Part 1 of the AYA: Australia Series
If you weren't following @RoadTripAus15 or #RoadTrip15 in December, then you were missing out on hearing about the fantastic work that was happening Down Under at the Inaugural Australasian Youth Cancer Summit, hosted by CanTeen (@CanTeenAus, www.canteen.org.au) and the Youth Cancer Services (YCS). The Summit's theme was Road Trip and I was honoured to have been an invited writer to this first-of-its-kind event, held in Sydney, Australia. Here are ten things you should know about the Summit:
1. Young Australian cancer patients can receive specialist, age-appropriate treatment and support through the Youth Cancer Services, which receive Australian Government funding through CanTeen as well as state and territory government funding. Find out more at www.youthcancer.com.au
2. Chaired by 23 year-old Keifer King, the Summit's Organising Committee (Road Trippers), put the program together to ensure the event had a mix of information, support and fun. The committee consisted of young cancer patients/survivors, parents, partners, siblings, CanTeen and YCS staff, and other community support agencies. For the list of all the members, please visit: http://www.youthcancerevent.com.au/summit/Meet-the-Road-Trippers
3. Peter Orchard, CEO of CanTeen (@porchard1), said, "the main purpose of the Summit was so that people would share with each other that really confronting experience that cancer is in their lives and at the same time have the opportunity to hear from health professionals about ways of dealing with some of the big challenges that cancer brings up". The event was designed to bring together young people and families; so the summit had offerings for young patients/survivors (12 - 25), siblings, partners, parents and healthcare professionals.
4. The master of ceremonies for the event was Luke Ryan (@lukeayresryan; lukeayresryan.com), a talented comedian and writer. Luke had cancer at both 11 and 22 years of age, and is the author of, "A Funny Thing Happened on the Way to Chemo".
5. During the opening ceremonies of the event, a preview of the Digital Care Pathway was presented by Mark Haseloff and Dale Kim. The pathway is an online resource that contains numerous videos of young cancer patients and survivors from across Australia sharing their personal experiences with cancer. The videos span the numerous issues that young people living with cancer face and include physical, psychosocial, emotional and financial wellbeing, education, fertility preservation, spirituality, side effects of treatment and more. Interviews from YCS clinicians are also included in the resource. The pathway will be launched during 2016 and a preview of the resource can be found here: https://www.youtube.com/watch?v=QgECK0P9SMs
6. Sessions included relevant and important topics related to young people living with cancer. Highlights included:
o A talk on how to find relevant health information by Dr. Leonard Sender Director of Pediatric, Adolescent and Young Adult Cancer Programs at CHOC Children's Hyundai Cancer Institute and UC Irvine Health's ChaoFamily Comprehensive Cancer Center
o Information just for guys on the issues they face when they have cancer by Dr. Brad Zebrack (@BradZebrack), Associate Professor in the University of Michigan School of Social Work
o Discussion on clinical trials facilitated by Nikhil Autar, cancer survivor, founder of the social enterprise PlayWell and medical student at Western Sydney University
o A presentation on fertility preservation by Dr. Antoinette Anazodo, Chair of the Scientific Organising Committee and Lead Clinician of the NSW/ACT Youth Cancer Service.
For the full program, please visit http://www.youthcancerevent.com.au/summit/program
7. Song Division (@songdivision; https://www.songdivision.com/) brought everyone to their feet and got the crowd going by writing a song with the summit attendees that captured the essence of RoadTrip
8. A cooking demonstration was held by the Cheeky Food Group (http://www.cheekyfoodevents.com/), with a discussion led by Dr. Michael Osborn and Lauren Muir on one of the many challenges that people living with cancer face: how cancer treatment affects taste, appetite and weight
9. Jasmine Gailer (@jasminegailer) of Scar Stories (@Scar_Stories; http://www.scarstories.org/) presented with Kate White on body image and dealing with the change that both cancer and treatment bring. Scars have been found to affect the body image of cancer patients/survivors. Jasmine shed light on how she began to accept her own scars and help others do the same.
10. The Summit finished off with a special concert (and an encore performance of the Summit's theme song) by Song Division, with a guest appearance by Australian singer and Sony Foundation (@SonyFoundation; http://www.sonyfoundation.org/) ambassador, Samantha Jade (@sjademusic).
One of the most important things that the adolescent and young adult cancer movement has worked to do/is still working on is bringing together adolescents and young adults living with cancer/survivors so that they can connect with others who get what they are going through. As mentioned in previous posts, one of the major issues that young people face when dealing with cancer is isolation. When discussing the Youth Cancer Summit, Peter Orchard said, "I think the main highlight for me is seeing people connect with each other. You see a bond form that they might not have had before... That's the thing that really excites me, when we are providing people with something that genuinely makes a difference for them". Events like RoadTrip support these young people and their families; working toward building healthier and supportive communities.
Image was provided compliments of CanTeen