If you or someone you love has been recently diagnosed with cancer, you know days can be a fast-paced whirlwind of appointments, tests, treatments, medications and information. At times it can be downright overwhelming. One of the tools my cancer center offered during my Chemo 101 class was a simple notebook. They even placed information and labeled tabs into it to give us a start of things we might need. This is incredibly helpful to keep organization to the chaos, but it is also a great reference for your caregivers while you are recovering from surgeries or treatments. It keeps all the information in one place and available quickly.
However, I ended up with a larger notebook and placed additional tabs into it based on my specific needs and the items in which I needed to keep track. And, I decorated it with some inspirational stickers a co-worker purchased for me. Using the clear pocket front made it possible to personalize and allowed me to add pictures or sayings that brought me joy and comfort.
Inside, I made sure I had a pocket to hold a pen, pencil, highlighter and some small sticky notes that could be used to flag pages that might require my attention. Plus, should I forget to bring one with me to appointments (chemo brain, anyone?), I would have one handy.
I used the inside pockets to quickly file information that I received while at an appointment. This allowed me the time to read, sort and file inside the notebook when I had time at home.
I also added pocketed inserts to the back to hold various information that didn’t come with holes punched. I do own a three-hole punch, and I know this seems extremely lazy, but there were days that the thought of punching holes was just too much. And, there were days I didn’t have enough strength to operate a hole punch…so, I just opted for pockets. As you can see from the pictures, the pockets are now empty. Eventually you do feel better and I punched holes and filed them under the correct tabs.
Below you can see some of the tabs that I used to keep information organized. Some were preprinted from the cancer center and others I added. I have an incredible breast nurse navigator and she helped me obtain copies of every test result, scans, surgery, chemo and doctor’s notes from every single visit. Which I suppose is why I needed a larger notebook.
I also had a section for information on all the medications I was taking. I had print outs from the pharmacy and also information sheets on chemo medications from my oncology nurse. This was a helpful reference to be able to check against the side effects lists or remind myself of what needed my doctor’s attention and what was ‘normal’.
There was also a section of instruction sheets from all the surgeries. This is helpful for caregivers to be able to reference while they are helping you recover.
Also, included was a section for information I received at the various classes I attended at my cancer center, a section on nutrition, contact information for the support services (such as the nutritionist, social worker, financial assistance, support groups), a plastic business card insert for contact information for my doctors, nurses, surgeon, etc. and a place to write down questions for my doctor. The cancer center included a tab for journaling, but I really felt like that should be separate. For me, the notebook was public property. Anyone could look in it to help with my care or get information. I had anticipated my journal would be private. That thought lasted about two seconds once we started this blog.
Without a doubt the single most important thing you need in this notebook is a calendar. If you are like me, you have your calendar on your phone. But, there is so much that needs to be captured on your treatment calendar that a good-old fashioned paper copy truly worked best for me. There are various chemo apps that help you track your treatment days and side effects. But, I did not find them to be well rounded in tracking all the aspects of my care. They simple focused on the chemo part. There may be better apps available now or ones that will work for your needs; whatever works for you and your family I encourage you to use it.
I used the calendar to keep up with all my medical appointments and surgery dates. My medication schedule started several days before chemo and ran for several days after. There were multiple medications that required specific timing and there was an overlay in those schedules. This was a good place to keep up with the meds. While on chemo, I had to monitor my temperature daily. Since chemo lowers white blood cells, the only way to ensure I was not forming an infection was to check my body temperature. I also wanted to watch patterns in my energy level so I could better plan for the days after chemo in the upcoming cycles. The calendar was great for keeping up with my energy levels, temperature and medication schedule.
I also created a goal for each month; something to help keep me focused on why I was fighting this battle. Most of these goals were events that involved my children and would not be a challenge for most people, but for someone on chemo the exact timing of those events would mean I may or may not be able to attend.
Each month I would write an inspirational saying or promise from the Bible. I firmly believe that the toughest part of dealing with a cancer diagnosis is the mental battle. I had a work associate contact me very early in my diagnosis and she said, “You have to tell yourself ‘I am in perfect health’. ‘Faith is the confidence that what we hope for will actually happen, it give us assurance about things we cannot see (Hebrews 11:1)’. Her words spoke into my spirit and took root. I purposed in my heart that I would only speak God’s promises to myself during this journey. And, I wanted to keep my focus on life-giving words even while scheduling appointments and keeping records of my progress.
While my treatment notebook was a great resource during a difficult time, it has now become a memorable detailed record of a life-changing journey. If you are beginning a cancer journey, I hope my experience will give you some ideas and help you organize your chaos.