When The Storm Is Over
Keith and his wife, Shelley
What Loved Ones Should Understand About Post-Treatment
by Keith T. Hardeman
How could one describe the sheer hell of my wife’s primary breast cancer treatment – 16 rounds of chemotherapy, 30 rounds of radiation, three surgeries, and six months of almost daily chemo pills – in one word? A journey? An experience? An event? Ultimately, we settled on “storm.” Given all the mayhem and fallout, it seemed appropriate enough. And we often included adjectives such as “deadly” and “destructive.” We sometimes even used the descriptor, “perfect,” in conjunction with the movie title (Perfect Storm).
As her 14-month-long treatment progressed, we outwardly envisioned the unreserved glee we expected to feel at the storm’s conclusion (assuming her completed treatment would bring her to remission). We longed to return to the comfort of pre-cancer normal, to pick up our carefree life where we left off at diagnosis.
But at the treatment’s end, it didn’t take long for us to realize pre-diagnosis life was quite possibly over forever. Of course, by no means am I asserting that the finish of treatment wasn’t positively significant. Sadly, many cancer fighters don’t make it that far. But while we felt fortunate to have reached that goal, we hadn’t fully imagined the permanently undesirable changes cancer left us with.
Because, as with any major storm, the cleanup, the cost, and residual emotional reactions of coping take a lot of time to sort through and process.
Most friends and acquaintances naturally share our happiness when they hear of our successful treatment. But I remember my reaction a number of months after the fact when someone said to me with the best of intentions, “Oh, I’m so glad this cancer thing is completely behind you, now!” Because, as with any major storm, the cleanup, the cost, and residual emotional reactions of coping take a lot of time to sort through and process. And even after several years of being in remission, it may be good for our friends to know “this cancer thing” still haunts us and with no indication of any impending departure for the foreseeable future.
Primary treatment often leaves permanent scars
While slow recovery does take place, many cancer survivors must cope with irreversible damage caused by chemotherapy, radiation, surgery, and other primary treatments. My wife will always have neuropathy and pain in her hands and feet from chemo. Because of the removal of nine lymph nodes, she has continuing problems with extensive lymphatic fluid buildup resulting in arm and upper-body swelling.
She often experiences pain and numbness at her incision site from her lumpectomy. Her energy level has decreased significantly, even though it’s been years since treatment ended. And memory issues from chemo brain still occasionally flare up. It is likely that most or all of these treatment-induced maladies will never fully exit her life.
Follow-up treatment can last for the long haul
After successful primary treatment concludes, cancer recurrence is of chief concern. Sadly, it isn’t surprising for cancer to return after one has been deemed to be in remission. Therefore, survivors are often subjected to years of secondary (adjuvant) treatments designed to reduce the risk of recurrence. While side effects are generally less potent than with primary treatment, they can still pack an unpleasant punch, nonetheless.
The anxiety of “what if it returns?” is difficult to shake
Just as there are permanent physical scars, long-lasting emotional fear of cancer recurrence is real and justified. And oncologists do their best to combat this distress by staying vigilant. Therefore, repeated post-treatment scans are normally conducted for several years after primary treatment.
A scan may be scheduled weeks in advance. The fear and anticipation of the outcome (often referred to as “scanxiety”) can begin as early as initial scheduling takes place, and they do not end until we’re given an official “all clear” afterward. And I assure you that, prior to that point, telling us not to worry, that everything will be fine, does not alleviate any of that anxiety. It only dismisses it.
Medical bills usually continue long after the end of treatment
Scans, adjuvant treatment, and follow-up physician consultations must continue for years to come. For a cancer survivor who has health insurance, there still may be high-cost deductibles and copays that can significantly challenge most families.
It is not uncommon for a patient to have tens of thousands of dollars in healthcare debt resulting from a cancer fight. Bills come from every possible attending physician, each surgeon’s individual clinic, and from the hospital where any procedures took place. Even if patients are careful to select in-network healthcare providers, they are seldom apprised of whether one or more of the participating medical professionals are outside their insurance network until after the fact.
Always remember that while survivors are likely doing their best to live life as normally as possible, the ‘cancer thing’ could be with them for years to come, and perhaps for the rest of their lives.
The situation becomes rudely exacerbated when an unexpected claim denial – a periodically-occurring and callous reality of insurance (non)coverage – takes place. Many people with cancer quickly learn just how utterly ruthless their insurance company can sometimes be when they manufacture justifications not to fully cover a medically necessary procedure, treatment, or specific medication.
Survivors often mourn the permanent loss of time due to treatment
One survivor commented to me about time lost to her treatment and the professional and personal sacrifices she’s had to make as a result. Some of her friends attempt to soothe the pain and emptiness of these setbacks by telling her how inspirational she is in reminding them not to take life for granted.
“Part of me is glad they are learning lessons from my journey,” she said. “[But] another part of me is deflated. Is that really my purpose — to share my cancer war stories so that people can remember where they are fortunate?”
While cancer survivors may be grateful for chemotherapy investment’s successful outcome resulting in life extension, many of them lament the time forever lost to treatment. Cancer has led to relationship breakups and divorces. It can interfere with having a family. It costs some people promotions and even their jobs. It forces many to redirect their entire life focus on basic survival rather than participating and working toward various and special life activities and accomplishments.
The post-cancer funk is normal
You may occasionally see survivors in some type of temporary, post-cancer funk, and this could make you feel a bit uncomfortable. But having a bad day is perfectly normal and still may happen to them from time to time. And sometimes they might even need to vent about it a little. Under no circumstances, however, should you attempt to swoop in to rescue or fix them.
Don’t say anything like “Just be happy you survived,” “Stop worrying about your scan, it’s going to be fine,” or “You need to stop being so negative.” As would be the case during primary treatment, these types of messages will more than likely produce the exact opposite effect of what you’re hoping for. And the moment you try to impose any dismissive or feel-good depictions in these situations, it becomes one of the most mortifying things you can do in the eyes of a survivor or caregiver. Just acknowledge and validate their apprehensions. It’s best to let your cancer-surviving friends process these feelings and cope with them at their own pace.
The storm may be over, but cleanup and healing could go on into perpetuity. Even if treatment is successful and they’re declared to be in remission or cancer-free, physical and emotional life may never return to pre-cancer normal for the survivor or spousal caregiver. Just accept this and deal with them on that basis. Always remember that while survivors are likely doing their best to live life as normally as possible, the “cancer thing” could be with them for years to come, and perhaps for the rest of their lives.
Keith T. Hardeman is professor emeritus at Westminster College in Fulton, MO. This article is adapted from chapter 9 of his book, Don’t say “Everything happens for a reason”: What patients and caregivers want friends to know about helping them through the horrors of cancer. He is also the author of The shadow of trepidation: Reflections on caregiving during my wife’s battle with breast cancer. His wife, Shelley, is currently in remission.
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