platter of tapas

Hungry, but Can’t Eat: Food Issues While Undergoing TCHP Chemo

I am absolutely starving.

Okay, not starving. I have weight to spare. But I am so motherfucking hungry I can barely put it into words.

After every chemo session (I’m done with 4 out of 6 at time of writing), there’s a window of 10–11 days where I can barely eat anything because it is physically painful to do so, and everything tastes disgusting or has no flavor at all. It’s a weird side effect I didn’t realize could happen before chemo, and it’s something that people who aren’t experiencing cancer treatments will never be able to comprehend. And thank God for that.

Let me try to explain it for you in hopes you never experience this awful feeling. And if you’re currently undergoing this regimen and reading this blog, I feel your pain. I am with you.

While on chemo, specifically the TCHP regimen, your tongue goes numb beginning the day after infusion. When you’re at the hospital, it’s ok to eat if you feel inclined. You can eat while undergoing infusions, but as the day progresses, you will start to feel less interested in eating.

One of the things this chemo regimen does is change the way food tastes, from flavors to textures. So by the time you get home from an infusion, you might be hard pressed to eat. After 2 of the 4 sessions I’ve had so far, I have eaten when I got home from chemo same day. It is very situation-dependent.

But by the next day, your tongue starts to feel funny. I’ve previously described the feeling like a sock on your tongue, and there’s no better way to put it.

Picture this:

You’ve put a tight sock on your tongue, but you need to eat. But every piece of food you place on your tongue feels like a foreign object. A flavorless object occupying space in your mouth. On top of that, there’s something stuck in your throat. It’s not food because you haven’t been able to get anything down. It’s another foreign object. Lodged there. You can’t move it. And even drinking water won’t help. Actually, drinking water might hurt. Because water is also disgusting.

That’s how eating feels for nearly two weeks after a chemo infusion.

Your throat feels full and like it’s burning, your tongue doesn’t work, and your stomach absolutely hates you.

Foods are too sweet. Too greasy. Too spicy. Too salty. Too sharp. Too rough.

Food smells amazing. But the taste? God awful. Avocados? Bitter. Ice cream? Like you licked the inside of a bag of sugar. Potatoes? Greasy, gross, vomit-inducing.

I tried making myself some pico de gallo about 5 days after my last infusion. I used one serrano pepper. They’re hot, but nothing I can’t normally stomach with ease. The minute one diced pepper touched my tongue, I started gagging hysterically and had to down a full bottle of water. Spice is intensified; sweet is nearly unbearable. All of it is horrible.

Because of my inability to eat, I drop about 10 pounds in body weight after each chemo session. I’m currently down 28 pounds since the start of infusions, with another five or so days to go until I can eat with normalcy after this session.

“That’s not 10 pounds! You’ve been through four sessions! You’d be down 40 otherwise!” Good job. I usually gain back about ~5 pounds the final week before the next treatment…because like magic, my tongue works again.

Some people on other chemo regimens have noted their insatiable hunger. I guess you could say I’m insatiably hungry, too – I just can’t act on it. Some chemos require you to take oral steroids as part of your treatment plan. I am on Dexamethasone (an oral steroid) the day before, day of, and day after chemo. But after those three days, I don’t take any steroids, so I don’t have this bottomless pit stomach feeling others have experienced.

The non-eating isn’t even the worst part!

On top of not being able to eat, you’re plagued with awful, debilitating fatigue. Because you can’t eat, your energy and hydration levels are at unhealthy lows. You’re exhausted. Your head hurts. You’re dizzy. You can barely stand up straight. Want to walk a flight of stairs? Fuhgeddaboudit. Everything takes so much fucking energy reserve and you have so little because you’re not eating. And you can’t even FORCE yourself to eat without possibly getting sick in the process.

Fun fact: Some people online have told me to just “suck it up and find something to eat!” like I wouldn’t have already tried that if I could. I detest vomiting, so anything I can do to prevent myself from throwing up is what I’ll do, but thanks anyway, internet advice-giver. P.s. I haven’t vomited once since on chemo and hopefully can make it through the rest without doing so.

There’s a mental aspect to it, too.

The mental toll of not being able to eat food is so much harder than I’d ever have thought. My mind is consumed with what I cannot eat. Days drag by because what might normally be considered “mental” breaks for meals just don’t happen. I’ve broken down crying at least once every window between chemos because I can smell and see food, but can’t taste or eat it.

For me, food is a part of life. So not being able to look forward to a hot meal at the end of the day or casually grab a donut and coffee for a fun and fast breakfast is so taxing on my mind. It might seem crazy, but our lives literally surround food. One of the many joys IN life IS food. Taking that joy away makes the days drag. Makes my emotional state so numb. So disinterested in everything.

You know how you might joke that you look forward to your morning coffee? I can’t even do that. I have barely consumed any caffeine since April because it’s too bitter or hard on my stomach. I would love to wake up and have a sweet roll. An egg sandwich. Log off work and go out for spontaneous sundaes or fraps at Starbucks.

But everything has to be so strategic, so deliberate. I’m already planning ahead what I can eat and when once these next few days are up.

So what do you do when you can’t eat?

I torture myself, naturally.

I spend way too much time on Instagram and TikTok watching cooking videos, dreaming about the food I can’t even dare to eat. Over the past few months, I’ve followed a couple of amazing chefs whose food I drool over for days on end:

I spam-send my boyfriend videos of mouthwatering food, continually telling him what dish I want to eat next. He tells me to make a list so we can remember after each chemo session. Lately, I’ve been on a Mexican food jag with some spicy Asian noodle dishes sprinkled in between. Pretty on par for what I normally want to eat, to be fair.

Somewhere toward 6–7 days after chemo (today, as it were), I start feeling more myself. I ate a banana and a mini bag of 100 calorie pretzels. A whopping ~250 calories or so for my day. But hey, it sure beats not eating anything. Sometimes I’ll get the urge to cook for my family, then immediately regret doing so as I can’t taste anything I’m cooking. Happened last night when I made one of my favorite go-to quick dishes, copycat Panda Express chow mein noodles.

By the end of the week, around 8–9 days post chemo, some taste starts coming back. It comes back rather gradually. Using the 1–10 scale for 10 being full-flavor, I hit about a 5/6 a week and a half out from infusion day. About 12–14 days post infusion, it shoots back up to about an 8 or 9. Then, for 7 glorious days, I can eat food.

Do you have food recommendations since we have to eat *something*?

Yes, but they vary per person. A few things that have worked for me are:

  • Plain or cinnamon apple oatmeal
  • Mac and cheese, depending how many days it had been since chemo
  • Strawberries
  • Bananas
  • Blueberries
  • Slim Fast shakes (not too sweet, lots of protein)
  • Plain pretzels
  • Peanut butter
  • Peanuts
  • Cheese, though it still tasted weird
  • Plain white rice
  • Plain rotisserie chicken, again, depending how far out from treatment

What foods do you recommend staying away from?

It varies per person, but here’s a quick list of things I wouldn’t dare touch during chemo + 10 days:

  • Fried foods – for the love of God, don’t do it
  • Anything spicy (even if you can handle the hot stuff like I normally can)
  • Meat, especially beef
  • Seafood
  • Coffee or caffeinated drinks
  • Alcohol
  • Candy, ice cream, pastries
  • Soda
  • Lemonade

When you can taste food again, what do you eat?

Anything and everything my body can handle. A few takeout/dine-in highlights over the course of chemos have been:

As you can see, I have a few food trends: Mexican food, nachos with brisket, Chinese food, and wings of various sorts. And as spicy as I can handle it on good days.

What sucks is because I have to eat so little over the first 10 days, I can’t eat as much as I’d like on the days thereafter. A few times I’ve pushed it, but usually I have more food than I can handle, which results in leftovers I might not necessarily finish.

Closing thoughts

Anyway, this ode-of-sorts to food is a way for me to reach out to fellow people undergoing TCHP to say: you’re not alone. This part is fucking horrible. I’ve never experienced a worse feeling. Some people might try to compare not being able to taste foods when their nose is stuffed up or when they have a cold or the flu, but I promise you – nothing is similar to this.

Please try to eat something small so you can stop feeling like utter shit. I can barely move or function on the days I can’t get anything down, so please try your best. Forcing water and taking your anti-nausea meds might be your best bet. So far bananas, strawberries, and other berries have been my saving grace.

And for anyone else just reading along, thank you for listening to me bitch about how hungry I am and how awful this side effect is. Next time you’re around someone undergoing chemo, ask them how they’re feeling food-wise. If it’s a good day, offer to buy them lunch! ♡