A Guide for Post-Cancer Patients and their Caregivers, by Steve Safran

First, a thank you. I am overwhelmed by the reception I received for my article “After the cure, the cry.” Britt tells me 1,000 people read it. Many people—friends and strangers– have contacted me and shared their personal stories with cancer, recounting their own illness or remembering a family member who went through it.

Grappling with my own, complicated emotions in the post-treatment period, I found a great many resources out there for people suffering through “Cancer-Related Post-traumatic Stress.” The important message in all of these is this: You are not alone. These words from the National Cancer Institute (NCI) ring true.

“Symptoms of post-traumatic stress usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards.”

(Mine began about three days after learning I was in remission.)

I kept asking myself, “I’m in remission. So why do I feel so miserable?” The NCI list of key triggers for PTSD made me wonder how anyone escapes this. As a cancer patient, you’re hit with a series of terrifying events, any one of which would be stressful. Combine them, and they make a mighty cocktail of traumatic triggers:

– Being diagnosed with a life-threatening illness

– Receiving treatment

– Waiting for test results

– Learning the cancer has recurred

To that, I would add that only doctors on TV ever say, “You’re cured!” so we live with “Learning the cancer may recur.”

Side bar from Britt: Still reeling from these events, you can imagine how odd and occasionally irritating all of these Stay Strong Be Positive Awareness campaigns can be. With everyone gleefully praising the bravery and strength of cancer patients, while walking their own healthy bodies all over town for a happy cure, we might feel a bit of guilt or anger that we’re unable to pretend it’s all over. We might have (temporarily) beat cancer into some undetectable submission, but it is an albatross to our peace.

Cancer patients aren’t the only ones subject to PTSD. Caregivers are susceptible, too.

“PTSD can also affect caregivers. Learning that a loved one has cancer, seeing a loved one in pain, and experiencing a medical emergency are traumatic events that may contribute to the development of PTSD symptoms during treatment or years after the person has survived the cancer.”

So families and caregivers need support, too. For me, cancer was a full participation, family event. My parents, my sister, and of course, my kids weren’t shielded from the times I was in pain or scared. We’ll need to keep “checking in” to gauge the fallout of this on each one of us. I hadn’t put a lot of thought into how my disease would influence their feelings in the future. Now I will.

What should we do about this? Is there a way to proactively safeguard our loved ones in the aftermath? Actually, yes. There are a few recommended steps. The first is everyone should have an opportunity to talk to a psychiatrist. Having a trained professional define the trauma and help identify its effects on your worldview can be enormously helpful. Also a doctor can and will, if necessary, prescribe medication. It’s been my experience, so far, that making sense of things with a psychiatrist is as much a part of healing as growing new hair. Holding in feelings of any sort is not healthy. Exorcizing those thoughts with a trained professional– not just your friends– is the way to metabolize them. This is just as important for caregivers and loved ones to consider as well. While your best friend or loyal sister is a great listener, a third party relieves her of trying to comfort and be comforted: You can’t be the patient and the therapist.

Another way to heal? Mindfulness. I’ve only just started to learn about this, so forgive me for being new to the effectiveness of this practice. Mindfulness, to be reductive, is yoga and meditation without all the New Age, crystal-waving, stand-on-one-leg, astrology-reading bits. And there is scientific proof that it works:

“A controlled study published in 2000 looked at 90 cancer patients who did mindfulness based stress reduction (MBSR) meditation for 7 weeks. They found that people who meditated had 31% lower stress symptoms and 67% less mood disturbance than people who did not meditate.”

I love controlled studies. They beat the heck out of well-meaning friends who say, “I have a cousin who only eats pomegranates and he’s been in remission for 30 years.” I went so far as to switch to a specialist trained in mindfulness and meditation. Mindfulness isn’t faith-based, and doesn’t actually require that you post inspirational quotes over blurry skies on Facebook. A good friend observed: “So those cultures that have been doing this for thousands of years probably knew something after all?” Go figure.

If you are in cancer recovery or in caregiver remission, please pay attention to signs of PTSD, take advantage of the many resources available to you, and never forget that you are not alone. I’m overstating the point, but as I’ve said before: “You think the treatment is bad? Wait until you’re cured!”

Britt cannot resist science puns...

Britt cannot resist science puns…

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2 responses

  1. The generosity of your insight throughout this intimate experience has created a new consciousness I hope we all share to better support each invitation to kindness with family, friends, and strangers as they navigate difficult diagnoses, both in sickness and in health.

    • Thank you, Marie. I am fortunate to have the encouragement to keep exploring and sharing this experience. I don’t want to let cancer define me, but I want to help. Some people help by running marathons, some by volunteering at hospitals. By training, I research and write. So I hope that’s how I help the effort.

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