I wish u knew… the importance of survivorship care

Tim Hampshire

So you survived cancer. Good for you. No more needles, no more radiation, no more probing, vomiting, scanning, reeling, praying, crying, or wig shopping. Great. Now what?

The question, “now what?” exists officially. Hospitals are thinking about it, implementing it, and in some cases mandating that it be answered with institutional resources. This movement is called “survivorship.” It is the state of living entered when a cancer patient crosses over into the realm of people who have been conferred the title of “survivor.” It’s a glamorous title; we like how it sounds because of the turbulent past it brings to our imaginations. But if we all thought about what it means from a linguistic standpoint, we’d probably like it less:

To survive is to live (in French vivre) with the preposition sur (in French “on.”) If you survive something, you’re living on something. That something could be a lot of things: a thorn in your side, a pain in your heart, a pea under your mattress, a particularly noisy memory you’ve been trying to bury. It impedes your balance by creating obstacles beneath you. Why do you think we refer to the practice of hard, resourceful outdoor living as “survival skills?” Someone with survival skills is someone who knows how to keep living despite having something obvious to overcome. Someone who survives is someone who rectifies imbalances. So survivorship just represents a new phase of challenges. You are living, but not with both feet on the ground. At least part of you is still on your something.

Cancer is a hell of a something.

Enter Linda Jacobs: oncology nurse practitioner and director of the Livestrong Survivorship Center of Excellence (just picture the trademark symbol next to the Livestrong. While you’re at it, savor the panache of that name; why can’t the world have more Centers of Excellence?)

Ms. Jacobs oversees all the operations of the Livestrong Center. That includes a lot of things: clinical follow-ups, survivorship research, educational events, and more.

It’s really her job to make sure everybody has what they need. Some people need plenty of medical surveillance going forward. Some people need psychological counseling. Some people need a social worker to help them get back on their feet financially. Think of the Livestrong Center as the place where you go to get everything that may have fallen through the cracks while you were being treated to make your cancer go away. It’s the hospital’s lost and found. You go there to find the stuff you need to live.

“We owe them the ability to move on back into a normal life,” said Ms. Jacobs. And why not? It’s encouraging that healthcare providers have realized that survival is not necessarily living.

Even though the movement is rapidly spreading, and successful in the areas where it has been implemented, it has not completely caught on. “I wish that providers were more willing to embrace survivorship as a piece of what they do,” she told me. She thinks it is important that survivorship be labeled as “survivorship,” distinctly separate from “disease and treatment mode.” Allowing patients to move forward into the lost and found, supplying them with the tools with which they will build their new normal and sail away from the oppressive somethings, is what the Livestrong Center is all about. Penn Medicine is right to be proud of it.

Note from OncoLink: Want to find a survivorship clinic near you? Search our survivorship clinic listing!

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