Never mind

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radnyc
Posts: 380
Joined: Tue Apr 06, 2010 6:32 pm

Never mind

Postby radnyc » Sat Mar 09, 2019 11:34 am

Deleted
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sat Mar 09, 2019 12:11 pm

Well... I read it and ’got the message’ :(
/a caregiver wife
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

stu
Posts: 1183
Joined: Sat Aug 17, 2013 5:46 pm

Re: Never mind

Postby stu » Sat Mar 09, 2019 2:59 pm

Care giving parameters can be a profitable debate if that was the topic .
But sometimes it’s just an individuals personality that surfaces . It would be their approach if they were the patient or supporter .
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 .

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sat Mar 09, 2019 4:41 pm

Thank you Stu for your comment.
I read words here that gave me a bad, sad feeling that we caregivers should just let the one with cancer in the family deal with it, we should not take part/research/interfere/post...? There is a lot of research that cancer affects the whole family (Easy to find - I don’t need to give a link). For me as a caregiver wife to simply go on with ‘my’ life as if nothing has changed is not an option. Who does that??
We had a thread here long ago, started by a caregiver for caregivers. That thread helped me So much when I first joined ColonClub. But here it was of course not really ‘only caregivers’ since everyone can read... There are forums with specific safe places for only(!) caregivers to talk. I do feel understood & respected there.
“Never mind”? or maybe we should talk about this!?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

AmyG
Posts: 245
Joined: Tue Dec 25, 2018 8:08 pm

Re: Never mind

Postby AmyG » Sat Mar 09, 2019 5:06 pm

Not that I know what was said, but from where I sit, I would much rather be the patient than the caregiver. I can't imagine how tough it must be for you to watch your loved ones in the fight for their lives and having relatively little control of things.

I feel like my job is much easier than my husband's, all I have to do is get better!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!!

stu
Posts: 1183
Joined: Sat Aug 17, 2013 5:46 pm

Re: Never mind

Postby stu » Sat Mar 09, 2019 5:14 pm

Hi ,
You are always very balanced in your approach so try not to worry .

I actually don’t use the term “ care giver” very often as she is just my mum requiring more support from time to time . Just as she has done for me over the years . We are family making the required adjustments . As soon as she steps into her doctors office I completely respect the dr/patient relationship and only speak where appropriate with permission. She calls all the shots regarding her health as I do with mine .

I think the post was possibly making references to situations when that balance is skewed with the attention being focused on the person without cancer or worse interfer with the treatment process . Having worked in health care it happens a lot and you spend more time dealing with the relatives needs than the patient.
You are a lovely advocate for your husband and that is what we do for people we love . When they don’t need that we step back ! It is a process of evaluating what’s best .

You keep on loving him .

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 .

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sat Mar 09, 2019 5:25 pm

AmyG wrote:Not that I know what was said, but from where I sit, I would much rather be the patient than the caregiver. I can't imagine how tough it must be for you to watch your loved ones in the fight for their lives and having relatively little control of things.

I feel like my job is much easier than my husband's, all I have to do is get better!

Oh AmyG <3 that is not true! You as the patient is doing the hard work!! But you are correct that the caregiver’s feeling of being helpless when we so very much want to help - it hurts a lot and we can react odd at times due to fear :cry:
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Lee
Posts: 5952
Joined: Sun Apr 16, 2006 4:09 pm

Re: Never mind

Postby Lee » Sat Mar 09, 2019 5:28 pm

LPL wrote:Thank you Stu for your comment.
. . . We had a thread here long ago, started by a caregiver for caregivers. That thread helped me So much when I first joined ColonClub. But here it was of course not really ‘only caregivers’ since everyone can read... There are forums with specific safe places for only(!) caregivers to talk. I do feel understood & respected there.
“Never mind”? or maybe we should talk about this!?


While I totally missed what is now deleted, is this the long ago thread you are talking about?

viewtopic.php?f=1&t=18704&hilit=wives+of+husbands+who+has+cancer

I always felt cancer was the elephant in the room that no one wanted to talk about.

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!

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sat Mar 09, 2019 5:43 pm

stu wrote:Hi ,
You are always very balanced in your approach so try not to worry .

I actually don’t use the term “ care giver” very often as she is just my mum requiring more support from time to time . Just as she has done for me over the years . We are family making the required adjustments . As soon as she steps into her doctors office I completely respect the dr/patient relationship and only speak where appropriate with permission. She calls all the shots regarding her health as I do with mine .

I think the post was possibly making references to situations when that balance is skewed with the attention being focused on the person without cancer or worse interfer with the treatment process . Having worked in health care it happens a lot and you spend more time dealing with the relatives needs than the patient.
You are a lovely advocate for your husband and that is what we do for people we love . When they don’t need that we step back ! It is a process of evaluating what’s best .

You keep on loving him .

Stu

Dear Stu, thank you for kind words.
But right here and now it feels as I’m not trying to defend myself but caregivers in general/we who support loved ones. Like you I ‘stand back’ at doctors appointments, I do have questions written down and I almost always get a chans to ask them. One time I have had to act like a ‘Lioness’ when hubby was feeling very bad and I felt as no one (who should care) cared and acted. I have read many caregivers testimony regarding wrongdoing and that they had to fight for correct care. It’s like we need to learn a lot(!!) to be good support for our loved ones. They are not always strong and have strength to fight for ‘things’ themselves.
Last edited by LPL on Sun Mar 10, 2019 3:34 pm, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sat Mar 09, 2019 5:53 pm

Lee wrote:
LPL wrote:Thank you Stu for your comment.
. . . We had a thread here long ago, started by a caregiver for caregivers. That thread helped me So much when I first joined ColonClub. But here it was of course not really ‘only caregivers’ since everyone can read... There are forums with specific safe places for only(!) caregivers to talk. I do feel understood & respected there.
“Never mind”? or maybe we should talk about this!?


While I totally missed what is now deleted, is this the long ago thread you are talking about?

http://coloncancersupport.colonclub.com ... has+cancer

I always felt cancer was the elephant in the room that no one wanted to talk about.

Lee

Yes that’s the thread Lee. 236 pages!
Not sure I understand what you mean by “I always felt cancer was the elephant in the room that no one wanted to talk about.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Lee
Posts: 5952
Joined: Sun Apr 16, 2006 4:09 pm

Re: Never mind

Postby Lee » Sat Mar 09, 2019 9:48 pm

LPL wrote:Yes that’s the thread Lee. 236 pages!
Not sure I understand what you mean by “I always felt cancer was the elephant in the room that no one wanted to talk about.


Must be a USA slang. When I was diagnosed, most stats at that time had me at about 30% (some at 50%) of being alive in 5 yrs. FOLFOX was an experimental drug then, along with Avastin. My Onc used to talk about me going to stage IV. For many years, we lived with this idea that I was probably going to stage IV, you are going to die, (the elephant in the room). My Onc got me aboard with FOLFOX as a stage IIIC, game changer!!! And probably one of the biggest reason I am alive today. That and my colostomy bag, I beat the odds at that time. Along with Ron50. And a few other people who are not apart of this forum today.

A high school buddy, her dad died from this disease about 25-30 yrs prior to my diagnoses. They found his via exploratory surgery, scope were not on the road map then (President Ronald Reagan was probably the 1st USA president to get scoped, that I am aware of, another game changer). Anyway, from the time of my friend's dad diagnoses to death, about 6 months. Believe me A LOT of advancements in the last 50 years, cancer wise.

Stats were not on my side when I was diagnosed. At that time, if you were diagnosed with stage IV liver met, you could be a candidate for MD Anderson if it was 1 "singular" met (2 or more, excluded you from any clinical trials. I believe this was before Dr. Kemeny and HAI pump, again, another game changer.

The testing they did on my tumor then was SIMPLE compared to what they test today. Again there was only 1 or 2 chemo options, 5FU and something else, in my opinion, Keytruda is another game changer.

Anyway, "the elephant in the room" was I probably was not going to beat this and we are not going to talk in that direction, the goal was to keep me alive until my kids graduated from high school (they were 9 & 11 at diagnoses). I was several weeks out from surgery, we were seeing some doctor for I don't remember, my daughter was crying, I'm scared I'm going to lose my mother. Doctor looked at me then said, your mother is in remarkable condition for the surgery she just had, if you ask me, she's going to beat this, not die from this cancer. Your mother is stronger than you give her credit for. I truly believe that statement was a game changer for my daughter.

I hope this answers your question, if not, let me know.

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!

boxhill
Posts: 336
Joined: Fri Apr 06, 2018 11:40 am

Re: Never mind

Postby boxhill » Sun Mar 10, 2019 7:04 am

I think everyone's situation --and relationship--is individual, and moreover may change over time. I don't have a "caregiver" per se. My son accompanied me to almost all of my folfox infusions and many other appointments. My husband has taken care of the financial stuff, so that I don't have to worry about it. (Luckily, we have had excellent insurance throughout, and finance is his profession.) I have a dear friend, my son's godfather, who came and stayed after I got out of the hospital, who brought me cups of tea and made me little sandwiches and so on so that I could just lie on the sofa. (My S and H are lousy at that kind of thing, on the other hand they have taken over tasks such as hauling buckets of food and water out to the chickens during periods when I'm not allowed to carry anything heavy :) ) I think of them as supporting me the way family do, not as "caregivers." I also support them.

I am my own advocate and researcher. I have never been so debilitated that I need semi-nursing care. But I know that can change. I admit that as the cancer patient in this team I have a negative reaction in *some* situations where the partner uses the term "we" in reference to the cancer, just as it grates on me when men say "we" are pregnant. But I wouldn't presume to judge. Just because H and I don't have that kind of relationship doesn't mean others don't.

There are whole sets of worries that have to be borne by some spouses, in particular. Finances, financial future, raising children...none of those apply to us right now, anyway. But to bear those things plus provide advocacy, support, and physical care for a person must be extremely difficult. Carers need care also. If people need to express themselves outside the hearing of cancer patients, I'd suggest checking out the caregiver support groups on colontown.
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
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

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LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sun Mar 10, 2019 9:17 am

Thank you Lee, even though I was aware of the saying/metaphor I didn’t see how it applied here, or in that thread. At times though I think not talking about the “elephant” all the time, is helpful.

So good to hear that you had good doctors that fought for & with you and who took the time to comfort and give hope to both your daughter & you.

I only know what it feels like to be a caregiver, a supporting wife. Trying to ‘speed’-learn the cancer language and read about all kinds of treatments that exist in the world now. Being able to ask the doctor questions about treatment alternatives plus all things you worry about is So important. It makes you feel that you have done all you can/could for your loved one.

Regarding the “elephant” I believe that people have different methods of coping with their cancer/CRC diagnosis. Some want to talk, read and learn all about their cancer, some don’t want to do that but are grateful that their spouse (or other supporting person) do most of it for them. My husband belongs to the 2nd category here. To me it feels as his doctor(s) are not unfamiliar with this ‘setup’ and they most often look at me when they use medical language. If hubby don’t understand he knows I can explain later. (He is more intelligent than I am but I have worked in the medical world so not all the terminology is ?? to me).

Lee, you said that when you were diagnosed [2004] “I believe this was before Dr. Kemeny and HAI pump,...
I don’t know when it became a common treatment but this is an 1987 article (by Kemeny) with results of a HAI trial. https://www.ncbi.nlm.nih.gov/m/pubmed/2957943/
This article is including patient treated with HAI between 1991 to 2009. https://www.ncbi.nlm.nih.gov/m/pubmed/26830685/
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Never mind

Postby LPL » Sun Mar 10, 2019 9:24 am

Boxhill wrote:
If people need to express themselves outside the hearing of cancer patients, I'd suggest checking out the caregiver support groups on colontown.

Yes, I agree with that. It is a good place to ask specific questions and get caregiver support from people ‘in the same boat ‘.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: Never mind

Postby hopie » Sun Mar 10, 2019 2:26 pm

I also haven't seen the original post, but have an idea. Just as patients, rightfully, correct others when they assume to understand what they're going through, I think caregivers deserve to be cut a slack too. I'm not the one who has cancer, but it doesn't change the fact that this is the worst and harder thing I've ever had to face. And this is not necessarily "making it about me," it is just a fact.

People constantly say on this forum that you have to be your own advocate because doctors don't (and cannot) care as much, which is partially why they are able to do their jobs. But not all patients are the same. My mother, for instance, wants me to manage her treatment. This helps her, as she doesn't have to do the research--both for treatment, doctors, hospital, nutrition, life style choices etc. She doesn't want to be bothered with any of this. Nobody knows her better than I do and I'm doing my best to give her information that would help her make informed decisions. To be able to do that, I need to be on top of things.

I understand having a concern over someone whose experience you're sharing, but everyone's dynamics are different. Today, my mom cried for the third time since her diagnosis. Her concern was that she was holding me back from living my life. I'm still devastated for having made her feel that way. I didn't know how to act as trying to make her feel better would likely only make her feel more like a burden. I still want to go hide in a cave and cry for a month. I cannot and it is okay.

Learning about people's experiences, treatment options, things to look out for is the only thing that helps me remain sane. Again, I haven't read the original post, but I've read a couple of other posts around the forum and wanted to share my perspective as I would rather not feel judged or out of place for trying to help my mom.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.


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