Insights from Our Community Polls

In a series of recent polls, our community has spoken up, revealing that pain, the term "good cancer," communication with doctors, and confusion are common threads in the experience of living with blood cancer.

But what does this tell us about the broader implications of these issues? Below, we reveal some of the most popular responses to these polls, offering a glimpse into the lived experiences of many who are dealing with similar challenges.

How do your experiences compare?

Bone pain

In a recent community poll asking how your bones have been impacted by blood cancer, the majority of respondents said, "Pain."

Ramae, one of our Health Leaders, writes in Blood Cancer Broke My Leg, "My journey with multiple myeloma began with a dull pain in my left hip. One spring morning as I stepped over a gate, my foot got caught, and I fell to the floor in excruciating pain. A CT scan showed I had fractured my hip, and I was sent to an orthopedic surgeon. The surgeon thought my amount of pain didn’t match the small fracture on the CT scan and ordered an MRI.The results of the MRI quickly ended all hopes of minor wear and tear from long-distance running. It showed a 9-cm area in my femur that lit up like a Christmas tree."

Communication

In a recent poll about communicating with your doctor, many community members said you have trouble asking the right questions.

Yolanda, one of our Health Leaders, writes in Doctor Can You Hear Me? "As for my own blood cancer journey, I’ve had incidents when I’ve had to talk to myself right afterward, puzzled with "was that them or me?" I’m not sure where the breakdown in communication comes in."

"The good cancer"

In a recent poll, the community overwhelmingly agreed that the term "good cancer" is misleading and dismissive.

Leya, one of our Health Leaders, writes in Don't Say Blood Cancer Is The Good Cancer, "I will never forget one of the first times I spoke openly about my chronic lymphocytic leukemia diagnosis. Someone said to me, 'Oh, that's nothing. At least you have one of the good cancers.'"

Brain fog

In a recent poll about side effects, many respondents say they are bothered by brain fog/cognitive impairment.

Katie, one of our Health Leaders, writes in My Chemo Brain, "It’s hard to describe. It’s a bit fuzzy. Things are slow to connect. Really obvious mistakes are made so you look like a moron. But when it’s business related, you can’t, well I can’t, allow myself to say, 'Sorry, chemo brain. I didn’t mean to make that mistake, that typo, get that date wrong. I know it really. I’m not as scatty or as incompetent as I appear. It’s chemo brain. I physically can’t help it.'"