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September 28, 2017

Comments

Sabine

Well done Hattie. And gorgeous orchids!

Maybe he is just scared. I have come to believe that men deal quite differently (compared to women) with such drastic changes and challenges to their own bodies.
I used to be really arrogant/ignorant when I was first diagnosed and almost laughed at the drugs I was told to take. No way, I smiled. Only briefly, though.

Florence

, I worked for many years in a hospital pharmacy. Chemo was not my area of specialization but I saw many, many patients live, not exactly the same lives that they had before, but years of good life to see grandchildren and be with people they loved. I do think that a person has the right to choose their treatment and how far to go with that treatment. It is a shame though to allow friends or the internet keep one from looking into and evaluating treatment with their doctor. I'm glad you chose treatment.

Beth

Hattie, what you are is sensible and clear-headed. Not everyone is! I think you did a very good deed today. You probably persuaded him where his doctor had failed. Different people respond to different arguments. Good for you.

nick

I would have thought if chemotherapy meant there was a chance of living a bit longer and being with family and friends for longer, then you'd jump at the chance. But I guess if the cancer was so far advanced that I only had a few weeks or months, I might say no. But it's easy to be turned against something by alarmist articles on the internet.

Wisewebwoman

I was like your friend but am paying far more attention to such matters via your kind self and others.

I've had to work on changing my stubborn nature and revising my entrenched beliefs.

Thank you.

XO
WWW

Cop Car

I'm really happy that your chemo is meeting your expectations and letting you live longer, doing what you like doing. I do not agree that anyone other than the patient should make the decision. I think (who really knows until faced with it?) that I would wish for a physician who gave me an honest evaluation of what I could expect chemo to produce. Four people in my extended family (each, in the family by marriage) have been faced with the decision: 3 said "no" while the 4th said "yes" to multiple surgeries & chemo. I supported each of those decisions - for all the good my support did any of them.

Keep doing your own thing, Hattie. If that means getting someone else to make your decisions: have at it! You are the one who counts!

Z

I don't know whether my mother should have done what she did re heart disease although it did keep her going an extra 10 years and would have done for longer if she hadn't gotten cancer (and not had it diagnosed until it was far too late). But she didn't enjoy those last 10 years, had been ready to go. It wasn't heroic measures, just a valve repair and then a pacemaker, things lots of people do and then go on with their lives. Nobody but us kids took her seriously when she said she didn't want it, because the normal thing would be to do it, they couldn't imagine not doing it.

Marianna

Sabine: Well, it's hubris, but we learn soon enough that we just have to accept our limitations and go along with the program. This gets mistaken for resignation but is nothing of the sort. It's taking charge. If I feel that what I'm getting now is not sufficient, I will certainly be looking at other options.
Florence: That is good to know. I wish more people who turn down chemo had access to that kind of information.
Beth. Thanks. I really feel good about this and am wondering how I can make myself available to people to talk about my experiences. My chemo nurse might be able to help with that.
Nick: Still I think for most that is not a decision that is wise for patients to make. Too bad there is so little trust between health professionals and the public.
Wisewebwoman: I think it's because a major institution let you down and forced you to work things out on your own. I would have very little trust in authority, etc. myself, if I had that background.
Cop Car: It's the American belief in the sovereign individual that informs such decisions. This is not a universally held value.I don't completely believe in that, especially since we can all end up paying for the terrible outcomes that people who refuse treatment can experience.
I believe in informed decisions, which, as a non-cancer expert I am not equipped to make. And the extreme interpretation of individual rights can be a cover up for neglect, too, people not getting the care they need because they can't afford it, etc. Lots to say here but out of time!
Question: Do you know what the survival rates were with the people who refused chemo vs. the one who didn't? If I had had no cheomo I could look forward to maybe a year of misery. With no steroids and narcotics, I would have lasted weeks, maybe. I'm nine months out from diagnosis, in pretty good shape, and have more time to go, depending on how treatments work.
Z: Is it just because of the pacemaker that she was not enjoying her life?

Z

No, the pacemaker was a late addition. She wasn't happy in life and didn't want to make changes that might make her happier. She didn't want to repair her heart valve in 2002, she wanted to die then. (Had wanted to die before, too, as long as I can remember, but opting out of heart surgery would have been her firs real chance.)

Z

(*first, with a t. Sorry to be so macabre: I just don't know whether the state knows best.)

Marianna

Z: I am observing a pattern here. Patients resist procedures and suffer symptoms and eventually have to accept treatment which, since they have waited so long, are not as effective as they might otherwise be.
http://www.hopkinsmedicine.org/heart_vascular_institute/clinical_services/centers_excellence/womens_cardiovascular_health_center/patient_information/health_topics/depression_heart_disease.html
I wouldn't hesitate to get a pacemaker if a doc told me I needed it.

Cop Car

Hattie--Of the three who chose not to seek treatment were a father (early 80s - lasted about 1 year) & mother (late 80s lasted about 1 year) & daughter (late 70s - lasted 30 days). Except for the daughter, I don't know what they were told about prognoses concerning their cancers. The daughter had pancreatic cancer that had metastasized and had, at best, a few months.

As to the one who sought treatment: she was in her late 40s when her breast cancer was diagnosed. She had one and then the other breast removed, then lumpectomies in the chest. I don't know what she was told about her prognosis, along the way, but she had some of the experimental gene therapy along the way, except that they "watched" her cancer for months before recommending any treatment. Her ordeal lasted about 2 years from the time "they" recommended treatment.

Z reminded me of my great-grandmother's plight. When great-grandfather died, the physician came to the house. Great-grandmother died - BUT - the physician "brought her back" and she suffered (bed-fast) for another year. I always thought the doctor unfeeling. I am convinced that she had chosen to die the first time.

Hattie

Cop Car: Not very good outcomes. That is very sad. My prognosis is one year, maybe a few months more with chemo and palliative measures. That’s from January. I am not worried or afraid. I am doing far better than anyone expected.

Z

Well, my mother DID get treatment when told, and it worked perfectly. It didn't make her happy, though, because it made her live. If she had NOT followed instructions, she could have gotten a result more in line with her wishes.

Z

Cop Car: "...we can all end up paying for the terrible outcomes that people who refuse treatment can experience."

I don't know, but it is possible the reason the doctors insisted my mother get treatment was that without it she wouldn't die, but would just be so weak my father couldn't take care of her, and have to go into some sort of nursing home.

She used to say, though, that she wanted this. I don't know; she just didn't want the heart valve operation in 2002 or the pacemaker 10 years later, and was basically obligated, and was miserable. I believe in letting people make their own choices.

joared

I am a firm believer in individual choice, obviously based on consultation with knowledgeable medical professionals. Many factors enter into the choices a person makes beyond the actual physical condition itself. What might be appropriate for one person might not be for another with the same medical diagnosis. I think it might be unwise to have a preconceived unalterable opinión on “what I would do” if I didn’t have the condition because we can’t know everything about the situation until we actually are faced with it. A decision to make a choice counter to what medical professionals recommend would best be made only if the individual has thoroughly educated themselves on the issues, including the pros and cons. I believe this both personally and professionally as I encountered numerous situations requiring consulting on what was ultimately life and death associated with swallowing problems some of my patients had.

Marianna

This is a wonderful discussion, bringing in lots of experience and different points of view.

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