Living With Cancer's Uncertainty

September 26, 2018

Navigating the unknown is one of the hardest parts of living with cancer.

A few weeks ago I attended the Young Adult Cancer Conference in Bethesda, MD. I had the opportunity to attend three amazing breakout sessions alongside many other young adult cancer survivors and patients.

In this session, led by oncology nurse Eric Cohen, we discussed living with cancer's uncertainty — both before, during and after treatment. He gave us four common discussion points and we brainstormed ways to handle them in both good and not-so-good ways.

Managing Scanxiety

In the cancer world, the time leading up to a scan and the span between the scan and results is well-known as scanxiety. What is less well-known is how to handle it "best." Eric guided us through helpful thoughts/actions and unhelpful means of dealing with it.

As a group, we came up with the following helpful tips:

  • Cluster your care: Minimize the time between the scan and the follow up.
  • Plan something else in advance: A dinner with friends can help keep your mind off of it.
  • Practice mindfulness: Meditate, remind yourself how scans help you be productive, and use the time to refocus.
  • Accept scanxiety: Embrace that you are going to be nervous - it's natural and nothing to minimize.

We also had some not helpful ways of handling it:

  • Overthinking it: Either fixating on the fact that you have a scan or that the scan might be wrong.
  • Predicting a result: Don't think too far into it. Especially if you cluster care, you'll have true results soon.
  • Putting it off: Your health should be a priority.

Talking with loved ones

Loved ones often mean well, but may not know specifically what to say. Our next exercise was to formulate words and actions that can help.

Among the helpful ideas:

  • Initiating conversation: Whether its sharing a funny story or reaching out, reach out to the survivor/patient to check in on them.
  • Listening: Allow them to share their frustrations and feelings in a non-judgemental way.
  • Making plans for us: Someone dealing with scanxiety has enough to worry about. Help them out by making the dinner or leisure plans for them (but also make sure it's something they will enjoy).
  • Saying that it sucks: Cancer sucks. End of story. It's OK to say that.

Followed by the ones we would have liked to avoid:

  • Claiming understanding: If you haven't been there, don't say you understand. You can sympathize, but you can't empathize.
  • Being a doctor: Unless you hold a medical degree and literally are an oncologist, the latest tip you read in “Readers Digest” may not be welcome.
  • Shutting down feelings: The feelings are valid; don't mask them with false positivity.
  • Sharing not-so-positive stories: Ending a story with "… and then he died from cancer" isn't a good thing to say when someone is dealing with scanxiety.

Eric closed this part of the discussion with an important message: "You have to tell people these things." It's not enough for us to put these on chart paper — we need to make sure people know these ideas, as well.

Making future plans

It can be somewhat hard and stressful, to plan for the future as a cancer patient and survivor. In this round of discussion, Eric asked us how and why we plan for the future.

  • Scaling planning: Have daily, weekly, monthly and maybe even yearly goals.
  • Being flexible with plans: Things change quickly for cancer patients/survivors.
  • Have a calendar of “maybes”: You never know how you'll feel on a certain day in the future. Don't say yes or no to that event. Leave it open.
  • Have big goals and dreams: Focus on your why — and work towards it.

Being the "best" cancer survivor

Is it enough to be a survivor or should we always be expected to be more? This made up Eric's final prompt.

  • Living the notion that "You are enough": You're a cancer survivor. Enough said.
  • No comparing yourself to others: The only person you need to be better that is yesterday's self.
  • Identifying as yourself, not as a cancer patient: It's part of your experience; it's not all of you.
  • Giving back when it's right for you: Pay it forward and help others because it's right for you - not out of an obligation.
  • Celebrating all victories: Every successful moment, no matter how big or small deserves to be recognized and elevated.

After our four powerful rounds of discussion, Eric closed us out with his final thoughts:

"It's OK to grieve about all of this uncertainty. It's necessary and important. Allow yourself to feel it and then get out and do something good."


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