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

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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 » Sat Jun 01, 2019 12:47 am

I don't think most people can understand the amount of suffering this disease can cause. Physically, emotionally, relationship wise, social status wise, financially and so on. My wife and I have cried over me eating one morsel of rice while on xeloda. My body refused to take any food. I would hope that I would be able to have it only to throw up once it was prepared.
Society has attuned most people from understanding other's pain.
Let them be.
Suffering them is another of the suffering.
I think.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sat Jun 01, 2019 5:28 am

Maggie Nell wrote: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.


THIS! 100% agreed!

And what is worse is how other patients and even care providers expect others to be polite, even in the face of the most extreme adversity!

If CC patients & caregivers cannot be compassionate with other CC patients & caregivers, especially those going through life-threatening events (see my signature), then how can we expect people without CC/cancer experience to be? We can't, imo. So, my rule book is unwired. I have learned to unwire it from people here and on facebook.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Mon Jun 03, 2019 11:03 am

I catch more bees with honey.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

boxhill
Posts: 675
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Mon Jun 03, 2019 12:05 pm

And what is worse is how other patients and even care providers expect others to be polite, even in the face of the most extreme adversity!


Why wouldn't they? Perhaps the fact that others in the same boat have that expectation should indicate something.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jun 04, 2019 6:01 am

Well, I just know that if someone's husband was going through a life-threatening situation or was in the tail end of it, I would cut the wife some slack if she was impolite. That's where that comment was coming from - our personal experience with others' lack of compassion. I am mostly referring to a particular doctor and her "team."
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Claudine
Posts: 464
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby Claudine » Tue Jun 04, 2019 9:41 am

Posted by a friend on FB yesterday, for a completely different situation but it applies here...

I used to have the opinion that I was the master of my fate and the captain of my soul. However, I do not hold this opinion anymore. Shitty things happen. All the time. Every day. Empathy is the ability to go down into the darkness someone is experiencing and meet them there. Sometimes darkness is the place a person or a family needs to be. Empathy is not trying to bring someone out of the darkness and into the comfortable place you are at. That would be a failed attempt at trying to “fix” it. Sometimes the only fix is time. Sometimes there is no fix.

I know people mean well when they wish us good luck, or that they are thinking of us, or praying for us, or they’ll say it’s part of God’s plan, or God doesn’t put more on your plate than you can handle. I know now to avoid saying things like that when someone is truly in a dark place. They don’t help. Honestly, they cheapen the despairing feelings a person has and dismisses their vulnerability.

I’d like to offer advice for people who are, like me, bad at empathizing with someone. I’ve learned to call a spade a spade. I’ve literally said this to a friend in darkness, “Fuck man, there is nothing I can say to take away your fear or pain or remove you from this darkness. Can I give you hug? I’m here.”
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/20: nothing to report

User avatar
ginabeewell
Posts: 477
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Tue Jun 04, 2019 10:27 am

mpbser wrote:Well, I just know that if someone's husband was going through a life-threatening situation or was in the tail end of it, I would cut the wife some slack if she was impolite. That's where that comment was coming from - our personal experience with others' lack of compassion. I am mostly referring to a particular doctor and her "team."


I have found in my own life experience, I take lack of politeness far more personally (and far less in stride) when I am invested in trying to help the person who is on the giving end. It's so much worse when one of my clients is not polite after I've spent hours trying to do something for him or her then when someone is a jerk on the train. It's like they catch me at my most vulnerable. (Maybe you can reframe this as a positive - if your reaction bugs the doctor more than you feel like it should, maybe it's not due to ego - maybe its because they are vested!)

For that reason, during my care I have tried to be polite when I've been experiencing great pain or discomfort. I have lost myself on a few occasions, admittedly, freaking the F out about something - and then made a point of apologizing. "I'm sorry about earlier. I was in a lot of pain / I was really stressed out. I know it's not your fault. Thank you for trying to help me."

I've also been pretty direct when I felt care was not adequate or appropriate. But my goal is to be polite / fact-based / diplomatic and still clearly express disappointment and future expectations.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Tue Jun 04, 2019 11:51 am

I also think politeness is like beauty. Subjective, in the eye of the beholder. I wish I could describe in detail exactly what happened and how we were treated, but I won't. Keeping these cards close to my chest especially with all her little spies out there. Suffice it to say that the responses were completely uncalled for.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Rikimaroo
Posts: 335
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Tue Jun 04, 2019 3:59 pm

I hear you on this. Everyday my Mom and Dad, you will be fine son. Did you take your pills (IMMPOWER on amazon), drink coconut water, drink your tea from the leaves we make for you, blah blah blah. I know they mean well, I know everyone means well, but no one can 100% prove that natural medicine from naturopathics have cured anyone. Thats the problem, there is no statistic to lean on. Conventional medicine there is a whole slue and wealth of proven cures, prolonged life, etc...Nothing on natural stuff. I hate when people come at me and say eat vegetables and juice and you can cure your cancer, or here I have a kit I buy that cures cancer. Only thing I Know is conventional medical doctors practice have cured it.

Look if you can show me over a 10000 plus statistic that natural remedies cure cancer, I will drop chemo in a heartbeat, i hate it, but it is working. Heres a link I just got in email, WTF is the meaning of life if you can't enjoy some of these things

https://www.healthiguide.com/health/cir ... _source=54

I hate stuff like this cause in 2 weeks they reverse course and say oops.!!
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri


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