The things people say to cancer patients

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boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: The things people say to cancer patients

Postby boxhill » Thu Aug 30, 2018 9:12 am

Part of my experience so far is probably due to the fact that, other than the initial diagnosis, I've had only comparatively good news to report when asked.

I can see that it would be a different kettle of fish if/when that is not the case.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: The things people say to cancer patients

Postby O Stoma Mia » Thu Aug 30, 2018 10:03 am

heiders33 wrote:... 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.”

Define "Fine"
https://stacyhurt.net/define-fine/

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: The things people say to cancer patients

Postby crikklekay » Thu Aug 30, 2018 1:01 pm

heiders33 wrote: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!


Yes, thank you! Or the generic "Let me know if you need anything", what I need is for my husband to not have cancer. I got that so often in the beginning that during our third emergency hospital visit when a coworker said it I quipped back that what I needed was for us to be at home with our cats and not in the hospital again. One piece of advice I would give to friends/family of people with cancer is to just say you'll do something instead of asking that open-ended question. "Hey I'm going to bring you lunch today, what do you want?" and "I know you're busy and exhausted, is it OK if I drop by your house to help with the laundry?". Even now I had a friend contact me recently to ask if I liked unstuffed pepper casserole because he made a double helping and he wanted to give me one. My Dad called to ask who was handling my grass and I said just me, so he just said "OK I'll come by and cut it for you for the rest of the summer". I almost cried because I was too embarrassed to ask for help with the lawn and didn't have the spare funds to pay someone else to keep up.

Also O Stoma Mia I really liked that article, it definitely resonates with me!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: 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
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: The things people say to cancer patients

Postby Soccermom2boys » Fri Aug 31, 2018 10:11 pm

Here are a few basic need-to-knows about cancer: first, it’s NEVER fine. It is insidious, and a cancer diagnosis stays with you for life. Yes, you celebrate milestones of getting past it at its various stages, but the fear of recurrence is always with you; every second of every minute of every day. AND the physical, mental, and emotional effects of pumping actual poison (or radiation or cutting up your organs) into your body to eradicate the cancer NEVER go away. They say 1 year of chemotherapy ages you 10 years.

OSM, thank you so much for the link to Stacy’s blog. Wow, just wow! What I have copied above from her post in that link—I seriously want to have that copied on small business cards to just hand out to everyone who knows I had cancer and inquire about how I am doing.

For a group of people I will never in all likelihood ever meet in person, boy do I feel so connected to in a way I cannot with those nearest and dearest to me in my heart.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Ihatecancer
Posts: 2
Joined: Sun Sep 02, 2018 11:23 pm
Facebook Username: Patrick C Miller

Re: The things people say to cancer patients

Postby Ihatecancer » Mon Sep 03, 2018 12:13 am

mobrouser wrote: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

That is..horrible. I can't even imagine blowing off something so important. I go OUT OF MY WAY to be a part of my wife's treatments, tests, etc. Realistically, I of course can't make it to every single one because of my employment, but I try, and if I can't, she has a cousin she is very close to that will. It is disappointing you are dealing with your cancer without real support from the one person you should be able to expect it from most...

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: The things people say to cancer patients

Postby teacher2017 » Mon Sep 03, 2018 7:19 am

Think I’ll jump in with a few of my own:
I’m so sick of everyone knowing my business. Every time I pick up my check stub, the elderly lady hands it to me and says “May God bless my soul.” I mean really? All this for a pay stub? I said.

I’m so sick of people telling me how good I look. I reply “yeah sometimes cancer doesn’t hurt.”

I’m so sick of people saying “wow. And you didn’t lose your hair?”

How about the “if it were me, I don’t know what I’d do?”

But the best was from a fellow teacher who said “my cat was just put to sleep because it had stomach cancer that metastasized to all its organs. Is that what happened to you?” Needless to say I threw her out of my classroom.

Like I need this shit?
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: The things people say to cancer patients

Postby heiders33 » Mon Sep 03, 2018 7:32 am

Oh my goodness, I get the “you look good” and hair comments ALL THE TIME. People are so clueless. It makes me feel embarrassed about how clueless I was before this all started.

Yesterday I was telling someone about my upcoming liver resection, and he said “Yeah my wife went through the same thing, she had her whole colon removed and a J-pouch put in.” Um, no, not the same thing at all.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: The things people say to cancer patients

Postby margiej » Mon Sep 03, 2018 8:34 am

I dragged myself into work as often as I could during chemo... sometimes only once a week to try get something critical done. One day during treatment, a co-worker came in and grimly told me she just found out she had cancer too. I was devastated for her and asked what was going on. She had a basal cell skin cancer on her face somewhere! Not even visible. Umm...not exactly what I was going through. I sympathized and assured her she would be ok, but jeesh.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

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henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: The things people say to cancer patients

Postby henry123 » Mon Sep 03, 2018 8:44 pm

Soccermom2boys wrote:Here are a few basic need-to-knows about cancer: first, it’s NEVER fine. It is insidious, and a cancer diagnosis stays with you for life. Yes, you celebrate milestones of getting past it at its various stages, but the fear of recurrence is always with you; every second of every minute of every day. AND the physical, mental, and emotional effects of pumping actual poison (or radiation or cutting up your organs) into your body to eradicate the cancer NEVER go away. They say 1 year of chemotherapy ages you 10 years.

OSM, thank you so much for the link to Stacy’s blog. Wow, just wow! What I have copied above from her post in that link—I seriously want to have that copied on small business cards to just hand out to everyone who knows I had cancer and inquire about how I am doing.

For a group of people I will never in all likelihood ever meet in person, boy do I feel so connected to in a way I cannot with those nearest and dearest to me in my heart.


So true.
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
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: The things people say to cancer patients

Postby lovelife789 » Wed Sep 05, 2018 12:02 am

I love this thread!!!! LOVE!

So I have these two classic things people said to me when I was first diagnosed.

1. (Upon knowing I have cancer after asking how are you? and that I eat a lot of green, athletic, don't drink or smoke and no family history)

"Oh wow bummer, I am a crazy drinker, I eat a lot of barbecue meat, a lot of animal fat, hate greens, I don't exercise but I don't have cancer!!! I don't even have any liver or kidney issue. Guess I'm really lucky!"

Imagine....I wanted to punch her in the face if I had the energy... :evil: :evil: :evil:

2. The first onco so happened to be at the hospital at the point of my diagnosis.

"You can try chemo, it may not work or it may, it is very hard. If it doesn't work, you may die in 6 months. 5 yr survival rate is 6% for you. Any other question? You know I don't know if you will still be around the next time I come to this hospital or treat you at my clinic" :| :shock: :|

I couldn't even respond. I just said my thank you and walked out with my limbs iced cold.....

After that, I just remove stupid people from my social circle and keep my tolerance low. It's better I ask them to get out than using my time and energy to tolerate and be all calm on the outside :mrgreen: :mrgreen: :mrgreen:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: The things people say to cancer patients

Postby boxhill » Wed Sep 05, 2018 11:33 am

I have to confess that I like it when people tell me I look great. It makes me feel good about myself. Which is something I need more of.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

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

Re: The things people say to cancer patients

Postby Maggie Nell » Wed Sep 05, 2018 6:00 pm

lovelife789 wrote:
"You can try chemo, it may not work or it may, it is very hard. If it doesn't work, you may die in 6 months. 5 yr survival rate is 6% for you. Any other question? You know I don't know if you will still be around the next time I come to this hospital or treat you at my clinic" :| :shock: :|



Sounds like you got the onco that scraped in bottom of their class and was only allowed to practice to service their student debt and stay in the
food chain.... :twisted: :twisted:
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: The things people say to cancer patients

Postby mhf1986 » Wed Sep 05, 2018 7:06 pm

How do caregivers respond when asked "How are you?" My honest thought is "How the bleep do you think I am?"

How do you respond to "How many more chemo treatments?" or "How much more chemo is required?" when the answer is forever? I once responded "Til it doesn't work anymore" and the woman ran.

I am back working part time so some people assume DH has been cured. Including the Executive who said "he must be well now." DH is working part time so I might as well too.

Sigh, sorry for the rant.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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

Re: The things people say to cancer patients

Postby Maggie Nell » Wed Sep 05, 2018 9:49 pm

Three pages worth of vintage vent from 2014 :mrgreen:

tired of people's crap
viewtopic.php?f=1&t=47597&hilit=cancer+olympics#p354901
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: The things people say to cancer patients

Postby crikklekay » Thu Sep 06, 2018 10:17 am

mhf1986 wrote:How do caregivers respond when asked, "How are you?" My honest thought is "How the bleep do you think I am?"

How do you respond to "How many more chemo treatments?" or "How much more chemo is required?" when the answer is forever? I once responded "Til it doesn't work anymore" and the woman ran.

I am back working part time so some people assume DH has been cured. Including the Executive who said, "he must be well now." DH is working part-time so I might as well too.

Sigh, sorry for the rant.


I usually answer with "Hanging in there" or "Tired but I manage" with an awkward laugh tacked on at the end. Sometimes I wanted to confess that I was crying my eyes out when I was alone and full of worry/anxiety but I don't think most of my friends/family could handle that honest of an answer. I told my Grandma how tired I was and she thanked me for being "honest with her". Hoo boy.

Recently when people kept asking how many treatments left I said only _ number as long as he has a clear CT Scan otherwise we'll have more to go, and people just waved it off with an "Oh I'm sure it will be fine". I wanted to shake them all because while I appreciate the positivity nothing has been "fine" since last December! Then there is always the possibility of reoccurrence hanging over our heads like our own personal thundercloud, though I'm trying not to dwell on that.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: 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
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo


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