What I Wish I Knew Before Starting Chemotherapy: A Practical Guide

If you are about to begin their own chemotherapy journey, I want to share what helped me and what I wish I'd known before my first infusion.

I'm nine rounds into treatment for classical Hodgkin lymphoma now, and those early days feel both recent and distant. The first infusion was the hardest because I didn't know what to expect. Every session since has been easier - not because chemo got less intense, but because I learned how to prepare, advocate for myself, and take control of what I could control.

Here's what I wish someone had told me.

What "Advocating for Yourself" Actually Means

Everyone says "advocate for yourself," but what does that actually look like in practice?

For me, it means taking responsibility for my own care in tangible ways:

Ask for extra appointment time. If I have questions for my oncologist, I request that they schedule an extra 15-30 minutes into the appointment specifically for discussion. This helps doctors not feel rushed, helps me feel respected as a patient, and ensures my questions get real answers.

Have the courage to ask scary questions. Sometimes the questions that need asking have potentially frightening answers. Ask anyway. Knowledge is better than fear-filled uncertainty.

Do your own research (responsibly). Your oncologist is your primary source of medical guidance, but educating yourself helps you ask better questions and understand your options.

Call when you need help. If something feels wrong or you're struggling with side effects, call your oncology team. Be patient - they're busy - but be persistent.

Advocating for yourself doesn't mean being difficult or mistrusting your doctors. It means being an active, informed participant in your own care.

Using AI as a Research Tool (With Caution)

I created dedicated chats with AI chatbots specifically for cancer questions. Yes, AI can give misinformation, so everything needs to be verified with your medical team. But I've found it incredibly useful for:

• Understanding complex medical terminology before appointments
• Exploring possible side effects and preventive measures
• Processing the emotional weight of diagnosis and treatment
• Comparing treatment protocols (out of curiosity, not to second-guess my doctors)

I use Claude for processing grief and emotion - it's particularly good at helping me articulate feelings I can't quite name. I use ChatGPT for more technical questions about my diagnosis, treatment plans, and medication interactions.

Knowledge is power. The more I understand about what's happening in my body and why we're treating it this way, the more control I feel over a situation that often feels completely out of control.

Preventing Side Effects Before They Start

Once I understood my treatment protocol, I asked my AI research assistant about possible side effects and how to prevent them. Then I brought those questions to my oncologist.

Here's what made a huge difference:

Neuropathy prevention: One of my chemo drugs causes nerve damage (neuropathy) in hands and feet. I ordered cryotherapy mittens and booties from Amazon to wear during infusions. Keeping my extremities cold reduces blood flow to those areas, which means less chemo reaches the nerves. It works.

Oral mucositis prevention: Another drug causes terrible mouth sores. I researched and found the Chemo Mouthpiece - an FDA-cleared oral cryotherapy device that keeps your mouth cold during infusion. Getting it required my oncologist to call and prescribe it, but it was worth the effort. I went from not being able to talk or smile for days to having little to no mouth pain. I wrote a review on it that I'll place it in the related posts at the bottom of the page.

This is what advocating for yourself looks like. It doesn't mean expecting your doctors to think of everything. We're adults, and we have responsibility in our healthcare too. Taking these extra steps completely changed my chemotherapy experience.

Diet Changes You Might Not Expect

Before I started chemotherapy, I could eat and drink anything I wanted. That changed quickly.

Sugar is what cancer thrives on, and it's also what irritates our mouths and mucosa the most. After starting chemo, my body couldn't handle the way I'd been treating it. I had to make major adjustments.

Hydration is more than just water: I started drinking more water, but noticed I wasn't actually staying hydrated. I needed electrolytes too. I started adding Nectar drink mix (a water enhancer my Nana found on Amazon) to help my body actually absorb the hydration.

Diet directly impacts side effects: Chemotherapy causes plenty of unpleasant digestive side effects - diarrhea, constipation, nausea. But I discovered my diet played a huge role in how severe those effects were. When I ate processed foods, everything got worse.

What helped me:

• Red meat protein like steak
• Healthy fats from avocado, and nutrient-dense vegetables like tomatoes and cucumbers
• "Eating my water" - focusing on hydrating foods, not just drinking fluids
• Using the AI chatbots to discuss my diet and understand what my body really needed

Once I brought my concerns to my oncologist, they referred me to the oncology department's internal nutritionist. This is another example of advocating for yourself - I got access to a resource because I asked a question. If I'd never asked, I never would have known they even had a nutritionist available.

The nutritionist helped me understand the exact minimum requirements I needed to meet. That took so much pressure off - I'd been way overshooting the goals and stressing myself out unnecessarily.

Your body is working incredibly hard during chemo. Fueling it properly makes a measurable difference in how you feel and how severe your side effects are.

What to Bring to Infusions

Be prepared to be there all day. My infusions typically take 4-6 hours. It's a long process, but it's nothing to be scared of - the chemo itself doesn't hurt.

If You Use Cryotherapy: Bring a Heating Pad

Those cryotherapy devices work by making you very cold. Bring a heating pad for your back or lap. Even though infusion centers provide warmed blankets, having targeted heat makes the cold bearable. Trust me on this one.

My infusion bag includes:

• Snacks (infusion centers often provide some, but bring your favorites)
• A book, tablet, or something to occupy your time
• Headphones
• A cozy blanket from home (yes, they provide warmed blankets, but bringing something from home makes me feel more comfortable)
• Comfortable clothes
• Phone charger
• Heating pad (if using cryotherapy devices)
• Water bottle

Making yourself comfortable isn't a luxury - it's a necessary part of this process. The more comfortable you feel, the better your body handles treatment. That's the goal, isn't it? To get better.

Pro tips:

My mother-in-law found shirts on Amazon with built-in port access. They made receiving chemo feel more natural, and the nurses had never seen them before. Anything that makes something so unnatural feel more natural is worth it.

You can get port pillows from Amazon as well. If you've had a recent port surgery or your port rests where the seatbelt uncomfortably crosses it, this pillow attaches to your seatbelt to make those drives to infusions easier and more comfortable.

I use a portable freezer that I received as a gift from my Amazon wishlist. This freezer keeps my cryotherapy devices cold on the drive there and while I'm not using them. Since the freezer is heavy and large, I have a portable wagon that I call the Chemobile, and it carries all my stuff and takes a load off my spouse.

I also have a cryotherapy cap that my brother gifted me. The cap helps keep my head cool during a specific chemo I receive to avoid scalp irritation. Sometimes, a cryotherapy cap can help stop your hair from falling out too - but they're still working on clinical trials to prove that.

Understanding Pre-Medications

Before they give you chemotherapy, they administer pre-medications (pre-meds). These typically include:

• Steroids
• Antihistamines
• Anti-nausea medication

These pre-meds can make you feel strange for the first few days as they wear off. You might feel wired from steroids, drowsy from antihistamines, or just "off." Be prepared to not feel like yourself, especially after your first session.

The first chemo hit me hardest because I wasn't prepared for how the pre-meds would affect me. Every session since has been easier because I knew what to expect.

The Anti-Nausea Medication Trap (Important!)

This is something I wish I'd known before my first treatment: long-lasting anti-nausea medications can interfere with short-acting ones.

They give you long-lasting anti-nausea medication before chemo, so you shouldn't need to take additional anti-nausea meds at home for at least a couple days. If you do need something, here's the trick: Zofran won't work, but Compazine (prochlorperazine) will.

Why? The long-acting medication "burns out" the receptors that Zofran targets. They work on different receptors in the brain, so you need the alternative while waiting for the long-acting one to wear off.

I didn't know this. I took way too much Zofran the first week, and it affected my serotonin levels in ways that caused a mental health crisis.

Check Drug Interactions - Especially SSRIs

Ask your doctors to review ALL your medications for interactions with chemo and pre-meds. This includes:

• Prescriptions you're already taking
• Supplements
• Over-the-counter medications

I was on an SSRI antidepressant when I started chemo. No one warned me that SSRIs combined with multiple anti-nausea medications can cause dangerous serotonin interactions. This contributed to the mental health crisis I mentioned above.

Ask your nurse how long to wait before resuming at-home medications for things the pre-meds already addressed (nausea, inflammation, etc.). Some pre-meds are long-lasting, and doubling up can cause problems.

Managing Multiple Medications

When I started chemo, I was on numerous medications including iron supplements. Iron interferes with absorption of other medications, so timing matters.

Here's where ChatGPT became incredibly helpful: I gave it my complete medication list and asked when to take what. We had a conversation about my limitations (I'm not available to take pills every two hours), and found a schedule that worked for my life, my body, and proper medication absorption.

This is another form of self-advocacy - taking responsibility for understanding how your medications interact and finding a realistic schedule you'll actually follow.

The First Session is the Hardest

I want to emphasize this: the first chemo session is typically the hardest, not because the treatment is worse, but because you don't know what to expect.

After that first one, you'll know:

• How your body responds to pre-meds
• How long things take
• What side effects you personally experience
• What comfort measures help you most
• What to bring next time

Each session gets easier as you learn your body's patterns and responses.

Tour the Infusion Center First

Infusion centers vary widely. If you're feeling nervous about your first treatment, ask for a tour beforehand. Seeing the space, meeting staff, and understanding the layout can reduce anxiety significantly.

Knowing where you'll sit, what the process looks like, and what to expect makes the first day so much less intimidating.

You're Not Alone in This

Starting chemotherapy may be terrifying. The unknown is always scarier than the known, even when the known is difficult.

But you will figure it out. You'll learn your body's rhythms. You'll discover what helps and what doesn't. You'll find your routine.

And you'll realize that while chemo is hard, it's also your weapon against cancer. Every infusion is your body getting stronger ammunition to fight with.

I'm nine rounds in now. I've learned so much since that first nervous day in the infusion chair. I've learned that I'm stronger than I thought, that small comforts matter enormously, and that taking control of what I can control makes all the difference.

You've got this. And if you have questions along the way, don't hesitate to ask - your doctors, other patients who've been through it, or even an AI chatbot at 2am when you can't sleep and need information.

Knowledge is power. Preparation is power. Advocating for yourself is power.

You have more power in this fight than you realize.

💜 Kayla