Things Not to Say and the Responses I want to Make (Rant)

Please feel free to read, share your thoughts, your stories and connect with others!
DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby DanInMN » Fri Jun 16, 2017 10:29 am

I was just talking to a friend, and the subject of how rough chemo can be came up. He went on and on, almost longingly, about how many people come to the realization that getting a few extra months of miserable life through chemo is so much worse than just going and being happy until the end.

I just kept saying "I hope it doesn't come to that", but I don't think dawned on him that everyone with cancer dreads being faced with deciding when to stop treatment. Nor did he seem to understand that dying from cancer is highly unlikely to be peaceful and pleasant, chemo or not. I'm pretty sure his entire point of reference was the death of a character on the TV show ER sitting on a beach.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Maggie Nell » Fri Jun 16, 2017 11:03 am

DanInMN wrote: I'm pretty sure his entire point of reference was the death of a character on the TV show ER sitting on a beach.


:lol: :lol: :lol:

https://www.youtube.com/watch?v=V1bFr2SWP1I

the good old days before reality medical TV shows, yeah?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby TXLiz » Fri Jun 16, 2017 1:00 pm

One of my chemo nurses related to me that her husband told her that if he ever got cancer, he'd never do chemo. He would go "all natural" and beat it that way.

I have had a touching experience with a pharmacist whose brother died of cancer, unbeknownst to me.

It was just a few days before Christmas 2016, and my nausea med wasn't cutting it. Onc gave me a written prescription for a new med. He had neglected to put the number of pills to be dispensed on the little paper, so in I go to get it filled with an incomplete prescription.

When I was called to the counter, I was greeted by a woman who had the personality of Oscar the Grouch. I was super nice to her, smiled, and we chatted about Christmas as she typed on her computer. I was extremely positive and happy (even though I felt horrid) and she became slightly less grumpy.

Then she said my onc left the number of pills to be given blank, and she grudgingly said she'd give me 30. (Probably highly illegal but at this point in my life I could care less.)


She said "I don't know why I am being nice!" Quite harshly, too. I told her it's Christmas, look for joy, etc etc etc. She got real tears in her eyes and said there was no more joy in life. I was taken aback big time, she had the face and eyes of a very wounded person in great pain. I leaned in and said my med was for chemo, I had been diagnosed with cc, and I was going to try to be happy until I couldn't.

Now Oscar the Grouch begins to cry! She gave me the saddest look and said her brother had just died of colon cancer. She said he had tried everything, and been a patient in the facility we were in at that moment and his symptoms had been ignored until it was too late.

I was floored and she leaned through the window and hugged me, gave me her name, and told me she'd help me in anyway possible. She still had tears in her eyes, but looked almost relieved when we said good bye.

Although I felt sad for her and her brother, our interaction was comforting in a way. She knew the true pain and struggle and loss cancer can bring into our lives.

But anyway, I don't discuss my treatment with my family outside spouse and a little to the kids. My aunt is a big FB poster about cancer, and how the FDA is hiding cures, natural alternatives, conspiracy, etc. I can imagine the advice she'd give and I don't have time or the brain space for it.

My deepest sympathies to those here who are subjected to it.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby zephyr » Fri Jun 16, 2017 6:12 pm

DanInMN wrote:Inorganic:

Your post is funny, true, and validates my feelings of rage about these same issues. :lol:


Ditto what DanInMN wrote! A few of your responses were better than the ones in my head ... I think I'm actually going to voice a few of yours!
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby inorganic8 » Fri Jun 16, 2017 6:36 pm

I definitely struck a chord here. Feel free to use any of these. Honestly, I was trying to blow off some steam and thought I was being funny. I'm glad some of you got a chuckle.

I've had plenty of folks say things to me that just make me want to roll my eyes, and tell them to join the Flat Earth Society, but it sounds like some of you have heard things that are downright cruel. I'm really sorry to hear that.Any more of that crap, and I will be happy to visit and verbally put said individual in their place. (Hint: it's over there, away from the cancer thriver. Pick up that dirty sock while you're at it and insert appropriately.)

Miss Molly, you are a font of wisdom, but I'm just too mouthy.

Now I don't want anyone to get me wrong. I love carrots. They are delicious. They go great in salads, stews, pot pies, and are also just great for munching. But there is no anti-cancer munching.

OK, one more.

Person: There is a place in Mexico that heals cancer.
Me: Um, ok. I bet they prevent it too. You should go. Right now. Bring your credit cards.
Person: Well, I...
Me: No, no. Don't wait. It's the only way to be sure. Have fun. I bet that worm in the tequila bottle really does the trick.

-Kim
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Lee » Fri Jun 16, 2017 10:43 pm

inorganic8 wrote:Now I don't want anyone to get me wrong. I love carrots. They are delicious. They go great in salads, stews, pot pies, and are also just great for munching. But there is no anti-cancer munching.

Person: There is a place in Mexico that heals cancer.
Me: Um, ok. I bet they prevent it too. You should go. Right now. Bring your credit cards.
Person: Well, I...
Me: No, no. Don't wait. It's the only way to be sure. Have fun. I bet that worm in the tequila bottle really does the trick.

-Kim


OK above joke is funny. true butt funny :D .

When I was in college, there was a guy who likes to juice his carrots A LOT! His skin actually turned orange. Not slight, butt orange. I learned from him there is such a thing as "too much of a good thing".
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

BIG ROB 69
Posts: 63
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby BIG ROB 69 » Fri Jun 16, 2017 10:50 pm

Came up with this one today:

Dude: Heard "X" will cure cancer.
Me: Yeah, how much? What's the dosage? What kind? How many times a week? The green or the yellow one? Do I eat it or shove it up my ass?

They got the point.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby ozziej » Sun Jun 18, 2017 5:11 am

BIG ROB 69 wrote:Came up with this one today:

Dude: Heard "X" will cure cancer.
Me: Yeah, how much? What's the dosage? What kind? How many times a week? The green or the yellow one? Do I eat it or shove it up my ass?

They got the point.

Hahaha...oh Rob, that is precious...Can't wait to use the last sentence in my next retort to unsolicited advice. Bowel cancer may take a lot away from us but only we can let go of our sense of humor. You have made my day...
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Aqx99 » Sun Jun 18, 2017 5:26 am

Not too long ago, my brother-in-law emailed me to tell me I was silly to do the radiation and chemo. All I needed was baking soda and lemon juice, that would cure me. I did not write him back, but my coworker and I did have a fun day joking about heading out for a glass of lemonade with some baking soda mixed in, etc. He helped me stay grounded when I could have been very upset.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Maggie Nell » Sun Jun 18, 2017 6:05 am

inorganic8 wrote:OK, one more.

Person: There is a place in Mexico that heals cancer.
Me: Um, ok. I bet they prevent it too. You should go. Right now. Bring your credit cards.
Person: Well, I...
Me: No, no. Don't wait. It's the only way to be sure. Have fun. I bet that worm in the tequila bottle really does the trick.
-Kim


SSSSSSShhhhhhhh....now everyone will want one! :roll:
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Lee » Sun Jun 18, 2017 5:33 pm

BIG ROB 69 wrote:Came up with this one today:

Dude: Heard "X" will cure cancer.
Me: Yeah, how much? What's the dosage? What kind? How many times a week? The green or the yellow one? Do I eat it or shove it up my ass?

They got the point.


HaHa :D That is a good one Rob especially that last line :shock: . I agree, could come in handy some day.

This thread is great and as made me laugh more than once.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Andi
Posts: 3
Joined: Thu Jun 15, 2017 9:14 pm
Facebook Username: Andrea.Dow

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Andi » Wed Jun 21, 2017 6:12 pm

I can relate to your statements!

When faced with my own medical crisis back in November, I was scared and turned to my family. My sister's answer was, " I knew people who lived with a bag in college and they did just fine." Who the heck says that to someone, let alone your own sibling? Ugh!

As mentioned above, I have a few close friends that I confide in and they are my true support system. Hopefully, you have family or close friends that are there for you. I wish you the best.

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby justin case » Wed Jun 21, 2017 8:58 pm

I have a very good friend going through, chemo just once a month, but is hospitalized while he gets heavy chemo, spinal injections and who knows what else for a week of every month. He has lymphoma. He also has a 16 year old daughter, so ask him if getting poisoned, should be exchanged for carrots. :roll: :roll: :roll:
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby inorganic8 » Thu Jun 22, 2017 7:41 am

This is a conspiracy of the carrot industry. BigCarrot wants us to be dependent on their product to turn orange. They don't want you to know the truth. You can turn orange from just a spray tan. I've been on the run from BigCarrot for a long time. I know their thugs will eventually find and silence me. But until they do, I'm going to spread the truth.

BIGCARROT IS A LIE. EAT CELERY... and ice cream.

recruiter
Posts: 82
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby recruiter » Thu Jun 22, 2017 9:31 am

Andi wrote:I can relate to your statements!

When faced with my own medical crisis back in November, I was scared and turned to my family. My sister's answer was, " I knew people who lived with a bag in college and they did just fine." Who the heck says that to someone, let alone your own sibling? Ugh!

As mentioned above, I have a few close friends that I confide in and they are my true support system. Hopefully, you have family or close friends that are there for you. I wish you the best.


I turn to friends who are more like family than my own family. The bloods are, to put it bluntly, useless a-holes. I lost my mom and was diagnosed all within six weeks last year, and their sage advice was, "Get over it. You bring us down."

So, I chose to get over them and turn to people who truly care.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 106 guests