While writing this post, I just completed cycle 5 out of 6 of chemotherapy treatment. It’s hard to believe I am already standing with one left, but at the same time, it feels like it has taken forever to get to this point.
From the beginning, the chemotherapy side effects were the star of the conversation. And boy are there a lot of side effects.
Overall, I feel I have been blessed to have not experienced as severe side effects as are possible with this treatment. It has certainly not been easy, but there is some comfort in the fact that I know it could be much, much worse.
In this post, I’m outlining the general steps I’ve taken to make my bad weeks more manageable, as well as ways I’ve found to manage the chemotherapy side effects I’m experiencing. You can read background information on my treatment in this post.
This is my experience alone and all patients and treatments are different. I am not a medical professional; always consult your doctor to manage your personal health and treatment.
Before diving into specific chemotherapy side effects, I have a few pieces of general advice that have helped me quite a bit.
Take on side effects one at a time. Learn something from each one.
This is the best overall advice I can give for dealing with chemotherapy side effects. If something didn’t go well in one cycle, the (crappy) thing about chemo is that you’ll probably get another whack at it in the next. Rather than just expecting something and trying to wait it out, I’ve tried to prepare, prevent, or find new ways to find relief.
Use available resources.
With advancement in technology and cancer research, there are so many resources available at our fingertips. I suggest this with the disclaimer that this requires balance between feeling prepared and in-the-know vs. giving yourself a break from all things cancer.
- Oncology Staff
This is number 1 on purpose. The oncology nurses and medical assistants I’ve worked with have seen it all and can offer suggestions based on their extensive work with patients.
I don’t want to mess with interactions between home remedies and chemo drugs, so I always discuss things I want to try with the staff first. - Handbooks
Chemotherapy and You by the National Cancer Institute
My doctor gave me this booklet before starting treatment, and I’ve found it really helpful. It’s organized by type of side effect so you can quickly look something up. It offers ideas for things you can try and makes it clear when you need to call your doctor.
Advice for this handbook (given to me by a nurse): Don’t read this cover to cover. Use it as a reference to look things up as needed. It would be waaaay too overwhelming to read about all possible chemotherapy side effects.
Cancer Treatment Handbook by Judy C. Kneece, RN OCN
I got this during my initial appointment with my surgeon. The handbook outlines every step of the process of breast cancer treatment from beginning to end.
I’ve focused on the chemotherapy information the most so far, but it covers everything from surgery to reconstruction to radiation to long-term and emotional considerations. - Internet Research
Ah, the Information Superhighway. The place you can go to find almost anything you can imagine, and then within seconds, regret what you learned.
Do internet research Within. Reason.
I always look for reputable sources and limit myself. Speaking from experience, it’s easy to fall into a spiral of going from one site to that blog to this article and feel horrible at the end.
Throughout the process of being diagnosed, I came home with a lot of folders. These sometimes included handouts or lists of online resources recommended by my doctor, which gave me a better idea of what sources to trust.
Really, just be specific with what you’re looking for and focus your searches. I typically try things like, “managing ___ chemotherapy side effect” and stick to only looking at cancer research foundations or reputable medical center websites.
Personal blogs and the Young Survival Coalition website have been helpful for me as well. - Myself, My Body, and My Feelings
Chemo is surely nothing to sneeze at. It’s intense treatment. Things that were normal to me before treatment have changed and I’ve had new emotions I didn’t expect.
Just listening to myself has given me a lot of direction. I’ve learned that (and am still working on) patience with the process is necessary to get through. You have to give yourself a break; it’s a change in lifestyle, but it’s temporary.
Setting Myself Up for Success
I’ve learned over the course of the last 5 cycles that there are things I can do to set myself up for success and make things easier on myself during the week following treatment that I’m not feeling well.
Meal Planning
Before my Saturday treatment, we plan our meals for the following week and go grocery shopping. This ensures that we have a clear plan for the week and we don’t have to run to the store for odds and ends or full meals.
We’ve also made some meals and snacks ahead so we have some easy options to grab when we need them.
Make Important Items Easily Accessible
Having all items I will (or might) need throughout the day together is something I’ve learned to be really helpful.
I put together a small basket of items that I keep on a tray near where I spend most of my time resting throughout the day. Everything is within reach, so I have no excuse to put off taking care of something I should be doing. Plus, it’s easy to put away and take out for each cycle!
I’ve included things that I need as well as things that I can do or that make me smile. If you try this yourself, think about putting together a basket for your whole self–physical, self-care, and emotional needs.
My basket typically includes these things:
- Prescriptions (nausea med, dexamethasone, potassium supplement)
- Thermometer
- Mints
- Lotion
- Chapstick
- Saltine crackers
- Devotional – I use and love this one! 50 Days of Hope
- Inspirational card we received from a dear family member
- Crossword puzzle book
- A notepad and pen (mostly for things that I think of that I will most likely forget once the chemo fog clears)
- Mouth rinse
- Tissue pack
- Tums
- Eye drops
- TV remotes
- Other small projects I feel like working on
- Octopus Unicorn hybrid. This is merely for comic relief; it was a goofy gift from my coworkers and makes me smile.
Chemotherapy Side Effects
And now to the “good” stuff–those notorious chemotherapy side effects. The remainder of this post is dedicated to the side effects I’ve experienced thus far and how I’ve found ways to manage them. My experience is unique, and yours might be different.
In general, managing chemotherapy side effects is a learning process. Like I mentioned before, listen to your body and do what is right for you.
Mouth Issues
I’ve been fortunate to not develop any mouth sores, which I’ve heard are quite common for chemo patients. I feel for people who have because they do not sound fun.
I get a weird, “fuzzy” feeling in my mouth. It’s basically the feeling like I have eaten a hot piece of pizza and burned my taste buds all over my mouth. Time heals this, so just being careful with the temperature and spiciness of food helps.
I have also had some taste changes, and certain things just don’t quite taste the same or as good as I want them to. For example, coffee. ðŸ˜
One other oddball mouth-related side effect I’ve experienced is a feeling like I have a lump in my throat. When I asked a nurse about this, she consulted the other nurses and they weren’t sure/hadn’t seen this with other patients.
Of course, I’d get the weird thing.
It’s usually accompanied with a cough, but both go away after about a week. If anyone has ever had this and found some relief, I’m all ears!
Changes I’ve Made to My Oral Hygiene Routine
I don’t know if it has actually prevented mouth issues, but I changed up my oral hygiene from the get-go of my chemotherapy to at least try.
- Toothpaste: My mouth is extra sensitive and my normal toothpaste burned my mouth. I like this one because it’s still minty, but not as strong.
- Floss: Every night! I’ve always tried to get into this habit and failed. Apparently the threat of mouth sores that can travel through your whole GI tract was just the motivation I needed.
- Mouth rinse: Regular mouth rinses aren’t recommended during chemo because of the alcohol in them making them too harsh. I use this Closys rinse and recommend because it’s non-irritating and tasteless. There is also a lightly flavored variety; this unflavored one comes with a dropper of flavoring you can add if you want so you can control the intensity, but I just use it without.
Hot Flashes
Ah, clinical menopause and hormone fluctuations. A great sneak peek at the real deal for later on in life…
There’s not much to do about these other than dress in layers, throw off the covers or position myself near a fan or a door to step out into the frigid Wisconsin winter temps. Or maybe pick up a small fan for my desk at work.
Sleep Issues
Sleep. The one thing I want to do most after treatment, but the thing that is the hardest to do.
For the several days surrounding treatment, I take a steroid drug (dexamethasone). Plus, on treatment day, I get an additional dose shot straight through my veins, which gives me an interesting Super Woman feeling.
While I’d like to leap tall buildings in a single bound, I really am not a fan of this drug. It hypes me up and I have a difficult time sleeping as a result.
I struggled for three cycles with waking in the night. I couldn’t get more than two hours without waking up and then couldn’t fall back to sleep. This was so frustrating when I was sooo tired and just wanted to sleep.
A physicians assistant suggested I try melatonin, and I don’t know (or care) if it’s the placebo effect, but it has made a huge difference for me! I don’t take it every night, only while I’m on the dexamethasone and if I wake up with four or more hours left before I have to get up.
It feels SO GOOD to have fewer hours of lying awake, so I’m sold!
Dry Skin
On top of the dry skin I’d expect for the middle of winter, I definitely notice it even more.
This one is pretty easy to manage. Lotion. Lotion. Lotion. More Lotion. Repeat.
Did I mention lotion?
Fatigue
This is a big one. I simply just feel Worn. Out.
It wouldn’t matter how much I sleep, when I wake up it feels like I can fall right back to sleep.
I wake up in the morning, get up, get dressed, and I’m ready for a nap.
Reaching over to pick up a water bottle feels like too much work some days.
This can be tough to manage sometimes, especially when the previous two weeks were packed with all the activities I wanted to do while being down for the count on the previous cycle. There are a few things I’ve found to help:
- Rest goes without saying. I rest as much as I possibly can. I’m fortunate to be able to work from home the whole week of treatment, so I sign out and curl up on the couch when I need to.
- IV fluids. This helped me during a really bad cycle, so I’ve been scheduling time to go in for fluids as a preventive measure with each remaining cycle. It’s so hard to hydrate as much as you need to after treatment, so this helps a lot.
- Drink lots of water to stay hydrated. This gets harder as the week goes on and I feel worse. I use this water bottle and a pen and paper to track my intake.
- Eat good, healthy meals. Small meals and snacks every few hours has been best for me.
- Get some activity. I try to take little walks and get up to stretch. Lying around can be exhausting, ironically, and getting up to wash my cereal bowl and take two laps around the kitchen can help me feel a little more energized. I don’t push it, but I do try to get some movement in throughout the day.
- Baths and foot soaks. These relaxing activities just feel good when I’m not feeling good. I’ve been trying all kinds of bath things lately, and I loooove using these eucalyptus spearmint epsom salts. So good and so relaxing!
Nausea
I think just about every drug I’m on has nausea as a possible side effect.
I didn’t have much nausea to start, but as treatments have gone on, this has increased.
The best way I’ve learned to manage this is to simply take the nausea medication I was prescribed. I didn’t use it as much in the first few cycles, and I didn’t really have a good reason. Now, if I feel like I have any nausea, I just take it. If it will help me feel even slightly better, it’s worth it.
I also keep saltine crackers in my nightstand and next to where I’m resting (and in my desk, and in the car). Sometimes some crackers, along with a few sips of water or ginger ale, have been helpful in keeping the nausea at bay.
Digestive Issues
Yup, definitely the worst. From the start, the digestive issues have been the most pronounced and most annoying for me.
Cycle 1 was marked with a rolling upset stomach after eating just about anything. Luckily, I was able to learn from my first cycle and pinpoint some of the foods that were making my stomach ache.
Starting with my first day of treatment, I cut out mostly all dairy (*insert sobbing*) and red meat. I stick to a pretty bland diet for about a week, until I’m feeling mostly normal with all other chemotherapy side effects. Then I slowly introduce these foods back in. The relief I’ve found is totally worth the sacrifice, even when the Culver’s commercials come on.
I had definitely taken my digestive health for granted. Until you are no longer the master of your own bowels, you don’t really realize just how important that can be. Gone are the days when I wasn’t a walking CVS pharmacy. Seriously, if you need something related to your GI tract, chances are it’s in my purse.
And that’s really the only way to cope with these issues. Despite being conscious of what I eat, I can only manage the chemotherapy side effects as they come with my stash of things like Tums and Imodium.
Emotional
While the chemotherapy drugs rush through your blood stream and effectively attack every rapidly reproducing cell in your body, it’s almost nothing compared to the emotional toll it can take. That’s saying a lot, considering a lot of the chemotherapy side effects are pretty harsh.
On top if it, many breast cancer treatments, including mine, mess around with hormones, so there’s always that emotional bag of fun to deal with.
It’s often hard to come to terms with the fact that I walk into the clinic feeling great, only to be made sick days later by the treatment that is meant to make me better.
During the time when I’m hit with the worst of the chemotherapy side effects, I hit some emotional low points. I get tired of lying around. I want to do things but can’t. I get tired of asking for things I can’t do myself.
This is a struggle, and part of the solution is to just cut myself a little slack and remember that it is temporary, but I have tried to make a few changes to help boost my emotional health:
- Plan small things that I can do while resting to help me feel accomplished and less like a giant lump. Things like: small craft projects, reading a book, planning an (early) movie night, blogging.
- Let some things go. No, I don’t always feel like getting up to wash my dishes. I can’t clean a bathroom now. It’s okay to leave them for awhile because I will feel able to do these things eventually. While I write this, there is a combination of winter, Valentine’s Day, St. Patrick’s Day, and Easter/spring decorations out in my house. Letting things go is a work in progress.
- Ask for something. We’ve been blessed with many people who are willing to help. I know that if there is something that I need or if something would make me feel better, I can ask for it.
- Plan to have someone around during times when I know I’ll feel lonely. Mid-week of working from home gets to be the point when I’m tired of feeling unproductive and tired of being in the house. Inviting someone over or having a phone conversation for even a short time helps break up the monotony, gives me a good distraction, and boosts my spirits.
Checking Things Off, One at at Time
In the end, chemo is about check marks. One cycle. ✅ Two cycles. ✅ And so on.
Managing chemotherapy side effects is the same way. You get through them, you check the predictable ones off your list, and you push forward.
With just one cycle to go, I feel encouraged. Only one more. It doesn’t make the anticipation easier, but it does help to know that it is one more check mark toward putting all of this behind me.
If you’ve tried anything I’ve suggested or have your own tried-and-true tips for any chemotherapy side effects, please leave them in the comments!
Hendricks Debra says
Love you can’t wait to see you when we get home from AZ. Praying for you every day. Uncle Dale and Aunt Debbie
Sharon says
Just stumbled on this in my own BC journey. Heading into round 4 of 6 next week and the side effects are really starting to hit. Was good to see this and remember what I’m feeling is normal and is for this season. Especially the terrible hot flashes (I always thought I’d be cold!? and you described the fatigue DEAD on. Thank you for making it a less lonely place!
Away from Ordinary says
Thank you so much for your comment, Sharon! I’m two years out from this season, and I can tell you that it gets better. For quite some time, it didn’t feel that way, especially in the thick of treatment. I’m wishing you the best of luck as you continue your treatments! I hope these last rounds go as smoothly as possible for you!
Midge says
I found your posts on Pinterest and am just about to start my chemotherapy treatments for breast cancer. Thank you so much for your honesty and humor while going through your side effects, including hair loss, the chemo bag, etc. To be honest, I’m scared. Your story has helped cut that fear.
God bless you for sharing your experience.
Away from Ordinary says
Thank you for your kind words. I truly hope that your treatments are going as smoothly as possible! It is definitely scary, but I find taking it one step at a time really helped me. Wishing you well and sending lots of love!