I don’t know about you, but what scared me most about starting chemo was the side effects. The movies always make them look so awful — I had no idea what to expect, but I doubted it would be good.
Of course, everyone’s side effects are different, and no one knows exactly what your side effects will be until you’re one to two cycles into your chemo plan (and they may change as your chemo continues).
The main thing I learned is that if you’re suffering during chemo, you need to tell your doctors. Now is not the time to be stoic. Now is the time to complain when you’re hurting.
For the first several cycles of my treatment, I had it pretty easy: I had predictable nausea and fatigue. My brain went on vacation and left my body at home to deal with chemo. But I didn’t get a roaring infection like many of my acquaintances did. I didn’t have nerve issues that made me feel numb, or like I was walking on needles, or like my hands were on fire. I didn’t throw up for days. I wasn’t hospitalized because my blood counts got dangerously low. I know folks who went through all those things.
So I started to get pretty confident. “Maybe chemo won’t be so bad,” I thought. “Maybe I’ll be one of those lucky ones who get off easy in chemo roulette.”
Around cycle four or five, I started to notice that I had sore spots in my mouth. I’d had herpes simplex, like 50 million other Americans, for decades. So I thought it was just the virus. I explained it away. I made excuses for 1 week, then 2.
By week 3, I had to admit that I had a full-blown case of chemo mouth sores. They seemed to be everywhere, raw and painful. I couldn’t eat or drink because it hurt so much. Finally, I couldn’t even draw in a breath without pain. Even air flowing over the sores hurt. I was reduced to sitting in a recliner, staring into space, with my mouth slightly open, drooling.
Finally, I called my oncology nurse practitioner, who coordinated my day-to-day care. She scolded me gently for not calling earlier. She prescribed a plan of gargling with baking soda and then dabbing the sores with a lotion and keeping my mouth open for 5 minutes so that the lotion could dry, forming a barrier over the sores. If you thought I was drooling in the beginning, you should have seen me by minute 5! It was a miserable, miserable time.
Slowly, slowly the sores got better. It took about 2 weeks to get rid of them all. If I’d called when I first noticed the sore spots, I might have saved myself several weeks of misery.
Don’t make the same mistake. If you notice something, say something. Your medical team is there to help with side effects. Let them do their job.