I had the privilege of meeting with some young men who are working on a social media awareness campaign to help women with ovarian cancer. As a survivor, I was asked to join many of the other women in our group to talk with them about our experiences and needs.
A unique aspect of ovarian cancer is that it has an extremely high recurrence rate. It is now viewed as a chronic condition. Most often, once a woman has recurred, she will be on some type of chemotherapy for the rest of her life. There are numerous alternatives being studied, so this might change, but for now, ovarian cancer is considered chronic.
I don’t remember what question I was answering, but I told the story of my family telling me what I needed to change going forward. These included giving up all sugar, going vegan, maintaining an optimistic attitude, using tumeric , etc. It felt like a relentless onslaught of unsolicited advice.
The 1st one came from my mother. We were taking a walk and she said “I know you don’t want to hear this, but I’ve been told by a friend of mine who works on the board at John Hopkins that sugar causes cancer. You have to give up up sugar”. This was early on my cancer trek and I hadn’t done a lot of research, but I did know a few things, one of which is that sugar does not cause cancer. This belief came from the fact that PET scans utilize sugar molecules to light up potential tumours. The tumours aren’t created by sugar, but they are greedy, so they suck up sugar more quickly than other parts of our body, leaving themselves exposed to the rays of the Pet scan.
As I have learned, correlation does not equal causation. My brother, whom I adore, decided being a vegan would keep me cancer free, based on The China Study. This book was written by a scientist who studied a cancer free community in China, and leaped right over correlation to causation. According the his ascertations, it is diet, and diet alone, that keeps these people cancer free. The scientific community has scoffed at his assertions, but for many they remain attractive.
It is comforting to believe you know what caused my cancer. If you know what caused me to get cancer, you can take steps to prevent yourself from getting cancer. I understand that. I might have reacted this way had it been my sister and not me with the cancer. As it was at the time though, I was really, really hurt.
Here’s what I heard: “you did this to yourself by eating too much sugar, and don’t come crying to me if you keep eating sugar and it happens again”. Ouch.
It is hard enough trudging through a cancer diagnosis, let alone having to carry with you the belief that you caused it yourself. As the “suggestions” kept coming I became angry. I knew enough to know that no one could say why I had cancer. It was a cruel twist of fate. If you doubt me, I invite you to join me when I participate in Survivors Teaching Students. In this group of women we have a woman who was diagnosed at age 16, another in her mid 30’s, me at 51 and a group of women over 60. There is no common thread between us and our stories. We aren’t all sugar addicts, or type A personality, or raging meat eaters. There are great attitudes and terrible attitudes (mine leaning towards the latter!). We are all so different we would not be friends were it not for our common bond of ovarian cancer.
Back to the meeting.
The researcher asked me why I thought people had bombarded me with their cures and assessments. I answered how I’ve always answered: people think that if they can pinpoint why I got cancer, they can prevent it in themself. It gives them a feeling of control over their own fate.
I was met with disagreement. Loud, vocal disagreement. From all of the women there. Hmm.
It was unusual, because we have spent a fair amount of time together, and we usually think along the same lines; we usually agree with each other. They disagreed, stating that they thought I had been offered these suggestions by people who loved me and wanted to fix me, make me better. They were an attempt by the people who love me the most to help me survive.
I had to think about it. When I am the lone voice in a group I usually agree with, it’s time to take a look at myself.
I was raw, for lack of a better term, during my diagnosis and treatment, so there was no way I was receptive to any suggestion. I was in survival mode, and I was taking advice only from those in the foxhole with me. And yes, I resented those who had not walked in my shoes telling me what to do. I had doctors, nurses, and women who have the disease telling me what to do. That was enough. They understood what was happening to me, physically and emotionally, in a way the non-affected will never understand.
After I finished treatment, and in the 3 years since, I have continued to believe that these suggestions came from a less than honorable place. I have maintained my feeling that these “cures” were given to me as a way of the giver feeling sure she/he was doing what needed to be done to avoid my fate. In fact, my brother still maintains a vegan sugar free life style!
Alas, I now have to wonder. Were they simply trying to fix me? Were they so horrified at the thought of my death that they were honestly convinced they had stumbled upon the cure, and they couldn’t wait to share it with me? In other words, were their suggestions sincerely meant for me?
This is hard for me. My family of origin is very judgmental. They are quick to point out flaws, less speedy to dish out the positives. The truth is that I am excessively sensitive. I was born with an over grown sense of sensitivity, and my life experiences enhanced this sensitivity to a level of paranoia. What should be a positive attribute has become a fatal flaw in me.
I’ve been working really hard to leave my emotions at home. In other words, I’ve been trying to step back from situations and see them with my intellect – to see them as if I am watching a movie. I often find that the way I perceive a situation without my feelings is very different from the way it appears when my feeling take the lead.
Lest you protest, I am not disassociating. I have spent a life time unknowingly disassociating because I’ve led with my feelings. My feelings have led me astray. It’s as if my feelings have become an angry toddler, stamping their feet in frustration regardless of the situation. Now, I am re-parenting my feelings. Or, trying to reparent them! I’m trying to set them aside for a moment, use my intellect to evaluate the situation, then direct my feelings to follow, rather than lead. And, if I am to be 100% honest with myself, I need to reevaluate my feelings in reference to these suggested cures given to me by those who love me. Perhaps they came from love, not control.
My father often says reality is 9/10ths of the law. What we believe to be true is true. What I now believe is that I have allowed my feelings to rule the roost, so to speak. This would be great, if my feelings were mature, but they are not. It has been these adolescent, raw, susceptible feelings that kept me stuck in a terrible marriage for 25 years. It is these uneducated, out of control feelings that have unknowingly done more damage good
I feel sad for them. I feel sad for this large part of me that never got to grow up. I also find it somewhat amusing, because I’ve spent a fair amount of time teaching my children to merge their feelings with their intellect, to prevent inappropriate reactions. Funny that I missed this in myself!
Will I be able to help them grow up? I have no idea. I’ll keep you posted though.