I Beat Chemo-Resistant Cancer — 10 Ways To Navigate The Cancer Maze
When I was sick, the concern and care of my friends and family were essential to my getting well.
Dragon Images/ Shutterstock News of cancer is a huge stone hurled into a still body of water: it ripples in every direction.
It’s not contagious, but a friend’s or loved one’s diagnosis can reverberate so powerfully that it may feel as though we’ve caught something ourselves — not cancer but the fear and uncertainty that go with it.
When it ripples our way because someone close to us is sick, we may feel lost about what to do or say and what role we can play in our loved one’s odyssey.
This is especially true when we’re younger and may not have been exposed to many people facing medical crises. And the closer the patient is, through friendship or family, the more often the lines between us and them can blur.
Even when we do and say things we imagine will be comforting, it doesn’t always work as we’d intended. And until we’re in that situation ourselves, we don’t know how we’d feel or what we would want.
I got a crash course in cancer and friendship five years ago when I was diagnosed — after three months of doctor visits, tests, and unnecessary waiting — with lymphoma.
The good news: it was a treatable variety of lymphoma.
The bad news: I had a mutated gene that the doctor feared would make me resistant to chemotherapy.
Although he was a legendary doctor in the field who’d "seen everything," he kept saying he was "spooked" by my case. He said that there were no studies on precisely how to treat someone with this wonky gene of mine.
If he was spooked, I was super spooked.
Like all other cancer patients, I needed and received support from friends and family.
It meant everything to me. It sounds simple — support from friends and family — but in real life, that support can sometimes be rocky and unpredictable because our closest peeps may not know what we need. And because we often don’t know what we need ourselves.
No one knows in advance what it feels like to get a diagnosis or to move through treatments. We learn along with way, and often what we need changes over time.
I don’t think of these as rules but guidelines for helping you help your nearest and dearest when they’re in what I call "the cancer maze." It can include the time before, during, and after diagnosis and treatment.
Here are 10 ways to help a loved one navigate the cancer maze:
1. Listen
Then listen some more.
Let your loved one tell you what’s going on. It may be tempting to interrupt with questions and comments — "Don’t worry!" or "I knew someone who had…" — but give your loved one the floor to tell her story.
2. Give assurances that you can deliver on
As a novelist, I’m used to writing dialogue for my characters, so here are some possible comments you might feel comfortable making:
- "Please tell me what you need."
- "I will help you get through this in whatever ways you need me to."
- "I’ll be here for you throughout."
3. Offer to go to appointments and take notes
Patients need a notetaker or a cell phone video turned on. We need to have a record of what doctors tell us in each meeting.
Later on, we’ll want to refer back to an early comment, a type of medicine, or a question that was never answered. You can help your loved one by being a notetaker.
4. Tell your loved one that there is no one way to be a cancer patient
This was the most important advice my best friend gave me while I was sick. "You can do this however you want," she said more than once. "It’s up to you."
Your doctor may suggest you join a support group — but that doesn’t mean you have to. I made up my own support group: I was in regular touch with a few close friends and family, but I didn’t tell many people. I didn’t join a support group.
I didn’t send regular emails about my situation. I imagine it was hard sometimes on people who wanted to know how I was doing, but I was consumed with the "work" of being a good patient.
My primary job was to take care of myself, not worry about how others were handling my illness.
5. Get a second opinion
If your friend or relative does not live in an area near a major cancer center, point out that she can easily get a second opinion about her illness and treatment from one of the country’s leading centers, including Memorial Sloan Kettering, Dana Farber, and MD Anderson — without having to visit these hospitals.
She is entitled to a second opinion, and it’s not "an insult" to her own doctor.
These major cancer centers do cutting-edge therapies and conduct trials. You don’t need to be "a rich person" to get a second opinion. It’s best to get it early before other treatments begin.
6. Let your loved one lead
Don’t assume your friend or family member wants to talk about everything she’s going through.
Although we live in an age of hyper-connectivity and sharing, cancer patients may not want to share much. Don’t press the patient in your life.
Ask her whether she wants to talk about what happened at the doctor's visit or during the latest treatment.
7. Offer whatever you can offer
- "Do you need a ride to the doctor?"
- "Can I bring you a week of meals?"
- "Do you want a Netflix recommendation?"
- "Can I do your laundry, walk the dog or clean your apartment?"
8. Recognize your own fears
When a loved one is sick, we naturally feel afraid for them and for ourselves, for how our life has changed and might keep changing with the interruption of treatments and illness.
Try not to share your fears with the patient — or share sparingly. Your loved one needs you to be a source of comfort — even strength — even though you may be suffering too.
Join a support group for cancer caregivers or talk to a therapist.
9. Avoid asking "What’s the prognosis?"
These may be the most pressing questions on everyone’s mind: Will she make it? What’s really going to happen?
In some cases, the prognosis is clear and unequivocal — in which case, your loved one may tell you — or maybe she won’t.
In many other cases, doctors may not know the prognosis because treatments are complex and take place over many months. Find the patience not to ask, "What’s the outcome going to be?"
10. Stop reading Dr. Google
Don’t get caught up in everything you read online about your friend’s diagnosis, even though it seems to have the ring of authenticity.
Yes, the Internet gives us valuable, sometimes lifesaving information. But cancer and its treatments are so varied, complex, and unpredictable, your friend’s case may have nothing to do with what you’re reading.
Five years out, and I am fine now. The concern of my friends and family when I was sick — the food and flowers they sent, the phone calls, the emails — was essential to my getting well and staying well.
Elizabeth Benedict’s newest book, the memoir Rewriting Illness: A View of My Own, is the "surprisingly entertaining" story of her illness and recovery.