A Day in the Life of a Cancer Patient

Before my first radiation treatment I was told I could make the next few months easier if I did certain things. “Start now. Prevention is key to success.” I wanted an easier journey, so I agreed enthusiastically.

“Tell me what I have to do. I’ll make it happen.” I was committed to do my best. I very quickly found it was a lot more than I expected, it was not all easy to do, and it was hard to work out a schedule I could follow without forgetting.

Why? It’s not just appointments, but activities that are recommended to minimize side effects proactively and later to treat the side effects when they occur.

“Put this lotion on twice a day. It will help with rashes and radiation burns. But don’t put it on two hours before you have radiation therapy.” Sounded simple enough.

Then: “Use this mouth rinse four times a day. Don’t put anything in your mouth for 30 minutes or longer afterward.” Okay—that’s two hours though….

“Salt rinses will help. Follow this recipe, use it four to six times a day, and nothing in your mouth for a half hour after.” That’s another two or three hours. Hmmm—this is adding up.

“Eat six small meals instead of three large ones.”

“Get out and walk if you can. Thirty minutes a day is ideal.”

“Speech therapy exercises three times a day – each session will take 15 minutes.”

“Brush your teeth every time after you eat, and swish with Biotene rinse.” I’d used Biotene in the past. I hadn’t noticed a difference, but I’d try again.

“Take these new medications. Some are once a day, some twice, some every six hours, some as you need them.”

Then there are appointments at the hospital. Three to four hours are taken up Monday through Friday getting to and keeping appointments with a variety of health care providers and one entire day when radiation therapy and chemotherapy fall on the same day.

What about medications and routines I was doing before I started cancer treatment? Got to keep those up too. I was on medication for hypertension, elevated cholesterol, and esophageal reflux. I do exercises to prevent episodes of vertigo. The thought of getting an episode of vertigo on top of nausea and dizziness that might occur during my therapy was terrifying. I had to fit that in my schedule.

Being a head and neck cancer patient is a full time job. I don’t know how anyone can continue to work and fit in all that needs to be done, but apparently some do, and I admire them.

Some activities had to be done in a certain order or spaced appropriately. I couldn’t do this until I did that first, and once I did that I had to follow with something else. If I rinse my mouth right after I eat, what about those pills that are due? I’ll have to wait another half hour; better move the pills up to before the rinse or I’ll end up taking them too late in the day. Much of what I need to do relates to some other activity. I’d begin something, then find out it was in the wrong order and it sets me back. The schedule started at 7 am and wasn’t finished until 10 pm. By 2:00 pm I’d find I wasn’t finished with the 10 o’clock hour yet.

For me the solution was a written schedule and check-off list. I wrote down everything I had to do and how many times I had to do it, gave each item a line and a time, and printed out a spreadsheet with boxes to check off what I did and mark what I missed.

I learned to juggle things that could be done simultaneously. For instance, since I have to wait 30 minutes after some rinses, I filled that time with other activities that did not involve putting things in my mouth, like taking a shower or riding in the car. I found that drive time was a good time to get two sessions of speech therapy done, one on the way to the hospital and one on the way home. Only one more session to fit in—yay!

I put “mouth” activities in a progressive order: eat first, then brush, then take pills, use mouth rinses last.

This was all very confusing at first, so I didn’t even try to make the schedule a permanent thing. I knew I’d be changing it as my side effects changed, new things were added, or I found a better order. So I printed a week at a time, made notes as I went along, and I printed a new schedule each week incorporating additions and discoveries. This turned out to be a smart decision.

It would serve no purpose to go through every step in my schedule here. My list has shortcuts only I understand. I included it below as an example to demonstrate the complexities. There are too many variables, and no schedule could fit every patient. Not only is each treatment different, but each patient reacts differently, has different concerns, different side effects, different personal schedules, etc. I sometimes wished I had a secretary and someone to stand over me and crack the whip. Chris was a tremendous help, but I felt I had to be in control of my day-to-day schedule.

I knew my life was going to be very different for a few months, and the sooner I accepted that and took steps to accommodate the changes the better off I would be. Not everyone will be convinced at first that a check-off list like mine is necessary, but I believe working a schedule out on paper is well worth the time and effort spent. Many people get through busy days with no need for written lists, or set timers on their Apple watch. It’s a different situation when trying to do it all while worried, unwell, and when changes occur frequently throughout the course of treatment. I’m willing to bet most people will get confused or forget a good deal of what can help as treatment progresses. Progress it will, and can result in a more difficult therapy than needs to be. The sooner a person becomes an active participant in their therapy the more likely it is that the course can be made more comfortable throughout. Tools like lists can help.

Here’s what my spreadsheet looks like. I carry it from place to place during the day so I don’t forget to check things off when I do them. Even after following my schedule for a couple of months, I still find it just as easy to forget I’ve done something and do it again as it is that I’ve missed something.

It will do no good to copy my list, since it’s good for only one person—me—and it’s a constant work in progress. I certainly don’t get anything like 100%. There are zeroes on my check-list, but that’s okay, because everything I do helps. Each day is different with different challenges and surprises. I do the best I can, and I believe it made a difference.

My personal checklist, middle of treatment.

In addition to a checklist, I also keep a journal of sorts. I use a composition book, and each day I put the date and day of the week on the top of a new page. As the day progresses, I write down things that relate to my disease: how I felt, when I started something new, when a new symptom started, what I eat (some detail here), a calorie count, etc.

Here is what a typical day looks like:

January 12 —Friday

• Slept fairly well – awoke alert about 4 am, mild headache, very mild nausea, no other effects. Fell back to sleep about 5:30 and slept to 7:30.
• Breakfast – 1/2 serving oatmeal (75 cal), 1 tsp butter (30 cal), 1/2 tsp sugar (10 cal), blueberries(40 cal), wheat toast with peanut butter (200 cal), coffee with cream (30 cal). = 380 calories
• My tongue is black. Will talk to doctor about this.
• Had a small, difficult BM.
• Lunch – Peanut butter, jelly and cheese on roll. = 250 calories
• Snack – Ensure = 220 calories
• Dinner – fish (100 cal), mac and cheese with tuna (200 cal), 1/2 milkshake (250 cal) = 550 calories
• Radiation therapy session #2. No side effects.
• Walked 30 minutes around hospital for exercise.
• Felt okay most of the day, less so after 6 pm.
• Had a brief period of warmth in my upper chest, stopped spontaneously and no other symptoms.
• Snack – crackers and cheese = 175 cal

Total calories = 1575

I started this because it was stressed from the beginning that my eating habits were going to change significantly through the course of my treatment and I needed a way to determine if I was getting enough nutrition and how that was affecting my life. It’s very bare bones, but I can easily look up what is needed to answer questions from my medical team, and I know what goals will help me stay on track.

My third “tool” is a notepad I bring to appointments. Whether I’m seeing one of my doctors, nurses, or therapists, there is always useful information I can incorporate into my schedule, as well as changes and progress to track. I have a pretty good memory, but despite that I’d walk out of the room with two or three key things on my mind and forget many others if I didn’t take notes during my appointments.

In case you’re wondering about the black tongue mentioned above, I’ll explain that in next week’s post: Effects and Side Effects of Cancer Treatment. That post will give details about why it is beneficial to participate actively in cancer treatment.