CARE GUIDELINES, CAREGIVERS, LIVING WITH BREAST CANCER, METASTATIC BREAST CANCER, POST-TREATMENT, RETHINK PROGRAMS, RETHINK YOUNG WOMEN'S NETWORK, THE PSYCHOSOCIAL
The Psychosocial: A story is not just a story
By Shawna Rich-Ginsberg November 1 2016
Psychosocial support for those with cancer and their loved ones is in a good place. It’s a strange thing to hear myself say because no one wants there to be a need for such things. But as long as there is cancer, there is a need.
Today I am reflecting on BCAM (Breast Cancer Awareness Month) which came and went as fast as lightening and thinking about those with cancer and their loved ones. One month is certainly not enough time to bring focus to the reality of what they are living with every day, and they need constant support and care that speaks to their needs, but also evolves with those needs.
I can proudly say that we’ve come a long way baby in supporting young people with cancer and their loved ones. And by we, I mean Rethink along with our volunteers, professional partners and our friends in other organizations with a similar focus.
There have been many changes and advances in this area and like a parent who grows with their child, support for young adults is growing with the changes that are happening in oncology but also in the way humans relate to one another.
In general, there is much more awareness that young people can and do get cancer. There have been organizations popping up all over Canada and the US that are helping to spread awareness about their unique needs, provide tailored support and educational tools personalized to them. There has also been a boom in psychosocial research looking at support and future patient outcomes. This is huge because for many years’ healthcare specialists weren’t acknowledging the fact that the trauma of cancer can impact a person’s quality of life for years and years to come. When you are in your formative years of developing your relationships, career and family living with the lingering effects of cancer can be debilitating.
These days people have their pick when it comes to finding their cancer tribe. There are adventure retreats like Retreat Yourself, conferences like YSC Summit, yoga retreats like Stretch Heal Grow and there are spiritual experiences like the retreats offered at Callanish Society. A little something for everyone when it comes hanging out with people who are walking in your shoes.
The days of talking to someone your mother’s age about having cancer are over. Everyone needs cancer friends and peer support is crucial. Not only is it being recognized as a form of therapy by the medical world, peer support programs have evolved by matching people up specifically by age and more importantly, stage of life. There is noting more powerful then speaking to someone who can identify with what you are going through and live it with you.
When Rethink decided to forgo front-line programs to offer online connection and community I never imagined how powerful it could be to have women share their stories. There has been a huge shift in the young adult cancer world to online support because that’s where young people are, but first person cancer stories are serving a greater purpose then connecting people to the cause and helping those newly diagnosed navigate the world of cancer. Blogs, video and online community forums are the newest in self-help models for a younger generation. Story-telling is nothing new in helping people cope with trauma, but a public facing confessional is a great way to crowd source the support you need when you are going through the most difficult time of your life. In some ways it can also authenticate your experience and as the writer Teva Harrison said, “make the dark places less scary.”
Reliving with metastatic cancer
One of the biggest changes to occur in support for young adults with cancer is the incurable cancer movement. I call it a movement because it is a force when you are talking about people like Anna Craig, Judit Saunders, Michelle Riccio, Jasmin Fiore, Emily Drake, Teva Harrison, and Lori Marx-Rubiner. These women are putting themselves out there and advocating for the unique support needs of young adults with stage 4 cancer. Why? Because their reality is different and the conversations that they may need to have are not the same as someone who is “done treatment.”
They are leading the charge so that organizations like Rethink, Cancer Fight Club, Metavivor, YSC, LBBC and many others can create programming, resources and tools specifically for those living with cancer for the rest of their lives. And thanks to the Holly Kitchens of the world, they are also doing it well beyond their days with us and reminding us that we have a long way to go.
Special shout out of thanks to all of the women and their families who have shared their stories, volunteered their time or given us their thoughts on how to better serve those with cancer. We couldn’t have done any of it without you.