During the long hours spent on my bed recovering from the latest chemotherapy treatment, I often grew bored and listless. I had no energy, nor did I have motivation to tackle any of my numerous hobbies. Even picking up a book didn’t appeal, as it involved holding a book too long and my wrists ached. My attention span was affected by the medication, so novels didn’t hold their normal appeal. However, a day or two later, I would feel like reading, and the time sped by as I enjoyed life vicariously through the actions of the characters in the story.
People would invite me to come to tea in two days time, and I’d turn down the offer as I felt so ill. Two days later, I regretted saying no. My energy levels had improved, and the company would have been good for me.
I became afraid to accept invitations or make plans, in case it fell on one of my “down days”. On the other hand, on my “good days”, I needed the stimulation of others.
And so I figured out a way to keep track of my ups and downs.
I started to use my diary, which was empty apart from medical appointments. It was a page-a-day diary, with the hours marked down the left-hand margin. On the right-hand corner at the top of the page, I wrote a large “Day 1” indicating that this was the first day of treatment. I’d had my chemo at 10 a.m., so next to that time on the page I scrawled “Chemo. All went well. Good chat with Leo.” (Leo was my oncologist.) I then looked at the time. It was 2:30. I moved my pen down the page and wrote. “Clapped. Want to sleep but mind racing.”
That was all I had energy for, but as I lay back, I felt good. I had achieved something, albeit a tiny task. After lying at rest for a while, I got up and had some tea with my husband, and put on the food for supper. During my chemo, I was given intravenous cortisone, which gave me an emotional lift. Unlike many others who scarcely made it home from treatment before they started vomiting, I would come home ravenous. I would snack throughout the day, and could tackle tasks I didn’t have energy for on other days.
A couple of hours later, I returned to my diary, or journal as I decided to call it, and jotted down in literally a few words, what I’d done and how I felt.
That started a pattern and for the remainder of my “cancer year” I kept the journal up to date. One word, “headache”, followed by “Panado 2” and an hour later, “headache gone” was all that I needed to write. It told its own story. I recorded my physical aches and pains. I kept track of my medication. I wrote down my emotions and my reactions to situations.
I soon saw a clear pattern develop. I was on a roller-coaster, yes. But it was a predictable roller-coaster.
I moved ahead in the journal, numbering off the days in the top right-hand corner. Each time I had chemotherapy, I started again with Day 1.
When I received an invitation, I would say, “Let me look at my diary.” That gave the wrong impression of a busy life. In fact I was looking to see which day of my chemo cycle the invitation fell on. Day 3? A definite no. Day 3 and 4 were the worst as those were the days when my white cell count reached the lowest. Day 10? “That would be great, thank you.”
It was a different form of journalling, but it worked. And years later, that tear-stained book became an invaluable resource for many written articles and for two books, written about that time of my life.
If you’re interested in exploring other forms of journalling, I have written a series on my other website. Pop across and read the posts here.
Have you tried journalling? How did it work for you? Click on “Post your comment” below and tell us how it worked for you.