic forms. I know that treating it like a veritable Dutch Boy with putting his finger in the dike each time it sprouts a leak may not be “medically sound.”  However, the patient in me might be able to fight on for a bit longer and stronger without the tumor rather than with a weakened immune system and a smaller tumor before being surgically removed.

I know that my gallows sense of humor is annoying, but if you are in the gallows, what other sort of sense of humor would you find more appropriate?

All this is true.  But try to understand how sad and disappointed a patient can get in the face of medical and paramedical professionals whose job is to help a victim of a heartless disease, when that patient has the temerity NOT to listen to the lofty opinions of those professionals. Imagine her reaction when she tries to exercise not only her body, but also her mind, only to find out that those selfsame “helping professionals” are really angry at HER!?!

Yes, I do respect you and your knowledge, and yes, your vast experience with many oncological patients; and yes, as annoying as I may be, I have only one cancer patient, ME! And believe me, and don’t forget it, I will fight to the death for her!

Author’s note: I have been treated in large cancer centers in the U.S. and Israel and am on the American Cancer Society's Cancer Survivors’ Network, a wonderfully supportive and informative ListServ. My experiences as a self-advocate are not in the least unique to me here in Israel.