Thanks Renee and everyone. Last time I spoke to my sister, they were taking Mama for a brain CT. Not sure how she managed that or if the doctor is still walking , but I guess we;ll see. She was very evasive on the phone with Mama in the room, so i will speak to her after work. We will also see how the nutriton consult went.
I have been following your story and I hope that you may have some answers by now. It is so sad, that when you opt out of chemo, you are many times directed back to your family doctor. This means that any follow up such as scans, draining off fluid from the lungs etc. are not done through the specialized cancer hospitals and oncologists (there service is much faster). We experienced this first hand here in Canada, when follow up medical services by the Cross Cancer Institute were refused after 2.5 liters of fluid was drained off Hans his lungs ( cancer had metastasized to the lungs)and Hans told the oncologist on duty that chemo was not an option.
It seems that this is not uncommon, I have heard this from different other people as well. It is really distressing, that the care of oncologists and the cancer institute is not available for those patients, just when they need it most in the last stages of this horrible disease.
After the refusal of the Institute, Hans talked to his own oncologist at the Institute, who was on holidays at the time of the refusal, and asked him to make a scan, because of the lung involvement and because he wanted to know how far the cancer had spread. Hans was able to persuade him ...his oncologist was more compassionate willing to make a scan, but may have broken the guidelines.
I hope you or one of your siblings is able to persuade the oncologist to make the scans.
One would think that would warrant scans, but the doc still hasn't recommended them. They have now taken her off the IV drip (of sodium I suppose) because her levels are normal again. My sister WILL be speaking to the doc tomorrow one way or another. She is able to be there tomorrow as she doesn't work outside the home. She will get answers if there are any I'd say. Even if Mama hasn't chosen, it seems to me that she deserves to know what is going on. She hasn't spoken to us about her final wishes because she says she isn't ready. I just think that the doctor needs to be straightforward. Maybe I want that for me. Maybe I'm being selfish.
Mama will be spending one more night in the hospital. Her levels are up to 134 (almost normal). My sister cornered the doctor on rounds this weekend and he said that while her sodium levels were very low, he did not feel they were low enough to cause memory problems. Her regular oncologist should be in tomorrow and she plans to corner him also. She is more "aggressive" than me! Basically we need to know if this is going to be an ongoing problem (in his opinion) and what he believes is the cause. Mama also has a consult with a nutritionist tomorrow. I guess that's all I know right now.
Julieann -- My dad had lung cancer, as I mentioned before. I remember that he was
in the hospital for hypoatremia once but that he recovered well from that. I do not
recall just what they did, but the Sunday after being so sick in the hospital, I remember he climbed the maybe 20 steep steps up the hill to out church. People, including the pastor, were very surprised to see him and he (Dad) was very pleased with himself.
I was also a little low sodium when I was being treated in Boston.
They told me to drink chicken broth, gatoraid and stuff like that and it seemd to keep my sodium in or near normal range (although tests later showed my tumor was growing during that time.) Each journey is different though -- in support --