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I’m a pretty organized person, but cancer treatment really took me off my game. I struggled to remember the dozens of appointment dates, countless questions for my doctors, and which of my 17 prescription meds I was supposed to take when I was staring at the ceiling at 3 a.m. convinced I was going to die. (Three cheers for Ativan!)
Coordinating all this info was tricky.
My best friend came to the rescue with the best gift ever–a hand-made cancer binder set up with places for me to put all the information I was receiving. Over the course of many months of treatment, I refined it to include everything I needed. Today I’m sharing the tools you’ll need to make a cancer binder just like mine for yourself or someone you love.
Cancer Binder Shopping List
A three-ring binder
A 1.5” binder should be sufficient to start. Any larger, and you’ll dread taking it with you to appointments.
If the binder starts to get full, bulky information can be summarized in a log sheet and then stored in a filing cabinet or scanned and stored digitally. I kept folders on my computer with the same names as my binder divider tabs so I could quickly look up any information I’d scanned. To learn more about how I organize my digital medical records, you can skip to the end of the post.
You’ll want dividers to help keep your information organized. How should you divide up the sections? Keep reading for some ideas of sections you might want to include.
These dividers have tabs that can be written on in pencil and later erased if your needs change:
- Calendar: you can have a printed calendar in here on which to record appointments as well as a rough schedule/outline of proposed treatments.
- Test results: here, you can store the results of your labs, scans, and biopsies so that you can easily share the information with new doctors and remain clear and informed yourself about the progress you’re making in treatment.
- Doctor instructions: here you can save educational information from your doctors such as chemotherapy education materials and post-surgical instructions
- Medications: you will be asked frequently what medications you’re taking, and you’ll need to start or stop certain ones depending on where you are in treatment. Record the medicine, dates you took it, and dosage. Vitamins and supplements should be included on this list, too. My You Can Cancer Planner includes a printable template for this.
- Medical History: take the time to write out your medical history. Include in your history any relatives who have had cancer, noting what kind they had, the age they were at death, and their cause of death.
Breast Cancer Treatment is Overwhelming
Organizing all of your medical information shouldn’t be.
The You Can Cancer Planner was created by a survivor, for survivors.
- Gifts and cards received: you’ll likely be receiving food, gifts, cards, etc. from well-wishers. You can log these gifts here. This list can brighten your day when you’re feeling down and make writing thank you notes a breeze when you have the energy.
You might even consider keeping a few note cards with stamps in a page protector in this section to write a quick note while in a waiting room or chemo chair.
You’ll want some of these sheet protectors to hold special papers (like certificates you are given for completing chemo or radiation or extra-special notes of encouragement). You’ll also find them useful for holding envelopes, lab orders, prescriptions from your doctor, etc. that can’t be hole-punched.
Business card pages
Business card pages will be incredibly handy. You will visit many offices over the course of your treatment. As you leave a facility, grab a business card and write a quick note with the date and why you visited them.
When you need to schedule a follow up PET Scan, call to ask for medical records to be transferred to a new provider, or recommend your excellent breast surgeon to a friend, you’ll have all the info in one place. Your business card holder is also a handy place to store those appointment reminder cards that you get.
Even though we live in the age of Dropbox, you still might find CD holder pages useful.
When you have imaging (CT, MRI, ultrasound, PET Scan, etc.) done, you can ask to have a CD copy burned for your records. These are handy to have when consulting with new doctors or comparing old test results against new ones.
Sticky notes are always handy to make a temporary note of an appointment date, phone number to call, or quick question for a nurse.
INSTRUCTIONS FOR MAKING YOUR CANCER BINDER DIGITAL
When I was in treatment back in 2014, I used a paper-based filing system, but my life today is almost entirely paperless. During my recent reconstruction surgeries, I came up with the system below to digitally organize all the information my doctors were giving me.
Scan your physical papers
First, you’ll need a great scanning app for translating all of your photocopies into PDFs. I really like Genius Scan, which is an app available for both iOS and Android. It uses your device’s camera to take a picture of your document. You can then convert it to PDF and save it in cloud storage.
Organize the information
Now, you’ll need a system for organizing all of your information in the cloud. I like to organize the information both by broad categories and by date.
Broad Categories include things like “Test Results” and “Doctor Instructions” as outlined in the binder instructions above. I also have folders for insurance paperwork and doctor bills.
Within those folders, I have yearly folders. I name documents very specifically to aid me in searching for them later: “Hormone Test 11-12-15” or “Plastic Surgery Discharge Instructions 7-24-19”, for instance. That makes information easy to find when I want to look at again.
Will you need to look at all this health information again? Probably. I’m more than five years out from treatment, and I have referenced my old information during insurance disputes, when wondering about a long-term side effect, or when looking up doctor information for a recently-diagnosed friend.
If you’re reading this post, I’m guessing that you or someone you love has been diagnosed recently. I hope that the information I shared here was helpful, and I’m sending you a big old hug (and a FUCK CANCER!!!) from a sister survivor.
You got this, friend.
Mama Goes Beyond is not a breast cancer blog.
But as anyone who has ever had it knows, breast cancer influences a survivor’s life forever. Many of the posts and products I create are heavily influenced by my own journey with breast cancer. I set up a page here on the blog to help you easily find these resources in the hope that they will help you and your loved ones on your cancer journey. Click the button below to access.