If you or a loved one is dealing with cancer, you know all-too-well the ups and downs that come with battling this disease. Not to mention — there’s a ton of treatment information to gather and track. It’s easy to become overwhelmed. How can you figure out what information you really need and what questions to ask — and how do you organize it all?
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Here’s a step-by-step plan to help you create a system for keeping your cancer information organized. Once you have your system in place, it’s amazing how much it helps dampen stress. “When patients and their loved ones have appointments, treatment information, personal information and doctor information readily available, it eliminates a major stress factor and allows the patient to focus on healing,” says Josette Snyder, RN, MSN, AOCN.
Step 1: Choose your method(s) for recording the information
Will you take notes on paper? On a phone or on a tablet? Both?
Some people understand and retain information better when they are handwriting notes on paper and keeping them in notebooks and folders. Others might prefer technology because the information is harder to misplace. Smartphones and tablets have made it easier to keep track of appointments with calendar alerts.
“Many patients are still apt to use a mix of both electronic and paper,” says Snyder. “They want to cover all their bases and make sure no important information slips between the cracks.”
However you choose to record information will probably impact how you put the rest of your organizational system together.
Step 2: Decide what information you need at your fingertips
Of all the information you’ve gathered so far, decide what you need to have most readily available (information you might need to take to your appointments), like:
- Driver’s license/valid form of ID.
- Proof of insurance.
- Prepared questions.
- List of medications.
- Emergency contact information.
On the other hand, ask yourself what information can you set aside as long as you can locate it easily if you need it?
Step 3: Create categories of information
To help with Step 2, break down the information into categories, and then decide how to handle each category.
Cancer treatment categories can include:
- Personal health information.
- Appointment schedules and doctor contact information.
- Insurance and billing information.
- Articles and research.
- Legal documents.
Step 4: Break down categories into even more specific information
Below, find suggested lists of information that can fit into your cancer treatment categories and keep you organized:
Personal health information:
- Lab work and test results (ask for copies).
- Updated list of medications (prescription, over-the-counter, vitamins/supplements). Each time you see a doctor, they will likely ask to review what medications you are taking.
- Treatment records, including any surgeries, radiation therapy (start and stop dates) and chemotherapy (drugs, dosages, start and stop dates).
Schedules and contact information:
- Doctor appointments.
- Treatment appointments.
- Personal schedule/family member (or whomever is accompanying you to appointments) schedule.
- Important phone numbers (contact numbers for your healthcare team and pharmacy).
Insurance and billing information:
- Insurance policies and other insurance records.
- Explanation of benefit records.
- Medical bills and receipts, including prescription receipts (these are helpful at tax time).
- Advance directives, living will and healthcare power of attorney forms.
- Will, living trust and guardianship papers.
You can also create a category for articles and research. This would include educational information about your diagnosis and treatment that you would like to keep.
Step 5: Develop an organizational scheme
Now that you can visualize the categories of information you will accumulate, you can start to develop an organizational scheme that fits your style.
You might separate binders per category and/or scan all documents and store them in a cloud-based storage application so you have them readily available anywhere at any time.
With all of the organizational tools (physical and digital) that are out there, it’s important to take some time to sort your cancer treatment information to avoid headaches and stress trying to find papers, notes, etc. “Taking this step will allow you to focus your energy on feeling better and beating cancer,” says Snyder.