Ugg

Rich66 · 12-01-2009, 12:01 AM

Feeling way stressed and down. Seems like the more I learn and ask questions, the more I get ignored. I try to ask rational questions of docs and researchers but there is always some point where I get shut out. Simply no response.
I feel like much of the information is important but there is no coordination of it. Lots of dots, little connection. Meanwhile all just plod on doing their daily job.
Sorry. It's all a bit much.

Jackie07 · 12-01-2009, 12:17 AM

Rich,

I am sorry you are feeling so down. Glad you shared with us. It helps to just get it out of your system...

My husband was 'hushed' by my oncologist one time right in front of me. Our doctors simply do not like to be 'challenged' or 'interrupted'. The time/effort/energy they have devoted to their profession makes them believe that they have earned their right to be the authority they think they are.

Ever heard of the book (a Chinese classic that's been translated into many languages - used by generals, politicians, coaches...) The Art of War?

I think many of the principles listed in it can be applied to our 'communication' problems with our health care providers.

How's 'Mom' doing today?

SoCalGal · 12-01-2009, 12:17 AM

Hi Rich,
You certainly work hard and long to ask the questions and also do the research. Is your mom not feeling well or are you just sick of walking in quicksand while trying to get life-saving information?

Hopefully your mom is feeling ok. If so, perhaps you need a cancervation. We all take some time off from cancer world. Even a few days can make a difference.

BTW - thanks for all your support - I'm sure I'm one of many who read your posts with interest. Take good care, Flori

Lien · 12-01-2009, 02:58 AM

Hi Rich, I know that feeling all too well. There are few doctors who know everything, or are prepared to acknowledge that they don't. I had a similar struggle when my son had a rare disease that's even rarer in young boys, that could have caused him to lose his leg. All worked out well, because I finally found the right doc and the right treatment. But it took me almost a year and it was scary as H**l!

I'm lucky with my cancer doc. He encourages me to do research. He even gave me his password for some good sites, so I could read for myself. And he takes the time to explain his point of view regarding the research. Docs like him are few and far between.

In the end, it's all about fear. Fear of losing a loved one, fear of losing a patient, fear of failing a loved one or a patient. Unfortunately, we don't have control over this disease and that's hard to handle for some docs. And for some patients and loved ones. I know I have trouble dealing with that. Perhaps one day we will know how to fix cancer. Wouldn't that be great? In the mean time, we do the best we can with the knowledge and resources we have. You are definitely doing the best you can. That could be a threat to some docs. Because they feel they are not.

Hugs

Jacqueline

Ellie F · 12-01-2009, 03:54 AM

Hi Rich
So sorry you are feeling down. I totally understand where you're coming from. My first onc had the 'GOD' complex and treated me like an idiot when I asked questions as if I wasn't bright enough to understand the answers.More by chance than design I now have an onc who listens and says it's refreshing to have a patient who asks intelligent questions. What a difference it makes!
You are a very valued member o f the board. Please do not be disheartened.I find it very hard that we don't have answers to this cancer question when science can do so many other things.

As Lien says one day we will have the answer-it could even be tomorrow!

Ellie

tricia keegan · 12-01-2009, 07:36 AM

Hi Rich,

I'm sorry too you're feeling down and frustrated. My surgeon had a God complex and even refused to give me complete details of my dx!!!! I did'nt see him after that and received my path etc from my onc who appreciates her patients working as a team with her.
I also along with many other's appreciate the time you take to research and post here and really hope tomorrow is a better day for you

schoolteacher · 12-01-2009, 07:59 AM

Rich,

I am sorry to hear you are feeling down. I really do appreciate all the research you do and post on this site. I always look forward to reading your articles. Hope you have a better day.

Amelia

Mary Anne in TX · 12-01-2009, 09:15 AM

Rich, I can imagine how frustrated you would be. I would be too. Maybe there is someone around the office who gets the point of stringing things together...a nurse, office manager, someone. It'd be worth a shot.
I have the opposite situation and it's what has kept me sane...well, more sane! I know that I am a really lucky duck!
Wishing you well and good luck on finding those answers. ma

Midwest Alice · 12-01-2009, 05:53 PM

Don't feel down for long Rich. I am learning so much from your post. We can't give up and you, my friend, I can see are not a quiter. Keep planting the seeds of ideas and questions.Answers and change will come.

Thank you for all you do, Alice

Joan M · 12-01-2009, 06:40 PM

Rich,

It's really a bummer sometimes trying to get information, which can produce stress and lead to worrying about not knowing. I think many patients and their families don't ask a lot of questions and therefore doctors aren't used to those who do.

Also, you've been your mom's pilot in this and have taken on a lot of responsibility for her well being. You're a good son.

Joan

mcgle · 12-02-2009, 03:18 AM

Rich

Being ignored is so damned rude! How dare they do that to an intelligent, rational human being who is only trying to support his mother.

Shame on them!

Mcgle (UK)

Pam P · 12-02-2009, 05:14 AM

Rich - I am so thankful for your information, research and support and encouragement on this site. I'm sorry to hear you are hitting a wall with getting the info and responses an nd consideration you seek with the 'experts'. Instead of discouraging you, they'd be wise to welcome you to their networking resource think tanks.

WolverineFan · 12-02-2009, 01:58 PM

Hey Rich,

I am glad you turned to the board when feeilng down, and I truly hope you are feeling better. I believe you are doing right by your mom by asking so many questions of the doctor's. I am one of those people that like having lots of information, so I ask questions all the time. I couldn't agree more with Pam. The doctors don't have all the information and thus, they don't know everything, but the way I look at it, is they can learn from the patients and their caregivers as well, so continue to ask away!! Just as an example, I've questioned my onc about the fact that I break out in a rash after Herceptin because it is not listed on the sheet they gave me as a side effect. She stressed several times to me that Herceptin doesn't cause a rash. I came home, printed off responses from other women on this board that have experienced the same problem, and gave them to her. We are all in this together !!!

I hope you are feeling better and that your mom is doing okay.

suzan w · 12-02-2009, 06:58 PM

Hi Rich, hope you are feeling better today!! It is so frustrating dealing with the medical community sometimes. I usually go in with a list of questions and before I am halfway through my onc. is looking at her watch, etc. Once I confronted her on this and she said that I am NED and shouldn't worry so much. Easy for her to say!!! Hang in there!!! XO Suzan

Laurel · 12-06-2009, 07:29 PM

Well, Rich, no one likes a "know-it-all!" LOL! You make the docs feel stupid, and boy oh boy do they hate that! Hang in there and know that we appreciate your knowledge and research. I look forward to all your informative posts, even the ones that go over my head!

'lizbeth · 12-06-2009, 09:43 PM

Rich,

When I was healing from surgery complications I spent all mine time studying my Her2 breast cancer. I would walk in to my doctors office with all these facts and figures about the latest studies. Needless to say, my research was not well received with my former oncologist. If it was outside the standard of care it was not well received. Of course the doctor never explained to me what this "standard of care" was.

My current oncologist is much more understanding and was very supportive of me enrolling in the cancer vaccine trial.

Being heard and understood sure makes a big difference!

I love your research and that you keep us all posted. Perhaps the doctors don't listen, but we cancer survivors hear you loud & clear.

Chelee · 12-06-2009, 10:22 PM

Rich, I feel the exact same way you do on this subject. I think far too many of these onc's/doctors are threatened by our knowledge. Sometimes I feel like they think we are challeging them when we aren't. (Also possible they are threatened that you know far too much, which means if they drop the ball with your Mother...you will be aware of it.) That could be dangerous for them. The patients these doctors seem to like the best are the ones that just listen & do what they are told. There are far too many patients like this...it blows my mind!

When I would go in for chemo I was always shocked at how many of the other women knew so little about their cancer, & didn't want to know. I have had so many of them tell me its easier to just let the doctor deal with all that. They said they didn't want to know. (Say what!) I can't undertand that?! So when doctors run across those of us that do alot of research and ask questions...that means we will suck up too much of their time...and far to many of them want no part of that. (Not all doctors are like this thank goodness...but far too many are!) Quite frankly I'm fed up with my 3 to 6 minute appts! I'm serious...I time them. That should be illegal.

It todays world doctors are to see as many patients per day as possible. (And they can't do that if they stop to have an intelligent conversation with the patient or caregiver.) That would throw off their entire day...so we suffer for it. It's so much easier to just ignore you. (Personally this happens to me all the time and I'm fed up with it.) Only my primary doc of 30 yrs finds time for me.

I've even read in my onc's notes that the patient brought in a list of questions AGAIN. Or patient on internet again. (SO WHAT!!!) She NEVER answers anything I ask...so what's the difference.
(Side note...even though they want to ignore you...I am so glad you stick around on this board. I read just about everything you post...you are a very vauable member here and I so hope you don't disappear any time soon.) I think many of us depend on you.

Chelee

Ellie F · 12-07-2009, 09:58 AM

Hi
I'll second what Chelee has said. I sit in the breast clinic and get along with the other women there well. The big EXCEPT is when we chat about the disease. They either change the subject or make some remark about trusting the doctor.This lack of asking questions rubs off onto the medical staff who think if you challenge them then you're being critical rather than just trying to SURVIVE. I find this so hard and if I didn't come to the board to talk to others would go mad!
As the saying goes 'Denial is not just a river in Egypt'
Ellie

Rich66 · 12-07-2009, 08:20 PM

Thanks folks. I think Flori nailed it with the quicksand analogy. The communication is worse now. Staff not following up on some issues for a week. In limbo. Wondering if the cord was cut and we weren't notified.