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

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inorganic8
Posts: 41
Joined: Mon Feb 27, 2017 6:13 pm

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

Postby inorganic8 » Thu Jun 15, 2017 2:30 pm

Ok, I am terrible. I admit it. But here's my rationalization: I am so tired of those few, but all to real individuals who have never had cancer, have never been a caregiver, and yet somehow know everything there is to know about cancer. Most people are kind and supportive, but to those others, I just have some things I really want to say. I don't. I just think them, but I really, really want to.

Person: I’m sorry to hear your husband has colon cancer. My brother-in-law died from that.
Me: …

Person: Cancer is a multi-billion-dollar conspiracy. Big Pharma knows the cure, they are just suppressing it to make money.
Me: You are objectively wrong. Go home and watch YouTube videos of the “fake” moon landing.

Person: You know [Insert something here like carrots, green tea, cinnamon, broccoli, pomegranate juice, etc.] cures cancer.
Me: No, it doesn’t. Carrots do not cure cancer. Carrots have never cured cancer. Since the dawn of the universe itself, at absolutely no point in time have carrots ever cured cancer. EVER!
Person: But there’s a book by [some bonehead] about how she cured cancer by juicing carrots.
Me: Carrots do not cure cancer. Refer to previous tirade.
Person: But a friend of mind said that their friend cured their cancer with carrots.
Me: Your friend is either a liar or badly deluded. You should not associate with people like that.

Person: In my opinion, chemotherapy is worse than the disease.
Me: Your opinion is wrong and you should feel bad for having it.

Person: Chemotherapy is poison. Your husband should stop taking it immediately and focus on Eastern Medicine and alternative therapies.
Me: No. We will not be stopping chemo. And as for you suggesting that we do, I’m not judging, but you are a terrible person.

I can't promise that I will never say any of these things, but I will try very hard not to.
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17, completed 9 rounds
Follow-Up PET 4/13/17 - Very encouraging. Definite shrinkage and 2/3 liver mets resolved.
Follow-Up PET 6/13/17 - Very encouraging. Even more shrinkage.
Folfiri 6/14/17
Follow-Up PET 9/13/17 - Stable Disease

MissMolly
Posts: 422
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Thu Jun 15, 2017 3:12 pm

Organic:
You are valid in feeling the disgruntlement that you do regarding people who vocalize inappropriate advice where none is solicited.

I do not have cancer but have life-limiting endocrine failure. Getting better is not in my horizon. I have escaped the grasp of death on two specific occasions and doubt that my body has the reserves to overcome another acute affront.

That said, you would be amazed at the advice that I have received over the years. "All you need to do is ______." "You do not look sick." "Buck up and be strong." "I heard that John F Kennedy had Addison's disease and he did fine."

People tend to grossly underrate the severity of conditions that have potentially grave consequences, as a means of insulating themselves from facing the frailty of the human conditions. To wit: You do not need to fully acknowledge that which you deny to accept at its full truism.

I have learned through the years to keep matters pertaining to my health private and strictly for discussion within the family. I openly ask for respect of my privacy.

Here's the deal . . While friends and acquaintances may be well meaning in the beginning of a serious health odyssey, as the time frame lengthens and the medical pathway more convoluted, discussion by others fills less a helpful and supporting role and morphs more as a way for people to escape from their own personal tribulations. Example: In offering you advice on cancer, your friends do not need to address their own personal problems.

My advice to you to minimize unsolicited advice is to adopt a more reserved manner in whom you decide to share information with regarding your husband's cancer and treatment. Be selective. And share details sparingly.

Anyway, I hear you.
- K -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

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

Postby AnnClare » Thu Jun 15, 2017 3:34 pm

Inorganic8 ~

I can SO relate to everything you said in your post.
My brother-in-law is just one of the many people who shares several of these opinions. In March while I was in the hospital recovering from brain tumor removal surgery, he told me about a friend of his who 'cured' his 'cancer' (no specific type given - like they're all generic and the same - argh!) by going to 'some place' in Canada and doing 'something.'

Oddly enough, this same relative doesn't believe in the moon landing and my husband has had to bite his tongue on several occasions to avoid an argument. :)

I've also heard from others about a relative or friend who died of cancer (again, rarely is a type given), but insensitive nonetheless when you're talking to someone WITH the disease.

The shit people say still floors me.
I was one who said I would "never" go through chemo. Things change once you're no longer dealing with a hypothetical situation that you never really believed you'd have to face. When things are happening to you, it's a whole other ball game.
And I'm not hating on those who go out of the country for treatment, but if one more person says the words "clinic in Mexico" to me, I will go off on them. . . .
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

recruiter
Posts: 78
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 15, 2017 3:36 pm

I think that how a person handles the dissemination of information about their disease is an individual issue. I have a bit of a public persona so going underground with my treatment isn't an option. Being open has its downside, but it also has given me greater control of how people act toward me, especially in the workplace.

To wit: My condition is well-known - my decision - in the building in which I work, which has been habitually short of restrooms since I've worked here. There's an elderly man who has a long track record of destroying the one men's restroom and, since I became ill, phoning the landlord and complaining that I'm doing it, because I suffer from rectal cancer.

Which is, in fact, a disability — something I have reminded said landlord, along with a few terse comments about the inaccuracy of his conclusions and his liability for failing to provide accommodations to the handicapped.

So it works both ways. I'm a fairly open person, and I grow tired of answering the same question 75 times.
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.

DanInMN
Posts: 86
Joined: Mon Apr 02, 2012 11:18 pm

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

Postby DanInMN » Thu Jun 15, 2017 4:21 pm

Inorganic:

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

benben
Posts: 222
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Thu Jun 15, 2017 4:51 pm

I fully understand.

For example my GF, which I hadn't seen for several months when I first told her I was diagnosed with CRC said this -

"If you seek western medicine, you will die." - yes she said this point blank.
She told me to drop everything I was doing and go with her to India to pursue yoga and would be healed.
She's a college Professor BTW. I still talk with her, but I've been diagnosed for over 3 months now and she's been to busy to see me - and she has been busy traveling the world speaking at conferences about climate change mitigation.

While I do believe myself that belief has a powerful effect on the body, I simply won't take a risk of no treatment.

Yes I've also heard the stories of "Well my coworkers son had cancer and it went to lymphnodes and he died within 2 years, usually when it gets into the nodes it turns out not so good".
I've heard and received various links about chrisbeatcancer, to gearsons juicing, etc..

Everything has its place and everyone must choose their own path. For me it was the analytical facts of 50-60% chance of survival with surgery alone and add another 25% chance of survival by doing chemo.
So far Chemo has presented me with Neutropenia - and that's a major concern for me as everything I do now has to be to minimize the chance of infection. Constant wiping things with antibacterial wipes, washing hands after touching anything over and over again, Tossing out foods that I'd just bought because the have living cultures in them or are raw fruits, 1 day past expiration etc..etc.. It's not easy. Hoping very much Neupogen shot fixes that, but that comes with all other sorts of risk factors..

The path we've chosen is already tough enough, and yes I think most people say things out of well intention and those that get close up and personal with helping with care can get overwhelmed by constant change of diets, levels of fatigue, etc.
Some people will shine in these circumstances and others fall back into patterns of addiction in order to escape, while others try to offer alternative solutions that may appear less stressful for the afflicted to endure.

Bottom line be Authentic and True to yourself. If you want to make a response to people by all means do!

health to all!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Thu Jun 15, 2017 4:58 pm

My BIL told me days after my mum's diagnosis that it was good she knew she was dying as she could go out and spend all her money!!
I was physically sick after that one. I decided to forgive him as in his own clumsy way he was reaching out.
Benben , I am a bit sad for you on the girlfriend front!!! Hope she sorts that out pretty quickly. Wishing you well.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

Lee
Posts: 5248
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Thu Jun 15, 2017 7:40 pm

benben wrote:I fully understand.

Bottom line be Authentic and True to yourself. If you want to make a response to people by all means do!

health to all!


No better words. So sorry about the situation with your girl friend.

This was a fad a few years back, butt apricot pits were suppose to cure cancer. Yeah right. Yes and carrots and broccoli have also been know to cure stage IV cancer. Yeah right again! There's another thread around here where some hospital in Mexico performs miracles everyday. They cure all types of cancer using supplements and diet, stage IV you name it, yeah right again :roll: .

I had a ding bat friend, we were already mostly going our separate way when I had lunch with her for what amounted to the last time. Just got my 2nd follow up results, all good. Was telling her my good news. She responded "well that's good news, so NOW can you finally put the cancer thing behind you". Her FIL had passed a few years prior from cancer, you think she would have been a bit smarter/compassionate about it. Anyway I shot back, if you look at some of the stats & what I've been told by some people, I only have a 30% chance of being alive in 5 years. Could you just put it by behind you so easy. Her jaw dropped and asked how I sleep at night. I responded, many nights I don't. Butt knew at that moment, she was more energy then she was worth.

Don't let the dingbats get you down.

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 - 10 years and counting!

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horizon
Posts: 1424
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Thu Jun 15, 2017 8:59 pm

Couldn't have said it better myself!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Swirdfish
Posts: 267
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Thu Jun 15, 2017 9:03 pm

I guess a large number of friends/family say a lot of dumb comments/suggestions because they want to help, they just don't know how.

Anyway I love this thread here's some comments I've received over the year.

Wife: You deserve Cancer. (Was after a small fight)

Wife: Don't worry you will be dead soon.


FIL: Your stupid and a fool for doing chemo. This weed that grows naturally anywhere can cure you. (Just finished watching Something about cancer. Didn't see him for a few hours. Guess was out looking for the specific weed)

FIL: Man, Just inject your tumour with Bi-Carb Soda. It will destroy it.

FIL: Send me a fingernail. The Rife machine will heal your cancer remotely.

Holistic Doctor: How can I help you. Looks into my eyes. (Iridology)
Me: Waits for ten seconds. I want him to tell me. Nothing happens so I said cancer.
Holistic Doctor: Of course you do. I know.
Holistic Doctor: No wonder he has cancer, he is riddled with Fungus. Worst I've seen. (Marmion)
Holistic Doctor: Take 6 of these tablets daily. Only we sell them. Do not ever come off them.

Wife to my Surgeon: Can we do a blood test for fungus.

Wife to surgeon: Why don't u inject bi-carb soda. You would be world famous for curing cancer. They have known this for years the pharma companies.

Anyway I could write a book. I do believe in the natural foods etc etc to help the immune system, and good foods can prevent cancer. But I just hate the complete wacky. People say the most bizarre odd things in times of need.

Keep this thread going, Makes me laugh.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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CRguy
Posts: 9281
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Thu Jun 15, 2017 11:28 pm

inorganic8 wrote:Ok, I am terrible. I admit it. But here's my rationalization: I am so tired of ....

I can't promise that I will never say any of these things, but I will try very hard not to.

Hey homie if that was a rant .. good onya' 'cos it was a very polite one !

SAY woteva' you need to, to those who need a ... bitchslap upside da' head !

YOU had me at " I am so tired of ..."

Over the years my own replies and advice have been way more ..... ? Incendiary ?
than what we have here so far

I will spare you all my rhetoric ( search if you dare :twisted: ... :mrgreen: :mrgreen: :mrgreen: )

My bottom line, which you appear to have already embraced my friend :

" Don't let small minded assholes drag you down to their level. "

WORD !

Cheers and Harmony
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

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

Postby LMighty » Thu Jun 15, 2017 11:37 pm

I am at the hostipal with my mom who is having pleural fluid and ascites tap. This lady next to us, she was hospitalized to treat symptoms from some advanced cancer. We overheard that the lady refused conventional treatment and turned to TCM instead, without consulting any TCM practitioner but Dr. Google. During her onc's visits, it almost sounded like the onc was begging her to stop taking TCM.

Something about human just won't seem to change, no matter how advanced science is.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

Swirdfish
Posts: 267
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Thu Jun 15, 2017 11:47 pm

Swirdfish wrote:I guess a large number of friends/family say a lot of dumb comments/suggestions because they want to help, they just don't know how.

Anyway I love this thread here's some comments I've received over the year.

Wife: You deserve Cancer. (Was after a small fight)

Wife: Don't worry you will be dead soon.


FIL: Your stupid and a fool for doing chemo. This weed that grows naturally anywhere can cure you. (Just finished watching Something about cancer. Didn't see him for a few hours. Guess was out looking for the specific weed)

FIL: Man, Just inject your tumour with Bi-Carb Soda. It will destroy it.

FIL: Send me a fingernail. The Rife machine will heal your cancer remotely.

Holistic Doctor: How can I help you. Looks into my eyes. (Iridology)
Me: Waits for ten seconds. I want him to tell me. Nothing happens so I said cancer.
Holistic Doctor: Of course you do. I know.
Holistic Doctor: No wonder he has cancer, he is riddled with Fungus. Worst I've seen. (Marmion)
Holistic Doctor: Take 6 of these tablets daily. Only we sell them. Do not ever come off them.

Wife to my Surgeon: Can we do a blood test for fungus.

Wife to surgeon: Why don't u inject bi-carb soda. You would be world famous for curing cancer. They have known this for years the pharma companies.

Anyway I could write a book (Title: I'm surrounded by dingbats). I do believe in the natural foods etc etc to help the immune system, and good foods can prevent cancer. But I just hate the complete wacky. People say the most bizarre odd things in times of need.

Keep this thread going, Makes me laugh.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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Maggie Nell
Posts: 653
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

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

Postby Maggie Nell » Fri Jun 16, 2017 12:43 am

inorganic8 wrote:
Person: You know [Insert something here like carrots, green tea, cinnamon, broccoli, pomegranate juice, etc.] cures cancer.
Me: No, it doesn’t. Carrots do not cure cancer. Carrots have never cured cancer. Since the dawn of the universe itself, at absolutely no point in time have carrots ever cured cancer. EVER!
Person: But there’s a book by [some bonehead] about how she cured cancer by juicing carrots.
Me: Carrots do not cure cancer. Refer to previous tirade.
Person: But a friend of mind said that their friend cured their cancer with carrots.



Science and folklore has not been ambiguous in showing us that carrots have never prevented the
growth of cancer in the first place. I reckon that small detail needs to be sledge-hammered home as it is
often overlooked. A nice big carrot can deliver a good wallop.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

JudiB
Posts: 67
Joined: Sun Mar 05, 2017 5:30 am

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

Postby JudiB » Fri Jun 16, 2017 9:57 am

Also loving this post!
Just before I started my chemo, I met an old friend in the pharmacy. On telling her about my cancer, she recounted that her sister had colon cancer last year. said she's fine now ...then she added "oh but the chemo was terrible.. how badly she suffered through it!"
I was already anxious.. didn't need to hear that, even though I found out how true it was with Oxaliplatine​!!
I also find lots of people try to minimise the while thing as though you shouldn't let it get to you! Sometimes. .. I just want them to appreciate how a diagnosis of cancer and treatment dominates your life for a while. I don't want pity....just a little "understanding"!!

Another comment that I don't like hearing is regards the chemo. . folks say, "Oh well, you have no​ choice​!" I always say that yes, I have a choice and I choose to do the chemo. I want to feel that I am in control of the treatment I accept. I often hear fellow chemo buddies say they have no choice... I remind them​ that accepting treatment should always be their choice!
At least we understand each other on this forum!
Xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan


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