Today I am speaking at the University of Vermont College of Medicine about my work with Less Cancer and the policy, outreach and education changes that are needed to prevent this wicked disease.
First, I think we must be honest with how we use and peddle the word “hope” in the cancer conversation.
Like the countless millions of individuals across the country, I grieve for the many personal losses I have had from cancer. I have had five people in my family to die of cancer just in the small network of my mother, siblings, and their immediate family members. I know firsthand what the disease can do to cancer victims. I jumped into the work for Less Cancer not so much as a well-planned choice, but rather as following my instinct, reflexively responding as many would have who witness an anyone in distress. I felt I was on a life-saving mission. Our work is to get people out of the way of the runaway train called cancer, not to treat the wounded after it crashes.
The work for Less Cancer, in the most simplistic terms, is about being a life preserver, avoiding the need to jump in to save a life.
Despite the many messages of “hope” for treatments and cures, we live in a world of more cancer, not less. The manufactured messages of hope, with colorful copy drafted by marketing experts, paid for by the pharmaceutical and cancer treatment industries, offers hope only for enduring chemotherapy or other horrible experiences, in the name of becoming that vaunted status – another ill-defined term — “cancer survivor.” We hear about living with cancer as if a new friend or pet.
We are in a “war on cancer,” and the money-making cancer industry talks about never giving up hope. I want to know to what end we should have that hope. We don’t have to give up hope, but we need to communicate honestly about cancer.
I am frustrated because I just do not see the current system working. That being said, of course, I still hope for successful treatments, and I want everybody who is suffering to be able to have hope. I still am one of those people that believe miracles happen all the time. But the real odds of beating the disease forever are very slim.
I have had a couple of rodeos with health: I am Schwannoma survivor, a benign nerve sheath tumor that had to be removed. When I was first diagnosed, I had issues with immense pain, falling (mostly down stairs — ouch!) and even had problems with walking (as I sometimes do today). I remember once getting stuck in the middle of a field not knowing how I was going to get back. After about 8+ hours of surgery and several month of recovery, nine years later I still suffer symptoms. So my point in sharing is that I am glad there was treatment, and I was glad I understood that there were no miracles, no tricks. I am not dismissing treatment, but rather the advertising spin of treatment where everyone but the patient seemingly has so much to gain financially.
When we hear about “survivors” in cancer, we think someone that has been treated, cured and moved on. That is simply not the case. According to National Cancer Institute, Division of Cancer Control and Population Studies:
“An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
Because a patient suffering the brutal effects of chemotherapy is hardly in survivorship mode in my eyes. I have been with loved ones suffering the effects of chemo and found myself telling them it will be OK, knowing that I might not be telling them the whole truth.
So the hype actually for the cure is all about millions of people in cancer treatment is the real definition of survivorship.
I have seen cancer blow up families, who often wear the shield of anger to protect themselves from more sadness. Cancer is frustrating for those families who are left behind they more than anyone need continued prayers, support, love and a special understanding.
We must be real about protecting society from cancer: educating the masses on health and protecting the public from harmful and toxic chemicals found in the environment, foods and in consumer goods.
If we are ever to provide real hope for the next generation, we must do all we can in protecting them from the escalating incidences of cancer, protecting them from ever depending on treatment options called “survivorship.”
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