The Weird Things People say.....

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clarabelle64
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Re: The Weird Things People say.....

Postby clarabelle64 » Mon Jun 07, 2010 2:33 pm

When Debs went to a family gathering a few months ago she met her cousin-in-law Lance...when she greeted him with a "Hi how are you?" His reply was "better than you" having just been told Debbie's recent diagnosis! What a thoughtless thing to say to a person with this rotten disease....some people are just plain ignorant idiots!
Clarabelle
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

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eitter
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Re: The Weird Things People say.....

Postby eitter » Mon Jun 07, 2010 5:55 pm

I had some good Bald Comments when I lost all my hair during Chemo, I have told these stories before and they are on my website, but they are cute and worth repeating:

First off I did not wear a wig or scarf and still worked....and as some of you know I am an IRS Agent. So I had this high powered meeting to argue a tax adjsutment and I was sitting at a table with several other CPA's and Lawyers and they saw the case my way, YEA! But after the negotiating one of the Attorney's turned to me and said " So are you going for the Sinead O'Connor look or are you in treatment?" and then when he found out I was in treatment he wished me well.

Second I was out to lunch with a group from work, still bald. And this homeless man came up to me and grabbed my hand and said "Come On, hurry, I will help you find your hair, I am sure it is around here somewhere!" LOL I just laughed...should have took him up on the offer and found it!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

dianne052506
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Location: North Carolina

Re: The Weird Things People say.....

Postby dianne052506 » Mon Jun 07, 2010 6:57 pm

I live in a medium-small town that is part of a 1 million+ metropolitan area. For 11 years, I worked as management at the largest employer in the area (a manufacturing concern that finally fell victim to imports about 10 years ago). Now the hospital system is the largest employer in town, and I swear that every employee I ever fired now works there. Don't know what happened to all the hard-working people that I loved.

Example:
4 years ago, after my port-a-cath was inserted, I was having a great deal of pain and discomfort, enough that neither oxycodone nor muscle relaxers helped. My primary doc ordered an ultrasound to see what was going on. I'm only about 10 days out of colon surgery, so I'm really having trouble moving around, and when the perky little technician comes to the door of the waiting room to get me, while I'm still crossing the room, she asks what I'm there for. I tell her about the pain around my new port.
Little Miss Perky Why do you have a Port-a-Cath?
Me: For chemotherapy.
LMP: Oh? You have cancer? What kind? (IN the same tone of voice as "Golly, gee whiz, you bought a new car! What kind?"
Me: (hoping for either sympathy or just relief from LMP) Stage IV colon cancer.
LMP: Oh, my aunt has breast cancer. (and your point is??)

Then LPM proceeded to use that ultrasound wand like someone rolling out dough with a rolling pin. I cried through the whole thing. Afterwards, when we were sitting in the main waiting room again, she came to the door and called out, "Mrs. Ericson, your ultrasound looks fine. You can go now." And this was after HIPPA.

Where do they get these people? Oh, sorry, I know that. They took everyone I every fired, and probably their kids, and sisters, and cousins, which in this community, might all be one and the same!

My husband, who normally can't stand a scene of any kind, said I should have told her I was into street drugs and was tired of trying to find good veins in my arms. This is the same hospital where the registration person argued with me and told me I didn't have a middle name because I use my maiden name as my middle name. (Didn't seem to matter to her that my SS card and driver's license showed first name, maiden name, last name.) She actually entered me in the system as having no middle name or initial!

Now, I drive into the metro area and go to a hospital branch there. Unless I'm just clinging to life, so will any ambulance driver.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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John603
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Location: New Hampshire

Re: The Weird Things People say.....

Postby John603 » Mon Jun 07, 2010 7:11 pm

A couple of months back I'd lost about 20 pounds after restarting Folfox. One of my coworkers (who knows I have CC) passed me in the hall and said, "I'm going to have to go on your diet (while patting his stomach)." I think within 1 second of saying it he realized that what came out of his mouth isn't what he really wanted to say so he scurried on quickly. I have had several of these incidents over the last 3+ years and I always try and make the speaker feel better because the last thing I want is for people to treat me differently now that I have cancer.
John

Dx Stage IIIC (14 of 36 LNs +) Jan 07, age 42
Colectomy Jan 07
Folfox + Erb'x Mar 07
Recurrence in Lymph Nodes Feb 08
Folfiri + Avastin Apr 08
NED Dec 08
Recurrence in lungs & pelvic LNs May 09
Folfiri/Avastin May 09 - Nov 09
Erb'x/Irino Dec 09

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wwroam
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Re: The Weird Things People say.....

Postby wwroam » Mon Jun 07, 2010 8:47 pm

I guess it's all in the telling and the context.
Yesterday wasn't a good day for medical news around here. The wife of an employee in the office suites adjoining mine had a lung transplant ( she had cystic fibrosis) yesterday. The opportunities for saying the wrong thing were self evident. One of my clients phoned later to tell me he'd joined my club. He sounded too cheery for the club to be coloncancer. It was the skin cancer club. He had an insitu melanoma removed, not a club that I'm yet qualified for. he gave me this additional information before I could ask what club that would be.
It's just so easy to be flippant and give the wrong uncaring impression.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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jmarie
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Re: The Weird Things People say.....

Postby jmarie » Mon Jun 07, 2010 10:36 pm

Terry wrote:Oh boy, I'm so proud to be a nurse right now.....NOT!!!!



That is why I second guessed telling that story. I have 2 nurse horror stories, and probably 100 amazing nurse stories. My Mom is a nurse, and is my personal nurse :P She is pretty awesome if I say so myself. I still talk to some of my nurses I had when I was in the hospital. They are one of the main reason both me and Lilliana made it through those first 6 weeks after my dx, 18 mos ago. Holy crap 18 mos!!! I just realized I was at 18 mos post dx :P

Anyways I got a little distracted. Most nurses are amazing, as I am sure you are also Terry. I can tell by how caring and thoughtful you are. To redeem the nurses I can start another thread awith my Awesome Nurse/doctor stories :wink: I am sure we all have some good stories, its the 1% that ruin it for the rest.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

NWgirl
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Re: The Weird Things People say.....

Postby NWgirl » Mon Jun 07, 2010 10:49 pm

I hesitate to share this one - but oh what the heck, here goes. From "the other side" of the coin. When I was in my 20's and starting to work my way up the corporate ladder, I found it amazingly offensive to me - for adults to ask me "what does your father do?". Um - who cares? So I finally got annoyed and told them "not much - he's dead" (which was true). I only said this to people I found extremely annoying (and there were a few). It certainly took care of that annoying question. Okay - go ahead and flame me - lol!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

NWgirl
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Re: The Weird Things People say.....

Postby NWgirl » Mon Jun 07, 2010 10:57 pm

Okay - just one more. After my first surgery - I went home after a 9 day hospital stay; back in less than 24 hours as I couldn't stop vomiting. Admitted through ER - in a small, uncomfortable room, vomiting in a bed pan - the nurse looked straight at me (while I am still barfing and border line choking on it) and asked me for my insurance information so she could finish completing her paperwork. I just desperately looked at my husband to fill in while I continued the barf fest.

On a brighter note, once I was readmitted, I was back in the exact same room I'd left 24 hours earlier and the nurses were WONDERFUL - all of them.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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azahar
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Re: The Weird Things People say.....

Postby azahar » Tue Jun 08, 2010 4:46 am

"The vein whisperer" - priceless! :)

My veins are also almost impossible to find, but my most "wtf?" moment was when one nurse asked ME (after poking around the area for awhile) ... "Is that a vein or a tendon?" :shock: I would have got up and left right then and there if she hadn't gone to ask someone else for help.

One of the stupidest things ever said to me was by my onc a couple of weeks ago. As she is going to be on holidays in June she suggested I wait until mid-July to get my next PET scan. When I told her that waiting an extra month would be very difficult, especially as I am trying to start a new business and would like to know if I'm going to have a chemo-free summer (first one in three years) ... she actually said, "Oh Shawn, you can't live your life that way".

Unbelievable.
DX stage IV May / 08
colon resection May/08
Oxi & Xeloda July/Aug/08
open & close Sept/08, peritoneal mets
liver resection Nov/08
6 rounds Oxi/Xeloda Apr-July/09
NED? so far so good...
http://azahar.wordpress.com/ & http://twitter.com/azahar

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Sinfulsot
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Re: The Weird Things People say.....

Postby Sinfulsot » Tue Jun 08, 2010 7:50 am

Right before my surgery, the big boss at my job wanted to know the details of the surgery would be.

Up until this point, him and his son were both surprised that i neither lost any hair (i'm already mostly bald as it is) nor did i really lose any weight. Which would prompt me to respond to their "how are you doing" with "still fat and hairy". They were also impressed with my attitude, that i worked throughout my treatment, that i was a trooper. It was well mannered and their hearts in the right place.

So, I'm giving details and i end with "and i'll be getting a colostomy". Prob'ly also including the adjective "permanent".

Boss: what a pain in the ass.
Me: Not anymore!

He missed it.

Personally, i like to zing back, or just be outrageous as i mock the cancer any way i can.

Person: I have some bad news.
Me: Worse than cancer?

Another line I like to throw out: Well, when you get cancer, then you can talk.
And now something so wonderful, you could get wonderful poisoning.

JennyB
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Location: St. Louis

Re: The Weird Things People say.....

Postby JennyB » Tue Jun 08, 2010 11:01 am

tytiff wrote:I don't know if this qualifies but it made me think, how can you say that? As we were sitting waiting for the dr to come out and tell us how the surgery went, Tyler's Mom and Aunt were talking about how hard it is to get old and how your body hurts. I didn't say anything but in my head I was thinking, it beats dying at 42 of cancer! I know what they were meaning, and they meant no harm, I think I am just sensitive to the fact that Ty is so young and I would give anything to be 70 with him on our porch. :cry:

I get so annoyed with people who do that. One of my mother in law's best friends was going on and on about how awful it was that she was turning 70. Right in front of Scott, right after his diagnosis. I had to bite my tongue from saying, "I would give ANYTHING to know for sure that Scott will make it to 70." The only reason I didn't say it is because I didn't want to upset Scott.

A woman in my playgroup (I have a 1-year-old) has a husband with Crohns. Now, I wouldn't wish that on anyone, and I'm sure it's awful, but she said to me, "your husband is so lucky his was colitis, because it's just confined to the colon." I said, "yeah, he sure was lucky to get stage III cancer." She felt like an ass (no pun intended).

Scott gets a lot of, "Oh, wow, you don't look like you have cancer!" That's always a good one. I also love the people who tell me about all of their relatives who have died of colon cancer, but not to worry, because theirs was very advanced, stage II. Um. :x
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

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jmarie
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Re: The Weird Things People say.....

Postby jmarie » Tue Jun 08, 2010 4:41 pm

I always had people tell me how skinny I was. It never really bothered me too much except one guy who kept calling me anorexic, he didn't know about the cancer so I let it go. A couple months ago I was at a company party with my hubby, we worked for the same employer until I was dx'd, So I know most of the people there. There is another lady who was dx'd w/ stage IV lung cancer about 9 mos after me. We are pretty good friends and were sitting at the same table. We had both decided to try not to talk about cancer, to try to get our minds off of it for a night. An obnoxious lady at the table who knew we both had stage IV Cancer asks "Why did I get put between the skinny bitches?" I respond "I don't think you want to try a chemo diet, not too much fun" we all tried to laugh it off. Later on, she asks "How come both of you are on chemo and have better hair than me?" The other w/ cancer was wearing a wig and I was wearing a clip-on hair piece for bangs because thats the only part that is noticable that I lost. I had to leave the table before I said something mean. My hubby still has to work with her or I probably would have told her she needed to quit being pissy over her weight and hair and be greatful to be alive and healthy.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

Staci's team
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Re: The Weird Things People say.....

Postby Staci's team » Tue Jun 08, 2010 8:29 pm

NWgirl wrote:On a brighter note, once I was readmitted, I was back in the exact same room I'd left 24 hours earlier and the nurses were WONDERFUL - all of them.


Belle, almost the exact same story here! I brought Staci home on Thanksgiving afternoon after her APR surgery the prior Friday....then we were back in the ER by noon on Saturday with her vomiting like crazy due to an obstruction. If she hadn't had an NG tube in she would have gotten out of bed and throttled the intake person who kept giving us a hard time because we didn't have her insurance card. Didn't matter that I brought all her discharge papers with us and could recite her patient number from memory. After an hour of this garbage, I asked the intake person if she wanted me to call the surgeon (at home, on a holiday weekend) and showed her where I had his home and cell phone numbers in my cell phone. She backed off after that, but still had the gall to tell me as they were wheeling Staci back to the room she'd left less than 36 hours earlier that she "really needed that insurance card information." Not in a very happy mood, I told her to get a copy of it from the patient file as I had more pressing issues to worry about.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

SaveMyArchie
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Joined: Tue Jan 19, 2010 10:14 pm

Re: The Weird Things People say.....

Postby SaveMyArchie » Tue Jun 08, 2010 8:45 pm

NWgirl wrote:So I finally got annoyed and told them "not much - he's dead" (which was true). I only said this to people I found extremely annoying (and there were a few).


starbuck30 wrote:Wonder if it'd change her perspective if I smacked her with my IV pole.


^ I don't think I've laughed this hard all month!

Let's see... the crown jewel of my experience was when my friend told me "YOU NEED TO LET HER GO" in the tone of "you're grounded!" one day after the diagnosis. Or when I shaved my head during colon cancer awareness week in March and had my academic advisor comment that I was taking things "way too seriou..." -- she cut herself off soon enough. Bronze medal goes to that same friend -- she called me masochistic (twice!) for wanting to be at chemo sessions. My internal reaction was "let's chop off your mother's left breast or slice out her colon and then get her started on some 5FU while you sit at home being all scared and upset since it's clearly all about you you you, even when it's not your mother who's going through chemo." :evil:
51 @ dx (I'm her son - call me Steve)

8/12: referred for hospice
7/12: significant progression
4/12: Vectibix
11/10: recurrence; XELIRI+Avastin 'forever'
7/10: NED; lingering CIPN
1/10: FOLFOX
12/09 - removed 19cm sigmoid colon/prox rectum; 5/13 nodes

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GreenLakeGirl
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Re: The Weird Things People say.....

Postby GreenLakeGirl » Wed Jun 09, 2010 1:10 am

JennyB wrote:A woman in my playgroup (I have a 1-year-old) has a husband with Crohns. Now, I wouldn't wish that on anyone, and I'm sure it's awful, but she said to me, "your husband is so lucky his was colitis, because it's just confined to the colon." I said, "yeah, he sure was lucky to get stage III cancer." She felt like an ass (no pun intended).


For some reason, a lot of Crohnies say that to us UCers. I just reply, "I didn't know if was a competition." With a smile, of course. And sometimes followed by "bless your heart." :)

My favorite well-meaning, but poorly chosen comment was in regard to my then 2.5 year old daughter. While I was still digesting the knowledge of my diagnosis (and waiting for a staging), countless people told me how lucky I was that my daughter was young and "wouldn't remember this time." Not something I needed to hear while trying to digest colon cancer stats.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo


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