The things people say to cancer patients

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crikklekay
Posts: 102
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: The things people say to cancer patients

Postby crikklekay » Mon Aug 27, 2018 12:21 pm

I think any cancer patient/caregiver can relate as like many people have said in this thread, no one thinks before they speak. The thing I hate the most is when people pipe up with "Oh my friend had cancer, they only lived for two years after" or "My mother-in-law had lung cancer, she was never the same" and "My father-in-law's cancer just came back and they don't know what to do" ad nauseam. The last thing I want to hear is about your friend/family member/coworker and their battle with cancer, especially if it went bad! Stories like that just add to my anxiety. For some reason they were never stories like "So-and-so had cancer, but they beat it and doing well and so will he!", it was always something awful.

The worst thing was an off-handed comment my Mom made to me once, and anytime she asks how I'm doing it just repeats in the back of my mind. I was venting how I'm going to be anxious over every little thing going forward because it might mean the cancer is back or the chemo isn't working, and she told me that "anxiety is a sin" because we're supposed to trust in God and anxiety means we aren't putting faith in Him. It was like a gut punch, and it goes without saying that I haven't opened up to my mother on how I'm really feeling since. So vent all you want, we all know exactly where you're coming from!
Caring for DH John
Colon Cancer, Sigmoid colon
Adenocarcinoma
G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear
08/19 CT Scan Clear
08/20 CT Scan Clear

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

Re: The things people say to cancer patients

Postby NHMike » Mon Aug 27, 2018 12:58 pm

I find that people say dumb things because they are uncomfortable and I find that it's often my job to explain how things are, even if they are unpleasant. Many people my age either have problems or care for someone with problems or know people that have problems. There's a huge amount of ignorance out there about cancer as well.

I was on a Marketwatch discussion board on an article where the writer said that his mother tried one round of chemo and decided that she was not going to continue. In the comments, one older person, in his 70s, indicated that he probably wouldn't go through treatment. I just commented that the decision is a lot different if your survival rate is 5% compared to 95%. And then he agreed. We here know a lot of the science and the medicine and know lots of people that have made it through treatment. It is no picnic and we worry, suffer pain, and lots of other things. And it's difficult for others to get that - because they're likely terrified of it.
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

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juliej
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Re: The things people say to cancer patients

Postby juliej » Mon Aug 27, 2018 2:06 pm

bitchslapped wrote:We have other threads on what not to say to a cancer patient, but pretty much nonexistent on what TO say, if anything @ all.

I want simple acknowledgement: "I am so, so sorry this is happening to you."

Then Love. This one is tricky because too much love can make you feel like you're attending your own funeral, but just the right amount can give me super powers. :D

Asking ""How can I be helpful?" is very nice too.

What I don't need:

Solutions. I have an oncologist for that, thank you.

Comparisons. No, my stage 4 CRC is nothing like your Uncle Charlie's thyroid cancer. And your chronic arthritis doesn't compare to my chemotherapy treatment, nor your hip surgery to my liver resection.

Downplaying: I know I'm better off than a child dying from starvation in Ethiopia, but don't underrate the significance of my illness.

Religious zealots. I'm sure your heaven is a good place but I'm not in any hurry to go there.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Maggie Nell
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Location: Central Highlands, Victoria, Oz

Re: The things people say to cancer patients

Postby Maggie Nell » Mon Aug 27, 2018 3:42 pm

mobrouser wrote:
I learned over the chemo period that 2 of my clients were using my cancer card on their clients as an excuse for stuff that they should have dealt with. That pissed me off.

8) mob


I gotta ask, as an aussie, what does this mean about using your cancer card as an excuse for not dealing with their stuff?


Last week, during a discussion, with a social worker, I just mentioned that my unexpected medical emergency with colon cancer took
priority over attending to some documentation at the time or within the 6-month window. The woman didn't even look me in the face
when she sniped; "Rolling over and playing dead is no excuse". Senior management are in damage control but I've lost that forgiving
feeling.....
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

Five and a half years later......is it a just a cranky haemorrhoid or is it something more....Category I
patient waiting to be scheduled for a scope [size=50]in Deliverance country, rural Victoria.
Services are limited due to corona virus doncha know.


All I want for Christmas is NED. :mrgreen:

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

Re: The things people say to cancer patients

Postby NHMike » Mon Aug 27, 2018 4:00 pm

Maggie Nell wrote:
mobrouser wrote:
I learned over the chemo period that 2 of my clients were using my cancer card on their clients as an excuse for stuff that they should have dealt with. That pissed me off.

8) mob


I gotta ask, as an aussie, what does this mean about using your cancer card as an excuse for not dealing with their stuff?


Last week, during a discussion, with a social worker, I just mentioned that my unexpected medical emergency with colon cancer took
priority over attending to some documentation at the time or within the 6-month window. The woman didn't even look me in the face
when she sniped; "Rolling over and playing dead is no excuse". Senior management are in damage control but I've lost that forgiving
feeling.....


Playing the cancer card is using your status to get a pass on something. So you want to get off jury duty and you tell the clerk that you have cancer and the clerk lets you off (btw, there are many valid cases where having cancer should get you off a jury such as dealing with chemo or an ileostomy).

I'm not sure how you would play someone else's cancer card - maybe something like I have to help a friend with cancer in order to get out of doing something.
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

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mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: The things people say to cancer patients

Postby mobrouser » Mon Aug 27, 2018 10:24 pm

Maggie Nell wrote:
mobrouser wrote:
I learned over the chemo period that 2 of my clients were using my cancer card on their clients as an excuse for stuff that they should have dealt with. That pissed me off.

8) mob


I gotta ask, as an aussie, what does this mean about using your cancer card as an excuse for not dealing with their stuff?....


One example --
Bills that I didn't know about were not being paid. For over a year. Collection agency got involved a few months ago and the excuse they used for non payment was because I was undergoing chemo. Sorry, my cancer had nothing to do with the manager ignoring multiple bills,statements and phone calls.

And it's my card to use not theirs.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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Maggie Nell
Posts: 1135
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: The things people say to cancer patients

Postby Maggie Nell » Tue Aug 28, 2018 12:21 am

Aha. Gotcha. Thanks 8) mob
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

Five and a half years later......is it a just a cranky haemorrhoid or is it something more....Category I
patient waiting to be scheduled for a scope [size=50]in Deliverance country, rural Victoria.
Services are limited due to corona virus doncha know.


All I want for Christmas is NED. :mrgreen:

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: The things people say to cancer patients

Postby stu » Tue Aug 28, 2018 1:42 am

Oh Mobrouser that was rotten of them .
Projection or what !!
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
Oct 2018. Another clear scan .

LaciK
Posts: 62
Joined: Mon Oct 12, 2015 2:10 pm

Re: The things people say to cancer patients

Postby LaciK » Tue Aug 28, 2018 9:40 pm

Hang in there. What people say is about them not us. It’s really hard to keep that in mind or be forced to deal with these folks. We get it!

My mom at first denied it was cancer (even though the doctor was pretty sure it was). Her first question to the doctor was “what caused it”...”could it be all the toxins in our food and environment “. Then she blamed me, big pharma conspiracies and traditional medicine. Perhaps not the best conversation when you are initially diagnosed. I wasn’t getting the support of the one person who was supposed to be helping me. She actually went to therapy with me and things are much better now, so it might not be hopeless. I avoided people who were clueless and less important in my life. Cancer is a journey all right!
DX 9/23/15 rc (age 50)
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear

bitchslapped
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Location: PNW/USA

Re: The things people say to cancer patients

Postby bitchslapped » Tue Aug 28, 2018 10:43 pm

juliej wrote:ownplaying: I know I'm better off than a child dying from starvation in Ethiopia, but don't underrate the significance of my illness.


Really liked your post juliej. I call that "minimizing". Overheard it happening to my DH by a very good friend...a man of faith, good man who said: "I could get hit by a bus tomorrow. We just don't know what is going to happen". He would never mean to harm or hurt anyone. It is my BFF's DH who now has Stage IV prostate cancer. We (DH & I) never discussed the comment & I hope he was not offended. I know he was trying to comfort/identify w/DH. But if one has not been a cancer patient, or even within differing stages of cancer it's possible to say the wrong thing. Think about it.


I would like to see more posts like yours to help educate although venting the offensive comments is good for the soul. :)

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: The things people say to cancer patients

Postby O Stoma Mia » Wed Aug 29, 2018 12:46 am

bitchslapped wrote:...We have other threads on what not to say to a cancer patient, but pretty much nonexistent on what TO say, if anything @ all...

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

There is indeed a book that focuses mainly on what TO do and what TO say in these kinds of circumstances. You might find some additional tips in that book:

How to Be a Friend to a Friend Who's Sick (2014) by Letty Cottin Pogrebin -- Chapter 1: “I Can’t Believe You Said That”

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ocstacy
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Facebook Username: stacy

Re: The things people say to cancer patients

Postby ocstacy » Wed Aug 29, 2018 4:19 am

Cancer can bring out the best in your friends and the worst. I dropped a friendship with one of my supposedly best friends when I was going through treatment. I realized she was dragging me down. She was not there for me, clueless to what i was going through, and made too many rude comments.


Yes, that is for sure. I recently deleted a friend on my facebook page and out of my life who I thought was a good friend to me. You see, her mother had breast cancer and now is in remission. After I let her know about my mother having cancer, she never reached out to me to see how my mom was doing. Every once in awhile when we would hang out in a group of friends, she would sort of ask, but she was fake about it all. All she cared about was her new wealthy fake life hanging out with fakes friends on fake vacations. She turned more nasty when she started to flaunt her money. She flaked on me one day cause she went to a massage spa, I just know now that I was always trying to please the bully, the bully who has been bullying my whole life. I finally got rid of her as a friend as it started to my anxiety worst.. Friends should not have to make you feel that way. Funny thing, I deleted her, and she never contacted me. You see, it was never there to begin with. Good luck friend, who has no real friends. Nobody deserves to be treated like crap if it's their problem to begin with. :x :roll:
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: The things people say to cancer patients

Postby boxhill » Wed Aug 29, 2018 9:44 am

I must say that I have been very lucky with the response of my family and friends. NONE of them have made that kind of remark to me. The only "my X had cancer" stories I was offered were right after surgery when the news broke, and they were few but very positive, have hope kinds of things as in "my mother had lung/colon cancer 13 years ago and she did surgery and chemo and she's fine and still going strong at 80+. You can make it."

One factor may be that I avoided using the magic words "Stage IV." To the broader community, I'd just say that the surgery removed all of the detectable cancer and I was having follow-up chemo to kill the remaining cancer cells that were probably roaming around looking for a new home. Which is in fact the truth. Close friends know the whole deal. Anyone who is curious can google the implications of adjuvant therapy. If they have discreetly discussed it, I don't know about it.

People tell me I look great--which in fact I do, LOL, since I lost almost 30 lbs and have some nice color due to the summer--and ask me how I'm feeling. I usually say--assuming it's one of those good, late in the cycle days--"Fine today!" I'm open about the fact that although I am very, very lucky to tolerate chemo better than many others, I do have periods of strong fatigue. It mostly comes up when planning.

I'm a Unitarian Universalist, so I am lucky that members of my church community, which is very important to me, are highly unlikely to make offensive religious remarks! :D

I did have one alternate therapy loon try to tell me about some kind of supplement regimen--don't get me wrong, I use supplements, but not expensive programs, and not INSTEAD of chemo--unless, in her words, "You chose to go the chemo route." I nodded and smiled and told her to write it down. I refrained from saying that yes, I was indeed going the chemo route because I did not have a death wish.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

J-man
Posts: 24
Joined: Tue Jan 29, 2013 4:14 am

Re: The things people say to cancer patients

Postby J-man » Thu Aug 30, 2018 1:05 am

Upon receiving what I felt was a discourteous comment from a semi-friend,
I asked them if they truly KNEW what I had been through ?

Their answer was " umm I guess not really "

My reply was to put up my hand ( talk to the hand style )
and I turned and walked away

have not spoken to / with them since

I felt free when I turned around and left that conversation and left all their bullshit behind

there is no excuse sometime for such insensitivity
no excuse

maybe to give all the info, their comment was :
"at least you're not going to die from this"

I do not post here very much, but YES
I could have, maybe still going to die from this

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: The things people say to cancer patients

Postby heiders33 » Thu Aug 30, 2018 5:55 am

My favorite thing (not) is when I get back to work from a doctor’s appointment and my coworkers ask “is everything okay?” No, everything has not been okay for some time now! I know they are just being nice and I don’t fault them, but what do you say to that when you’ve spent all week in appointments planning for your next round of cancer treatment? “Yes, everything is fine, don’t worry.”
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence


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