The things people say to cancer patients

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VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

The things people say to cancer patients

Postby VeggieLvr » Sun Aug 26, 2018 12:22 pm

I know it's hard and people don't know how to react or what to say to someone with cancer. It's so frustrating and upsetting at times though...

I saw my close friend and her sister this week for my friend's birthday, we all had plans for dinner. Their brother was recently diagnosed with Stage II prostate cancer and had surgery that day at MSK, which went well. Shortly after I met up with them for dinner, the sister and I were alone briefly and she proceeded to ask me a million questions...she knows I have the HAI pump and was curious about that so I didn't really mind. Then she says something along the lines of "You were my example to my brother that it could be worse and what he has isn't as bad in comparison"...as soon as she said that it was like a punch in the gut. I mean, of course I know Stage IV is bad, I deal with the reality of it every day, but hearing someone else say her pep talk to her brother was at least he wasn't me was hard to swallow.

She then proceeded to ask a million questions on the way to the restaurant - how many more treatments do I need? - no idea I said (but this is something I wonder and worry about every day), then she asked how many more treatments they normally do in cases like mine - I don't know!! She then said "I'm so sorry, it's terrible you have to go through this, I can't imagine" with such raw sadness and pity in her voice...I started crying a little then and told her I can't talk about it anymore - my friend changed the subject but her sister apologized to me at least three times over dinner for making me cry...

I know people don't get it but this exchange really threw me for a loop. I hate that I am no longer VeggieLvr, I'm VeggieLvr with Stage IV cancer who everyone feels bad for. I'm VeggieLvr who people can't imagine what I am going through - well neither can I. I can't imagine another treatment, another scan, another surgery. I have my 7th treatment tomorrow and I'm dreading it as always but it just feels worse this time and I keep hearing her words and pity in my head.

Thank you for letting me vent, it helps writing this out. I would be so much more lost without this wonderful community and for that I am grateful.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

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

Re: The things people say to cancer patients

Postby stu » Sun Aug 26, 2018 1:50 pm

Hi .
Can I just say I think you handled that really well . A friend is in the process of dealing with her stepson who is dying and her husband who has just been diagnosed with MND . One of her friends first words to her “ Any ideas what I can do with my hair for the wedding?” . Really!!!
My advise to her was you learn very early on that some people’s company really helps and others despite their best effort really hinders . They are not insightful or sensitive enough to discuss things without leaving you dismantle. It’s important to select your company just now , just till you get stronger . It may settle .
My own brother in law ‘s words of wisdom . “ it’s great your mum knows she is dying so she can go and spend all her money!” . It left me vomiting in a bush on my way to my car . He really was trying to comfort me. My husband was stunned so much he stayed silent .
You are most certainly still you and that will resurface soon .
We are always glad my mum did not embark on her mega shopping trip as nine years later she is doing just fine .
Get it all out here . We get it ,
Take care ,
Court
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 .

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: The things people say to cancer patients

Postby VeggieLvr » Sun Aug 26, 2018 2:27 pm

Thank you Court, I appreciate your response and I agree about selecting my company - my friend has been so great throughout this, and I do like her sister but this is the second time I've seen her sister since my diagnosis and both times she made me feel badly (this last time was worse). I know she truly doesn't mean any harm but she apparently just doesn't get it...

I can't believe that hair comment your friend received, that's awful. And your Brother in law's comment too - so insensitive! I understand it can be hard for people to empathize but seriously come on now. I wish people would think before they speak!

I'm so glad that your mom is doing well, that's wonderful. :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

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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 » Sun Aug 26, 2018 2:30 pm

Nobody expects the Spanish Inquisition........

:twisted:
Last edited by Maggie Nell on Sun Aug 26, 2018 3:36 pm, edited 1 time in total.
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:

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: The things people say to cancer patients

Postby Lee » Sun Aug 26, 2018 2:39 pm

So sorry this happened to you. 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. 10 years later, she tried to reconnect, butt she had not changed. I also realized she had no friends at that point. I wonder why.

As Stu, vent away here, we really do get it.

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!

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: The things people say to cancer patients

Postby VeggieLvr » Sun Aug 26, 2018 4:21 pm

Maggie Nell wrote:Nobody expects the Spanish Inquisition........

:twisted:


Seriously! A couple of questions is fine, but she went on and on...like enough already! I should have been more direct from the start that I didn't want to talk about it - it sucked too because I didn't even enjoy being out to dinner after that, but I just put on a brave face for my friend.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

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Atoq
Posts: 387
Joined: Wed Oct 25, 2017 9:31 am

Re: The things people say to cancer patients

Postby Atoq » Sun Aug 26, 2018 4:27 pm

I can really relate to that, a neighbour told me that her daughter wanted to go shopping to find a jacket and she told her she might not find the one she was looking for, and then the daughter replied «I know these things are not important, what really matters is that you mum are healthy and not like the mother of XXX». And try to guess, XXX is my daughter and the neighbour told me this story to cheer me up! :?
But ok, I might be Claudia stage IV now, life can still be wonderful.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: The things people say to cancer patients

Postby VeggieLvr » Sun Aug 26, 2018 4:34 pm

Lee wrote:So sorry this happened to you. 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. 10 years later, she tried to reconnect, butt she had not changed. I also realized she had no friends at that point. I wonder why.

As Stu, vent away here, we really do get it.

Lee


Thank you Lee. It definitely sounds like you're better off without your former friend. You're so right about cancer bringing out the best and the worst - my friend has been wonderful and so supportive, but her sister probably isn't someone I should be around now.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: The things people say to cancer patients

Postby VeggieLvr » Sun Aug 26, 2018 4:38 pm

Atoq wrote:I can really relate to that, a neighbour told me that her daughter wanted to go shopping to find a jacket and she told her she might not find the one she was looking for, and then the daughter replied «I know these things are not important, what really matters is that you mum are healthy and not like the mother of XXX». And try to guess, XXX is my daughter and the neighbour told me this story to cheer me up! :?
But ok, I might be Claudia stage IV now, life can still be wonderful.

Claudia


Jeez, what are these people thinking? I'm sorry your neighbor decided to share that with you - I can't get over how clueless people are.

You're right, life can still be wonderful. Lately I have to remind myself of that often!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

bitchslapped
Posts: 1531
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: The things people say to cancer patients

Postby bitchslapped » Sun Aug 26, 2018 5:23 pm

People are well-meaning idiots sometimes. And some just plain insensitive & full of themselves. Even I as a former caregiver, DM had colon cancer, DH, DSS...can't say I am fluent in what to say either. Wish you had said something to help educate these individuals so they don't continue to spread the misery to others in the future. I surely would not include the sister in future outings. Bringing you to the point of tears should make her STFU. But did she really learn anything? If one doesn't know them well I think it's best not to say anything about a person's medical condition.

We have other threads on what not to say to a cancer patient, but pretty much nonexistent on what TO say, if anything @ all. Do cancer patients just as soon not have it mentioned? I bet people think it's rude not to. But no excuse in my mind for the clueless insensitivity of your friend's sister. Sounds like a case of oral diarrhea, doesn't know when to shut her mouth.

As far as telling someone they look good? Call me GUILTY. My BFF's sis has Stg IV breast cancer. However we did discuss what was going on w/her b/c I asked, then listen. Not asking was not an option for me, but then move on. Known her since middle school. Next time I saw her @ dinner, didn't address it @ all.

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

Beckster
Posts: 421
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: The things people say to cancer patients

Postby Beckster » Sun Aug 26, 2018 6:09 pm

It doesn't matter what stage of cancer you have...you have cancer and people do not think before they open their mouths. When I was diagnosed, my son was so upset that he could barely function. I told him that it was caught early, but to him, it was a death sentence. He did not want to talk about it. His friend had a house warming party and he and his wife attended knowing that my chemo started the day after Christmas. His friend, who is the son of my best friend, asked him how I was doing. He proceeded to tell my son that he would not know what to do if it was his mom. He told my son he would not be able to handle it....needless to say, my son left. Really???? Some people have their heads up their ass!

One thing that has changed since my cancer is that I find I have a low tolerance for assholes. So, if they open their mouths without thinking...I shut it for them!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: The things people say to cancer patients

Postby Lee » Sun Aug 26, 2018 6:14 pm

Some of my best friends was a husband and wife. Early on in my diagnoses, each would take me out to lunch (her one week, him next week) for the sole purpose of letting me vent my fears, frustrations, etc. What a life line that was.

Laughter I have found is some of the best medicine. When I was going through chemo, I felt uncomfortable going to other people's home due to "chemo gas". As one of my friends put it, "it's thick, it's deadly, and it doesn't move". When I expressed concern about going to wife/husband home due to chemo gas, husband replied. " I have 5 fans in my house, I can put all of them on you at any time, you may be suffering from chemo gas, butt rest assured the rest of us will be just fine. Never let that be an issue coming to our home". What a perfect answer and yes I did go to there home while on chemo. He never did bring out those fans. :shock:

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!

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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 » Sun Aug 26, 2018 6:23 pm

I too have developed a very low tolerance levels for assholes but mostly keep it to myself.

Other than my clients and family I have told very few people about my cancer. And other than my oncologist, no one knows what stage I was diagnosed at not even family and husband. (That's a completely different story). I haven't shared it and only one client out of everyone who knows has asked. I was able to brush the question aside and it hasn't been asked since.

I've been told I look really good for someone going through chemo, and while I disagree, I take it as a compliment and believe that it is well intentioned. 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.

What really burns me though is that 2 weeks ago I had my post chemo CT scan review with my oncologist. My husband knew about it but didn't make the effort to find out what time it was or if I wanted him to come with me. I went alone. After the appointment I sent an email to my MIL outlining the results and next steps. I cc'd husband so that he would have the details of what I told her as she phones him every night before I get home from work. Apparently she bitched to him that I was so rude to send it by email and that I should have phoned them both to let them know. Although I didn't say anything, I was wondering why she wasn't equally as perturbed that her beloved son couldn't be bothered to attend and hear the results first hand.

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?

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: The things people say to cancer patients

Postby AppleTree » Sun Aug 26, 2018 10:52 pm

In October my local YMCA is starting a 12 week program for cancer patients. It is a bit of light exercise, a nutrionalist and a chance to talk with others (in perdon) who get it. I am really looking forward to it. A support group might be something to consider. You are not alone in having insensitive friends and sometimes just knowing that is a help. I have have so many people tell me chemo is poisonous and how can I do that to myself!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: The things people say to cancer patients

Postby CRguy » Mon Aug 27, 2018 12:45 am

I love this forum !!!!!!
Already read a few replies I "could have" written ..... :twisted:
and some which I SHOULD have written ... :shock: :mrgreen:

truth be told :
you can't cure stupid
never let small minded assholes drag you down to their level
some folks don't know shit from shinola
I am inside the disease ... outsiders have NO frame of reference
I have the cancer ... SO I am always RIGHT !
I really don't care if you think you know shit about ME ...
YOU DON'T KNOW SHIT ....
and on and on and on .......

sorry homie BUTT we have sadly had to deal with stupid stuff people say TO cancer folks,
since I have been here ... February 2008

We always seem to get to ... " they really mean well ... BUTT don't really know shit about what YOU are going through "

read my bio
Stage IV
caregiver thrice
currently "coaching" a younger relative with Prostate Cancer

the difference here I guess IS that I have BTDT so when I shout out I know WTF I am talking about
and folks who contact me understand that

my relative GETS THAT 'cos he knows who I am and where I am coming from
he has had LOTS of ignorant replies from folks who ...
don't know shit from shinola

did I say I love this forum ???

YUP
WE know shit from shinola

rant and vent HERE
WE get it

some other folks ....... ?
maybe not so much

Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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