Community Views: The Most Confusing Part of Living with Blood Cancer

Finding out you have blood cancer is typically a huge shock – and then there are all the emotions that come next. For most people, what follows is a lot of confusion.

To find out more about the many puzzling and complicated things that come with this diagnosis, we turned to followers of our Facebook page. There, we asked community members: "What has been the most confusing part of blood cancer?"

We saw nearly 250 responses from the community. Here is what was shared.

Not knowing what is next

Many people in the blood cancer community find that the future is the hardest thing to wrap their heads around. What comes next is often one big question mark. It can be very disorienting to not know what your health will look like in 1 year, 5 years, and beyond. This kind of uncertainty can be hard to stomach and make peace with. Even those who are in remission shared that they are scared and confused when thinking about what lies ahead.

“I would think after chemo: what is next for me?”

“The unknown is the most confusing. If I only knew what is next, or where does this diagnosis lead?”

“When will it come back and where! That thought never ends. Even though I am in remission now. This is always scary.”

The unexpected side effects

Others shared that they were caught off-guard by the side effects. Treatment for blood cancer affects everyone differently, so it makes sense to be surprised when your body starts responding in new and unexpected ways.

“The side effects. I feel like I am in slow motion and the rest of the world is speeding by. Brain fog, sleepless nights, and loss of interest are some of the biggest side effects. Plus, how much it has aged my skin and me.”

“I am just curious. It seems we are all tired, feeling older than we are, in pain, weak, etc.”

“The odd, little-known chemo and radiation side effects. Oh, and the long-term side effects.”

Dealing with other people’s reactions

A number of you said that upon sharing your diagnosis, you were met with some surprising reactions from friends, family, and coworkers. Even people who know about your diagnosis say things like, “You do not look sick,” which is neither kind nor helpful. Some friends and coworkers also keep their distance or disappear entirely, which could be because they do not know what to say or how to act. Regardless of why people act in these ways, their actions can catch us off-guard and be very hurtful.

“The reaction of other people to you.”

“I did not expect some of the reactions from other people I received. Sometimes I was totally shocked.”

"When people say, ‘But you look so good!’ I know people mean well, but that is certainly not a compliment."

“Why people say they will be there but are not.”

That there is no cure

For some community members, one of the biggest sources of confusion is that there is no cure for blood cancer. It can be hard to comprehend that while it is possible to be in remission, blood cancer never fully disappears.

“That there is no cure for my type of cancer, only symptom management. At my age, I will die with it.”

“As the oncologist said, ‘There is treatment, but there is no cure.”

Thank you to everyone who weighed in with their experiences. We are very grateful for such a supportive and responsive community.

Share your thoughts on the most confusing part about living with blood cancer.