Wow! How could I let a whole year go by without updating this blog? Well, one of the reasons was that I didn’t correctly post the update I did write in the Fall of 2011. Yikes! After 7 years of learning to make use of the latest computer technology, I am still stumbling. Oh, well! Not to worry.
The important news is that I had a terrific year from March 2011 to May 2012, in terms of meeting my goal of fulfilling my daughter Sara’s dream to “make a difference” in the world of young adult cancer advocacy. All the events mentioned in the last blog – APOS, CAPO, and the “Wrong Way To Hope” cross-Canada Tour – were a huge success. I got to reconnect with old friends and make some new ones! It is especially gratifying to meet new young adult survivors and their caregivers. To these people, our advocacy awareness campaign matters. That makes the traveling worthwhile.
After the successful completion of the WW2H Tour, I arranged to fly down to San Diego, California to present my One Stop Shop: Multimedia Resources for Young Adults With Cancer Poster at the National Coalition of Oncology Nurse Navigators Conference. The theme was “Changing the Face of Cancer Care”. NCONN president and co-founder Sharon Francz and her amazing assistants kept the whole conference going in spite of a 12 hour blackout! As we found our way up and down the stairs (no elevators available!) by the light of candles and glowsticks, I “hugged” up with my old pal, Jonny Imerman (Imerman’s Angels) and met some new members of the young adult cancer community: Ariana Vargas from www.GiveForward.com; Matt Ferstler, testicular survivor and Founder of Single Jingles; Diptesh Patel, Chief Executive of ZarpZ; and Amanda Hitt, who was representing mASSkickers. Great fun! I love the energy of all these incredibly talented young adults who are so passionate about speaking up on behalf of all young adults with cancer.
November found me in Austin, Texas at the LiveStrong Young Adult Alliance Conference, presenting the One Stop Shop: Multimedia Resources poster again (for which I was thrilled to win the LSYAA Poster Award), and also co-presenting a session with Mike Lang on The Emergence of Adolescent and Young Adult With Cancer in Film – Past, Present and Future, to over 300 young adult survivors and organizations at a Plenary Breakfast Session. Mike introduced his new film: Ebb and Flow, and I was able to feature clips from both Chasing Rainbows (with new Spanish subtitles!) and Sara’s Story, Sara’s original documentary from 1998. This turned into an opportunity to close a chapter on the work I have been doing on behalf of Sara for the past 12 years, acknowledging the passing of the torch to the many new filmmakers advocating for young adults with cancer: Mike Lang, our special guest Andrew Jenks from MTV’s “The World of Jenks” and many others.
Recently I was also grateful and honoured to receive an Outstanding Leadership Award from the Global Women’s Summit, for my work on Sara’s behalf. It does feel like something is coming to an end; closure finally achieved, perhaps.
The bottom line: when Sara and I started advocating/facilitating for young adults with cancer 14 years ago, the voices from this community were only whispers. Now, they are at a ROAR. Sara’s work is done! And thus, my work as a young adult cancer advocate is transforming. I think it is time for me to shift my focus, towards the parents of young adults who live and (sometimes) die from cancer. This is another “gap” in the general awareness of the young adult cancer experience that needs to be filled…what is a parent to do?
I wrote my own very personal answer to that question for the Cancer Knowledge Network blog: “To Live or Die or Advocate, A Mother’s Choice”. You can read it here: http://multimed.current-oncology.com/patients/to-live-or-die-or-advocate-a-mothers-choice/. You can also find another part of that story in Anne Grinyer’s latest book: Palliative and end of life care for children and young people: home, hospice and hospital, in which she has quoted an interview I did with her about the end of Sara’s life when I attended the Teenage Cancer Trust Conference in London, England two years ago.
My need to explore this new direction was reinforced when I attended the OMG Summit in Las Vegas in April 2012. Matthew Zachary hosted a session panel including four parents of young adults living with cancer. During the proceedings, a young survivor stood up and expressed a huge concern for her mother, if she was to actually die from her cancer. From the audience I spoke up, sharing Sara’s story with everyone in an effort to show this young woman that even though Sara died, I was still standing 12 years later. I also mentioned that I had recently spoken to Janie Brown of the Callanish Society about holding a one-day retreat in September 2012 for parents who are facing this kind of loss. After the OMG session many of the parents who were in attendance came up to me to say they would love to have the support of such a retreat.
Again, at CAPO (Canadian Association of Psychosocial Oncologist)’s annual conference in April 2012, when Mike Lang, researcher Liane Kandler and I presented a 90 minute workshop called Reel Stories, Real Wisdom: The Use of Film as a Tool, Treatment, Recovery and Education for Young Adults With Cancer, the need for support for the parents of young adults with cancer came up. It seems to me that this next step is really calling me by name, and I need to pay attention to the calling and see where it takes me.
So, you see, there is a pot of gold at the end of the rainbow. I need to explore this new found treasure further. I know Sara would think that it would make for a successful transformation. It also allows me to stay connected and supportive to the young adult cancer community…which I love so much!
I will keep you posted.