Live Long & Prosper: Tools for the Long Road | Aug 22 2023

Confronting the Great Unspokens

Lung cancer is like this: you’re bopping through your daily routine when, with no warning, your world blows up. You’re engulfed in a tsunami of shock and overwhelm as you go through the long diagnostic process, you endure whatever treatment the docs throw at the cancer, for however long that takes. Then, eventually, you drive away from the cancer center and into a life, a world, that no longer exists.

For the first time, no one is there to tell you what to do, or how to deal with what comes up. There are no more prescriptions from the pharmacy to unload. No more printed instructions describing pharmaceuticals or treatments. No more appointments.

It’s terrifying.

You’re supposed to rest, adopt a Mediterranean diet, slowly build back strength. There has been some vague talk of “a new normal” but nobody says anything about what that is. So you’re not prepared for what comes when the edges of numbness begin to melt. Uncertainty, then quiet anxiety that’s now always along for the ride.  The sense that you can’t even rely on yourself because what you know of yourself and your life Before has shifted so inexplicably. Then, grief. Huge, bottomless pits of grief. And anger, a kind of fury that seems beyond description.

These are the unspokens of lung cancer; the silence about them is where medicine fails us.

So we have to pick up the pieces ourselves, fit them back into a whole puzzle for which we have no picture, no shape. We can’t even tell what feeling or knowledge we can use as an edge piece, to frame whatever image is developing.

Two and a half years into lung cancer, I finally see that I’m not going to die today, at least not from lung cancer. But I feel I’ve clawed my way to this summit and it Should.Not.Be.This.Way, not for anyone.

What Do We Need To Know To Help Ourselves?

I’ve written about some of the absolute crap you can find, the hysteria and doom-saying that clogs many supposed “support forums.” My friend Dann Wonser, a counselor and lung cancer survivor, has written a book that’s helped many people, but it’s self-published; you may have to work hard to find it.

How do people cope with the trauma of diagnosis, treatment, living as a cancer survivor? Being the trained researcher I am <big snort>, I set out to find some answers. I was looking for peer-reviewed literature, because that’s what I trust (so much for all that post-modern theory about the specious nature of “validity.”) Here, I want to offer a summary of several of these studies, and some thoughts I’ve had.

#1 Resilience Is The Endgame 

Well, I suppose living is the true endgame, but from what I’ve read, resilience comes in as a close second.

Resilience is the capacity to adapt, especially to hard times, through a collection of beliefs, processes, and actions we have come to learn throughout our lives. Resilience is dynamic. It energizes us to learn more,  to grow in social support and a sense of efficacy, and to become yet more resilient.

Resilience buffers us against stress. It decreases depression and lousy sleep. The more resilience we develop, the better our mental health, the more complete our overall wellness, and thus, the greater the opportunity to create and experience the quality of life we we want. 

Some researchers describe resilience as a characteristic or personal strength. Others call it an outcome of personal and social strengths, working together. The bottom line: Who cares? For those of us who live with cancer (or other chronic illness), resilience is the cornerstone of positive living.

Cancer is a threat. Sometimes, treatment is too. But if I am resilient, when I get knocked over, I stand back up (eventually, in my case. But at least I’m standing….) As the Japanese proverb,“Nana korobi ya oki” goes, “Fall down seven times, get up eight.”

#2. Internal Strengths

Being able to find and use one’s own strengths is essential for getting through a traumatic health crisis. In interviews with researchers, cancer patients and survivors identified strengths they saw as essential, not only for getting through diagnosis and treatment, but for living well. To my mind, these strengths are the building blocks of resilience. They also often seem to operate synergistically. I indicate some of the connections I see in parentheses.

• Persistence: A balance of stubbornness, a drive to not give up, and the self-discipline to keep at it (for example, to seek solutions or positive actions;)
• A sense of agency: a belief  that “I can” (which seems to go hand in hand with persistence, and builds on a positive outlook);
• Positive outlook:  I’d suggest this means different things at different points in one’s treatment or recovery. It might be as simple as deciding you’re going to get through it, no matter what–  a form of persistence. It could be the capacity to see situations as challenges and be solution-focused about them. It might be seeking joy in a small or large moment, having a sense of optimism or inner peace, or working to develop a sense of gratitude and avoid self-pity. (This doesn’t preclude having feelings we might think of as “negative.” Doubt, fear, grief are all part of lung cancer, but they can occur simply as an interval within a more positive attitude.) (Additionally, in my view, a “positive outlook” is not the same as the toxic positivity that floats around, calling on you, for example, to immediately claim cancer as a gift or to stuff the hard emotions.)
• Humor reminds caregivers and medical personnel that you are still human; a kind of gallows humor or irony also serves as a kind of self-protection (positive outlook).
• Knowledge about one’s particular medical situation is empowering (helps build a sense of agency);
• Mindfulness as a type of cognitive strength. This includes the capacity for self-reflection in the present moment, or being able to hold negative thoughts at bay (positive outlook);
• A spiritual sense of connectedness— not necessarily religious, but often an ethical sense, within a personal belief system (strengthens a positive outlook and helps build agency.)

#3. Practices to build agency, action, and a sense of control

Patients who participated in the research interviews reported that these practices were some that helped them cope with living with an ongoing condition.

• Being vigorous— physical activity, especially walking;
• Asserting oneself in discussions and/or decisions about one’s own care, especially by using medical language; reading and learning about one’s illness; being rational or realistic;
• Being caring and kind to others helped some patients shift the focus to something outside of themselves;
• Being kind towards oneself, in terms of rest, self-care, avoiding stress;
• Recognizing the parameters of one’s symptoms or condition and living within those as well as
• Developing strategies  for managing these;
• Looking to the future and maintaining a sense of purpose (builds on a sense of agency over one’s life)

Some of these practices focused on

• A hobby, work, or school as a source of contentment and pride;
• Time in nature;
• Seeking knowledge;
• Making one’s needs or priorities known.

#4. Social and other external factors

• Positive relationships with family and friends for practical and emotional support;
• Relationships with peers to counteract aloneness;
• A sense of trust in one’s care team: are they answering questions? Is the patient feeling seen and heard?
• Financial security in the face of the medical costs
• A safe place to live
• I would add an ongoing relationship with a mental health professional

In the research, the sense of resilience acts in concert with beliefs, feelings, and actions in a patients’ life, all with the potential of sparking and supporting growth in new areas. Conversations with peers can prepare a patient to speak more confidently with their doctor, for example. Developing and working towards a goal is a way of affirming belief in the future to oneself or others, and may aid in developing new ways of thinking about wellness.  Setting limits or creating boundaries with other people is a kind of self-care that might build self-esteem and foster a greater sense of agency.

This blog has played a big part in my own coming to terms with some of the Great Unspokens. I see CancerShrink every week. I have a local support group that meets monthly via Zoom, and yearly in person. My family is like a dog with a bone in terms of my cancer; once I joked with Dr. Oncology that it was impossible to have private cancer in my family. And, one person I know has survived cancer and a horrible treatment path; I deeply appreciate the moments of very dark humor we can share. I write; I’ve developed a meditation practice.  I’m also grateful for friends who understand cancer from their own family experiences, for my church community, and this summer, for my bicycle and my mysterious obsession with riding my bike to stupid Multnomah Falls and back. I think I can use these lists to see if there are other ways I can grow.

But sometimes things are just hard, so then the focus becomes what you do in that moment to get to the next moment, then the one after that.

I think everybody gets through cancer or other long or chronic illness in their own ways. I welcome you to share thoughts of how you’ve done it, here.

Thanks for reading. I hope you are prospering.

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