After being diagnosed with cancer I quickly realized that I knew NOTHING about how cancer treatment works. I knew about chemo and radiation, but I didn’t really understand what those entail. There is just no way you can ever be prepared for cancer treatment. But I wish I had known more before I started. And it is so interesting to me how the same treatments can affect people so differently. In fact, when you meet with the doctors and they explain how treatment is done, the list of possible side effects is long enough (and scary enough) to make your head spin! So as you start treatment it is a sort of waiting game to see which side effects you will get and how bad will they be.
Here are the side effects that surprised me and affected me the most:
- Radiation burns. I mean it literally burns you. Radiation burned me so bad that I bled. And, as you can probably imagine, having a tumor in your butt means you are being burned in a very sensitive area. Don’t get me started about going poop during that time either. It was the worst pain I have EVER felt. Enough to where I would hardly eat because I just didn’t want to poop. Or sit. Sitting hurt like heck too. Often times I would just curl up in a ball on my bed because it hurt so bad. And then radiation also affects areas that are in proximity to the tumor so that means your lady parts are burned as well. It hurt SO BAD. I would even cry sometimes when I went pee. They actually gave me Silver Sulfadiazine Cream to help with the pain and healing which is what they give to burn patients. Also, I used tons of Aquaphor and took lots of baths using Domeboro. What I didn’t realize as well is that the worst of the radiation effects don’t hit you until about a week after your last treatment. So, sadly, you get a lot worse before you start to get better. And healing from radiation is a very long, slow process. It’s one I am still dealing with today, over a year since I stopped radiation.
- Early menopause. I had absolutely no idea that radiation could cause early menopause. Being zapped in the butt also zapped my ovaries causing instant menopause. I am just so thankful that we knew we were done having babies and are complete with our 3 girls. But I can totally understand how this side effect is devastating to those who want to but haven’t started a family yet. And with early menopause there are issues that arise from that-hot flashes, higher risk of developing female cancers, weight gain, vaginal dryness, and many other things as well. So on top of all of the doctors you see for your cancer, add in a few visits to your gynecologist as well. I have to say, though, I haven’t had a period in a year and a half and it is awesome! (Hey, you’ve got to embrace any positives that come from this horrible disease!)
- Cold sensitivity. First I should say that I had no idea there are so many different types of chemo. And I didn’t realize that I would be on a combined mix of chemo meds to kill the cancer. A weird side effect of one of the chemo meds I was on, the oxaliplatin, was an instant sensitivity to cold. My chemo doc told me that they aren’t sure why but everyone who is given oxaliplatin gets a sensitivity to cold. And sure enough, within just hours of getting the oxaliplatin I was sensitive to anything cold. I felt cold all of the time, the kind of coldness in your bones that you just can’t warm up from. But also, I couldn’t touch anything cold. If I touched something cold with my hands, my fingers would burn and hurt instantly, like you’ve been shocked. I’m sure it was quite the picture of me wearing gloves to get things out of the fridge or freezer! I also immediately had cold sensitivity in my mouth. My doctor had warned me that it would hurt when I swallowed something cold. Well, let me tell you, you only forget about it once because when you swallow something cold it feels like there are knives in your throat. It was awful! And for me I was so sensitive that I couldn’t even drink anything at room temperature. I had to heat my water up a little so that it didn’t hurt my throat. I know for some people that the cold sensitivity would go away within a few days, but for me it lasted the entire time in between treatments. That makes it really hard to stay hydrated when they keep telling you to drink lots of fluids. Luckily after a few weeks my doctor prescribed in-home hydration where a home nurse would hook me up to an IV of fluids. The down side was being hooked up to an IV for 2-3 hours, but at least I could do it at home and it really did help me a lot. And the cold sensitivity ended once treatment was over-get me some ice cream!
- Neuropathy. I had never even heard of neuropathy until I had a friend go through colon cancer treatment about a year before I was diagnosed. For me, I started having numbness and tingling in my feet and lower legs toward the end of my chemo treatment. Then it actually got worse after stopping chemo which seemed strange to me. Luckily it did get better, but I still constantly have a little tingling and numbness in my toes and it sometimes goes up into my whole foot. My doctor says that a lot of times the neuropathy never fully goes away, so we’ll see what happens. He also said there are nerve medications that some people try, but he has never seen them to work on neuropathy from chemo so he doesn’t recommend them. It’s not really a big deal for me except it has made me a little more clumsy. I do trip more and stub my toes a lot more. My girls always laugh at me because I stumble a lot now. In fact the baby toe on my right foot is still healing from the cut I got when I stubbed it twice in one day a couple of weeks ago. Yes, I stubbed the same toe twice in the same day. Ouch!
- Hair loss. To be honest, when I found out I would be doing chemo I just thought I would lose all of my hair and sport a bald head for a while. And I was ok with that. But the doctor told me that patients on the chemo for rectal cancer don’t lose their hair, but they occasionally experience some thinning. Well, I did end up losing about 75% of my hair. At one point it was just coming out by handfuls. It got really thin, but I didn’t end up shaving it. Luckily I had a ton of thick hair to start with so I basically just wore my hair in a ponytail every day. After chemo ended my hair started growing in pretty quickly. My new hair is trying to mix in with my old hair, it’s crazy. My new growth has a very strange texture, it’s very crimpy. It’s really frizzy and fuzzy. And I have quite a few gray hairs growing in now too. I am just letting it grow in and we’ll see what happens. I still wear it in a ponytail every day. This side effect is nothing to complain about either, it’s definitely a small price to pay for being alive!
- Dental problems. Why didn’t anyone tell me about the possibility of having dental problems after chemo? The strangest part is that I didn’t have any problems until about 4 months AFTER stopping chemo. Then in the matter of a few weeks I had 3 different teeth chip. I mean, little pieces of my teeth would just fall off! It was so crazy! I was seeing my dentist on a weekly basis for a while there. I was starting to see dentures in my near future. I googled it, of course, and realized that many people have dental problems after chemo. A lot of them suggest getting fluoride treatments before and during treatment. That would have been helpful to know! My dentist told me that she will give me a fluoride treatment every time I see her now and I’ve also switched to a toothpaste for sensitive teeth and an extra soft toothbrush. Luckily I haven’t had any issues in a couple months.
I want to add that as hard and horrible as these side effects are, the abilities of the human body are amazing. The body can handle more than you think. And healing does happen, slow as it may seem, healing DOES happen.
I think these are all of the side effects that I was most surprised about. As I said, I know that cancer treatment affects everyone so differently. Fellow warriors, what are some of the side effects that surprised you the most? Leave a comment if you would like to share.
*To read about my cancer journey from the beginning, click here.