One of the biggest challenges we face as AYA cancer patients and survivors is getting our voice heard. If we’re treated in pediatric settings, communication is often directed to our parents or guardians, so we often lack the opportunity to speak out. If we’re treated in adult settings, we aren’t always prepared with the communication and negotiation skills to be able to speak out, even though we may be given the space to do so. We’re in this strange no-man’s-land.
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One day last week, I came home from work and spent the evening relaxing until my fiancé came home (he’s a chef so he came home about 6 hours after me)…I was just sitting on the couch watching something on Netflix when he walked in the door with a totally annoyed, borderline angry look on his face. I assumed maybe he had had a bad day at work, but instead he proceeded to scold me for leaving my keys in the lock of the front door. “Luckily we live in a safe building but you can’t do that Clarissa, you have to pay more attention!” My honest response: “I literally had no idea I had done it and had 100% remembered bringing them in with me, sorry!”
A cancer diagnosis, the treatment process, and the transition from cancer patient to cancer survivor brings a host of challenging changes with which AYAs need to deal. In the midst of these challenging changes, AYAs are trying to grow up. This combination of changes and transitions makes it critical for parents and guardians to be aware of how important communication is, and how necessary it is to consider the needs of AYAs, as well as what will be most beneficial to AYAs’ development, when communicating.
Long before I became a pediatric oncologist and physician scientist, I was introduced to cancer on December 26, 1989, at age 16. On that day I was diagnosed with Hodgkin’s lymphoma and my path in life was changed forever. My doctors told me my outlook was good, and as a result I rarely contemplated death. I looked forward to the day the horrific chemotherapy treatments would be over and counted down the days.
Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians
Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents. This was the first osteosarcoma conference of its type. For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air. Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more. The agenda was amazingly and stressfully jam-packed. The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community. The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.” I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference. And thus, welcome to Miami circa February 2017.