Survivorship
HOPEspotters:
One of the things I am proudest of on my life resume is the bullet point that belongs to cancer survivor. I’m proud of this ascription, not because of all I did to make that possible - that was really all done for me -but because I know survivorship is a privilege and I’ve tried to use my experiences for the powers of good.
I’ve been a cancer survivor for 32 years, so I am more experienced in this role than I am as a nurse, a wife, or a mother. As a teenager, I was embarrassed by the title and the attention that came with it. I also understand the role of daughter of cancer survivor (both parents) and sister of survivor. As a professional nurse, I am grateful for the insight and empathy I believe the experience has provided me.
I also understand that my cancer diagnosis was not likely fatal, which eliminates a lot of fear. (I’m not sure my parents felt that same comfort at the time of my surgery and treatment.) Additionally, I am clear that my diagnosis was extremely unusual for my age: unusual has brought with it a lot of uncertainty.
I’m tight with survivorship and the benefits and responsibilities, freedoms and fears that come with the “award”. Someday, in fact, I hope to write a book on survivorship. Personally, I find the experiences of survivors - young and old- both positive and negative - fascinating and important.
I have always said throughout my cancer experiences I was blessed with: knowledge, advocates, and outstanding family support that included financial resources. It has never been lost on me the fear that newly diagnosed patients must feel that don’t have that trinity of power in their back pocket.
Today, however, I want to share with you a letter I’d like to send, one of the many I’d like to have sent over the years. I write these never to be sent letters because as an adult survivor and as a healthcare professional, my biggest sadness, shock, frustration has been the black hole that survivors get dumped in, all the time screaming, “what next?”
Recently, I had a CT scan. Six days ago to be exact. The purpose of the scan was to assess the status of my lungs as compared to the last CT scan five years ago. To be clear, I don’t go through life afraid of what might happen next with my old and probably harmless thyroid cancer remains. I’m far more scared of a new and livelier cancer and my job can feed that fear each and every day. But I have this annoying voice in my ear, that I call common sense, and it says, “you have to follow up, Jenny. You are a mother, Jenny.” So I listen and I hunt around to find a doctor that has seen “people like me”. And I take the time and spend the money and ask for the scan because it seems like the most prudent thing to do.
Dear Dr. X:
I am (imaginarily) writing to you to determine if you have received the results of my CT scan from last Wednesday.
Before I explain to you my disappointment over not having had any contact from you yet, I’d like to “catch you up” on the events of my “CT SCAN DAY”. (I like to write it in all caps and pretend it is a holiday since it cost me $2700 -out of pocket.)
I saw you in your office two months before the “big day”. You repeated what we both knew. My cancer, at my age, was unusual and there’s not a lot of research that you know, if something changes. I suggested we do a CT scan to see if anything had changed and you agreed. (I really don’t like calling the shots).
I waited two weeks before asking your office where my CT orders stood. I was told you didn’t feel like it was necessary. I asked why and then I was told you would order the CT. (Confidence level: ZERO.)
I’ll spare you the details of the hospital’s failures on my big $2700 fun day. (That’s a different letter for them). What I will share with you is this: no one asked me why I was there, what problems I may or may not be having, or why I was having this study.
Having been diagnosed with lung metastasis in 1985, I’ve had A LOT of CT scans. We’ve discussed the peculiarity of my situation. Every CT study I’ve had has taken 45 mins or more. This study- on my big fun $2700 day- took 8 minutes, with and without contrast.
Dr. X, either they didn’t do the study correctly or you didn’t order it correctly. I wouldn’t know, however, because you haven’t called me. At all.
Dr. X, I may not be a doctor but I understand the difficulties of responding to multiple acute patients. I understand triaging responses. Your silence, regardless of how insignificant you see my study, is inexcusable.
Because here is what I know about you now, Dr. X, with absolute certainty. You don’t get it.
You. Don’t. Get. It.
And I don’t want anyone who doesn’t get it anywhere near me.
Please send me my records. Please accept in exchange my best regards that neither you nor a family member of yours receive the negligent care that you offer, in a time of need.
DO YOU GET IT? This, I believe is the question that sits in every survivor’s heart. Pride and fear keep it from passing their lips.
Do you get it that my left thumb is tingling and I have NO explanation for that but I am only one year out from colon cancer treatment and I am scared out of my mind?
Do you get it that my spouse has ceased to see me as an attractive viable partner and now doesn't ‘want’ me because I’m ‘sick’? How do I handle this?
Do you get it that I am an extremely reasonable and logical woman but it feels WEIRD that you bring me in for breast cancer follow up but we just talk? Do you have X-ray vision?
Do you get that I am ashamed by my anxiety because I am strong and capable? What do you expect for me? PLEASE don’t make me ask.
Do you get it? Do you get It ? Do you get It? DO YOU GET IT THAT I AM TRYING TO KEEP MY COOL AND BELIEVE I AM OK AND UNDERSTAND WHY THE FUCK WE ARE NOT RUNNING ME THROUGH A FULL BODY SCANNER? YOU SEEM CALM. I WANT TO SEEM CALM. BUT LOOK AT THE GOD DAMNED OBITUARIES. IS IT ME? WHY AREN’T WE GOING HEAD TO TOE?????
As survivors we will never forget the moment we were told, “you have cancer” or “your results were atypical” or the mother of all cowardess, “your results weren’t as positive as we hoped” (WTF.. did you want more positive malignant cells??)
I told my super sage sister recently that I plan to buy a beret and a black turtleneck so that I can look legitimate starting a revolution.
A revolution begins when people feel unheard and under represented. Cancer survivors could accrue in the millions to take up this cause. I certainly don’t have all the answers but life has given me explicit familiarity with the questions.
Why do we, as survivors, feel so unguided? How do we, as survivors, streamline common sense with present medical protocols. And finally, how do we continue to support the survivor community and learn from them?
Survivorship is undoubtedly a blessing. Many are denied the privilege. With it comes responsibility and most survivors I know, understand that. Cancer robs us of many things - innocence, naïveté and, frankly, acceptance of bullshit. My army of survivors doesn’t have a lot of time for platitudes or protocols or just because’s…
Sadly, I don’t yet feel in 2018 that we are truly winning the war on cancer, but I can’t deny there has been progress. One of the ways progress is best seen is in the growing numbers of survivors. People who have battled- fiercely- while terrified- but have heard the words “you are in remission” or “we believe you are cancer free”. (Movies will depict these proclamations with violins and crescendo music, but the fact is most doctors mumble these words because even they are scared to say them out loud).
My imaginary letter to my doctor is admittedly angry but no less than a call to action for the army of survivors. Here is my letter to them:
Warriors:
God bless you for your struggles. Praise God for remaining in the population that could receive a letter to survivors. Too many were denied the privilege.
Please take on the responsibility of survivorship. That responsibility includes continuing self care, following up on your status in spite of how scary that is, inspiring those in the battle and advocating for better ways to care for the army of “us”- survivors.
We are unique. We are blessed. We have battled. We were scared.
And when you meet Dr. X, and his colleagues, remind him that we make them look good. They owe us care and attention and more than “you were lucky”. We are entitled to understanding of our difference and celebration of our second chance.
Most importantly, we, Survivors, pray there will be more like us and none like the alternative. No matter what.