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13 Things People Don't Realize You're Doing Because You're Undergoing Chemo

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Most people have at least a little understanding of the basics of chemotherapy: drugs that are infused, injected or consumed over the course of a few weeks or months to treat conditions like cancer and autoimmune disease. But unless they’ve experienced chemo themselves or supported a loved one through the difficult process, they probably don’t realize all the ways chemotherapy turns your life upside down. They might not realize that even after each infusion is over, you are still coping with side effects, both physical and mental.

The potential physical side effects of chemotherapy are numerous — the American Cancer Society lists some of the most common as fatigue, hair loss, easy bruising and bleeding, nausea, constipation, “chemo brain” (similar to brain fog), changes in libido, and mouth and throat problems like sores. It’s also common to experience mental health side effects, such as anxiety and depression.

As oncologist Victoria Lavin, who also had cancer herself, told The Guardian about her own chemo experience:

It was no surprise that chemotherapy was gruelling…Giving patients permission to be kind to themselves in the first few days after treatment and not expecting to function anywhere near normally is something I will take back to the clinic.

To raise awareness of the small-but-still-significant ways chemo sneaks its way into your day-to-day, and show you that you’re not alone if chemo has affected you in ways you didn’t expect, we asked our Mighty cancer community to share things people don’t realize you’re doing because you’re undergoing chemo. What they shared is a testament to the challenges chemo throws at you — and how incredible you are for pushing through each one. Share in the comments what unexpected things chemo makes you do.

Here’s what our Mighty community told us:

1. “During chemo, I avoid eating raw foods while out due to the risk of contamination and because I’m immunosuppressed.” — Joanne W.

Since chemotherapy weakens the body’s immune system, people with cancer may have a harder time fighting off infections caused by germs and contaminants. Raw or undercooked food can lead to foodborne illness, so people undergoing chemotherapy are advised to avoid raw food.

2. “Having chemo made me lose control over my body. I would literally get sick without warning almost anywhere. Stress and emotional strain were definite triggers for me. To take back some control, I began carrying my own ’emergency kit.’ Inside I kept items like ginger/mint candies, essential oils, pain reliever, motion sickness bags and mouthwash. If and when I did find myself unwell these items brought me some much-needed comfort. Now, as an 11-year breast cancer survivor I can honestly say I never stopped carrying my kit. I think keeping it in my purse lets me hold on to those feelings of control… There is comfort in preparation because the outcome of cancer so very often unknown.” — Holly B.

Side effects can be brutal, so you may want to take inspiration from Holly and bring your own “chemo care kit” to help make the process more comfortable. Check out these 18 items our Mighty community recommended if you need some ideas.

3. “I don’t really like speaking on the phone. I find it exhausting. I’m also not very good with texts but I try. I know it bothers people but I just don’t have the energy most days.” — Maureen N.

Fatigue is one of the most common chemotherapy side effects, caused by the drugs directly and/or due to anemia that can also be caused by chemotherapy. The effects of fatigue are more than just physical — it can also leave you feeling emotionally drained, depressed and having difficulty concentrating. It’s OK to say no to social activities that you can’t handle right now.

4. “After chemo, I spend one week completely holed up in my apartment because my chemo is heat sensitive and light sensitive. I also end up nesting before any chemo… I gather all my stuff, clean everything, pull out all my comforting things, and prepare for the bed-ridden aftermath.” — Joanne W.

Chemo is known to cause light sensitivity, as well as other ocular problems like dry eyes and cataracts. One study conducted in India in 2012 looked at the effects of cancer on the eye and concluded that ocular side effects are likely under-reported. These products, recommended by people who are sensitive to light, can help protect your eyes and skin.

5. “The walking farts: My GI track had a field day. I was engaged while going through chemo and nothing says beautiful, sexy fiance like having an epic case of the walking farts. All. The. Time. My Great Aunt Myrtle would be so proud.” — Holly Bertone

You may find yourself running to the bathroom more (or less) than you used to, and, yes, passing gas more than you used to, thanks to chemo’s affect on motility of the intestines. Chemo can also change the bacterial flora in the intestine, causing pain, cramping and gas.

6. “I worked during my treatments but would have to take one week off after every chemo treatment to deal with the side affects. I literally laid in bed for a solid week and like a light switch, at day seven I would feel better, go to work as normal for two weeks, then start it all over again at week three. I did this for six months. One week down, two weeks ‘normal.’” — Kim M.

Depending on your job and nature of your illness and treatments, you may decide to keep working while undergoing chemo. Check out these tips for disclosing your health challenges to your coworkers and boss, and remember that you may be able to get accommodations through the Americans With Disabilities Act.

7. “Trying to be happy on the outside and not complain so people wouldn’t think of me as a burden.” — Kim M.

If you sometimes struggle with feelings of guilt for being sick and trying to remain “happy” on the outside, you’re not alone. But Mighty contributor Jenna O. reminds us: “I think we all hesitate to be vulnerable. To a certain extent, we learn to do it alone. Recently though, I’ve realized that perhaps the only person I’m burdening is myself. So, I remind myself that though I can do it alone, I don’t have to all of the time.”

8. “I always travel with a throw-up bag and my nausea pills. Nausea can come on fast and quick so I want to be ready. It’s saved me more times than I can remember.” — Joanne W.

One of the most well-known symptoms of chemotherapy is nausea. Chemotherapy activates the chemoreceptor trigger zone, which signals the brain’s “vomiting center.” The sight and smell of chemo could also cause “anticipatory” nausea and vomiting. Anti-nausea medications and natural remedies are typically used to treat this frustrating side effect.

9. “Downloading meditation apps and picturing tranquil beaches and listening to ocean waves while simultaneously throwing yourself a huge pity party at 2 a.m. because you’ve become an insomniac.” — Abby S.

With all the stress and anxiety and unknowns of cancer and chronic illness, it’s no wonder people undergoing chemotherapy may have difficulty sleeping. Other times, the medication itself may keep you up or cause drowsiness at other times of the day.

10. “I will not drive after chemo for 48 hours. I work as a criminal defense lawyer and I’m all too aware that you can be charged with driving under the influence. And chemo can be considered under the influence of prescriptions. So rather than risk anything, I won’t drive.” — Joanne W.

Depending on how you react to chemo, you may find yourself with symptoms like nausea, fatigue and impaired vision, which can impact your ability to drive safely, even if you “feel OK.” If you’re taking other drugs in addition to chemo, the reaction between them can also be a dangerous combination as it relates to driving. If you can no longer drive like you normally do because you have recently taken drugs, you could get a DUI. California law includes legal, prescription medications, even if they don’t make the user “high” and are necessary for the driver’s health, in its definition of “drugs.” Check the laws in your state to make sure you understand your risks.

11. “Not eating because I was too sick.” — Leslie U.

Nausea can of course cause a loss of appetite; you might also experience sensitivity to certain foods or smell or have difficulty chewing or swallowing. There are a few things you can do to try and increase your appetite, like avoiding strong-smelling foods, eating small meals and snacks throughout the day, eating whatever is most appealing to you, trying foods prepared and presented in new ways, and eating foods high in calories and protein.

12. “When I can’t sleep from the steroids, I like to spend my time Amazon shopping and Facebook stalking.” — Lana L.

Steroids are well-known for making you feel wired when you’re trying to get to sleep. As community member Danielle Meyers told The Mighty, “It seeps into every other aspect of my life. It takes a toll physically, emotionally and psychologically. Lack of sleep means lack of a normal life.”

13. “Finding strength you didn’t think you had. You find strength because you don’t have another choice.” — Abby S.

Getting through another chemotherapy treatment is no easy feat — but you keep going because you don’t have a choice. You might discover you’re stronger than you even knew — though it’s OK if you don’t feel strong all the time (or at all). Lanie Brewster Quinn wrote on The Mighty:

I’m going to continue to be proud of the strength I discovered in myself as a cancer survivor. I’m probably even going to keep telling other survivors I admire their strength  —  because we are stuck running this awful gauntlet and haven’t been knocked off, and that’s fucking impressive.

By sharing the “unseen” ways chemo impacts your life, hopefully, we can help others realize the incredible effort it takes to get through each treatment. And if you’re reading this because you’re undergoing chemo, take this as proof that you’re not alone in coping with any of these challenges. For more insight from others who have gone through chemo, check out these stories:

Originally published: April 11, 2019
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