I shared Jessica’s story a year and a half ago here on Paul’s Heart. It was titled “Jessica, The Mermaid That Beat Cancer 4 Times.” She is referred to as a mermaid for several reasons, most notably her love for water, and the fact that she works in water related physical therapy and fitness.
Jessica’s story is a compelling one, as it began when she was just eleven years old, with the diagnosis of Hodgkin’s Lymphoma. You can go through the search engine to read the full story that she wrote herself here on Paul’s Heart.
But Jessica is back, with a new guest posting. Recently, she penned a heartfelt letter to “a doctor”. This letter is written by a cancer survivor, Jessica, to “any” doctor who faces patients like her, myself, and so many others. She expresses so many frustrations that we all have when dealing with doctors who either just are not familiar with our health issues, or unwilling to learn about them. But instead of me explaining the letter, hear it from Jessica herself.
Dear Doctor, ( an open letter from a survivor)
You don’t know me. Yes, you’ve read through my medical records and I suppose you have been shocked, amazed, overwhelmed or rolled your eyes at the immensity of my profile and how difficult it will be to have me as your patient. But you are seeing the diagnosis I’ve had. You are looking at my pathology reports. You have noted all my surgeries and my late term side effects from my four bouts with cancer. But you don’t know who I am. You don’t know how hard I’ve fought and the fears I have had and the many glorious moments I’ve been grateful for nor do you realize the tremendous anxiety I have gone through after endless biopsies and cat scans and blood tests. You don’t know me. You assume that I should just be grateful that I survived. You don’t know that with survivorship comes tremendous overpowering stress. With survivorship you learn to live a very different life, one that can be moment to moment, event to event, doctor appointment to doctor appointment. Maybe I will have three months where I can truly live in the regular world that other humans who haven’t had a life threatening disease live; being somewhat carefree and not afraid of seeing a lab coat or a message from my doctor on my answering machine. You don’t know me.
When I enter your office you come in with my paperwork in hand. You are astute at your craft. But you don’t know how to talk to me. I am a survivor but contrary to your belief “ you’ve been through this before so you should be used to it by now”, you are wrong. Every visit, every test, every “talk” I become more weary. Yes, I am thankful for life but my life is precarious, I walk on a pond that has a thin veil of ice over it. I’m unsure if any step I take will make me fall through and into the murky water. You don’t know me. When you share “ you’re one of the lucky ones, my cousin had Hodgkin’s Disease and her ovaries were fried from the radiation” isn’t something to joke about or light hearted humor. You don’t know me. Giving me pity and saying “ you poor thing, I don’t know how you do it” isn’t what I want to hear as I sit trembling on my the exam table waiting for the doctor coming in. You don’t know me. Hearing you tell me that “ if it was me I would have probably given up a long time ago” makes me feel like a freak and that my fight in your eyes wasn’t worth it. You don’t know me. When you approach me but don’t recognize my pain emotionally you are not being a quality clinician to me so please don’t share with me that you are “doing your best”. You don’t know me. When you enter the room with my life on paper and say “ wow, this is like war and peace”, you make me feel guilty for my survivorship. You don’t know me.
So please Dear Doctor, when you take me on as your patient think a little more about what a SURVIVOR goes through, what it truly means to be a survivor. Your words towards us as a patient should have the same strength in them that we as survivors have to continue with on our journey. You don’t know me, but I’d like you to.
A cancer survivor