total pelvic exenteration

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dianetavegia
Posts: 2722
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: total pelvic exenteration

Postby dianetavegia » Wed Feb 15, 2017 9:47 am

You've been a wonderful friend to stick by her during this time. I'm sure, like others have said, that seeing you reminds her of the life she's lost, the job she loved and her future.

I think it's time to step away. IF she were to get much better after this horrific surgery, then maybe you can re open the door with a card, then a dessert left with hubby at the door and let her contact you if and when she feels like it. You're the enemy right now because she's gotta blame somebody for this nightmare and your name was picked out of the hat because of work situation.

Sending you a pm.
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

3shewolf8
Posts: 19
Joined: Mon Oct 24, 2016 12:05 pm
Facebook Username: pamela.morrison

Re: total pelvic exenteration

Postby 3shewolf8 » Thu Feb 28, 2019 5:19 am

Hello everyone. It has been a couple years since I have posted. robin did have the surgery. It was a nightmare for her, but she was able to give the finger to everyone who said that she wouldn't be able to return to work. She came back for a year. She struggled hard with her "bags", and suffered from multiple leaks during her work days. I listened, and supported her. Helped her make jokes about it, and helped her through any tears that she shed. Her first scan and bloodwork all came back clear. She skipped her next scheduled scan because she was "too busy" and didn't see the need for it. then several months ago, she noticed that she was bleeding from her reconstructed vagina. She went in to see the doctor and had bloodwork done, they did a CT scan and the cancer is back. She had another surgery to remove more cancer on New Years eve 2018. They had to move her ostomy's because of the removal of the cancer, and did something called a chemo bath inside her abdominal cavity. The doctors want her to have another port put in and for her to do chemo for the next 6 months. This was a tremendous blow to her, and once again, she is barely responding to my messages. I found out from a mutual friend that she doesn't want to do the chemo. The doctors don't want her to return to work at all, and I know that this is a HUGE blow to her as well. She is taking some more time to think about it, but she doesn't want to put herself through the treatments again. I forgot to mention that her husband is recovering from throat cancer that was detected early last year. He is still having problems with barely eating, and in a lot of pain. He refuses to have a feeding tube. Their family has been through so much. I think that she doesn't want to tell me what she is thinking because she is worried that I will try to talk her into doing something that she really doesn't want to do, but I will support her in whatever decision she makes. It's her life to live the way that she wants. I will be pulling back again like last time, to allow her to feel whatever she needs to feel. Thank you again for all of your support.

3shewolf8
Posts: 19
Joined: Mon Oct 24, 2016 12:05 pm
Facebook Username: pamela.morrison

Re: total pelvic exenteration

Postby 3shewolf8 » Fri Mar 08, 2019 10:28 am

Hello again. It didn't work out so well. Robin has decided to retire from working. Her retirement gathering at work was amazing. There were so many people from all areas of our business that stopped in to wish her well and to say good bye. I will miss working with her so much, but I am happy that she is taking time to spend with her family and focusing on herself. Thank all of you for your suggestions and ideas how I could support her best.

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Jack&KatiesMommy
Posts: 618
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: total pelvic exenteration

Postby Jack&KatiesMommy » Sat Mar 09, 2019 7:32 pm

It sounds like you have been a good friend to Robin...sensitive to her needs and knowing when to let her have her privacy. I pray that she has a peaceful life and that she knows how much you care about her. Thank you for letting us know about her. Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

3shewolf8
Posts: 19
Joined: Mon Oct 24, 2016 12:05 pm
Facebook Username: pamela.morrison

Re: total pelvic exenteration

Postby 3shewolf8 » Wed Jan 29, 2020 6:30 am

I can't believe how long it's been since I was last here. My friend's cancer is back in her abdomen with a vengeance. She now has METS in her lungs and liver. She has started Chemo again only to slow down the growth to give her more time. She has slipped into a deep depression and sits on the couch all day, and night. She is losing her hair in handfuls, and has gained a lot of weight. Her husband is at his wits end and tries to get her out of the house more. She is seriously thinking about not getting any more Chemo. The only thing keeping her alive now are her two grandkids, but since she feels so terrible, she isn't able to do anything with them anymore. She has stopped seeing visitors, and would prefer to not even see her family. Of course, I am respecting her wishes. Please include her in your prayers and thoughts.

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Atoq
Posts: 382
Joined: Wed Oct 25, 2017 9:31 am

Re: total pelvic exenteration

Postby Atoq » Thu Jan 30, 2020 10:56 am

It was incredibly sad to read this. I hope your friend finds relieve.

All the best

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

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: total pelvic exenteration

Postby brokenwings » Thu Jan 30, 2020 5:00 pm

3shewolf8 wrote:I can't believe how long it's been since I was last here. My friend's cancer is back in her abdomen with a vengeance. She now has METS in her lungs and liver. She has started Chemo again only to slow down the growth to give her more time. She has slipped into a deep depression and sits on the couch all day, and night. She is losing her hair in handfuls, and has gained a lot of weight. Her husband is at his wits end and tries to get her out of the house more. She is seriously thinking about not getting any more Chemo. The only thing keeping her alive now are her two grandkids, but since she feels so terrible, she isn't able to do anything with them anymore. She has stopped seeing visitors, and would prefer to not even see her family. Of course, I am respecting her wishes. Please include her in your prayers and thoughts.


Hi. I remember reading your friend's story when I first joined this board. Thank you for coming back and letting us know...
I'm very sorry for what happened to her... I'll keep her in my thoughts.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

3shewolf8
Posts: 19
Joined: Mon Oct 24, 2016 12:05 pm
Facebook Username: pamela.morrison

Re: total pelvic exenteration

Postby 3shewolf8 » Wed Jul 29, 2020 6:07 am

Hello everyone. Now it has been over a year since I posted on here. My friend decided to retire and spend as much time as she has left enjoying her grandkids. She has basically disappeared from my social circle. She posts on FB every now and again, but when I text or message her, she replies with one word responses or not at all. I found out that she is in a trial to see if the doctors can buy more time for her. At her last test, the tumors are growing again. over 21% growth was shown after a few months on the trial. She is unable to process the contrast due to her low kidney functions. She is not being social at all, rarely leaves the house and stays inside. after I sent her a message on FB telling her that I missed her and asking how she was doing, she unfriended me. I am taking this as the final "push away" or "please don't contact me" not so subtle message. From my earlier posts, you can see that she pushed me away before, and some of your replies said that maybe I am a reminder of the life that she no longer has. I agreed, but then she reached out to me. Now, she is closing me off all the way. I am not overbearing, I didn't "bother her" very often, and had commented only positive messages on any of her FB posts. She was posting pictures of her grandkids, or talking about how much she loves spending time with her family, very rarely did she mention her cancer, and I didn't either. I want to thank you all for your suggestions and comments to me on how to handle losing her as a friend. I will never be able to understand what she is going through, so I am following her lead.

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Atoq
Posts: 382
Joined: Wed Oct 25, 2017 9:31 am

Re: total pelvic exenteration

Postby Atoq » Thu Jul 30, 2020 2:41 am

Hi,
I am really sorry for your friend(ship). This is a public forum and given the title of this post, could it be she found out and reacted to it?
It is very difficult to go through this path and people can become very strict about who they want by their side.

All the best

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

stu
Posts: 1364
Joined: Sat Aug 17, 2013 5:46 pm

Re: total pelvic exenteration

Postby stu » Thu Jul 30, 2020 4:09 am

To be honest I have just lost a friend to cancer and another doing her very best with stage 4 treatment and a young family . I am sure my attempts at helping have been rotten at times but they have covered the inadequate attempts in the full knowledge that I am bound by my own humanity too!
I have sent “stupid “ texts and wrestled over what to write , when to step back , when to move forward . How to show my love in a way that helps not hinders . I don’t think either of them would draw a boundary in that way . My friend grew unable to text and out of the blue she must have woken up and managed a text . I took the opportunity to tell her I loved her and hope she knew how special she was to me . She replied that she felt special to me and it’s funny how we clicked . We never got to speak again .
I am sure half the time she must have felt frustrated , angry every emotion known to humans but she saw my attempt to try and make it easier . That’s all we have to give . If it’s not enough then that is the truth and I am sure it really was not enough most of the time . You are not able to reach her , probably most can’t . She is in a difficult place and it’s time to walk quietly back from the situation and leave her surrounded by the love of her family and hope it helps her at this very difficult time.

You have to invest in yourself too in the strong knowledge that you tried . I would want a friend like you .
Take care,
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 .

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: total pelvic exenteration

Postby brokenwings » Thu Jul 30, 2020 5:10 am

3shewolf8 wrote:Hello everyone. Now it has been over a year since I posted on here. My friend decided to retire and spend as much time as she has left enjoying her grandkids. She has basically disappeared from my social circle. She posts on FB every now and again, but when I text or message her, she replies with one word responses or not at all. I found out that she is in a trial to see if the doctors can buy more time for her. At her last test, the tumors are growing again. over 21% growth was shown after a few months on the trial. She is unable to process the contrast due to her low kidney functions. She is not being social at all, rarely leaves the house and stays inside. after I sent her a message on FB telling her that I missed her and asking how she was doing, she unfriended me. I am taking this as the final "push away" or "please don't contact me" not so subtle message. From my earlier posts, you can see that she pushed me away before, and some of your replies said that maybe I am a reminder of the life that she no longer has. I agreed, but then she reached out to me. Now, she is closing me off all the way. I am not overbearing, I didn't "bother her" very often, and had commented only positive messages on any of her FB posts. She was posting pictures of her grandkids, or talking about how much she loves spending time with her family, very rarely did she mention her cancer, and I didn't either. I want to thank you all for your suggestions and comments to me on how to handle losing her as a friend. I will never be able to understand what she is going through, so I am following her lead.


I'm sorry you find yourself in this situation. People have different attitudes towards the end. I've seen at least one case like your friend. She cut the strings with everyone except her close family. On the opposite road, there was a man that, when given days to live, asked all of his friends to come to see him at his deathbed... We're all different and only God knows how we'll react when our time comes.
Personally, everyday is different for me... Although I'm not terminal yet, I'm severly ill. There have been times when I didn't want to talk to my friends because, as other have said here, I couldn't stand the thought of them going out and about, living their lives, whereas I was planning my funeral... However, other times I enjoy talking to my friends and learning what they're up to...

Hugs.

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.


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