A lot of people wonder what it’s like to have radiation or chemotherapy. Everyone’s reactions to these treatments are different but I will attempt to describe what it was like for me.
Radiation was pretty straight forward. The actual procedure of getting radiated doesn’t hurt at all. You just lay there and listen to music until they tell you you’re done. The only bad part was having to lay there with my bare butt showing for about 15 minutes each time. All these healthcare professionals around were so incredibly nice to me and I just laid there showing them my butt. Even though they were not in the room during the radiation, they had to watch via camera to make sure I was positioned properly.
It was someone’s job to watch my bare butt to make sure that I didn’t move. I’m guessing they were not sufficiently paid for that part of the job.
The sinister thing about radiation is that it is the cumulative effect that finally gets you. Each day, you feel a little worse, a little more tender.
I got to the point where I couldn’t drive anymore. It was an hour to the cancer center and I couldn’t sit that long. My son drove me and I would recline the passenger seat and lay on my side. My backside eventually got so sensitive that when I laid on my side on the couch, I had to have a pillow behind my back so that nothing, even the back of the couch touched my rear. Toward the end, even the sheet laying across my lower belly was too much. I had to hold the waistband of my underwear away from my skin to be able to fall asleep.
In my first round of chemotherapy, there were so many side effects, some of which started within an hour of starting my infusion. I would sit there and literally feel my body changing. A sharp inhale of the air-conditioned air would make my throat feel like it was constricting. When I went out to my car in the winter, the cold air would make it feel as though I couldn’t breathe. Even a room temperature drink would make it feel like my throat was constricting around something that was caught in it. This would slowly diminish over the next week or so.
Within minutes of starting chemo my hands would start tingling, signifying that for at least the next week I would be unable to touch anything cold or even cool without pain. Pour a glass of milk? Better put gloves on. Need to get something out of the freezer? Gloves again, or ask someone to help.
Even something as simple as washing my hands had to be thought out. No more just turning on the water and washing. I had to let it warm up, but not too hot because I had neuropathy in my hands and feet. I could burn myself without even feeling it.
How strange it was to realize that my hands and feet were numb but at the same time, I could still feel this phantom kind of pain. I know this is very odd but while my feet are numb, it feels like I have walked across the beach with wet feet and there is sand between my toes. I could actually burn or cut my hand and not feel it but if I touched a door handle at room temperature, it would hurt.
Since my feet are mostly numb, I lose my balance often. I’ll be walking through a parking lot towards the door but see that I’m not walking straight, I’m drifting to one side. I can’t help it and really have to concentrate to fix it. I fall sometimes, I drop my fork and have to think hard about how to maneuver my spoon so that my soup doesn’t spill in my lap. I couldn’t type—numb fingers don’t move the way you want them to.
Chemo brain . . . we all have days when we just aren’t as sharp mentally as we normally are. Maybe you got a bad night’s sleep or missed your morning coffee. Now, triple that effect and make it every day for months. I’ve always thought of myself as a fairly smart person. I went from that to having trouble deciding what I wanted for dinner. My wife gave me two choices and I couldn’t figure it out. I would have to stare at the remote to try to figure out how to change the channel or volume. Trying to describe something was maddening. Things like wanting a mug of hot chocolate (nevermind the fact that it’s 90 degrees outside—I can’t drink cold things).
My mind couldn’t put that sentence together so I would have to say, “I want a drink of that stuff made by cows with brown stuff in it, heated up, not cold.”
I didn’t want a pen, I wanted “that thing you hold in your fingers and it makes marks on paper.”
I wake up at 7:00 a.m. and by 8:30 a.m. I’m wondering how long until I can take a nap. After I nap, I wonder how long until bed. It’s not just being tired physically, it’s a whole person kind of tired.
Mentally, I’m exhausted trying to think through all the possibilities of my future. It takes immense mental energy to control your thoughts all day. When you have a disease that statistically will most likely kill you, those thoughts are ever-present. Every minute of every hour . . . every day. I wake up in the middle of the night and wonder if I’ll live to see my son get married. How will my wife do without me? My eyes open and the thoughts start immediately.
I have a choice—go along with those thoughts through that dark door, or mentally rise up, slam the door on those thoughts, and force myself to think about something else. Sometimes I would have to slam that door 5-10 times a minute. It’s mentally exhausting and never stops.
Radiation and chemotherapy make you tired, the drugs to combat the effects of radiation and chemo make you tired. Stress adds to that and then there is the recovery from surgery.
Everything makes you tired.
One of my anti-nausea meds had an odd, terrible effect on me. Those who know me well know that I am a very calm, level-headed person. I almost never get very angry.
Well, that all changed. I was having an argument with my teenage son. Things kept escalating until I jumped up from the couch and got in his face. I was mentally searching for things to say that would hurt him the most. We were pretty close and I knew his weaknesses. I went for them like a crazed bull trying to inflict as much damage as I could. Somehow in my drug-addled mind I wanted to hurt my son as much as I could. I almost damaged our relationship beyond repair. I said horrible things that I am utterly ashamed of. Thankfully, my son had the grace and mercy to forgive and understand. This happened two times and they are two of the lowest points in my life.
There are other common side effects that I didn’t get. As I said, everyone is different, but hopefully this gives you an idea of what it’s like going through cancer treatment. I am not currently experiencing all of the things I have described and I’m not seeking sympathy for myself.
I just ask that you please remember as you encounter others that are going through similar things—be patient and merciful.
It’s a tough road.
Having someone understand makes it easier.