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Personal record keeping

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

I hope that those of you that are going through treatment are keeping daily logs/records of you progression down this hellacious road. We keep at home daily records of weight....temperature.....blood pressure....bowel movements (Y/N)....plus any notations on number of regurgitations, hours slept, and introductions of new meds, etc.. It's amazing to go back a year later and read that stuff. My doctors would not allow my peg tube to be removed until I maintained, or at least slightly increased, my weight for 30 days. The record keeping kept me on a course to specifically watch my weight. Peg was removed a week and a half ago, and has totally healed. Never thought I'd be swimming this soon after removal.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

While I did not take it to the same level, your record-keeping idea is a sound one. I would only add that it is equally important to ask for your medical records each time you visit one of your doctors.

Medical records for cancer survivors tend to build up rather quickly and it is not long before the institutions involved in your care will insist on payment when they make copies of your records. This is understandable: they are not in the copying business. If you ask for the records as they are created, they are much more amenable to giving up the copies.

You may find that these records help you when speaking to doctors down the road, even the same ones, as they have so many patients, regrettably, that you sometimes need to remind them of who you are and what you've been through, even when they've been seeing you for years.

They also help you to understand better what you have been told, and help you to better formulate questions for your next visits.

That is to say nothing of reproducing facts in the event you need to go on disability or some such.

Take care,

Joe

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Joe is right on with asking for records immediately after they are created. If I ask for my CT scans On the day I have them they are free. If I wait they charge. For any scan get the electronic film or CD and the accompanying radiologist report. For any surgical procedure there is a report generatedcalled an operative report. Gt a copy of each one. All of your doctors chemo, Radiation etc. Have written treatment plans and asestments. Get those. Be able to put a package together to forward for second opnions when needed. Also past films/scans are invaluable as comparison tools years down the road which could save much aggravation. Finally pathology is available for only a short period but can be forwarded for second opnions. Check with your lab for retention guidelines.

My practice is to always grab a doctors business card and then add them to a running timeline of treatment complete with name, date, phone, fax, treatment procedure, address etc. I then update as procedures occur and save to a word document. I carry a copy everywhere and just give copies to new doctors. Sves countless time and frustration with recalling all that stuff.

Lastly list all your medications both prescription and OTC.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

I am so glad to here you got that PEG removed, and are swimming besides! I agree with your record keeping, as I have a binder with all chemo, radiations, blood work, and CT & Pet scans, and port flushes. I also kept all the drs business cards, and a calender in there with all appts, with notes when THEY canceled. ( machine down, etc.) By now it weighs about 12 lbs, and I use it to do reps to get back some muscle tone! Lol!
I must say, the doctors were quite impressed, and glad I had all the tests results at their fingertips. Delays because of lack of info are very frustrating to me, so this seemed to work out well for all.
Again, glad you are without that darn PEG thing, and swimming is a great workout Cajun! Stay well! Patty

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

My Oncologist suggested to keep a binder of everything very early. It was the perfect project for my wife. I think she was feeling like there were a lot of things out of her control. She is a nurse and very used to getting right in there and doing what needs to be done. She was kind of on the outside looking in so to speak. Anyways, she dove right into the binder and kept track of everything and I think it was the perfect "project" for her during all of this. She also got some perspective on what family members might be feeling who are dealing with this as well.

Mike

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

My Onco team suggested I keep a Log, which I did for a couple weeks, but after awhile it just got down to a kinda highlight/lowlight entry thing. As for the Records- wasn't until some 9-months after my last rad that (thanks to this forum) I even bothered to ask my Onco about the Chemo delivery I had. To her credit, she spelled it out for me. Still don't know the specifics on the rads, but do know the sessions lasted some 25-minutes of getting zapped in 20 different places, H&N.

Keeping a Log and Records does seem to me important. It gets one involved in the experience. We're H&N, people, and our road is a rough one: the places that take a hit are the places where one eats, and casts breath, which are kinda important to just making it thru the day.

Yeah

kcass

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

Good idea, I kept records of my third treatment just did not think about it for the first two. Like you said now and then I go back and read some of then. A powerful reminder of what I went through.

Glad to here you are healing so well.

Take care

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I too kept a record, though not down to the level of bowel movements. (Don't know that I'd care to read about that now, anyway.)
But, being a journalist for lo these 33 years, I did keep a daily journal, even through the darkest days of treatment. I also had heartfelt e-mail exchanges throughout my treatment with a handful of dear friends and relatives. Now, 18 months after treatment ended, I haven't gone back and read any of it, as I prefer to look forward and not in the rear-view mirror. However, the very writing of it, day by day, was a cathartic experience and I suspect was good for me at the time.
Someday I'll go back and read my journal and e-mail exchanges, and I hope I'll gain something from it.
Just not yet.

--Jim in Delaware
(Stage III SCC right tonsil, 30 rads, 2 rounds Cisplatin, modified radical neck dissection)

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I kept a journal for myself the day my boyfriend got diagnosed, and every day thru his treatment. His moods, what his schedule was, my moods and sensitivities, etc.
Then I stopped abruptly, on his last day of treatment. I had absolutely no desire to document any more of this.
I sometimes think this is kind of weird of me, but my desire for it just left. Its gone.

Kathy

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I didn't keep a detailed record specifically. But I did have an email contact list labeled JG - Update.

The list had a lot of family, friends, co-workers, church members, etc.... Every few weeks or on important events, I'd email a pretty detailed accounting of what I had been through, feeling, meds, etc...

It gave me a record that I can now look back upon, and it also gave me tons of communication and positive replies at times that I needed the encouragement.

John

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Much like Micktissue I wrote a daily blog on what I was going through. I often look back on it and amaze myself that I got through it, memory tends to lessen the remembrance of pain and am apt to think " oh it was not that bad " but of course it was. Denis

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