Sound Familiar?
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Got my family on board for the tape recorder.
Mom has a treatment today. Hopefully her levels will continue to be as encouraging as they have been.
Next Thursday is big scan day. April fools day..
Positive energy all around.
Safety in numbers..Good luck with your mum’s tests, Dawna. And thank you, Margaret, for the recording idea. I’m the note-taker at my sister’s meetings but there’s a lot hanging on a word (& can I be sure I wrote what the doc said, or what I thought the doc said …?) and intonation is so important, too. I’ll try recording next time.
My best to you all.
JuliaDawn….the webinar will be accessible, on this site, within the next few days. Everyone will be informed. Thanks for showing the interest.
Best wishes,
MarionThank you all so much, first for your prayers and second for your suggestions. I will try the tape recorder route. Hopefully the doctor will be on board for that.
Also, do you know if there is a play back for today’s webinar? I really wanted to listen in, but had to work.
Dawn
Margaret,
Thanks for the great “recording” hint! My sister-in-law went with me to my appointments when my husband couldn’t make it and took notes. BUT this is a much more thorough way to pass on information. And no room for mis-interpretation on the note-taker.
Thanks again. I will use this in the future if need be.
Linda
Recordings worked well for us, also. The information given by the specialists can be difficult to remember and at times, with emotions running high, easily misinterpreted. Never did we encounter a problem in fact, most physicians welcomed the idea. I agree with Margaret, it is a great tool to use.
MarionDawna:
One of the things that my husband Tom did when he started out on treatment for his new tumor was to go to radio shack and purchase a small digital tape recorder. When I cannot be off work to attend doctor visits with him, he takes it along and tapes the meeting with the docs. When I get home from work, I just listen to the recording and then I know exactly what happened and what was discussed and what the next game plan is. This is very nice, and if I have questions, I write them down and Tom calls his coordinator the next day and gets the answers to my questions.
This method has worked well for us for the past 4 months and it keeps me in the loop for those times when I can’t be off work. Perhaps this is something that you could consider doing for your mom. It’s always nice to have the recording, because then other family members who have questions just have to listen to the recording and you don’t have to keep repeating what happened. Tom’s children and friends have all been able to hear the recordings and then they know exactly what is going on as well.
It’s also great to be able to go back to those recordings when you can’t remember what was said.
Prayer’s coming your Mom’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Dawna, I agree with Lainy, it would be helpful to you to be in on the consultations. Even the most ‘on the ball’ person doesn’t remember exactly how a doctor puts things, even a slight difference in a reported sentence can totally change your perspective (I remember there were three of us in a consultation and no one could remember if the doc used the word ‘probably’ or ‘possibly’ but the implication was huge).
It sounds as if the docs are being fairly aggressive though – when you say unsuccessful surgery does this mean the bile duct tumour was not removed? My dad had a spot on his liver which they said they thought was benign. Just wondering if they removed any of the cancer/lymph nodes?Kate
Dawna….with this disease “stable” is good. I am crossing my fingers for your Mom to continue to do well.
Best wishes,
MarionThanks for your quick reply. My Mom is 63 and is being treated at Moffit in Florida with consult from the Mayo Clinic in Jacksonville. She came to NY for treatment, had a consult at Sloan, had the surgery done in North Shore Universtiy on Long Island and I have been in touch with an Angel/Doctor at Mt. Sinai in NY. All the docs were in agreement for her initial treatment.
My step father is her main caregiver but my sister is also there. I will try to conference in on the next visit. Hopefully it can be done.
Her tumor in the bile duct was 1.2 cm but I am not sure how many spots were in the liver.Dear Dawna, we cannot second guess what the scans are going to reveal. Every time I feel “nervous” about Teddy’s PET Scan that is the time the Radman tells us it was good news. Who knows. I try to tell myself to stop wasting precious energy but I totally understand how you feel. If her enzyme levels are normal that is a positive sign. Anything is always possible. We have had patients here who had their tumors shrink and went for surgery. For Cyber Knife the tumor has to be under 7CM and there cannot be too many tumors. As to you not getting the right information I have an idea but not sure it can be done. If your mom told the doctor that it would be OK for you to listen to what he tells her, have her use a cell phone while in the examining room. Have a list of question ready. Ask the doctor if you can listen to what he tells your mom and ask him if you can have some questions answered as she is not transferring anything to you. Who is her caretaker? Someone really needs to be her advocate. May I ask how old mom is and where she lives?
I have not been on the board in a while, but reading your stories daily, gives me strength, hope and the realization that we are not alone in this awful struggle. My mother is set to go for her her second round of testing in two weeks. She was diagnosed in Dec with stage 4, and had unsuccessful surgery as the docs realized that there were small spots on her liver and the lymph nodes were also affected. Her subsequent PET scan showed one very small spot on the lung but overall the her CC was “stable”. She seems to be responding to the chemo combo. Doc’s said her enzyme levels are normal (she is far away from me, does that sound right?/) which indicates the chemo is working. I have no idea what to expect from her next set of scans. I was told it would be a CT scan. She is afraid that they are going to tell her in April that the chemo has stopped working and there is nothing they can do. Last treatment they said that her levels have moved in the right direction and after her evaluation in the beginning of April they may discuss adding radiation. Not sure how to read this. Is it possible to reverse this at stage 4? Has anyone heard of the tumors shrinking to the point that surgery is an option?
Also, I have read about Cyberknife, IPT and photodynamic therapy.
Being so far away is not helping as I am getting much of the info third hand as my mother is not listening to what the doc’s are saying.Sorry to ask so much info from all of you, but I pray for all of you daily. You are all amazing.
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