17 Things People Never Tell You About Having Cancer

A cancer diagnosis is often life-changing, disrupting your job, your relationships, and, of course, your health. It can mean a complete transformation of a person's day-to-day life. But while the experience of having cancer has been featured in countless articles, films, TV shows, and more, there are some realities about living with cancer that those who have gone through it—or are still going through—feel are too often overlooked in portrayals of the disease. Here are 17 things people never tell you about having cancer.

While the nausea and discomfort of chemotherapy is familiar to most, fewer people realize that losing your hair is actually plenty uncomfortable, too.

"Your scalp hurts. At least for me it did. It was so painful," non-Hodgkin's lymphoma survivor Arielle Rosen told The Patient Story. "So I had very, very white-gray hair naturally—now it's a bit darker grown back in—but you could see the red of my scalp and I just wanted it off. It was painful. No one tells you that."

Doreen DiSalvo, a breast cancer survivor, told The Patient Story that for her, the worst part was her eyelashes: "My eyelashes hurt a lot when they were falling out. You wouldn't think as small as they are that they'd be as painful, but it was like little spikes."

Not only can chemo put a serious dent in your appetite—it can also wipe out your taste buds. Sometimes, the result is a desire for sweet treats and junk food.

"Everything tasted like cardboard, which sucked because I love to eat," breast cancer survivor Amelia Laytham told The Patient Story. "The only things I could taste were sweets. People started sending me fruit arrangements, someone sent me a bunch of cupcakes. I ate a lot of fruit and a lot of desserts."

Shirley Pattan, an ovarian cancer survivor, told The Patient Story, "During the first few rounds, all I wanted was crunchy Cheetos. I didn't want to eat anything else."

Finding out a friend has cancer can be overwhelming for many people, leaving them unsure of what the most appropriate action would be in a situation they've never experienced. For some, that uncertainty and anxiety can be too much, and they run the other way.

"Not all of your friends and family will be able to handle your diagnosis," says Jennifer Kehm, development and liaison manager at Cancer Caring Center. "They may go into hiding. It may hurt your feelings, but try to communicate."

Rebecca Pine, who conducts workshops and speaking engagements related to her experience as a 10-year breast cancer survivor, echoes this. "I was surprised to see that some people in my life couldn't handle the fact that I had cancer," she says. "As I became consumed with sifting through surgical and treatment options, some of my relationships naturally ended."

But just as often, cancer survivors describe how it brings others in their life closer, or how those they hadn't spoken to in years come back into their lives. Often, it's not the people you expect.

"Some relationships grow stronger," says Pine. "I was surprised to see those who were truly there for me were not those I expected to be."

Just as cancer can result in stronger friendships—sometimes with people who surprise you—it can also bring new people into your life, and put you on immediately intimate terms.

"Cancer is not a gift, but the people it brings into your life are," says breast cancer survivor Lisa Lurie, co-founder of Cancer Be Glammed. "During chemo treatment, I was bald and often wore headscarves. It was clear that I had cancer. During a shopping trip to Trader Joe's, one of the cashiers came to my checkout with a bunch of flowers. She had bought them for me with her own money and said, 'You deserve flowers.' [You experience] incredible acts of kindness from strangers, your medical team, and others."

When your health becomes a matter of life and death, you might start to take it very seriously for the first time. That can be doubly true for those who go through cancer in childhood, introducing them early on to the importance of their health, and how every decision they make can impact it.

"It is what drives me to exercise daily, sometimes twice a day if I have the time, swallow a fistful of vitamins each morning, and even get a master's degree in nutrition," says certified nutritionist and brain cancer survivor Paul Claybrook, who runs Super Duper Nutrition. "I have a need to employ every tool at my disposal that can or even might improve my health and thus lower my risk of future disease."

Those who have not experienced it might think that leaving the hospital after an in-patient treatment or surgery would be a moment of relief—finally getting back to the comforts of home and out of the sterile hospital environment. But many cancer survivors describe feeling more stress than comfort.

"I wanted to stay a third night, but the whole team said it would be better if I went home," renal cell carcinoma survivor Rachel Rhee, told The Patient Story. "I think it was just the fear I had creeping up again. I wanted to be around medical professionals because the what-ifs were kind of paralyzing for a little bit."

Casey Head, a survivor of acute lymphocytic leukemia, described experiencing panic attacks when having to leave the hospital.

"I was like, 'Oh my god, my team's not going to be here. What if something happens?'" she said. "Everything starts going through your head and you start freaking out. They were like, 'You have to leave. It's time to go home,' but I just kept asking if they were sure. My mind kept going to worst case scenarios."

We hear plenty about the health challenges that one goes through when battling cancer, but what's often forgotten is how damaging cancer treatment can be on a person's finances.

"Even with insurance, cancer will wreak havoc on your money," says April Johnson Stearns, founder and editor-in-chief of Wildfire Magazine, dedicated to younger women who are diagnosed with breast cancer. "For years, you will have follow-up appointments, scans, surgeries, medication. You might find it difficult to return to work due to 'chemo brain.' You might find that the work you did before cancer is no longer fulfilling."

More bad news: Beyond the trauma a body can go through—with the treatments, surgeries, and sometimes losing parts of one's physical body—cancer can also all but wipe out your sex drive.

"I had no idea that breast cancer would rob me of the hormones that fed my libido and would fling me into early menopause, making sex rather difficult," Stearns says. "I'm too young for this!"

When we talk about cancer going into remission, those who have never experienced it might imagine that means your health returns. But while remission is always good news, it doesn't mean everything's back to normal.

"There are many side effects that linger after treatment," says Rebecca Adams, CEO and co-founder of My Alchemy Skin Care, which was inspired by her experience with cancer. "It's been 29 months NED (no evidence of disease), and I still experience some, especially neuropathy in fingers and toes."

Papillary thyroid cancer survivor Cathy McKinnon, owner of Wellness Warrior Coaching, adds that while many assume that "remission" means "fine," the facts are different. The "reality is that one's body never returns to the prior state and there are life-long impacts that one has to manage," she says. "The bright side—you are alive to see another day."

And just as side effects can last long after remission, if cancer does come back, it can be more aggressive than it was before.

"This happened to me after a short few months remission," Adams says. "It seems to be pretty standard after treatment ends. Either cancer metastasizes or a secondary cancer occurs. This is proof chemo does not 'cure,' because it doesn't kill the stem cells."

While the experience of a cancer diagnosis, treatment, and remission is an exhausting one, many of those who go through it say it also inspired them to give back.

"I didn't expect that my life would be so completely changed by the experience of cancer that I would dedicate my life to giving back to the cancer community," Pine says. "My new work is deeply meaningful to me. This was an unexpected gift."

It may have been a long time since you wrote in a journal, but the experience of living with cancer can renew the value—including the spiritual and emotional benefits—of cracking open a diary to a blank page and jotting down some thoughts.

"One of the things I did was I kept a journal," Hodgkin's lymphoma survivor Lia Sartorio told The Patient Story. "I've written about my thoughts, feelings, or anything just about every day."

Writing for Cancer.net, Amber Bauer cites a wealth of research that illustrates the health benefits of journaling. A 2014 study in the Journal of Clinical Oncology found that subjects with kidney cancer who did expressive writing exercises suffered fewer symptoms than those who did not. And a 2008 report in The Oncologist found that writing for just 20 minutes can change the way cancer patients think about their disease.

In the process of jotting down one's experiences, or reviewing the journal later, many cancer survivors describe coming to another surprise: There are plenty of happy moments among the unpleasantness of cancer treatment.

"Part of my journaling is keeping track of the good things that have come out of this," Sartorio said in her testimonial on The Patient Story. "My list is so much longer than I could've imagined. It's something I recommend to anyone."

Hodgkin's lymphoma survivor Madi Jones described to The Patient Story how she regrets not doing more journaling for these very reasons. "My mom always tried to take pictures when I was at appointment, and I was always so mean," she said. "I did not feel like taking pictures. Looking back on it, I wish I had those memories so I could look back on it and reflect. No one told me to journal. I wish I had done it though because it would've been useful."

While a cancer diagnosis can be isolating and difficult, many of those who have faced it describe the feeling of strength they gained from sharing their experiences publicly, in small groups, and one-on-one.

"Sharing my cancer experience with others gave me a greater sense of purpose and meaning than I have ever felt before in my life, and helped me to overcome feelings of isolation," says cancer survivor Fabian Bolin, who recently launched the app War On Cancer. "I struggled with loss of self-worth after being diagnosed, and many people affected by cancer also report losing their sense of identity and purpose, as well as struggling with the inevitable pity received from those around them."

When we hear about "blood transfusions," we usually imagine they exist to replace blood lost during surgery. That is often the case, but blood transfusions can also be something of a next-level energy drink.ae0fcc31ae342fd3a1346ebb1f342fcb

"I was amazed by the immediate energy boost that blood transfusions provided me while I was going through chemotherapy," says Hodgkin's lymphoma survivor Stephenie Lai, who experienced 20 blood and platelet transfusions before going into remission and now works for the American Red Cross. "During my chemo treatments I would feel really exhausted, and blood transfusions gave me the boost of energy I needed. After the first time I received a blood transfusion, my nurse even noticed the difference right away."

Cancer may be life-changing, but it also leaves many people with a sense of renewed or transformed purpose, leading them to direct their energy toward neglected projects or to find new importance in the things they do. Instead of an end to life, it can mean the beginning of a new one.

"Most people think cancer is a death sentence, and there are a lot of people who have lost many family members because of it," Bolin says. "I want people to remember that two out of three patients survive, and many people who come out of cancer are going to come out of it a happier person because living through the illness gives you invaluable knowledge and appreciation for life."