Journaling/keeping track of appts., etc.

ScatteredEnergy

Hi. What do you use for the above? I started using these from EC https://www.erincondren.com/breast-cancer-petitepl... but the BC Journal has only 6 weeks and I'm on the 2nd to last week & I haven't even started treatment so I'm looking for other options to see if I like them more.

TIA

MountainMia

I didn't use anything for keeping track of appts other than my regular calendar. I don't keep a journal, but in truth I've never seen this subject come up here, so I don't know if there are other cancer-specific journals out there. Considering most people have many months (or years) of treatment, it seems odd to me that the one you bought only serves for 6 weeks.

Good luck finding a method of recording you like, and good luck with your treatment.

Dani444

I bought a 3 ring binder and created my own. I printed out calendar pages and also got some things off Etsy. I had mileage tracker for each month, and also noted co pays and out of pocket expenses for tax purposes. I had sections for notes/ questions, and pouches for copies of medical records, receipts and EOB’s. I took it to all my appointments. I love doing crafty things and it helped to distract me in the beginning. I would just take myself to the craft store to buy fun papers, and embellishments to make it pretty. Best of luck to you.

DodgersGirl

ScatteredEnergy- I created a spreadsheet where I tracked certain items by year. I keep all my blood work in it’s own tab so I can quickly create charts/grafts to see trends; I keep track of doctor’s appointments on another tab including copays so I can calculate totals as needs; another tab for prescriptions along with copays; another tab is diagnoses so I can remember the dates dx’d, another tab was used to track infusions, rad sessions, scans, etc., and a tab with mileage from home to treatment location so for taxes I could quickly calculate mileage

I also kept a journal like a diary where I hand wrote notes, thoughts, etc.

All my med bills went in a three ring binder matching insurance EOB with bills from providers.

ScatteredEnergy

Thank you MountainMia. I have already an agenda for every day life. And I agree with you about the length of this. I'm sure money is behind it lol

Thanks Dani444, maybe I'll go that route and create my own.

DodgersGirl, I have a folder like the ones attorneys use and I try to keep expenses on one side, testing results on another, etc.

Anonymous

I made my own. I remember things better when I write them down by hand, and my husband and I could use it together when I was being examinated and he was there and could take notes, write down terms, etc.

ScatteredEnergy

Thanks claireinaz. I might do that. Just buy a notebook a decorate it to my liking. At least it will have more pages than what I have now lol

VL22

My H bought me a journal with a plain brown cover and one of those attached strings to hold your place. I used it for countdowns, SEs, questions, what I was eating, my sleeping problems - everything. I raged on those pages, felt sorry for myself and got all warrior like. It kept me sane.

Myplan was to throw it in a campfire at some point and watch it burn, but I haven’t yet.

ScatteredEnergy

VL22, kind of cathartic but I don't know when I'll be ready to get rid of all these memories even if they are negative.

VL22

I think that’s why I haven’t done it yet. It seemed like this grand gesture at first, but I just keep pushing it off

Anonymous

Scattered,

My husband decorated it for me!

Claire in AZ

ScatteredEnergy

claireinaz, nice. My boyfriend wouldn't do that lol. I'm the one in love with the stickers and decorating lol

WC3

I'm pretty good at remember appointments but if I fear I will forget, I will put a reminder in the calander in my phone. Once I settled on my treatment center, I was given a print out of my upcoming appointments. I also get text notifications.

AliceBastable

I use my phone calendar for appointments. The breast center I went to gave me a large 3-ring binder with lots of info that the surgeon made notes in to personalize for me, plus another box with other papers. I found it to be helpful at first, then a total pain in the ass to lug around. I gave all financial/insurance stuff to hubby so he'd feel useful. I don't do journal type stuff. If I can't remember events in my own life, it's either not important or my brain is doing me a favor when it makes some memories blurry.

Moderators

Hope you don't mind us chiming in with some questions:

• Have you ever had any problems getting copies of your medical records (so you could share those records with health care providers or keep your own copies)? If so, what happened?

• What are the reasons you've found it helpful to have your own copies of your medical records?

• Do you use patient portals and/or third party medical records platforms or apps to access your medical records? If so, what do you see as the pros and cons of these?

• Do you have any tips on getting, organizing, or saving your own copies of personal medical records?

Thanks for any feedback you may have!

ScatteredEnergy

No problem.

* I have not had issues getting records or CD with images of every procedure I have done.

* Having copies of my records was helpful when I went to get a 2nd opinion from another breast surgeon. I personally like having copies of everything in case I need it in the future and I can no longer get it from the original source or for "memory" keeping.

* I have received medical records in person, like the images since they come in CDs, and the reports via the apps or online. Having online access is easier since I can see the results as soon as they are posted instead of having to wait until I can go in person to pick them up.

* I have attached a pic of the type of folder I use for my records. I use one side for all results, another one for expenses, another one for referrals, another one for letters from insurance and letters from providers, another one for after care instructions, and the one in the beginning has blank lined pages to write notes while I'm seeing a doctor.

MountainMia

Moderators, these questions deserve their own post.

I don't keep my own records. Fortunately, all my healthcare (aside from dental, vision, and PT) is within the same hospital complex, so the records needed by any of my doctors are available to them easily. I'm able to see the essentials (for my needs) through the patient portal. I love having access that way. My daughter, who has chronic lyme disease and a broad range of issues from it, has a dozen or more providers in different practices. Her record-keeping is a nightmare.

Moderators

Hi Everyone! We actually did just make it its own topic Thank you for the feedback! Feel free to write there or here!! Thank you!

Questions about your medical records

And ScatteredEnergy, thank you for sharing that (impressive) image!!

Moderators

Thanks, Everyone for your feedback.

We want to let you know that Breastcancer.org has partnered with a new resource called Ciitizen that can help make it easier to gather and organize all of your medical records and imaging disks into a secure online profile — for free! To learn more about how to work with Ciitizen (it's very fast and easy), visit www.ciitizen.com/BCO. There, you can also learn about why Ciitizen founder Anil Sethi launched the company after losing his sister to metastatic breast cancer.

Also, to better understand how HIPAA guarantees people access to their health information, listen to our podcast episode featuring Deven McGraw, the chief regulatory officer for Ciitizen, and former U.S. health privacy and security policy as deputy director for health information privacy at the Department of Health and Human Services. Medical Records: Privacy and Access Rights Granted by HIPAA

Please feel free to reach out to us with any questions or feedback.