Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
Whenever I've forgotten something or hedged a report, sometimes out of fear, and not being a complainer by nature, my onc doctor has an insightful question.
Of course, my mental health was not impaired with age, and I still work as a financial analyst in a public corporation. But again, the professionals have usually dealt with all types of people. Hope this helps.
You make a great point though and it's one I raised with my mother yesterday when she was frustrated that there's an impression she's not giving all the info. A lot of it comes down to the questions. My mother's oncologist is lovely and seems brilliant in terms of knowledge but she hurls rapid fire medical terminology at my mother and questions are more "how are you feeling" than asking about the severity of symptoms. When I'm present at the appointment I can guide us to more detail, but when I'm not there, "I'm tired a lot." is the response and an expected symptom. "I didn't leave my chair all day and didn't eat until 7 pm" is needed info for dose adjustments but it's not readily forthcoming.
I was reading an article about oncology nursing and how this very thing can really frustrate the nurses in the infusion room, who aren't present for the doctor's conversation with a patient.
She's at great risk if her doctors don't know what's going on and proceed with treatment as if she's tolerating it better. But she is also entitled to risk her life if she chooses.
The doctors should be seeing her and doing bloodwork frequently. That would give them some idea of how her body is responding.
The doctors should be seeing her and doing bloodwork frequently. That would give them some idea of how her body is responding.
That is the Big Picture. I think that the OP is more concerned about the day to day needs.
As an example, not only did my oncologist have me list and rate my symptoms by severity but when they happened. That helped them tweak my chemo medications as well as how much and when to take my medications at home between chemo infusions (various anti-nausea medications, when to take the laxative, when to take "binding agent", when will the ibuprofen be most effect for the headaches, what medication is best to take at what time if I'm having sleep problems, etc. etc.). If I just said "I'm doing fine" there would be no way that they could help assist me recovering between chemo sessions.
BTW, I do not know if it is typical but I had blood work every week for over six months. Saw the nurse practitioner every week (twice some weeks) and saw the chemo oncologist at least once every three weeks. Plus saw the oncology surgeon and/or his staff at least once every two months and once or twice a week for the month after the surgery.
Rejecting a suggestion or help is done just BECAUSE it wasn't their idea. It's seen as meddling, insulting, chipping away at what was their independence. After all, they have lived decades as a self sufficient adult, not a child, and the fact that THEIR child is now attempting to direct what they do is even worse. My dad did this all the time. Once in a while I'd discover that he would end up doing something I suggested after all, but I also learned never to bring it up. I learned to mention ideas casually, almost in passing and drop it. Sort of like a salesman leaving pamphlets on the table but not talking about the contents. Telling a story about some other person (who conveniently happened to be going through a similar health issue) and mentioning things that seemed to help. Again, being somewhat devious....exposing the mind to an idea and letting it trickle it's way into the brain on it's own.
The way my sister and I dealt with my dad during his decline was night and day. She would browbeat him, lecture him, interfere with his medical care and providers, take on every crisis as personal, and frankly, made things worse much of the time. She made herself and everyone else miserable. All this was under the guise of being a caring resourceful daughter but it actually was her attempts to be the heroine and in control of others. She was the martyr, the ultimate sacrificial soul who must be pitied. My dad detested it. They fought constantly and in the end he would not trust her with any of his final decisions or wishes.
I lived a lot farther away so in a way was a bit more isolated from the day to day trouble. However, I tried to give him the benefit of the doubt and let him choose what he wanted for himself even though it might not be the best decision. It wasn't turning a blind eye, it was waiting until asked. We talked endlessly through all this time so even though he realized I wasn't thrilled with his behavior, he still felt safe exposing his thoughts to me. I feel people have to make their own decisions for their own reasons. If they trust you, you'll get the real story and can probably help exactly when it's most needed. I feel the relationship is most important, not the daily details. That "pick your battles" approach. I know it's hard when all the battles seem critical. In the end, when he was really vulnerable and out of "fight" guess who he leaned on and gave in to? Me, not the martyr. In the end, I think my sister remembers my dad with a lot of anxiety, frustration, resentment, and fruitless anger because they never resolved their differences. I feel very very fortunate to remember a different person; flawed, selfish, narrow minded, but a worthy human.
Yes, physicians need to know side effects and other issues...but no controlling behavior from others is appropriate.
I support your choices. My dad went through cancer and never did I try to insert my thoughts and comments in what I saw was his right to do as he pleased. The only time he asked me something was this:
Is it alright with you if I refuse to go through any more cancer treatments..? Through my tears I said of course I support your choice, knowing that was the door to his death.
I support your choices. My dad went through cancer and never did I try to insert my thoughts and comments in what I saw was his right to do as he pleased. The only time he asked me something was this:
Is it alright with you if I refuse to go through any more cancer treatments..? Through my tears I said of course I support your choice, knowing that was the door to his death.
That's such a tough conversation. My cousin and my uncle had that same conversation when my uncle really wanted to stop trying as well.
Germaine, the kind of questions you were asked definitely clarify for me that it's not so much basic information but severity that's in question. I heard back from the oncology NP today who understood the issue and want to probe a bit more. My mother's feeling pretty good today, actually, and made it to some of her usual activities, so that's good.
They do take her bloodwork weekly, and that's helpful, but their main concern is whether she's eating and whether she will be truthful about that. That's what the NP said.
They're also going to have the palliative care team talk to her, which is excellent.
Every patient needs an advocate in the room anytime patient is with practitioner to make sure BOTH the patient AND the practitioner understand and know what's going on!
OP is there a nursing team connected to this oncologist?
My experience with my father having cancer was that the oncologist prescribed the chemo/radiation regime and the nursing team was most involved in managing side effects. I'm sure they sometimes did that in consultation with the DR, but sometimes probably they were managing it themselves or with a PA.
Basically, they told us no side effect was too small to bother them with and we should let them know of any and all side effects because many if not all of them had remedies.
OP is there a nursing team connected to this oncologist?
My experience with my father having cancer was that the oncologist prescribed the chemo/radiation regime and the nursing team was most involved in managing side effects. I'm sure they sometimes did that in consultation with the DR, but sometimes probably they were managing it themselves or with a PA.
Basically, they told us no side effect was too small to bother them with and we should let them know of any and all side effects because many if not all of them had remedies.
Thanks, yes there is and they say that to her as well but she doesn't ever report them other than feeling tired. And then the nursing staff isn't in the room at all when the oncologist comes in to talk to my mother. Grr.
OP is there a nursing team connected to this oncologist?
My experience with my father having cancer was that the oncologist prescribed the chemo/radiation regime and the nursing team was most involved in managing side effects. I'm sure they sometimes did that in consultation with the DR, but sometimes probably they were managing it themselves or with a PA.
Basically, they told us no side effect was too small to bother them with and we should let them know of any and all side effects because many if not all of them had remedies.
The nurses at my oncologist started with general questions. "How are you feeling?", "What is your current pain level?", "Where does it hurt?"
Then they asked me a long list of specific questions. In this past week, did you have a headache?, did you have any vision problems?, were you constipated?, did you have diarrhea?, did you have any bladder issues?, did you have any muscle pain?, how much water did you drink each day?, did you have nausea?, how did you sleep?
There is no way that I could have just answered "I was a little bit tired" without them probing for many details.
BTW, the nursing staff was not in the room when I saw the oncologist either but he relied on their very, very detailed notes.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
