Being known helps to navigate the cancer experience

Being known helps to navigate the cancer experience
"Navigation" by Tom Longfield. Used with permission of a Creative Commons License, which you can find here

I wrote a few weeks ago about the words, “fellowship of knowing.” They resonate deeply with me, and so did the person who spoke them. Dawn Williams, LCSW, an oncology social worker with the DuPage Medical Group, was a keynote speaker at a cancer conference sponsored by the Cancer Support Center in September.

The only thing better than a story is a backstory, and I was delighted to hear Williams tell one about her talk at the conference.

“I prepared my talk, and then I scrapped it,” she told me. She said she thought about what people with cancer need the most, and, in fact, what all people need.

“They need to be known. It’s one of the most basic human needs…. It’s a willingness to step into someone else’s experience, to witness their reality.”

Williams coined the phrase, “fellowship of knowing” to describe the power of being in the midst of others who know what you’re experiencing. It is the feeling of walking into a support group, a “holding environment” in Williams’ words, “where we don’t have to change or fix things. It’s ok to just be.”

During her keynote and later in our conversation, I couldn’t help but wish the hospital where I was diagnosed with cancer had an oncology social worker.

Perhaps there’s no way to avoid being traumatized when hearing you have cancer, but I have to think my quality of life would have been improved by having someone there who was able to offer me empathy, who was willing to “witness [my] reality.”

Dawn Williams, LCSW, is an oncology social worker at DuPage Medical Group.

Dawn Williams, LCSW, is an oncology social worker at DuPage Medical Group.

So does the National Comprehensive Cancer Network (NCCN), the alliance of cancer centers that establishes standards and protocols of treatment for cancer. I am familiar with their treatment protocols because my doc sent me a thick bundle with the bladder cancer treatment protocol in the first few weeks after my diagnosis.

However, I’m not as familiar with their statements on “survivorship.” Williams notes that the standard recommended by the Commission on Cancer (CoC) is to have a navigation process in place to provide patients and their families direction, access to care and support during their treatment.

Williams emphasizes the critical importance of having this comfort on the front end of being diagnosed.

“You’re just airdropped into a foreign country without a map or a language guide,” she said. “Our job is to draw a map together.”

Cancer is overwhelming in dozens of ways. After the initial blow of hearing “you have cancer,” the hardest thing for me was dealing with the seemingly endless number of doctors and tests and shuttling medical records from one place to the other.

After speaking with Williams, I realized I would have been much better off at a CoC-accredited cancer center, where a nurse navigator would have been available to help me map my experience and ease the process of record sharing and appointment scheduling.

In addition to smoothing logistics, integrative cancer programs (such as Williams’ home base, DuPage Medical Group) bring everyone to the table. Literally. Everyone involved in a case, from oncologist, radiation oncologist, surgeon to radiologist, pathologist, nurse navigator and social worker, sit down with case files to discuss clinical and administrative aspects, but also to discuss compassionate care.

“We should be looking at distress” in patients, Williams explains, as well as connecting patients and families to resources. Doing so produces better outcomes, an evidence-based conclusion at the foundation of the NCCN’s protocol for screening .

When you are diagnosed with cancer, it doesn’t take long to realize the experience is happening to you and to your family. Williams spends time with both patients and families.

Williams explains that a cancer diagnosis in the family poses developmental challenges for kids. “How do we keep them moving through developmental stages without getting stuck? How can they still be a kid in the midst of this going on?” And there are helpful tools and support to assist patients and families experiencing cancer.

I have been privileged to be a part of a fellowship of knowing during my cancer experience by participating in the Cancer Support Center here in Homewood. When I walk into my support group, I know that I’m in a place where I’m known and accepted.

It strikes me as very powerful, however, that I’ve also had the privilege of meeting and being cared for by people whose lives haven’t intersected personally with cancer, but who are still able to provide that sense of knowing.

Dawn Williams is one of those people.

Do me a favor? Click my “like” button and join our Facebook community.

If you’d like to know first-hand when I have a new post, type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

Filed under: Advice, Cancer, Uncategorized

Leave a comment