My Expectations of Follicular Lymphoma Treatment

As I approach anniversary dates related to cancer and cancer treatment, sometimes I remember things that happened in the past. Some of those things have a PTSD-like impact, but others fall more under “Huh… not what I expected.” One of the things that happened involved expectations of what cancer treatment would actually be like, based largely on reports of other people’s experiences, things “everyone knows” that are sometimes wrong.

One of my best friends came with me to my first day of treatment and stayed at my house through the first round (which took two days), and another day after. I live alone, so I greatly appreciated that she was willing to do that. Her daughter had been treated for cancer a couple of years earlier, at the same oncology center where I was treated. We were coworkers before we both retired and had the same health insurance. She had been a support system for a patient with cancer before and provided things she thought I might need.

One of the things she provided was a couple of extra trash cans, complete with scented liners, for when I vomited. It was something her daughter needed, but thankfully, I did not. Between a different chemotherapy and immunotherapy regimen, and differences in the type of cancer we each had (her daughter had osteosarcoma, a type of bone cancer), I was never nauseated.

I had other problems: Zofran (ondansetron), the antinausea medication I was given, caused constipation. But honestly, I prefer that to nausea. We were both pleasantly surprised by that, because “everyone knows” that cancer treatment causes intense nausea — except when it doesn’t. It took me two years to tell her that the greatest problem I had with potential nausea was caused by the scent of the trash can liners. Some smells just don’t agree with me, but she’d been so nice about everything, I didn’t want to tell her.

Another thing that “everyone knows” is that chemo makes your hair fall out — except when it doesn’t. Hair loss was covered in the online chemo class I took (it was during the COVID-19 pandemic shutdown, so everything was done remotely). Since it was a recorded class, the only way to ask questions was to remember them for the next visit or email the doctor.

Since “everyone knows” that your hair falls out when you have chemo, it never dawned on me to question it, but it turns out that some forms of chemo don’t cause hair loss. My hair thinned a little near my hairline, and I lost more hair when I was combing it than I usually did, but even I could only see the thinning if I really looked for it, and no one else noticed. Hair loss is a relatively minor thing, in the grand scheme of things, but very, very demoralizing. I found out from a neighbor who was an oncology nurse — the only person who thought to tell me — that the form of chemo I was given didn’t generally cause hair loss. Learning this information was a bright spot in a bad month.

Another thing “everyone knows” is that patients with cancer lose a significant amount of weight, and look gaunt and generally unwell. This is typically in part because of the nausea, but also because of treatment in general. That also never happened to me.

I had lost a significant amount of weight as a symptom of my cancer.As my symptoms resolved, I stopped losing weight, and regained some of what I’d lost. I lost track of the number of people who told me how good I looked, “considering what you’re going through,” or words to that general effect. A hint for talking to people with cancer, or anyone else going through a significant health issue: don’t do that. Self-esteem is, culturally, very tied to appearance, at least in the U.S., and comments about appearance, no matter how well-intended, can often have a different effect than intended.

There have been significant changes in cancer treatment. These days, treatments are far more effective, and have far fewer side effects, relative to the past and the things “everyone knows” have changed. Those things are often the ones that are the scariest for patients and their friends and family. A lot of people I know responded based on things that “everyone knows.” But a few did some quick research, and avoided those things, except to ask if I knew what to expect, and I greatly appreciate those who did. I got tired of explaining why I didn’t look like their perception of a person with cancer.

The upside to incorrect expectations? Having and being treated for cancer wasn’t a picnic by any means, but it wasn’t quite as bad as I was expecting, either.

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