Topic: 10 Things Not To Say ...

Several members have mentioned the distress caused by people saying, "Just let me know if there's anything I can do", rather than the person just doing something ... ANYTHING ... rather than talking about it.

I saw this article in The Guardian newspaper today and it seemed to understand completely.

I thought it may interest and, hopefully, even amuse. … ?fb=native

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: 10 Things Not To Say ...

Julia, thank you for sharing this article.

A friend of ours emailed my wife today. He started the email with... "I hope you are well". Ouch. Not the best thing to say to a CC patient in the middle of the sixth chemo cycle.

Our neighbour next door is the best. She knows our chemo schedule. She brings us a hot, home-cooked meal after each chemo session. She doesn't ask if there's anything she can do for us. She just does it!!!

Re: 10 Things Not To Say ...

Hi Julia,

I loved the article. I don't think people ever really mean to say the wrong thing. I'm sure I said the wrong thing to people before, not knowing. I really don't like when people say, Call me if you need anything. I would never dream of imposing on anyone.  Now Eli's neighbor knows what she's doing!! Take care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: 10 Things Not To Say ...

I loved that article.  There are so many things that people say and do without thinking.  But I agree with Pam that people are generally just trying to say the right thing, they just don't know how.

Some of the things people have said are:
   -- What did you do that gave you cancer? (they say it in a lot of different ways, but it means the same thing)
   -- Thank God I don't have any cancer in my family!
   -- My <uncle, mother, dad, friend, friend of a friend> had cancer and she suffered badly and then died.
But I try and roll with it and laugh (afterward of course!)


Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: 10 Things Not To Say ...

I lost my darling husband of 40 years Eugene to cc last year he was only 61. He lasted 1 year 4 months from his diagnosis,  which came on so suddenly. My two sons and I have been through the treatment, testing and hospital  stays with him. We have good days and bad days. Responding to your discussion about things not to say or do, we appreciated when someone just does something for you and your family without asking, whether it be cooking, visitiing, pet sitting, cutting the lawn, etc., it is always received well. I dont know what I would do without my friends. I also found this site extremely helpful. Although I never participated in these topic I read everthing you all had to offer and it got me throught some rough test results. I could not discuss the disease easliy with my husband, he wasnt a talker so I was alone in my sadness a lot and reading this site helped a lot. Thank you and keep up  the support for those of us who suffer quietly.  Peace

Re: 10 Things Not To Say ...

Dear MMEAD, I agree, taking this journey is tough enough but it REALLY helps to be able to talk. Teddy and I talked continuely and as you see I am still rattling on to anyone who will listen. I think posting here and talking is very cathartic and helps a lot. Time heals but in the meantime talking is good.
I love this poem and I hope you do as well:

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 10 Things Not To Say ...

Thank you for that. This is what I mean, this site and you who moderate are there for us.

Re: 10 Things Not To Say ...

mmead....this is what Stacie had in mind when first she contemplated a discussion forum, and with much help from others it was accomplished.
Please know that you also have become an important resource to others, as what you are sharing with us and the global patient community is an important part of the focus of this foundation.
Hugs to you,