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Creating Awareness About Cancer Survivorship
Are You a Cancer Survivor?
Seems like a simple question, but ask someone who has been diagnosed with cancer this question and you will get different answers. Then ask people who have not been diagnosed with cancer and you will likely hear other answers.
This is the most fundamental question to ask as we celebrate National Cancer Survivor’s Day today. It is always the first Sunday of June each year.
So, here is the answer: A cancer survivor is a person who has been diagnosed with cancer. At that moment you go into survival mode. Your personal and work life becomes a whirlwind as if it was not already complicated. Now you have to fit cancer testing, treatment, and side effects into your life. You need to physically and emotionally adjust your life. And it can be lonely, even if you have a good support system around you.
There are almost 16 million cancer survivors. Most of them are not aware of National Cancer Survivor’s Day. Why? In my opinion, it is because there is little awareness about who is a cancer survivor and also what is cancer survivorship. Cancer Survivorship is living with cancer before, during, and after treatment. In other words, your life with cancer and beyond it. I know this world. I am a survivor of Acute Myeloid Leukemia and a stem cell transplant, class of 2010.
Oncologists are too focused on curing a patient’s cancer to get involved in cancer survivorship. Other physicians defer cancer related care to the oncologists. So from a medical standpoint, this is the reason why cancer survivorship does not get much play from physicians. Other cancer related organizations often work in silos and as a result do not collaborate enough to create awareness of meaningful services that cancer survivors, their caregivers, and families can take advantage of. This occurs nationally and locally.
Then there is the focus on cancer research. This is obviously critically important. There are so many wonderful organizations and events that raise money for cancer research. However, donors need to realize that little, if any of this money, goes to the people actually living with cancer. It is hard to live with cancer. It takes money and support. If you lose your job, have to cut back on hours, or do not have a job, how do you obtain care? How do you get to your appointments? How do you pay your rent/mortgage? How do you get your kids to dance or soccer practice when you have to have your chemotherapy? Donors should also think about funding organizations that help the cancer survivors live their lives the next time they open their hearts and their wallets.
I can’t fix all of this , but I can make a dent in it. I am president of a local non-profit organization, Survivor Journeys (SJ). Our mission is to help provide emotional and social support for cancer survivors, their caregivers, and families. We have cancer specific support groups, a caregiver group, an adult mentoring program with national ties, and a pet therapy program. We are developing a Young Adult Cancer Survivor group and a Pediatric Cancer Caregiver Mentoring program. We also will be having an Expressive Arts program component starting this summer. We have other ideas in the pipeline. You can learn more at www.survivorjourneys.org.
However, if there is little awareness about cancer survivorship, no cancer related organization can optimally achieve it’s mission. We believe that to create this awareness, we must educate cancer survivors, their caregivers and families, oncologists, primary care physicians, mental health professionals, other ancillary health professionals and the general public about issues pertaining to cancer survivorship. To achieve this goal, Cancer Survivorship 101, an educational event addressing common cancer survivorship topics that are rarely discussed in the medical exam room, is scheduled for Saturday June 9th at the Max’s Tavern Julian Appleton room in the Basketball Hall of Fame in Springfield from 8 am -12:30 pm. This free event will have presentations from nationally known speakers on survivorship plans, late effects of cancer treatment, anxiety and fear of cancer recurrence, fatigue and sleep issues, nutrition and exercise while living with cancer and beyond, and the quagmire of what is disability law. Our keynote speaker, Natasha Verma, is a morning anchor on NBC Boston, and a Hodgkin’s Lymphoma survivor. We will have a brief message from Hoda Kotb of the Today Show, a cancer survivor herself. There will also be local and national cancer related organizations that will be present to add to the educational experience. To register go to www.survivorjourneys.org.
There are many more issues that need to be presented, but this is a start. We want to do this yearly, but we need the community to show us that you want this event. That you need this event. I can tell you this is not being done anywhere else because I am involved in cancer survivorship nationally. A (3 year old) non-profit organization without any affiliation with a cancer center, hospital, or government agency educating the public about cancer survivorship in the community. This is an opportunity to add to the growing uniqueness of the Greater Springfield area. Education is empowering. Creating more awareness about cancer survivorship is the goal.
Jay Burton, DO
President, Survivor Journeys