Creating a Medical Diary

If you or a loved one has been diagnosed with bladder cancer, then you are already aware of all the tests, doctor’s visits, therapy visits, etc. The amount of paperwork you will accumulate will be overwhelming.

Shortly after my diagnosis, I began to wonder, what if something happens to me and I have to go to the closest hospital - they don't have my records so what happens? I was so overwhelmed by the amount of paperwork that I had piled up in a corner. I didn’t know what to do with it all. That is where a medical diary comes into play.

Create a binder

You can create a binder that contains everything pertaining to your illness. All you need in terms of supplies are:

• 3 inch loose leaf binder
• 3 hole punch
• Binder tabs
• Loose leaf paper
• Pencil pouch

Label the tabs with the following headings (or use the headings that pertain to your situation):

• Bloodwork
• Tests
• Biopsies
• Office visits
• Food diary
• Water intake
• Medications (this does NOT include the drug(s) for your cancer therapy – chemotherapy, immunotherapy, etc.
• Medication diary
• Hospitalizations
• Immunotherapy
• Chemotherapy
• Radiation
• Chemotherapy/immunotherapy side effects (keep a daily diary if you're suffering from multiple symptoms
• Pain - if you are struggling with pain, also keep a daily diary of when the pain occurs.

Organization can really help

After each visit to the doctor/hospital, you will usually be given a summary. Ask for a hard copy of ALL test reports, and insert them into the appropriate tab. After a cancer diagnosis, we know that the tests and reports are never ending, so my suggestion is to purchase a 3 inch 3 ring binder.

The pencil pouch is to hold all CDs of x-rays, scans etc. I have found that you can purchase actual plastic pages that fit up to 4 CDs but I can hold more in a pencil pouch. And, they are more economical, as you will probably be accumulating a lot of CDs. The pain, medication, food diary, etc. sections can be simple loose leaf paper where you can keep track by date.

I take my book with me to every doctor appointment. If there is ever a question about how I felt on a specific day or questions that I have, it's all in the front of my book. Each of my papers in my tabs is chronological so that the most current page/date is first.

For me, it is a bit more complicated, as I have two different cancers. So I have two different books. One for my Lung Cancer and one for my Bladder Cancer. I actually have “graduated” to a second book for my Lung Cancer. I celebrated when I had to get a second book because it meant I am still alive, fighting and winning. This method may work for you as well if you have more than one chronic illness.

This will simplify the process if you ever go to the hospital and your doctor is not available. The information contained in your book may save your life.