Comments on: How much do you want to know?

By: Janet

Janet — Mon, 19 Sep 2022 03:21:26 +0000

In reply to Norma Jean Galiher. I am copying and saving your comment, Norma Jean. These are helpful"case studies" that I can imagine sharing with others in the future if you don't mind. I definitely hope to have the clarity of thought to choose the second path for myself when the time comes. Thank you very much for this.

By: Ragged Clown

Ragged Clown — Sun, 18 Sep 2022 22:09:21 +0000

In reply to Norma Jean Galiher. Two powerful stories, Norma Jean. I choose option number two.

By: Norma Jean Galiher

Norma Jean Galiher — Sun, 18 Sep 2022 20:03:10 +0000

I’ve been in a Cx support group w/ all these types & the “just keep treating me even though there’s no chance anything is going to help at this stage” was just heartbreaking to watch play out in one wonderful, vivacious, courageous woman we all had come to love. She would tell us what great pain she was in and how she longed to do all the activities she no longer could, but then say that at her next aptmt. she was going to ask the doc “what are you going to prescribe next?” Over and over again, when it was clear she was very near the end and the doc had obviously started out w/ chemo- most likely to have been efficacious and, when that failed, on to regimen 2, 3 & 4, ea. w/ data making it far less likely to have miraculous results, so that suffering the side effects was for naught. This was a very bright woman, but with so strong a bias in this way that it was an enormous blind spot. One day she phoned me (the first time, asking me to tell her about hospice as the doctor she relied on totally had just “deserted her” and told her to sign up w/ hospice). She frantically called, interviewing several and, apparently, signing up with one, but doing so while experiencing off-the-chart stress levels. Within 4 days died horribly, terrified and hysterical, with strangers coming into her home, giving her no peace whatever. We grieved deeply upon hearing the news, not just that she “was too young” and we’d all come to care so deeply, but that it could have been otherwise.

A 2nd woman in that same Cx support group told us she’d extracted a promise from her doc that when the time came that there was no Tx left that would offer hope of giving her more time of any sort of quality, she would tell her and they would stop so that the time she had left would not be impaired by side effects of useless chemo-. She gave away almost everything, moved into a tiny cottage, got a little trailer and pulled it to several states to visit former internat’l and domestic high elevation mountaineering companions, spent lots of time w/ family & friends (apparently her cottage was full of them), in comfort. Then, when she tired, moved into her daughter’s living rm. where she had the grandchildren around her all the time up until her very quiet, peaceful journey’s end.

I have never forgotten the impact of observing the outcome of the attitude selected by these two unforgettable and admirable women.

By: Janet

Janet — Thu, 25 Aug 2022 17:28:20 +0000

Great post, thank you. It takes all kinds and finding some friends with different but complementary approaches to being The Patient must be satisfying and helpful. Three of the four types you describe were represented in my small family group during my mother’s cancer experience, and I think your general descriptions are accurate. More specifically, the oncologist/surgeon called my dad Data Guy for his focus on record keeping and making sure the doc had ALL the info about my mother’s symptoms (relevant or not ;-), I was the daughter who asked precise questions that the doc didn’t remember anyone asking before in her 12 yrs of practice (thank you, Smart Patients!), my mother just wanted someone to make it all go away, whatever it took, however painful or uncomfortable. Knowing what Qs to ask is critical imo for best attention from the docs. Maybe I learned this approach from my experiences as a parent, learning how to get the most value out of the appointments with the pediatrician? Being assertive and asking precise questions paid off generally.

By: Claire ATX

Claire ATX — Thu, 25 Aug 2022 14:38:17 +0000

Pearl is so wonderful! I think she knows her input is vital.

Great article! Well organized. Clearly presented.

Glad to know you have an informed community. Well done!

By: Graham

Graham — Thu, 25 Aug 2022 14:18:32 +0000

I share your attitude towards knowledge as a Number 2. Without doing my own research I wouldn’t have even been diagnosed by the NHS as my condition was hardly known and wasn’t even being looked for. Using the Internet wisely is important and if some cure looks too good to be true it probably isn’t any good. Using the results of an initial search to refine and go deeper can often bring rewards including exposing the fake solutions.
Ignoring statistics is a challenge – so good to think of oneself as an atypical outlier that will spoil the neat statistics for the future. No harm in imagining “Flying Pigs”
Best wishes