Preparing for Chemo: getting ready for the mental battle

When I was getting ready for my first chemotherapy treatment, everyone gave me the same advice - expanded with my own experience.

Pack a blanket, cozy socks, and something to do - infusion can be super boring and I can almost guarantee you that it’s going to be cold. I usually wear sweat pants, an oversized sweatshirt, and fuzzy crocs. I also keep an extra pair of socks in my backpack along with some coloring books, a books, and that sort of thing.

Bring snacks - doesn’t have to be healthy, but something that isn’t gonna upset your stomach too much. Personally, I like cheez-its and goldfish a lot & I also have a “snackle” box that I bring with a variety of items to nom on.

Stay hydrated- you’ll want to carry around a large water bottle or cup. I would also pack some “water seasoning” (water flavor packets). Sometimes plain water can taste horrible during and right after treatment making it hard to want to drink any.

Don’t get me wrong- All of that was good advice and I continue to follow it to this day.

But after years of treatment, I’ve realized there were so many other things that no one warned me would deeply impact my day to day experience. Additionally, the impact would go beyond just the day of treatment.

If you’re about to start chemotherapy, here are a few things I wish someone had told me.

Your brain won’t work the way it used to.

The doctor mentioned it briefly during the early days but I wasn’t really prepared for the reality of how mentally exhausting the compounding effects of chemo are.

There are days when I would forget the word for something, walk into a room & forget what I needed, or have trouble stringing together complete sentences. Even thinking is difficult- I find that I am more susceptible to headaches in the days following chemo.

There are lots of tools out there that can help you keep notes - I’m building one myself. But find a method that works for you and stick with it. I would also recommend making available to your closest care team member (my husband in my case) so if you can’t remember something, at least someone else also has the same information.

You’re going to accumulate paperwork faster than you think.

Insurance letters. Lab results. Appointment summaries. Medication instructions. Business cards to every doctor, specialist, and therapist you’re going to meet.

It starts as one folder. But just like messes, it quickly multiplies and breeds like dust bunnies in a forgotten corner. You’re going to want to find a system early - I have a folder that I use for keeping the explainations of benefits and letters I received from the insurance company. I have one for each year of treatment I’ve undergone. As much as possible, I try to keep digital versions of receipts, appointment summaries, etc. Many dr offices have a patient portal - but it can be overwhelming to have to deal with several of them all at once.

Accepting help and finding resources to support you during the low points

One of the hardest lessons for me was realizing that I didn’t have to wait. People genuinely want to support you—they just don’t always know how.

You’re going to need support during the low points - and trust me when I say there will be low points. One of the things that I had to make my peace with is having others clean my home because I could not do it myself any more. While my husband can be on top of the majority of maintaining our home, he deserves to take time off too. We decided that we would hire cleaners to take care of the majority of the chores that needed to be done. We were lucky enough to have the resources available to do that, but there are free or low cost options available as well. I would scope potential options before you need them.

Treatment days are only part of the story.

The infusion itself might take a few hours. But managing cancer becomes a full-time job outside the infusion center.

Scheduling appointments.

Tracking medications.

Communicating with different doctors.

Remembering symptoms.

Calling insurance - so much of this, especially in the early days.

Following up on referrals.

Refilling prescriptions.

The mental workload can be just as exhausting as the physical treatment. I don’t have any real advice on tackling this other than saying - rest when you can and try not to push yourself too hard. Reaching 0 on your battery is often worse than taking the rest when you need it. When I get to zero it can take me days longer to recover.

Everyone’s experience is different.

One of the first things I did was search online for other people’s chemo experiences. Some stories were encouraging. Some were terrifying. (Dr Google is not your friend - you might freak yourself out more than anything else)

I quickly learned that everyone’s body responds differently - your experience won’t be exactly like mine—or anyone else’s. I developed strange allergies and symptoms that fell outside of what was considered “normal “.

Use other people’s stories to gather ideas and questions for your care team, not to predict your future. Keeping track of your own symptoms & reactions to medications would be better at predicting what future things you can expect.

Give yourself grace.

There will be days when you feel almost normal. There will be days when getting out of bed feels like a major accomplishment.

Healing isn’t linear.

It’s okay to rest. It’s okay to change plans.

It’s okay to admit that today is just hard. You will have to balance between two poles and it can be tricky to get that right - especially in the early days of treatment.

One last thought…

The thing I wish someone had told me most isn’t about nausea or fatigue. It’s that chemotherapy changes more than your body.

Often chemotherapy and cancer treatment in general changes how you prioritize your life - it makes it very obvious what is important and what can fall by the wayside for a bit.

It is going to take time to figure it out and you don’t have to handle all of that perfectly. You just have to keep taking the next step. And you can always try again tomorrow.

One day, one moment, one breath at a time.

OS