Over the past decade, the young adult cancer movement has been breaking ground in providing support and services for individuals under forty with a cancer diagnosis. The Young Adult Cancer movement is important and invaluable. Although many organizations provide excellent, innovative programming there is a big hole in services for metastatic and advanced young adult cancer patients. Over the past two years, since my diagnosis of metastatic breast cancer, I have attended many YA cancer events, programming and conferences.
I was lucky enough to meet Alicia Murchant at one of these conferences. Alicia had advanced ovarian cancer and like me had found that there is a substantial hole in young adult cancer services. I cannot describe in words how meaningful connecting with her has been for me. Until our meeting, I felt like I was in a deep dark hole alone. I would go to YA cancer events and feel isolated and alone. Like the skeleton in the closet that no one wants to address.
Meeting Alicia has made a huge impact in my life. I was no longer alone. Alicia just got it. She understood the nuances in my darkest thoughts and my struggles with trying to come to terms with a stage four diagnosis. Without explanation she understood how loaded accomplishments are and the importance of a creating a legacy.
Alicia has been a long time advocate for young adults with metastatic and advanced cancer and meeting her has ignited my voice and empowered me to become one to. Most importantly my relationship with Alicia has taught me how important community and networks are. A community of people who are going through the same journey. People who are dealing with similar things and just get it.
The problems that exist in Young Adult programming are not owned by one organization alone. For the majority, cancer is a hard bump in the road. One of the significant questions for the young adult population is how to get your feet back on the ground after your life has been turned upside down by a cancer diagnosis. This, for the most part, is a strength and the focus of existing YA organizations. As such, organizations are very good at supporting and inspiring the majority. Saying that, there is still an immense gap in support for those of us who are living with chronic and will one day be terminal cancer. This gap reinforces and leads to feelings of isolation.
The voice of the majority tends to conceal the voice of the minority. More than once I have met men and women, years into their journey that have never met another young adult with advanced/metastatic cancer. I don’t believe that existing cancer organizations purposely intend to contribute to this, but the lack of inclusivity and space for those of us living with incurable cancer contributes greatly to the problem. Feelings of isolated can lead to individuals opting out. Its not necessarily because of the of the differences between the two YA populations. Although I wish my cancer was just a bump in the road it does not harm me to be around individuals dealing with that reality.
There are commonalities between both populations. Our lives are interrupted. Our treatments although different in duration are similar in nature. Segregation is not the answer. Both communities have a lot to give each other. It is also important for the majority to know that you can live with advanced cancer. Metastatic/advanced cancer is not an automatic death sentence. As such, I believe the way forward is through collaboration and balancing integration with specialization.
Young adult cancer organizations need to make a conscious decision in regards to their mandate. To choose to provide inclusive programming and support for the YA cancer community as a whole or to focus on providing support for YA’s who are getting through and beyond cancer. To provide inclusive support, there needs to be careful and detailed examination of what is being promoted, written, developed, acted upon and said. Words have power and meaning and can set the groundwork for change.
First off, the term Survivor needs to be explored. No matter how you choose to define it, it can be an isolating term. The dictionary definition of survivor is as follows: “a person who survives, especially a person remaining alive after an event in which others have died”. The cancer community as a whole loves to use this term. It expresses clearly the cancer experience for the majority of people. Cancer is something to get over, it can be an empowering experience, a catalyst for life change. There is an impact from using that term for people like me, whose cancer experience will culminate with my death. It plain and simple contributes to our perceived isolation. It places us on the outside enviously looking in. It reinforces our tragic circumstances and divides us from our young adult cancer peers.
Terms like ‘living with’ need to be added to mission statements that talk about empowering individuals to move through and beyond a cancer experience. There needs to be space for the metastatic and advanced experience. Dealing with a terminal/chronic diagnosis, goals tend to become centered on acceptance. We strive to develop the skills and awareness to embrace the reality of our journeys. We look to find the best possible way to live full lives within our limitations. Finally we search to discover a way to face leaving this earth with the greatest amount of grace and dignity as possible.
This is hard work. This is almost an impossible task. How can you become comfortable with the fact that in the beginning of your life you are facing the end of your life? This is the dark side of cancer. This is the side of cancer that cannot be faced only through the power of inspiration and positive thinking. Positive thinking is a loaded word. It can lead people to believe that if you embrace and try to get comfortable about the dark side of cancer you are thinking negatively. I believe that YA programming should not be focused on reinforcing the belief that positive thinking is the solution. By focusing on that mantra organizations do a disservice to those of us who are dying.
There needs to be space for the fact that positive thinking is not the only solution. The AIDS movement, which changed the fates of thousands of dying people was not built from positive thinking. Change happened because people were angry. Access to drugs came about because people stood up and said “this is not acceptable”. It is not acceptable that those of us with advanced disease cannot access the drugs we need because of bureaucracy and the screwed up drug trial system. It is not acceptable that many provinces do not cover drugs like oral chemo. It is not acceptable that as an act to save our lives some of us have to go out of country to access up and coming drug trials. It is not acceptable that we are dying.
Empowerment and positive thinking is important but so is addressing the dark side of cancer. Young adult organizations need to decide whether or not they will take a stand with those of us who are dying and living chronically. They need to explore how they can contribute to the empowerment of those of us who cannot get past our cancer experience. They need to help end isolation and take affirmative action towards change.