'Welcome to the Survivors' Club'

Steven Kelman recently wrote an essay for us about his experience with lymphoma. Here he describes the increased role his friends played post-diagnosis:

There is no greater cliché about how people react to serious illness than to note how it makes one appreciate the importance of friends. But clichés become clichés for a reason. I would not say that before getting sick I ignored my friends, but, obsessed with work, I didn’t give them the attention they should have received. Treating me more generously than I deserved, people showered me with visits in the hospital and at home. Some brought me the few foods I found appetizing, such as pizza. One colleague regularly plied me with Sichuan fish, a taste that survived chemo. Neighbors from our block helped with food and support, far more than my previous attention to the neighborhood warranted. [...]

The only times I became tearful during these months came when I cried tears of joy in response to the kindness of friends and colleagues; I welled up uncontrollably when a class of executive-education students stood up and applauded when I came to Harvard for the first time in months to speak informally over lunch.

Kelman’s essay prompted several readers to share their own stories. One cancer survivor (“I was 25, Hodgkin’s”) has perspective for those who don’t have the kind of support Kelman had:

For any others who did not or have not experienced sudden outpourings of love, and who struggle with uncaring doctors, non-present friends, and unhelpful families: You are not alone, and there will be value, even in that experience. The media portrayal almost always has helping people pouring out of the woodworks, which is great when it happens, but it doesn’t always. This isn’t your fault; it’s the way a lot of ill people are treated.

Another writes, “I do feel like us cancer survivors have a common bond with one another”:

I’ve had two kinds of lymphoma: diffuse large B-cell lymphoma that began in my spleen, and Burkitt’s lymphoma, which was primarily in my neck. For the first one, I was 25. My process was similar to yours: Cancer was at the bottom of the list of potential causes for my weight loss and other symptoms. I didn’t really even think about it. I mean, how many 25 year olds get cancer?

Anyway, after getting a CT scan of my abdomen, my primary physician said, “You’ve got lymphoma.” I went into shock. In a daze, I called my mom over the phone to tell her. I didn’t really get emotional for a couple days. Then, boom—I pretty much just shut down and couldn’t function for an afternoon.

From that point until my diagnosis, I was on an emotional roller coaster. At times I felt strong, that I could deal with whatever would come my way. Other times, I just felt like I could handle nothing whatsoever.

Even though my physician was pretty certain I had lymphoma, I still had to get it confirmed. I underwent God-knows-how-many tests to get my diagnosis. That part is the worst—being in limbo, not really knowing what you’re dealing with, and hoping for the best.

Once I finally started chemo, that was the easy part. No significant memories from that, strangely enough.

Fast forward seven years. I felt a bulge on my neck one morning and thought, “Oh shit, is my cancer back?” I don't know why that was my first thought. Doctors had told me that if I was cancer free for two years, I was “in the clear.” Of course, there are always exceptions to the rule, right? I went to see my primary doctor (a different one than seven years earlier), who said to check back with her if it was still there after a couple weeks. Not only was it there after a couple weeks, but it had grown and was impacting my ability to eat!

The preliminary guess from my doctor, along with the ENT, was that my cancer was back. I was skeptical because my symptoms were totally different: I hadn’t lost weight, I didn’t have night sweats, etc. Honestly, the only symptom I had was this big-ass growth on my neck.

Best news of my life (at least it seemed like it at the time): I was diagnosed with Burkitt’s, a different form of lymphoma. Why good news? Because that meant I didn’t need to undergo a stem cell transplant. Chemo had indeed killed off the first cancer.

Chemo for Burkitt’s was a much worse experience for me. I got chemo brain. I was nauseous a lot more. I hated it. Eight rounds that were each five days long vs. six rounds that were half a day long.

On the other hand, I had an outpouring of support from friends and family that I didn’t have the first time around. I’m not sure why. Perhaps I just appreciated it a lot more the second time.

Anyway, since I had two kinds of lymphoma, the doctors said I might want to consider a stem cell transplant, especially if the chemo didn't work for Burkitt’s. If they found a link between the two, the doctors also recommended the transplant. I read all the same stuff that Dr. Kelman did. It sounded, frankly, awful.

Thankfully, the doctors found no link between my two cancers, and chemo was indeed a success. I’ve now been in remission from the first cancer for 11 years and three years from the second.

Another reader describes what happens in the aftermath of recovery—when family and friends move on:

Welcome to the survivors’ club. I have had two totally unrelated, but potentially lethal, cancers over the past 16 years. I was 58 for the first and 65 for the second. Both times the tumors were localized, and I only had surgery and follow-up scans. Both surgeries were painful—especially the second, which was complicated, required a lengthy recovery and left residual physical complications. But today, two months shy of 74, I am a very healthy, active guy who most people assume is much younger.

Now for the psychology part: After the procedures and the focus on fighting the battle comes the time when you are pretty much alone in the aftermath. You have survived the tornado, but you have to pick up the pieces. Your spouse, who has been your huge supporter, slowly reclaims her career and life. Likewise for friends and relatives. But you are the one who lies awake at night still facing the uncertainty. The reality of facing death remains fresh long after the procedures have healed. You will never be quite the same.

Even as you have healed physically, resuming work and exercise, mentally you are still in a state of recovery that has a variety of symptoms and fears. For a long time, the nights are the worst. Anxiety is hard to overcome with rationality. No matter how well you feel, there is that haunting thought that perhaps they didn’t quite get it all. Perhaps some of the devious little bastards have survived and are biding their time, gaining strength for a return.

For me, the path to emotional recovery was to become as active as possible. A busy mind helps you avoid negative thoughts. I did two years as a volunteer at our nearby cancer center, conducting informal support groups meetings for new patients. I embraced new activities and friends, traveled, and generally broadened my life.

Gradually, the fears and anxiety diminished. I no longer fear death. The key is to maximize the time we are fortunate to have left. Nobody knows what the future holds. And it’s a waste of time to worry about the unknown.

Have you had cancer and want to share your thoughts about how relationships changed with your diagnosis? Email us at hello@theatlantic.com.