SoapBoxVille 2.0

I picked up a cancer magazine while I was at my art class yesterday. I just sat down to the read it and the nonsense I read infuriated me; bits about giving oneself a pep talk and a life coach writing about how the way stress affects executive function explains how so many people can just ignore their oncologist’s healthy living advice. Wow! Thanks for the helpful information. I’m overjoyed that all I need to do is eat veggies, exercise, and tell myself how brave I am and I’ll be just fine and dandy.  Really? I’m going to leave my fury at the idea that patients ignore advice for another time, I’ve had brain surgery twice and one brain biopsy, my neurosurgeon frowns on my banging my head on my desk.

Why is it everything I read in any of the cancer publications I pick up everything is light and fluffy? Cancer is not light and fluffy. Cancer is lifechanging and deep, very deep, your entire existence is rocked. Cancer isn’t once and done. Cancer is months, and in my case, years, of surgeries, and treatments, and scans, and doctor appointments. Cancer isn’t for the faint of heart. But, cancer doesn’t just strike the best and the brightest and the most able to cope with huge life and medical setbacks. And, if you listen to the nonsense in the media and on the Internet, cancer only affects slothful, lazy, gluttonous people who lack the willpower to eat a balanced diet and exercise. But, that’s all just fear, fear that they too can one day be diagnosed. They need to marginalize us in order to keep believing they are immune to the worst-case scenario because they are somehow better and more disciplined than we are. Cancer is an equal opportunity disease and not everyone who is diagnosed is capable of looking in the mirror each day and telling themselves they are so wonderful and brave and strong that they can and will fly thought this experience if they just show up positive every day. If you think that slogans and positive affirmations are going to save cancer patients’ lives stop reading here.

Why is it that all of my knowledge and comfort and support came from other cancer survivors who’d traveled down this road before? Why aren’t mental health resources part of every cancer treatment plan? Why in all the literature published in cancer publications there is there no depth? Cancer patients and cancer survivors and their caregivers need more than catchy slogans, positive quotes, and advice to eat their veggies and take a walk each day.

We need more, we need the breadcrumbs our fellow cancer patients/survivors/caregivers leave behind for us to follow. We need more depth in the writings meant for us. We need integrated care and treatment. I’m eight years into this journey and possibly facing cancer for a third time. I spent an all-too-short year watching my husband die from this monstrous disease.

Save your platitudes and slogans, I need your voice. I need you to tell me your story. Tell me how you felt. Tell me how terrified you were and still are. Tell me how you got here and what got your through.

Doctors, we need more than five minutes of your time once a week during treatments and every few months afterward, we need more from you. Cancer centers, we need teams. Survival is in fact insufficient. We need physical therapists, occupational therapists, psychotherapist, art therapists, we need nutritionists, and knowledgeable pharmacists to explain all the drugs we are putting in our bodies before, during, and after treatment. We need someone to explain to us what we are about to face and are facing and the consequences of our drug choices. And, cancer publications, you need better writers and better content. We don’t need fluff, we need substance and you should be the leading purveyors of said substance.

Why are all the stories in these publications about shiny, happy survivors who had one surgery, one round of treatment and are already back to work saving the world and making sure their kids and pets have three square meals a day. You know, I never understood when the breast cancer community was angry about the lack of public faces and voices of metastatic breast cancer patients. I didn’t understand why it mattered, but tonight I understand. Reading that that nonsense about looking in the mirror and telling yourself how strong you are and the eye roll worthy advice about changing habits from the clueless life coach made me furious.

There’s so much suffering, and fear, and uncertainty in being a cancer patient/survivor/caregiver, but those voices are almost never out there in the media or in cancer literature or publications. They are on the internet in blogs like mine, and in support groups, and in homes and hospital rooms the world over, but they are not out there for the masses and the newly diagnosed or those in every stage of the journey, they are not out there for everyone to read and digest and help make sense of what is going on and what is happening to them. Do you not publish and publicize all the really bad, really scary stuff because you think you’re going to scare us or we’re going to break? You’re wrong. We’re enduring extensive surgeries, losing parts of our anatomy, allowing dangerous chemicals to be pumped into our bodies hoping the poison will save our lives, and having doses of radiation shot into our heads praying this time it’ll finally eradicate the tumor. We aren’t going to break. In fact, it’s isolating not understanding there are others out there scared, afraid the treatments won’t work, or the cancer will come back yet again, or wondering what these lifesaving treatments are doing to the rest of our bodies. Damn it, we need more. We need depth. We need knowledge. We need strong voices telling their stories. Save the fluff, give us substance and a voice.  We deserve so much better.