I was approached to join the newly created Adolescent Young Adult Task Force, an initiative of the Canadian Partnership Against Cancer (CPAC), during the summer of 2008. It came at a time when I was stepping away from most of my volunteer activities to keep some balance in my life, reduce travel, and focus where I should be focused, on Young Adult Cancer Canada (YACC) and the young adults we serve.
However, it was an invitation that I could not refuse.
The task force is focused on creating recommendations for the management of adolescents and young adults (AYA) with cancer. While not explicitly stated anywhere, we are working to fundamentally change the way Canadian health systems handle AYA when they are diagnosed with cancer.
From March 11-13, 2010, the task force will host a workshop in Toronto for about 100 people connected to this cause. There will be experts from around the world presenting on various topics and the three days will engage participants in everything from biology to survivorship. The first two days will be focused on management of patients/survivors the third will be focused on research priorities.
For the past year and a half, I’ve done my best to represent survivors on this evolving initiative. It is at times a lonely pursuit as I remain the lone survivor voice at the table, but we are at the table.
Now it is time to invite more people to “dinner” to complement the very committed group of health professionals who join me on the task force. Although I pitched having 50 per cent of the workshop attendees be survivors we settled on 25 per cent. We have agreed to break these down into three equally represented groups:
- Pediatric patients who are now AYA survivors;
- AYA patients who are still AYAs and within two years of treatment; and,
- AYA patients who are still AYAs but are further than two years from treatment.
YACC has been asked to recruit survivors for the second and third group.
It is a tough job. Not to find them but to narrow down the invitations. In addition to the time of diagnosis and age at diagnosis, we also have to consider type of cancer, gender, and geography to name a few factors, as well as occupation. It is all in an effort to ensure we have balanced representation. This also means that we can’t invite all of our favourite survivor buddies.
Some will get invitations starting today and then based on numbers we’ll be able to add a few more to the list. Regardless of who shows YACC remains committed to ensuring that the voices of survivors are heard and will keep you posted on workshop planning and other opportunities to share your perspective with us so that we can represent it at this workshop and all future activities of the task force.
Live life. Love life.