When my dad was first diagnosed with Lung Cancer, we had all of his scans and medical records compiled on a disk for our intake appointment with Memorial Sloan Kettering.
The night before the appointment we spent hours searching everywhere for that disk. The house, the car, bags, and purses… We couldn’t find that disk anywhere.
I will never forget the stress of that night.
Hours of searching, arguments about who had it last, and worst of all it was after midnight when we stopped looking and started figuring out how to get another disk before our appointment.
Having a cancer binder set up and organized would have saved us a TON of stress and frustration that night.
Cancer comes with a significant amount of information.
- Side effects
- Medication changes
The list is endless.
You are entering a whole new world. Seriously.
If you’re just starting out, there’s going to be non-stop appointments, several new doctors, and a boatload of medical information flying at you from every direction.
No matter how good you are, or how organized you are… you will miss things.
There’s way too much information for anyone to be able to manage.
Creating a cancer binder is cheap, easy and you can put it together in under an hour. And, once it’s assembled it only takes a few minutes to maintain.
Using this system will save you HOURS of searching for the medical information you need. Whether you’re looking for something from yesterday or 3 months ago… You’ll know exactly where to find it.
To make setup even easier, you can grab the FREE printable Cancer Binder Pack. It’s designed to walk you step by step through the entire setup with printable pages for every section.
And the best part, The Cancer Binder Pack is only 25 pages and costs about $12 to print in color at Staples (but you can do it for much cheaper at home).
What You Need to Get Started.
- 2-inch or larger binder: Don’t try to fit everything into a 1-inch binder. It will work for a while, but you’ll need to upgrade really soon. Skip all that by starting with at least a 2-inch binder.
- 1 pack of dividers: Grab them at the dollar store for $1.
- The Cancer Binder Pack: You can grab it for free here.
- Pencil case: Keep pens, pencils, highlighters, and any business cards you get in a pencil case in the front of the binder. It will save you a lot of time and energy.
- Erasable pens or pencils: Use a pencil (or Frixion pens, which are fully erasable) for writing so you can make changes without making a mess.
Okay, let’s get started putting your cancer binder together…
Step 1: Choose a Cover for Your Cancer Binder.
Even when you’re just starting out, you still have a ton of energy and you’re determined to kick this thing’s ass… It’s hard to stay motivated for the long haul.
This cancer business can really wear you down.
Between the stress, the obstacles, and the slew of doctor’s appointments you’ll be dealing with, cancer is a really draining disease. It’s hard to feel excited about another day at the doctor’s or another day in bed feeling like crap.
The binder cover HAS to be motivating.
You can create a photo collage of the people you love here for really cheap (choose 8.5 x 11). Choose images that remind you why you have to keep going.
Or, you can use one of the quote pages in The Cancer Binder Pack to remind you that you are strong as hell and YOU CAN DO THIS.
Step 2: Set Up the Calendar Pages.
- Add the month and the dates to each of the calendar pages. Once they’re dated, the calendar pages go in the first section of the binder.
Use the calendar pages to document:
- New appointments
- Hospital visits
- Treatment dates
- Surgery Dates
- New symptoms
- Starting a new medicine
- Starting a new treatment
- Scans that are scheduled
- Results of the scans
There is so much happening all the time. The more you have written down, the better you will be able to manage it all.
Pro tip: Keep a timeline on your calendar pages.
A timeline is an outline of what’s happening on the journey. For example…
- New symptoms popping up.
- Starting a new treatment or medicine (which could lead to symptoms/side effects).
- When did treatments like chemo, radiation, or immunotherapy start/finish/get skipped?
- When did symptoms like nausea start, stop, get better, get worse…
You are going to want to be able to keep everything straight and have an idea of the dates when things are happening.
When you have new symptoms the first question the dr will ask is “when did that start?” “When did it get worse/better?”
Keeping a timeline right on the calendar is a great way to keep that information accurate. Just jot it down right in the calendar.
Heads up! Creating this cancer binder is even easier because all of the worksheets have been created for you, so you have everything you need to get this binder started.
Step 3: Compile an Accurate Medical History.
- Write down your medical history. Anything and everything having to do with your previous medical history should be compiled on an easy to read document.
Cancer is probably not the only medical concern you have and other health issues may need to be managed as well. It’s imperative that the Dr’s are able to factor all of this in when making treatment decisions.
- Include any diagnoses, surgeries, hospitalizations, etc on this page. Do you have Diabetes, Congestive Heart Failure, or even high blood pressure?
You will be asked these same questions over and over and it’s so much easier when you have it all together.
**Hint: Keep these pages as up-to-date as possible.
Step 4: Fill Out the Medication and Allergy List.
- Complete the medication and allergy list. A complete and updated medication list is a non-negotiable. You need to have that information available quickly and easily.
EVERY TIME you go to the doctors it’s the first question they ask, “do you have any changes to your medications?”
Keep that information updated and in one place.
I recently watched a frazzled woman in the emergency room hand the nurse an overstuffed bag of medicine bottles.
Some of the bottles were hers, some were her husbands and some didn’t make it. As the nurse was trying to go through them, the bottles were falling out of the bag and rolling around on the floor.
These are the scenarios that we don’t think about until we’re in the moment. So, what’s the quickest way to to get that information quickly and efficiently to your medical team?
Have it already organized with all of the information they need and then give it to the nurse.
Make sure you include the name of the medication, why you take it, the dosage, and times the med needs to be taken.
Here’s an example:
|Take one in the morning and one tablet in the evening.
**Hint: This information should be as up-to-date as possible.
Pro tip: I also keep a snapshot of this in my phone, as a backup. This way, if I don’t have my binder with me for some reason (like an emergency room trip from a restaurant or something) I still have the information I need.
Step 5: Identify Your Care Team.
1. Who is your care team? Write it down.
Family members, insurance companies, social workers, doctors, specialists…
Who is involved in your care and how can they be contacted?
Having the names, phone numbers, fax numbers, and addresses of your treatment team and insurance company will save you a lot of time tracking that information down when people ask for it.
- Who’s in charge of what?
- What number should you call if you have a problem or a question that can’t wait?
- How can a doctor get a hold of your caregiver?
If another doctor like your Primary Care Physician or Cardiologist needs to talk with your Oncologist, you’ll have all the contact information you need right in the binder.
Step 6: Complete Your Health Care Proxy, Living Will, Last Will and Testament.
1. Fill out your healthcare proxy & living will.
- Once you have them drawn up make some copies.
What do you want to happen if the unthinkable occurs? What are your wishes and who should make medical decisions if you can’t?
This experience makes you see and think about things very differently. Health Care Proxy documents should be on-file for everyone. Even you. My husband and I now have a will, a healthcare proxy, and living wills, all drawn up and filed.
I could walk outside tomorrow and get hit by a bus. Hey, you never know.
Step 7: Start a Phone Call Log.
1. Use the phone call log to track calls and conversations.
This was added when a good friend of mine pointed out that she makes a gazillion phone calls a day, but we had no place to track them.
This page is designed to give you a space where you can keep track of all of the back and forth communication with doctors, insurance companies, pharmacies, social workers, physical therapists (this list could go on a while!).
It’s a great place to jot down notes and keep track of any conversations happening during your journey.
It’s especially helpful when you’re chasing down information.
Step 8: Create an Emergency Section.
1. Compile any emergency information here.
You should include and highlight anything that you need to be aware of or watching for and how to deal with them if they happen.
- Contraindicated medications: meds that when mixed with what you’re already taking can have adverse effects (sometimes life-threatening).
- Restrictions: Things you need to avoid.
- Symptom monitor: Things to watch for or symptoms to call the dr about.
- Emergency instructions: Directions for specific symptoms and how to respond if they are occuring. Clearly identify any symptoms that that require 9-1-1.
Step 9: Establish a Section for Notes.
- Add a section for notes.
Create this space with some lined paper so you can take notes during dr. visits. There is a ton of information coming out of these appointments and you don’t want to miss anything…
They talk about everything.
- Supplements or strategies that might make you feel better.
- Referral’s to a new specialist or therapy.
- Instructions you need to follow.
- Questions you want to ask
Should all be written here.
It’s easy to get distracted and overwhelmed during appointments, but this is your opportunity to get the information you need. You need to be able to write down important information or questions you want to ask.
Heads up! Creating this cancer binder is even easier because all of the worksheets above have been created for you, so you have everything you need to get this binder started. You can get those worksheets here for FREE…
Step 10: Add a Pencil Case.
1. Once everything is assembled add a pencil case to the front of the binder.
Fill it with pencils, pens, and highlighters (so it doesn’t matter if you lose them). The pencil case is AMAZING at making sure you always have something to write with! I mean who wants to be this organized and then be scrambling around for a pen?
It’s also a great place to keep any business cards (Or DISKS!?!), so you can easily find them. You know, without hours and hours of searching.
Additional Cancer Binder Categories.
You can create additional sections based on your situation.
Maybe you need a section for things like…
- Lab reports
- Treatment/medication information sheets
- Discharge Papers/Medical Reports
- Medical Insurance
- Medical Bills
Actually, the list of additional categories is endless, but the categories above will give you a solid foundation as you figure out what you need.
As a bonus, medical staff LOVE this binder. TRUST ME, they’ll think you’re super organized and on top of your game (even if you feel more like the hot mess express)!
This binder just gives the impression that you have your stuff together.
If you’re sick of scrambling for information every time you need it, this is a brilliant solution. And once it’s set up, it takes minutes to maintain.
Just grab the FREE Cancer Binder Pack which has every single page you need to get set up and running.
After we lost the disk that held everything we needed for the intake appointment at Memorial Sloan Kettering, we learned our lesson…
The morning of our appointment we left the house at the crack of dawn to drive an hour north so we could replace the missing disk with all of his records.
We then backtracked another 3 hours south to Manhattan to meet with Sloan.
We were a little late, but we made it. It was a long and exhausting day, but thankfully they started his treatment the following week.
Right after that we created a cancer binder and we’ve been using it ever since.
I’d love to see what your cancer binder looks like. Comment below and show me…
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