(written by Sunny)
Before Lindsie left for Disneyland we decided it would be a good idea to get some things organized since she'd be jumping right into appointments and probably treatment as soon as she got back. Of course the hope was that life would continue as normally as possible, but we also wanted some plans in place in case people needed to step in and help out at a moment's notice.
We wrote out a detailed schedule of what it takes to get the McDaniels through a normal week. We included the times kids need to wake up, when they need to be picked up and dropped off and who usually drives, nap time, music lessons, regular appointments, etc. This proved to be a big help later when things got a little chaotic. It was easy for friends to look at the schedule and find people to fill in without Lindsie or Josh having to think about it.
We also purchased a large desk calendar and hung it on the wall. The calendar is color coded by family member and shows where people need to be, who is driving them, who is babysitting, when meals are coming in, etc. It helps anybody involved to get the big picture of what needs to happen to keep things running and takes pressure off of Josh to make sure things are covered. He can just look at the calendar and see what the week will look like and where he needs to fill in.
We also put together something we call the cancer binder. This is where we keep all the notes from Lindsie's appointments, important paperwork, test results, and other things. It is super convenient to know where to find whatever we need when we need it. It goes with us to every appointment and helps keep us organized. I was asked recently by a friend to help her organize a binder for her mom so I typed up some info to help her. I'll share it here in case anybody reading this could benefit from it.
Supplies
-1 1⁄2" binder
-8 pocketed subject dividers
-business card holders
-cd holders
-page protectors
-paper for notes
-additional folders
-zipper pouch(es)
-calendar
Ideas for organization
-Use a divider for each doctor/specialist and keep notes from visits in those areas.
-Get business cards from everyone- nurses, schedulers, billing, social workers, etc.
-Ask for copies of your scans and other tests. It's nice to have if you're seeing a new doctor.
-Make a tab for pathology reports
-Make a tab for other results such as scan reports
-Keep a current medication list in the binder at all times
-Make a master sheet of personal or other information that may be needed for filling out paperwork
-Have a copy of your living will/directives in the binder
-Use the calendar to schedule appointments, but also to keep a history of when certain events occurred and use it as a reference during appointments
Other ideas
-Print out some med tracking sheets. Write down everything you take and when. Not only will it help you keep track of when you should take your next dose, but if you keep your most recent sheet in your binder you can readily tell your doctor or nurse what you've had and when. This, along with your current medication list, is especially helpful if you end up needing to go the hospital for any reason.
-Always take someone with you to appointments/treatments who can take notes, ask questions, and advocate for you. Even if your spouse is with you you may want to take someone who can be more objective.
-Write down (or have your advocate write down) everything you want to remember. Ask your doctor to repeat or spell things.
-Ask for a medical release form at each office that will allow your spouse, your advocate, a child, or whomever you choose to access your records at any time. Persons listed on that sheet should be able to speak directly with your medical staff about your case, which will be supremely helpful when you do not feel well.
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