please help me

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

hi all,

sine, thank you for your suggestion, it really is a great idea. I do agree that people will hear things differently, I myself have experinced this many times. Also,as things are passed back and forth a lot is added or lost. I will suggest your idea to my father, let me see how it goes.

My father already asked for a copy of his records. I have already looked at records that were given to him initially. Most of what he said is there. New records are showing totally different thing. We will see what happens when I talk to his doctors.

I will let you guys know what happens.
Thank you all for thinking of us.

I know that I am new here, but if there is anything I can do for you guys let me know.

mimi

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

Hi guys,

My dad had his Bronchoscopy+lung biopsy yesterday. They also did endoscopy on his abdomen. Today they are doing CT and biopsy on his abdomen. Things are finally moving along, I guess soon we will know for sure.
I feel like I am falling from a huge mountain..I really wish I would just hit the ground.

Right now we are just waiting...isn't this the worst part?

mimi

brainman · Posted: Tue Dec 18, 2007 9:57 am Post subject: Re: please help me

Mimi, thank you for the update. I have been following your father's story all along and I know how difficult this waiting has been for you. I am glad that things are finally moving forward.

I continue to think about and pray for you and your father.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

sine · Regular Joined: 14 Nov 2007 Posts: 10

Hi Mimi,

Yes, the waiting is terrible. We had to wait a week to get my dad's results and though the news was grim (distant metastasized stage IV NSCLC), just knowing what we were up against was somewhat of a relief.

I also forgot to tell you that in addition to the recordings I make of dad's doctor's appts., I also have my own large 3-ring binder that I take to every appt. I request a copy of all of test results, correspondence between dr's, and I keep a daily record of his symptoms and the meds he takes in it. I have copies of the list of meds so that when someone asks us what he takes, I just hand them a copy to put in his file.

In addition to the cancer, my dad has Narcolepsy, high blood pressure, high cholesterol, diabetes, and he had a mild stroke a few years ago so he takes a baby aspirin every day. On the days that he has chemo, he takes about 17 different types of medicine a day, spread over an entire 24 hour period. I created this tracking sheet because I was so afraid that I would mess up his doses. He does a better job of tracking his glucose levels now too since we started writing them down 3 times per day. We also record his temp, his symptoms, appetite, sleeping habits and quality, frame of mind, check for mouth sores, etc. Basically all the little details that a cancer patient has to watch in order to get the best results from their treatment plan.

My unsolicited advice to you is put yourself (or someone you trust) in charge of your dad's care. Do NOT leave it to the docs and nurses. Of course they mean well, but no one loves your dad as much as you and your family! More than once my dad has been given contradictory orders from a another doctor and from his oncologist. We might not have caught it except that I had written copies of all of the orders and was reviewing them while filing them in my binder. Furthermore, now that everyone on his care team expects that I will ask questions, request copies, and be an active part of my dad's care team, they really treat me with respect and I believe take extra care to get everything exactly right.

I will be thinking of you and waiting to hear your dad's test results. My fingers are crossed that the news won't be too bad!

Take care,

Sine

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