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

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JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Thu Jun 29, 2017 1:11 am

I feel ya.

I have one acquaintance on FB who is constantly sending me PM's of grain and nut diets that will cure me. Apparently I need to drink fruit smoothies with grain and crushed nuts and eat several cupfuls of raw almonds every day to cleanse my system of all cancer. I've politely told her that since my temp ileostomy reversal, I can't tolerate nuts and even one fruit smoothie would give me diarrhea for days, but she is ever vigilant in ignoring my reality and continuing to bombard me with advice. She must own stock in the almond companies because I barely know her. Or maybe she owns stock in the butt cream industry because sales would definitely go up if I followed her sage advice. I wonder if I can convince her to switch to Big Carrot for a while just to get her out of her rut? They must have room on their payroll for a go-getter like her!

My sister, whom I love dearly, asks me why I don't drive the four hours to visit as often as I used to. I try to tell her of my post-reversal digestive problems and she interrupts to say that she understands; why, on the occasional rough morning she poops two or three times before she can start her day and it's a nightmare for her schedule. I want to tell her that I have a schedule, too---get up, poop, have breakfast, poop, take a shower, poop, flush, wash hands and just when you thought it was safe to exit the bathroom-back in for another, you guessed it, poop. And on and on all day and sometimes all night, too. But since I would rather not be known throughout the family as She-Who-Must-Always-Poop, I just change the subject.

And when I tell her that my body hasn't rebounded from the chemo and most days I have trouble finding the energy to shower, she says, "I know, right. I babysat my granddaughter for two days last week and you don't know what tired is until you've tried to keep up with her!" I want to say, "Really? Babysitting for two days is more tiring than a bad reaction to chemotherapy? Let's trade places and find out??" Of course I don't say that and I wouldn't really wish this on her or anyone, but I have the most problems with people who don't listen after asking how I am. They hear the first five words and immediately try to top whatever problem I'm having or tell me how they understand because they had (insert relatively minor mildly annoying issue here). "Radiation? I completely understand. I had the worst sunburn a couple of years ago. Hurt for days." "Chemo? I can so relate. I had to take this antibiotic once that made me feel like puking every time I took one." "Loss of appetite? I should be so lucky. I got food poisoning on a trip to Jamaica and lost ten pounds. Best vacation ever! Put it right back on when I got back though." I want to punch them, but I actually just stand there, smile, and nod my head until I can escape.

If someone merely asks, "How are you?" with the predictable sad head tilt necessary while talking to a cancer sufferer, I just say "Hanging in there, thank you. How are you?" and leave it at that. But if they start asking more detailed questions about my recovery, all I want is for them to listen to the answer. Really listen the way I listen while they tell me about their life and issues. I'm not looking for advice, miracle cures, anecdotal tales of people they know who either died from rectal cancer or had a miraculous cure from eating beetle intestines, or for sympathy. I just want them to understand a little better why I have to say no when they invite me places or ask impossible favors from me. I'd like them to understand that it's not as simple as, "The cancer's out, your treatments are over, time to get back to your pre-cancer life! Let's go!" The cancer leaves issues, the surgeries leave issues, the treatments leave issues, and the mental stress leaves issues. Give me time and space to deal with those issues and if you don't want to really listen to the description of those issues, don't ask. Just smile when I say I'm hanging in there and leave it at that.

As for Big Carrot, I've had a lot of really, really rough nights perched atop my Squatty Potty since my reversal, but the absolute worst one, the one I will always remember, was after I decided to introduce a couple of raw carrots into my diet and see how it went. It felt like I swallowed a couple of live lobsters whole- shell, claws, the whole kitten caboodle- and they were trying to fight their way out. If eating carrots is the only way to prevent a recurrence, I'm doomed. I'm not hosting another lobster heavyweight bout in my intestines. I'd rather drink a fruit smoothie full of almonds. :mrgreen:

One last chapter to this novel-- The first question I asked my top-rated colorectal surgeon when he told me it was cancer was, "Could I have prevented this?" and he said, "No, there was nothing you could have done differently that would have kept this cancer from growing in your body." So any attempts by well-meaning individuals to blame me for getting this sucky, sucky disease go in one ear and out the other. I don't have time or patience for the blame game. I'd much rather work on getting healthy in the future than beat myself up over what I should or shouldn't have done in the past. But that's just me.

Judy-who will never be a victim of Big Carrot again!
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

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

Postby musicluvr » Thu Jun 29, 2017 5:19 pm

Thank you, Judy. I get so frustrated with those responses from people!!! Just shut up already!
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

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

Postby jhocno197 » Fri Jun 30, 2017 8:01 pm

Judy, you are fantastic!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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 Jul 05, 2017 4:16 pm

JudeD59 wrote:I feel ya.

I have one acquaintance on FB who is constantly sending me PM's of grain and nut diets that will cure me. Apparently I need to drink fruit smoothies with grain and crushed nuts and eat several cupfuls of raw almonds every day to cleanse my system of all cancer. I've politely told her that since my temp ileostomy reversal, I can't tolerate nuts and even one fruit smoothie would give me diarrhea for days, but she is ever vigilant in ignoring my reality and continuing to bombard me with advice. She must own stock in the almond companies because I barely know her. Or maybe she owns stock in the butt cream industry because sales would definitely go up if I followed her sage advice. I wonder if I can convince her to switch to Big Carrot for a while just to get her out of her rut? They must have room on their payroll for a go-getter like her!

My sister, whom I love dearly, asks me why I don't drive the four hours to visit as often as I used to. I try to tell her of my post-reversal digestive problems and she interrupts to say that she understands; why, on the occasional rough morning she poops two or three times before she can start her day and it's a nightmare for her schedule. I want to tell her that I have a schedule, too---get up, poop, have breakfast, poop, take a shower, poop, flush, wash hands and just when you thought it was safe to exit the bathroom-back in for another, you guessed it, poop. And on and on all day and sometimes all night, too. But since I would rather not be known throughout the family as She-Who-Must-Always-Poop, I just change the subject.

And when I tell her that my body hasn't rebounded from the chemo and most days I have trouble finding the energy to shower, she says, "I know, right. I babysat my granddaughter for two days last week and you don't know what tired is until you've tried to keep up with her!" I want to say, "Really? Babysitting for two days is more tiring than a bad reaction to chemotherapy? Let's trade places and find out??" Of course I don't say that and I wouldn't really wish this on her or anyone, but I have the most problems with people who don't listen after asking how I am. They hear the first five words and immediately try to top whatever problem I'm having or tell me how they understand because they had (insert relatively minor mildly annoying issue here). "Radiation? I completely understand. I had the worst sunburn a couple of years ago. Hurt for days." "Chemo? I can so relate. I had to take this antibiotic once that made me feel like puking every time I took one." "Loss of appetite? I should be so lucky. I got food poisoning on a trip to Jamaica and lost ten pounds. Best vacation ever! Put it right back on when I got back though." I want to punch them, but I actually just stand there, smile, and nod my head until I can escape.

If someone merely asks, "How are you?" with the predictable sad head tilt necessary while talking to a cancer sufferer, I just say "Hanging in there, thank you. How are you?" and leave it at that. But if they start asking more detailed questions about my recovery, all I want is for them to listen to the answer. Really listen the way I listen while they tell me about their life and issues. I'm not looking for advice, miracle cures, anecdotal tales of people they know who either died from rectal cancer or had a miraculous cure from eating beetle intestines, or for sympathy. I just want them to understand a little better why I have to say no when they invite me places or ask impossible favors from me. I'd like them to understand that it's not as simple as, "The cancer's out, your treatments are over, time to get back to your pre-cancer life! Let's go!" The cancer leaves issues, the surgeries leave issues, the treatments leave issues, and the mental stress leaves issues. Give me time and space to deal with those issues and if you don't want to really listen to the description of those issues, don't ask. Just smile when I say I'm hanging in there and leave it at that.

As for Big Carrot, I've had a lot of really, really rough nights perched atop my Squatty Potty since my reversal, but the absolute worst one, the one I will always remember, was after I decided to introduce a couple of raw carrots into my diet and see how it went. It felt like I swallowed a couple of live lobsters whole- shell, claws, the whole kitten caboodle- and they were trying to fight their way out. If eating carrots is the only way to prevent a recurrence, I'm doomed. I'm not hosting another lobster heavyweight bout in my intestines. I'd rather drink a fruit smoothie full of almonds. :mrgreen:

One last chapter to this novel-- The first question I asked my top-rated colorectal surgeon when he told me it was cancer was, "Could I have prevented this?" and he said, "No, there was nothing you could have done differently that would have kept this cancer from growing in your body." So any attempts by well-meaning individuals to blame me for getting this sucky, sucky disease go in one ear and out the other. I don't have time or patience for the blame game. I'd much rather work on getting healthy in the future than beat myself up over what I should or shouldn't have done in the past. But that's just me.

Judy-who will never be a victim of Big Carrot again!

Can I borrow this post to properly get out of jury duty ? :roll: :roll: :roll:
Bro Nut
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

Utwo
Posts: 270
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

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

Postby Utwo » Thu Jul 06, 2017 8:34 am

JudeD59 wrote:As for Big Carrot, I've had a lot of really, really rough nights perched atop my Squatty Potty since my reversal, but the absolute worst one, the one I will always remember, was after I decided to introduce a couple of raw carrots into my diet and see how it went. It felt like I swallowed a couple of live lobsters whole- shell, claws, the whole kitten caboodle- and they were trying to fight their way out. If eating carrots is the only way to prevent a recurrence, I'm doomed. I'm not hosting another lobster heavyweight bout in my intestines. I'd rather drink a fruit smoothie full of almonds. :mrgreen:

Judy, how many months after your reversal have you tried to eat these two carrots?
By that time have you already started with carrot juice and grated carrots?
Have you started right away with two carrots or already tried to eat just a small part of a carrot?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Thu Jul 06, 2017 9:23 am

Utwo wrote:
JudeD59 wrote:As for Big Carrot, I've had a lot of really, really rough nights perched atop my Squatty Potty since my reversal, but the absolute worst one, the one I will always remember, was after I decided to introduce a couple of raw carrots into my diet and see how it went. It felt like I swallowed a couple of live lobsters whole- shell, claws, the whole kitten caboodle- and they were trying to fight their way out. If eating carrots is the only way to prevent a recurrence, I'm doomed. I'm not hosting another lobster heavyweight bout in my intestines. I'd rather drink a fruit smoothie full of almonds. :mrgreen:

Judy, how many months after your reversal have you tried to eat these two carrots?
By that time have you already started with carrot juice and grated carrots?
Have you started right away with two carrots or already tried to eat just a small part of a carrot?


It was eight or nine months after my reversal and it was baby carrots, not a couple of regular carrots. I ate two or three tiny little baby carrots smaller than my pinky finger. And I made sure to chew them really thoroughly, but it didn't help. I can eat cooked carrots, but not raw.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Thu Jul 06, 2017 10:49 am

JudeD59 wrote:I feel ya.

I have one acquaintance on FB who is constantly sending me PM's of grain and nut diets that will cure me. Apparently I need to drink fruit smoothies with grain and crushed nuts and eat several cupfuls of raw almonds every day to cleanse my system of all cancer. I've politely told her that since my temp ileostomy reversal, I can't tolerate nuts and even one fruit smoothie would give me diarrhea for days, but she is ever vigilant in ignoring my reality and continuing to bombard me with advice. She must own stock in the almond companies because I barely know her. Or maybe she owns stock in the butt cream industry because sales would definitely go up if I followed her sage advice. I wonder if I can convince her to switch to Big Carrot for a while just to get her out of her rut? They must have room on their payroll for a go-getter like her!

My sister, whom I love dearly, asks me why I don't drive the four hours to visit as often as I used to. I try to tell her of my post-reversal digestive problems and she interrupts to say that she understands; why, on the occasional rough morning she poops two or three times before she can start her day and it's a nightmare for her schedule. I want to tell her that I have a schedule, too---get up, poop, have breakfast, poop, take a shower, poop, flush, wash hands and just when you thought it was safe to exit the bathroom-back in for another, you guessed it, poop. And on and on all day and sometimes all night, too. But since I would rather not be known throughout the family as She-Who-Must-Always-Poop, I just change the subject.

And when I tell her that my body hasn't rebounded from the chemo and most days I have trouble finding the energy to shower, she says, "I know, right. I babysat my granddaughter for two days last week and you don't know what tired is until you've tried to keep up with her!" I want to say, "Really? Babysitting for two days is more tiring than a bad reaction to chemotherapy? Let's trade places and find out??" Of course I don't say that and I wouldn't really wish this on her or anyone, but I have the most problems with people who don't listen after asking how I am. They hear the first five words and immediately try to top whatever problem I'm having or tell me how they understand because they had (insert relatively minor mildly annoying issue here). "Radiation? I completely understand. I had the worst sunburn a couple of years ago. Hurt for days." "Chemo? I can so relate. I had to take this antibiotic once that made me feel like puking every time I took one." "Loss of appetite? I should be so lucky. I got food poisoning on a trip to Jamaica and lost ten pounds. Best vacation ever! Put it right back on when I got back though." I want to punch them, but I actually just stand there, smile, and nod my head until I can escape.

If someone merely asks, "How are you?" with the predictable sad head tilt necessary while talking to a cancer sufferer, I just say "Hanging in there, thank you. How are you?" and leave it at that. But if they start asking more detailed questions about my recovery, all I want is for them to listen to the answer. Really listen the way I listen while they tell me about their life and issues. I'm not looking for advice, miracle cures, anecdotal tales of people they know who either died from rectal cancer or had a miraculous cure from eating beetle intestines, or for sympathy. I just want them to understand a little better why I have to say no when they invite me places or ask impossible favors from me. I'd like them to understand that it's not as simple as, "The cancer's out, your treatments are over, time to get back to your pre-cancer life! Let's go!" The cancer leaves issues, the surgeries leave issues, the treatments leave issues, and the mental stress leaves issues. Give me time and space to deal with those issues and if you don't want to really listen to the description of those issues, don't ask. Just smile when I say I'm hanging in there and leave it at that.

As for Big Carrot, I've had a lot of really, really rough nights perched atop my Squatty Potty since my reversal, but the absolute worst one, the one I will always remember, was after I decided to introduce a couple of raw carrots into my diet and see how it went. It felt like I swallowed a couple of live lobsters whole- shell, claws, the whole kitten caboodle- and they were trying to fight their way out. If eating carrots is the only way to prevent a recurrence, I'm doomed. I'm not hosting another lobster heavyweight bout in my intestines. I'd rather drink a fruit smoothie full of almonds. :mrgreen:

One last chapter to this novel-- The first question I asked my top-rated colorectal surgeon when he told me it was cancer was, "Could I have prevented this?" and he said, "No, there was nothing you could have done differently that would have kept this cancer from growing in your body." So any attempts by well-meaning individuals to blame me for getting this sucky, sucky disease go in one ear and out the other. I don't have time or patience for the blame game. I'd much rather work on getting healthy in the future than beat myself up over what I should or shouldn't have done in the past. But that's just me.

Judy-who will never be a victim of Big Carrot again!


Judy, you truly have a gift with words. I love reading your post :D

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!

User avatar
Jacques
Posts: 580
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

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

Postby Jacques » Sun Jul 09, 2017 1:51 pm

Maggie Nell wrote:A thread on the same theme that was prepped circa 2013
viewtopic.php?f=1&t=43511

And another thread, this one from 2015:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53204&p=420586#p420586

User avatar
henry123
Posts: 214
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Thu Dec 21, 2017 10:25 am

I sort of agree with both sides of opinion. During past two years, I have lost my cool with well intentioned family and friends for unsolicited constant advise or triviliazing suffering especially while handling chemo side effects. I have also got upset with family members who did not cooperate with various life issues or make easy adjustments to make me physically or emotionally feel better. I have smiled at daily dose of alternative treatments.
My oncologist had got very upset when I agreed to switch from chemo to immunotherapy (Based on 2nd opinion ) .
But I have also adopted some alternative suggestions in addition to main treatment such as juicing, yoga and following vegan diet. I feel these have helped me a lot without interfering with treatment.
I have religiously followed my primary medical oncologist.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

NHMike
Posts: 2508
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Dec 25, 2017 10:04 am

I played Judy’s post for my wife and she said that she’s a good writer. A lot of people provide advice and one recently advised against chemo. I would like to say that I wouldn’t be here today without chemo.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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 May 31, 2019 7:40 am

I don't know how this site feels about thread resurrection, but I just had to share some more venting. My DH is now in hospice, and is resting comfortably. For that I am grateful. However, it is still amazing the things people think are ok to say to me right now.

You would think, that if you are 45 years old and facing losing your husband of 21 years, that if people can't be helpful, they can at least not burden you with additional bull-spit. You would be wrong. Thus far, I have managed to keep my internal monologue... well... internal. But I am under a lot of stress. I don't sleep much. I have a headache all of the time. So here are some things that may be coming out of my mouth soon.

No, random stranger that I just met 15 minutes ago, you do not know how I feel because your hamster died last week. I am not judging your grief. I'm sure you loved that hamster and as I have said repeatedly, it is not a competition. But you do not know how I feel.

No, guy who delivered an oxygen tank, I do not need you to tell me about our Lord and Savior Jesus Christ. I have my own relationship with our Lord and Savior Jesus Christ and judging by the fact that you feel the need to proselytize to a 45-year old woman about to lose her husband, he and I have a very different relationship than he and you. That's fine, but please just drop off the oxygen and leave.

No, Joe's coworker, you cannot come over and ask him last minute questions about project status and get advice for finishing them. Even if he could carry on a conversation, which he can't, I would toss your ass out, preferably into the nearest red ant pile. You will just have to figure it out your damn self.

No, well meaning new coworker, I am not interested in reading a website about a guy that claims to cure cancer he never had with carrot juice for the soul purpose of selling his quack science book.

These are just from the last two days. Humanity is truly amazing. Here are some honorable mentions from the past:

No, pharmaceutical companies are not hiding the cure so they can make more money.

No, he has not tried coffee enemas, and he isn't going to... ever... EVER.

And finally, now that the semester is over, I am going over to the local university and I will pay $30 to any kid willing to sell me their chemistry book. And I'm going to carry them around for every jackass that needs to tell me about alkalized water. (They are out there and they are organized.)

Them: You know alkalized water...
Me: Here's a chemistry book
Them: ... I was just going to say it cures...
Me: Turn to page 136
Them:... You see it works by...
Me: There's a whole section on pH adjustment. Look up the part where you add a weak base to a strong acid.

And that's when the stabbing will start.

It is truly amazing what people think is "helpful."
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

User avatar
Maggie Nell
Posts: 1143
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 May 31, 2019 9:03 am

I suggest you try and get a twoferone deal with a chemistry AND anatomy book so when the
stabbing starts, you hit vital organs... :twisted:

There's something about severe personal crisis that acts as a dog whistle for every dropkick
within a 20 click radius....I believe there's no rule book that says you have to be polite yet
it seems to be a default setting. I managed to unwire mine. I can send you the secret instructions
engraved on a carrot.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX

Sorbitol is the Devil
Ordained Dudeist Priest at Dudeism, the Church of the Latter-Day Dude 8)

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Fri May 31, 2019 11:58 am

Edit: post moved to another thread.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Fri May 31, 2019 5:17 pm

inorganic8 wrote:I don't know how this site feels about thread resurrection, but I just had to share some more venting. My DH is now in hospice, and is resting comfortably. For that I am grateful. However, it is still amazing the things people think are ok to say to me right now.


It is truly amazing what people think is "helpful."


I am so very sorry to read that 1st paragraph. I pray he is pain free.

Yes, sometimes people so say heartless things. And everybody has heard about someone who was cured from cancer by something very stupid.

I'm sorry you and your family are having to go through this.

(((inorganic8)))

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!

User avatar
SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

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

Postby SilverWedding » Fri May 31, 2019 7:09 pm

I am so sorry. I am also a wife to DH with CRC. I JUST POSTED MY OWN RANT.

My heart aches for you. And for him. And for your whole family. I am scared for us because i already feel the pressure and failure and misery and failure and unapproachableness (I know that’s not a word).

I hate it.

People are either avoiding me or equally as bad - having a chipper, joyful “You hangin’ in there” insincere checkin. NO. IM NOT.

I actually just told someone about this. He said, “Well, besides your husband’s loss of a job and this health issue, how are you doing?” HELLOOOOOOO? I said firmly, “My husband has a terminal disease. I’m not doing well. Are you listening to what I’m saying.”

I hope you can find strength nd that you are surrounded by REAL helps. I already feel like a tv show people tune in to. I hope you get gifts and encouragement and good news. And a miracle.
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19


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