I’m not going to sugarcoat it. Chemotherapy sucks. Treatment varies for everyone. Medications might be the same, but each person handles them differently. So, while one person may have every side effect in the book, the next person may hardly experience anything. It’s a literal guessing game, and it’s terrifying.
I started chemotherapy to treat colon cancer in early October 2021. I sat down in that infusion chair, scared of the unknown. What sort of side effects will I have? What if my body can’t handle the chemo? Will I lose my hair? How effective are the medications? When will I start to feel sick? What if I pass out? I don’t want to throw up during my treatment! What if it kills me?!?! These were just some of the fears, questions, and thoughts that ran through my head.
My Oncologist, he’s a great Doctor, but he wasn’t realistic with me. Rather than sugarcoat it and tell me it was going to be easy – bad idea – he should’ve been upfront about all the possibilities of my treatment. He told me chemo would be easy, and I believed him. As a result, I wasn’t as prepared as I should’ve been when I started chemotherapy.
Thankfully, I’m done with treatment, and nearly two years later, I am still CANCER FREE.
I’ve compiled a list of the top 14 things you need to know before starting chemotherapy.
- Remember that chemo is different for everyone.
- Have ALL your post-chemo meds filled and ready to use.
- Have an Infusion Day bag.
- Stay hydrated – especially after chemo.
- Increase protein.
- Listen to your body.
- Move your body – walk!
- It’s OK to ask for help.
- Mindset is key!
- Be proactive with side effects.
- Be careful what you eat.
- You will have a compromised immune system.
- Never be afraid to ask questions.
- Chemo doesn’t mean terminal.
1. Remember that chemo is different for everyone.
I received the FOLFOX meds for my treatment of colon cancer (5-FU, leucovorin, and oxaliplatin). I was told the main side effects were neuropathy and maybe slight nausea, which most patients ” tolerated ” well. For whatever reason, my Doctor left out all the “potential” side effects. I’m sure he didn’t want to scare me more than I already was, but I needed to know the good, the bad, and the possible ugly. So that’s what you need to do – go into your treatments with an open mind. It may be awful, but it may also not be so bad. It’s chemo, so either way, it’s going to suck.
2. Have ALL your post-chemo meds filled and ready to use
I can only speak for my chemotherapy, but I can say that the anti-nausea meds are necessary for all treatments. Just have them filled and ready to use (Ondansetron was my best friend). The last thing you want to happen is the nausea sets in because it will, and you have nothing to make you feel better. Trust me; you will need it.
After some, if not most, chemo sessions, you take Dexamethasone for two days. This keeps the nausea under control and gives you a boost of energy. Even though this medication gives you flushed cheeks, you learn to rely on it during your treatments.
Last but not least, if you have a MediPort, you’ll want to use Lidocaine. It’s a topical cream to numb the area before the port is accessed. It may seem silly, but it does make a difference.
3. Have an Infusion day bag
Depending on your treatment plan, chemo sessions can range from 2 to 4 hours, sometimes more. You’re hooked up to a machine pumping chemo into your body the entire time. And yes, the time drags on, especially if the nurses are running behind. Thank goodness a friend told me about a “chemo bag,” or else I would’ve never considered it.
So what’s in a chemo or infusion day bag? Necessities.
- Comfy blanket. You will get chilly from the meds. Even though they have blankets at the treatment facility, bringing your own from home makes it more cozy.
- Laptop, iPad, or cell phone to watch NetFlix or movies. Watching a movie or show will help the time go by faster. I only watched comedies on my treatment days for obvious reasons.
- Earbuds, Airpods, headphones. It would be best if you had these to hear what you’re watching and also to drown out the noises and chatter.
- Book, magazine, or crossword puzzles. In case you’re not in the mood to watch anything.
- Snacks. Most treatment centers have a little kitchen or offer snacks, but it made me think I was in the hospital, so I brought my own. Easy-to-digest snacks like crackers, bananas, or protein bars, to name a few.
- Water or Gatorade. It’s essential to keep yourself hydrated.
- Chapstick and lotion – your lips and hands (entire body, for that matter) get dry from the meds.
Please make sure to personalize it for you. After the first treatment, you’ll know what to expect, so add whatever will make your infusion day as stress-free and relaxing as possible.
4. Stay hydrated – especially after chemo
Hydration is your secret weapon when going through chemo! I can’t stress enough how important it is to have water on hand during a chemo session, especially after treatment. Chemo can be tough, no doubt about it, but sipping on water throughout the day can help flush out those toxins from your system. Plus, it can help with some side effects, like dry mouth.
Dehydration is common after chemo treatments. Side effects, such as nausea, vomiting, diarrhea, and mouth sores, can cause a person to become dehydrated quickly. It’s important to get electrolytes in your body; they are vital for our bodies to function correctly. They are minerals in our blood and body fluids that carry an electric charge. These include potassium, sodium, calcium, and magnesium, among others.
5. Increase protein
This is a must-know before starting chemotherapy. First of all, your appetite is going to be affected by treatment. However, nutrition is vital during this time—especially your protein intake.
Chemotherapy attacks rapidly dividing cells, including cancer and some healthy cells. Protein provides the building blocks (amino acids) needed to repair and rebuild these healthy cells.
Protein is necessary to produce antibodies to help fight off infection, which is a risk during chemo. Not only does it protect our immune system, but it can also provide energy to the body.
Most cancer centers have dietitians on staff who will help patients create nutrition plans. If possible, schedule a meeting with one before you start treatment. A dietitian will let you know foods to avoid, foods that will help with side effects, and the recommended amount of protein to consume daily. I wish I had done this!
6. Listen to your body
Going through chemo can feel like a whirlwind, and it might seem like your body is speaking a new language. But one of the most important things you can do during this time is to listen to what it tells you. Do you feel tired? That’s your body’s way of saying it’s time for rest. Have an unexpected craving? Your body might be asking for a specific nutrient. Don’t fancy certain foods? Listen to that, too; your tastes can change, and that’s okay.
Remember, it’s normal for your energy levels and appetite to fluctuate. Please don’t push yourself too hard or feel guilty for slowing down. Your body’s job right now is to heal, so give it the time and space to do just that. Be gentle and patient, and listen closely because your body is doing its best to navigate this journey.
7. Move your body – walk!
This was a tough one for me. Doing any physical activity after a chemo session was practically impossible. So my husband and I made a plan – on my worst days after chemo (always days 4 and 5), I walked because that’s when I needed it the most. Most of the day was spent either in bed or on the couch, sleeping. But at some point throughout the day, my husband forced me to get up, and we would go for a walk. Sometimes just up the street, other times around the block. We set the timer for 20 minutes, and in that time, I moved – slowly, but it was movement nonetheless.
Here’s why movement is so important during chemo:
- It boosts your mood.
- Improves circulation by getting your heart pumping.
- Reduces fatigue.
- It helps flush out the toxins from chemo.
- It helps with digestion. Chemotherapy causes many digestive issues, such as heartburn and upset stomach.
Other beneficial forms of movement while undergoing chemo are yoga, stretching, low-impact cardio, and strength training with light weights. Always listen to your body; it’s just about gentle movement.
8. It’s OK to ask for help
Chemo is a challenging journey, and it’s not one you have to walk alone. Sometimes, we all need a little help, and that’s ok. You see, asking for assistance doesn’t mean you’re weak or a burden; it simply means you’re human. Everyone, even the strongest among us, needs support sometimes.
Whether it helps with cooking meals, laundry, or just needing someone to chat with when you’re feeling low—these are all valid requests. Remember, your loved ones want to be there for you, and asking for help makes them feel involved and valuable. Plus, letting others in can ease your stress and allow you to focus more on healing and less on your to-do list.
Before starting chemo, a friend put together a meal train for the weeks I had treatment. At first, I felt terrible accepting meals from other people; I knew they had busy lives. But after my first chemo session, my husband and I were beyond grateful for the meals we received. It made life easier around the house. I could relax; my husband could help me when needed while also working, and we were all fed!
9. Mindset is key!
Mindset plays a significant role while going through chemo. I know it’s not a walk in the park, but holding onto a positive perspective can be one of your most potent tools during this journey. A positive mindset isn’t about ignoring the challenging parts or pretending everything is perfect. Instead, it’s about recognizing the challenges and finding strength, resilience, and even moments of joy within them.
It’s about believing in your ability to endure and cope. It’s about looking at a difficult day and saying, “Yes, this is tough, but I’m tougher.” A positive mindset can help you manage stress, bounce back from setbacks, and foster a sense of hope. Remember, it’s okay to have hard days. On those days, leaning on your support network or speaking with a mental health professional can be helpful. Mindset is a journey, not a destination, and each step you take toward positivity is a victory.
I had more than my share of ugly, negative days, but they were always short-lived. Prayer, meditation, and a positive support system got me through my darkest and most painful days.
10. Be proactive with side effects
Knowing the possible side effects of your treatment plan is essential. Some side effects can be managed with preemptive strategies. Following is a list of preventive measures I took that helped me:
- Nausea: as mentioned in tip #2, have your post-medications filled before starting chemo. The anti-nausea meds will become your best friend because they work. So use them!
- Neuropathy: nerve damage that can cause tingling, numbness, and pain in your hands and feet. I even experienced it in my throat. One of the main side effects of the chemo med, oxaliplatin, is neuropathy. My oncologist told me not to touch, eat, or drink anything cold for seven days after treatment. I always washed my hands and brushed my teeth in lukewarm water. My feet were always covered to avoid the cold floor. On chemo days, I brought gloves, a beanie, and a scarf to wear when I left the treatment center. I wasn’t able to avoid neuropathy, but at least I was able to ease the symptoms.
- Mouth sores: this was, by far, the worst side effect I experienced. I got mouth sores after my first treatment. They were so bad; even drinking water was painful. Ice chips and cold smoothies are recommended during treatment to prevent mouth sores. However, certain meds, like the one I had, you couldn’t have anything cold because of neuropathy. The only thing that made the mouth sores disappear was a simple mouth rinse that WORKS! Mix 1/4 teaspoon of baking soda and 1/8 teaspoon of salt in 1 cup of warm water. Swish it around in your mouth for one minute and spit it out. I did this after every meal and before I went to bed. After that, I didn’t have mouth sores anymore.
11. Be careful what you eat
Chemotherapy can change your relationship with food in a few ways due to physical side effects and the impacts on your taste buds.
- Taste Changes: Chemo can alter your sense of taste, making certain foods taste different than you remember. Foods may taste bland, metallic, overly sweet, or salty. Some people also experience a reduced appetite. These changes can make it difficult to enjoy eating, but they are usually temporary and improve after treatment ends. Please stick with bland, essential foods during your treatment week.
- Nausea and Vomiting: These are common side effects of chemo. Some foods can exacerbate these feelings, while others can help soothe them. Generally, bland foods like crackers, rice, or bananas are easier on the stomach. It can also help to eat smaller, frequent meals instead of three large ones. For example, during my treatment weeks, I lived on the cream of wheat with honey and cinnamon, sourdough toast, apple sauce, grilled chicken, and rice.
- Immune System Impact: Chemotherapy can weaken your immune system, making it harder for your body to fight infections. Because of this, avoiding foods that could increase your risk of foodborne illness is important. This includes undercooked meat, raw seafood, unwashed fruits and vegetables, and unpasteurized dairy products.
- Nutritional Needs: Your body needs plenty of nutrients to heal and recover from treatment. However, chemo can make it harder for your body to absorb nutrients or increase your body’s need for certain nutrients. This is where the dietitian can be highly beneficial. They create meal plans that will provide adequate nutrition.
- Mouth Sores: If you get mouth sores, stick with soft, mild foods that can be more comfortable to eat. Avoiding spicy, acidic, or rough-textured foods can also help.
12. You will have a compromised immune system
As you know, chemotherapy targets rapidly dividing cells in your body. This also includes cells in your bone marrow that produce white blood cells that help your body fight off infections. As a result, chemotherapy can often lead to a condition called neutropenia, which is a low level of neutrophils, a type of white blood cell. This can make you more susceptible to infections.
Unfortunately, it’s challenging to avoid neutropenia while going through chemo. This is because your body needs time to recover and produce more white blood cells after a round of chemotherapy. However, you can prevent setbacks by maintaining a nutrient-dense balanced diet, taking protective measures to stay healthy, listening to your body, and getting plenty of rest.
Halfway through treatment, my WBC got dangerously low to the point they had to stop chemo for a few weeks. So I was given a shot, Neulasta, which stimulates the bone marrow to produce more white blood cells. It’s an effective medication. However, the side effects are brutal. The best way to describe how I felt the day after a shot was getting hit by a semi. I had flu-like symptoms and pain in my bones.
It’s common to receive these types of shots right after a treatment to help elevate your WBC. Taking Claritin the night before the shot and then for two days after will help minimize the side effects.
13. Never be afraid to ask questions
This is a thing you must know before starting chemotherapy. Ask questions. Always. Don’t be afraid. I was assigned a private nurse while undergoing treatments. I could text, email, or call whenever I had issues or questions. She was a wealth of knowledge and provided guidance and encouragement. It made a world of difference to me.
Going through chemo is a journey filled with ups and downs; sometimes, it can feel like navigating an entirely new world. That’s why asking questions is crucial— knowledge is power in this situation. Every question you ask, no matter how big or small it seems, is a step towards understanding your treatment better. It helps you become an active participant in your care.
Remember, there’s no such thing as a silly question regarding your health. If you need clarification on a medication’s side effects, ask. If you’re curious about why a particular test is being done, ask. If you’re feeling a new symptom and unsure if it’s related to the chemo, absolutely ask. Your healthcare team is there to support you, and they want to ensure you’re as comfortable and informed as possible.
So, don’t hold back. Instead, you can bring a notepad to your appointments, jot down your questions as they come, and fire away at the next opportunity. Because every question you ask is a step towards feeling more in control and empowered during your chemo journey.
14. Chemo doesn’t mean terminal
I think it’s essential to clarify that having chemotherapy doesn’t automatically mean your situation is terminal. Chemo is a powerful tool in the fight against many types of cancer, and it’s used for different reasons. Sometimes, it’s used to eliminate cancer. Other times, it’s used to slow the cancer’s progression, reduce symptoms, or prepare the body for further treatments like surgery or radiation.
It’s a serious treatment for severe diseases but not synonymous with ‘terminal.’ Countless people have undergone chemotherapy and lived cancer-free lives. It’s normal if the word ‘chemotherapy’ feels daunting, but remember, it’s not a sign of defeat—it’s a step towards healing. Chemo is a testament to modern medicine’s power and your strength as you stand up to cancer. Every person’s journey with cancer is unique.
Final Thoughts
The word cancer will never be easy to hear, especially if it’s a diagnosis you or a loved one receives. But I will never forget July 21, 2021, the day I listened to those words, “You have cancer”—the out-of-body feeling, the numbness, and the flood of emotions. I’m beyond grateful that I had a fantastic support system throughout my cancer journey. It’s what kept me going.
The power of a strong support system while navigating your chemotherapy journey is a necessity. Whether it’s family, friends, or cancer support groups, these networks provide a pillar of strength during a challenging time. They offer a listening ear, a helping hand, and an understanding heart.
It’s okay to lean on others and share your feelings—both the highs and the lows. It’s okay to ask for help because chemotherapy is not a solo mission. Plus, a solid support system can do wonders for your mental health, helping to combat feelings of anxiety, isolation, or overwhelm. So, embrace the love and support around you because you’re not just a patient but a warrior. And warriors have an army behind them. Remember that you are not alone in the grand scheme of your chemo journey.
