For the past 25 years Cancer Support Community Central Indiana (CSC) has led the charge in Indiana to build a vibrant community of cancer survivors and their loved ones, providing relevant and highly personalized support when and where it is needed most.
In celebration of Cancer Support Community Central Indiana’s 25th Anniversary, we’ll share stories looking at our beginning, our present and our future on the 25th of each month. We’ll celebrate the visionaries who started our journey, chronicle stories of our participants and show the impact of our services. We’ll also explore our hopes and plans for our next 25 years and beyond.
Our first conversation is with Sherry O’Brian, LCSW, NBCCHT, DCEP.
How did you first get involved with Wellness Community/Cancer Support Community?
I started as an intern and was officially hired in 1997. I had gone back to school and was confident I wanted to be a therapist after graduate school. I was interning at a hospital and it wasn’t working for me. Someone suggested I go to the Wellness Community, which had just opened, and observe the breast cancer networking group with Lisa Pratt. Watching her facilitation of that group was my “ah-ha” moment. I knew I had found what I wanted to do. After group I asked Lisa about an internship. The Wellness Community had just opened and they weren’t taking interns. However, a year later, there was an internship and I jumped at the opportunity.
What were some of the main challenges at the beginning?
We were known as the best kept secret. I had never heard of it before someone at the hospital recommended I look at it. People just didn’t know we existed until cancer touched them in some way. Also a common misconception was we were a physical wellness extension center of a hospital. So getting our name out there was the biggest challenge.
What about Cancer Support Community makes you proud?
Our integrated approach and the fact that our support is free are what makes me proud. What I loved about the whole integrated approach was the support, the whole mind and body aspect. I had been trained in guided imagery, Gestalt therapy and other approaches. We had a relaxation and visualization group and it fit with my guided imagery interests. Things grew from there. We had speakers and presenters on acupuncture, physical therapy and others topics to help educate participants. For example, we had a physical therapist who would teach self-massage to address lymphedema symptoms or even prevent it because back then lymphedema wasn’t recognized as a medical symptom or side effect. The same thing happened with “chemo brain.” The research and science weren’t there to prove “chemo brain” was real. Our participants knew it was real. The science and medical community caught up.
And I can’t say this enough, but all of those integrated approaches and support were available to our participants for free. We are so grateful for the donors who support us because people facing cancer and their caregivers and families need this support. Not everyone has insurance to pay for counseling and mental health. We eliminate that barrier and it makes our support possible for everyone.
What has been your biggest “lesson learned” in your time at CSC?
One of the first things I started, and I still do today is a bereavement group. I was trained and certified in bereavement counseling. As I facilitated this group, I’ll never forget one gentleman came in and asked, “When am I going to get to the acceptance stage?” He was very upset. We were using the widely accepted approach of the stages of grief. In his mind he was going to go through the stages of grief, he would get to acceptance, and it was going to be over. The stages do imply that you go through them in a linear way.
And as I worked with this group, the work really opened my eyes. Grief and loss aren’t the same for everyone. One of the things I saw was that for those who lost someone to cancer was the potential of trauma. I am paraphrasing now but a definition of PTSD (post-traumatic stress disorder) is seeing yourself or a loved one in imminent danger of death and there is nothing you can do about it. This puts you in the category of potential PTSD symptoms. And I don’t know too many people who have seen a loved one suffer with cancer without feeling that feeling of trauma because you can’t stop them from dying. I saw it with my sister and the loss of her son to cancer. So it put me on a new path and a crusade of research and trying to help my family and the group. After a lot of research and work, I wrote a book Peaks and Valleys: Integrative Approaches for Recovering From Loss. There are layers of loss. With my work today with the Living with Loss group (formerly bereavement group) we use the model of phases of grief which I hope helps empower members of the group to continue to experience recovery and moving forward despite all the losses.
For you, what has been the greatest development or achievement for CSC over these last 25 years?
I know in the beginning there was resistance to being affiliated with a hospital because we were independent. We didn’t want to be seen as an extension of just one hospital. It goes back to the early challenge we had of people understanding who we are and what we did. Now I see the partnerships with so many hospitals and doctors. The collaboration with our partners to host groups and programs in their facilities is wonderful. It has helped us grow and meet the needs where the participants are located.
Is there a particular participant or colleague who has stuck with you over the last 20 plus years?
There are two that come to mind quickly. One is the gentlemen I mentioned earlier who asked when he was going to get to acceptance.
The other is a gentleman who had breast cancer in one of the support groups. He was so devastated because breast cancer is supposed to be a women’s disease. He struggled mentally with both the type of cancer and the treatment. He had his breast and lymph nodes removed therefore it interfered with his strength. I’ll never forget when he said he wasn’t able to lift up the bag of water softener salt to take it to the basement and refill the water softener. He saw this as a responsibility he could no longer do. He was feeling like less of a man. The group helped him see that the cancer didn’t define him or his manhood. I have had it happen in other groups but this one was so profound and emotional. Other men in the group shared examples of their struggles like one said he couldn’t mow the entire yard at once. He would have to take a break halfway through or finish the next day. And the group really came together to help each other. The message was cancer didn’t define a person or their manhood. I even included this story in my book because it is a loss. Not being able to do something you used to do before cancer, is a loss.
Why have you stayed at CSC for so many years?
What has kept me at CSC all these years is our openness and awareness to the integrated approach of mind and body and the fact that cancer isn’t just a physical disease. There are a lot of other issues that people should address or could address or needed to address in order to really recover from the diagnosis.
What do you remember of the time when the new building opened on 71st Street?
Our previous space was a bunch of various office suites. We were divided. You had to walk out of the suite, down a long hallway to get to the lobby for the restroom. I remember when the funding came about and we had a new building, I was in awe. When it opened, I thought it “what are we going to do with all this room?” The building is open and inviting. It was beautiful and so functional. For people with disabilities or in treatment and having mobility issues, this building was so much better.
What do you want people to know about CSC?
It is important to participate. We are here. We are free. Find the programs that works for you whether it is art therapy or gardening club or support group or yoga or whatever. We are here to assist in your cancer journey. Caregivers need support too, so participate. We are supporting the community with cancer including the caregivers and family members.
What do you wish for CSC’s next 25 years?
The first thing that comes to mind is that we go out of business because there isn’t any more cancer. I would hope that there is a cure for cancer in the next 25 years. Then we could redirect and support another community that needs our help.
For me, the pivotal piece of Cancer Support Community is the word support. I want us to continue to promote and support people in all aspects including mental health, physical health and spiritual health. It is much more accepted and prevalent that there is a mind-body connection. However, still in the medical community, it is often the medical treatment focus and not the mind-body connection. I hope through CSC’s continued efforts, the medical community will refer patients so they get the mind-body support. It makes a difference.
Join us for the journey!
We invite you to share your stories and memories as well by emailing firstname.lastname@example.org.