total pelvic exenteration

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3shewolf8
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Re: total pelvic exenteration

Postby 3shewolf8 » Mon Dec 05, 2016 7:01 am

thank you both MissMolly and Greenish for the reality check. I have pulled back and am being supportive, yet not pushy. We do have a friend who is telling her to get out and do what you want to do while you still can, and the worst one yet was someone told her to "stop sitting in a chair in your pajamas just waiting to die". Truly, it's none of our business what our friend chooses to do with her life. People are talking terribly about her husband who turned down a job that paid more than when he left it. I understand, since we are donating as much money and food and other things, that we can afford, so we can help them out, (he doesn't work now) but he wants to spend every minute with her, and she wants him by her side all day and night, every day and night. I don't know if it's enabling her to not do for herself, or it's helping her cope with him there doing everything for her. Either way, it's none of our business. The next person who makes a comment about how she is spending her time is going to get an earful from me. Just because people donate money, time or goods, doesn't mean that they can tell her how to live her life. She starts radiation and oral Chemo this week. It's her last chance at shrinking her tumor so the exoneration can be performed. If it doesn't shrink, she is considered inoperable. I have a terrible virus right now so I can't go see her, but I am planning to go sit with her next week. I will be patient, kind and just let her lead the entire visit. Whatever she wants or needs, I'll be there. Thank you all for the guidance!! I want to be the best friend I can be.

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Maia
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Re: total pelvic exenteration

Postby Maia » Mon Dec 05, 2016 11:19 am

3shewolf8 wrote: Whatever she wants or needs, I'll be there. Thank you all for the guidance!! I want to be the best friend I can be.

One can feel you're already wonderful to her; the feelings you have manifested here are those of love. May your friend and you be free from suffering and the causes of suffering. Wishing you the best.

MissMolly
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Re: total pelvic exenteration

Postby MissMolly » Mon Dec 05, 2016 11:50 am

3shewolf:
Your gentle presence will speak volumes to your friend when you next visit and see her.

All I want from family and friends who now visit with me is real personal connection. My friends are golden threads that randomly appear in the monotonous fabric of my days. Each visit is like a window that opens momentarily into the life that I once knew.

Be a gentle and genuine presence with your friend. Be yourself, with no false pretense.

Sometimes an odd quietness comes between my friends/family and me during a visit. They worry about wearing me out, but I can also see that I am a reminder to them of all they fear - chance; uncertainty; loss; and the sharp edge of mortality. Those of us with illnesses are the holders of the silent fears of those with good health.

My sincere advice . . . do not be afraid of periods of silence between you and your friend. Do not be discomforted and rush to leave. Do not fidget or tap your foot or comb your fingers through your hair. Do not feel that you need to fill the air with conversation.

Relax with your friend until a calmness finally spreads between the two of you.

Talk of life events shared between you. Talk of good memories together, revisit those times. Listen to what your friend may need to say. Be fully available to her. There is a genuineness to such visits that can be immensely touching and life-affirming, even in the face of serious illness
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Greenish
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Re: total pelvic exenteration

Postby Greenish » Tue Dec 06, 2016 2:07 am

Maia wrote:
3shewolf8 wrote: Whatever she wants or needs, I'll be there. Thank you all for the guidance!! I want to be the best friend I can be.

One can feel you're already wonderful to her; the feelings you have manifested here are those of love. May your friend and you be free from suffering and the causes of suffering. Wishing you the best.


3shewolf8, the mere fact that you are on here, seeking guidance, means that you are truly a wonderful friend :D

3shewolf8
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Re: total pelvic exenteration

Postby 3shewolf8 » Fri Dec 16, 2016 8:20 am

I feel lost right now. I went to visit my friend yesterday and she barely spoke to me unless I asked questions. She knew I was coming over, a couple other ladies arrived too. We all work together. I was told a few days ago that I was being moved into a different role at work, and it happens to be the role my friend had. We are both supervisors and I am being moved to take over her team, and they are going to open bids for my role. The company has held her job for her for 6 months and the team is not doing well without direct supervision. Our manager did call to tell her what was going on, so she brought it up when I was there. I feel bad for her because she really loves her job, but I have to do what I am told because it's my job and I love it too. Her team is very welcoming to me coming over, but I know that there will forever be animosity from her toward me for doing my job. She was very chatty with the other ladies, but basically pushed me out of the conversation. Believe me when I say I was completely uncomfortable and hurt. I took her money from a fund raiser that we had, and had a huge turkey that someone had donated for their Christmas dinner. I decided to say good bye after about 30 minutes because of the awkwardness. Her husband went to the car with me to get the turkey and told me that he didn't know what they were going to do with such a big turkey. I told him to have it at Christmas, then he said I don't have room in our freezer, and I replied, that it was cold enough to keep it on their enclosed porch and it would stay frozen. he agreed to that. Then he told me that when my friend got the call about her job, she completely lost it and bawled and yelled and had an absolute melt down. And then he went on to tell me how she had busted her "ass" there for so many years and was so proud of the team that she built and now she is having that taken away from her because she has cancer. He was literally yelling at me! I told him that it wasn't my idea, and that it is a business and they have to keep running, and then I went on to tell him that when she comes back to work, she will have a job. His response was, maybe, but it won't be in the same department or the same team. I left there feeling terrible about things. I am going to give her and her husband more distance. I have not been pushy, but now things have changed. Maybe they feel that they have to blame someone, so they might as well blame me. I don't know. She is very close with another lady right now who is also going through her own battle with cancer, a different kind, but they can talk to each other and compare treatments, medicine, etc. I am happy that she has someone that she can relate to, and I will continue to support her decisions and hope that she makes it through this ultimate battle. #feelingsosadandlost

ronnieciao
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Re: total pelvic exenteration

Postby ronnieciao » Fri Dec 16, 2016 10:47 am

3shewolf8 wrote:I feel lost right now. I went to visit my friend yesterday and she barely spoke to me unless I asked questions. She knew I was coming over, a couple other ladies arrived too. We all work together. I was told a few days ago that I was being moved into a different role at work, and it happens to be the role my friend had. We are both supervisors and I am being moved to take over her team, and they are going to open bids for my role. The company has held her job for her for 6 months and the team is not doing well without direct supervision. Our manager did call to tell her what was going on, so she brought it up when I was there. I feel bad for her because she really loves her job, but I have to do what I am told because it's my job and I love it too. Her team is very welcoming to me coming over, but I know that there will forever be animosity from her toward me for doing my job. She was very chatty with the other ladies, but basically pushed me out of the conversation. Believe me when I say I was completely uncomfortable and hurt. I took her money from a fund raiser that we had, and had a huge turkey that someone had donated for their Christmas dinner. I decided to say good bye after about 30 minutes because of the awkwardness. Her husband went to the car with me to get the turkey and told me that he didn't know what they were going to do with such a big turkey. I told him to have it at Christmas, then he said I don't have room in our freezer, and I replied, that it was cold enough to keep it on their enclosed porch and it would stay frozen. he agreed to that. Then he told me that when my friend got the call about her job, she completely lost it and bawled and yelled and had an absolute melt down. And then he went on to tell me how she had busted her "ass" there for so many years and was so proud of the team that she built and now she is having that taken away from her because she has cancer. He was literally yelling at me! I told him that it wasn't my idea, and that it is a business and they have to keep running, and then I went on to tell him that when she comes back to work, she will have a job. His response was, maybe, but it won't be in the same department or the same team. I left there feeling terrible about things. I am going to give her and her husband more distance. I have not been pushy, but now things have changed. Maybe they feel that they have to blame someone, so they might as well blame me. I don't know. She is very close with another lady right now who is also going through her own battle with cancer, a different kind, but they can talk to each other and compare treatments, medicine, etc. I am happy that she has someone that she can relate to, and I will continue to support her decisions and hope that she makes it through this ultimate battle. #feelingsosadandlost


My Mum is going through something very similar with a former colleague of hers. She loved her job and this was a blow to her. I think you ultimately have to back off. If she wants to be in touch, she will.

All the best
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

weisssoccermom
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Re: total pelvic exenteration

Postby weisssoccermom » Fri Dec 16, 2016 7:54 pm

I really doubt that your friend is mad at YOU but rather she is just angry at the world. Cancer takes so much away from the patient. The disease strips away your dignity, takes away your control and basically turns everything in your life upside down. Nothing is the way it was before.....pretty much every aspect of your life is affected by the disease.
I'm not trying to defend your friend and even though she has cancer, it doesn't give her the right to be rude. Basically though, she is hurting. She's got this disease that is eating away at her insides and IF the radiation is successful, she is looking forward to a totally different life....one that right now likely seems to be so incredibly overwhelming. She's not just faced with say 4 weeks of pain and then some chemo....she's faced with a very uncertain future. I'll be blunt....her statistics aren't good. Knowing that (and trust me, she has a good sense about it all), she is faced with the prospect of having the surgery and coming out with not one ostomy but two. Now, I'm not saying that someone can't live with that but let's be honest....no one wants to.
Then, to add insult to injury, the one aspect of her life that she likely felt she had some control over....one that she worked hard to accomplish....her job....is taken from her. I'm sure she knows that you had nothing to do with it but she was certainly holding on to just one part of her life that she felt wouldn't change and here it is....changing.

Give her some space....she has to come to grips with all of this and realize what her future does/doesn't hold for her. Losing her job is another blow to her....it's another part of her life that has been taken from her. She's mad at cancer and probably mad at the world. She may or may not come around to understanding that you had nothing to do with it.....but you can't blame yourself or keep trying to fix it. If she wants to fix the relationship....it has to come from her. I know it's hard but...you have to let her be right now. Hopefully she will understand that you had nothing to do with it and take a step towards repairing your relationship.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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MissMolly
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Re: total pelvic exenteration

Postby MissMolly » Fri Dec 16, 2016 9:57 pm

I can understand the deep personal hurt that you must feel in your friend's lashing out . . . .

But take heart that you are not the source of your friend's anger and frustration. Your friend is deflecting pain and loss associated with a life-threating illness.

In my own coming to terms with chronic health, the series of losses has been like a steady storm. Loss of work, and with it the loss of my professional identity, was a significant loss that I grieved. The vitality of work group relationships, self-esteem, and the intrinsic rewards of doing a job well done were replaced with a dull hum of medical appointments, uncertainty, and isolation.

Take a step back from your friend and her family and all that you have been doing to bolster them. Your first responsibility remains to yourself and to the well-being of your own family.

Your friend and her family will have to navigate their own future in their own means. In an illness as serious as the one facing your friend, over-involvement by well meaning friends can be detrimental. Every family has their own intrinsic coping skills and ways of adapting. Your friend and her family will need time to come to terms with the myriad of changes on their horizon.

You can support your friend with contact and kindness, as you have. Which is admirable.

I know that I have found myself, at times, displacing my own frustrations at those closest to me. It seems illogical that I displace my pain at those closest to me. But the reality is that as my illness as progressed, my life has become smaller and smaller, leaving only those closest to me in my inner circle. They become my target not because they are guilty of any grievance or mis-step, but rather because they are the only ones left available for me to vocalize to. I have learned to say, "I am sorry" with deep truism. I hope that you friend can find a way to understand her emotional deflections so that she does not hurt those closest to her.

Your friend is facing an incredibly difficult future. Either fork/pathway she travels will be challenged. You are not a cause of your friend's misfortune, but rather a secondary casualty by virtue of your friendship with her.

The role of caregiver/friend is a role with its own unique difficulties and challenges. You have been a trusted and faithful friend. Let your thoughts focus more on the many good times that you have shared with your friend, rather than this most recent parting. Your friend's behavior is more a displacement of her own fears/anger/frustration than it is a reflection of you and of your relationship together.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Nik Colon

Re: total pelvic exenteration

Postby Nik Colon » Fri Dec 16, 2016 11:42 pm

My advice may be different than others, but this is just me and what I would want. I know the anger and frustration. Think of it like when you are upset and push someone away, but still want them to stay (yes, many do this in everyday life). I personally may be mad or such, but I would still want my friend. I would want them to call me and say, "I know you are in a bad place and angry, hurt, sad, etc (or something), but I want you to know that whatever is on your mind you can tell me. If you are upset with me or anyone or anything, I am here and won't be upset at anything you have to say" ok, I could probably word it better if I thought more, but I hope you get it. I know my close friend would understand and has. Let her know it's ok to be angry, even at you if she needs to. Just getting it out can help. Maybe then she can move past the anger if she has any toward you. I know I get frustrated and angry at people I love, but it only helps if I tell them. Then we talk, I apologize, etc, and we all feel better. But, that's just me. I don't know your relationship, so I'm just saying how things work for me.
Best wishes

3shewolf8
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Re: total pelvic exenteration

Postby 3shewolf8 » Mon Dec 19, 2016 12:09 pm

Thank you all for your suggestions and support. I just found out, from someone else, that my friend went in for treatment today (She gets radiation and oral chemo Mon-Fri with weekends off) and has to have a blood transfusion. Since neither she, nor her husband, contacted me with the information, so I don't feel right about calling or texting either one of them. I am going to do what my gut is telling me, and give them space. I was talking to someone about it this weekend, and they told me that just seeing me might be too much of a reminder of what she is missing at work, because her job was her life. We both have the same boss, similar title, different teams, but same job. I was told that she might feel angry and bitter toward me because looking at me, is making her think even more about why did it happen to her and not me. What it all boils down to is this entire situation is not about me, how I feel, what I do, or what I want. It is about HER and what she needs, what she feels, what she needs and what she wants. I am going to back off and if she needs me, or wants to talk to me, I am here. I want her to feel the best she can feel. If seeing me causes drama in her life, I will back off. It hurts, she will always be one of my very best friends no matter what, but I refuse to upset her about stuff that ultimately doesn't matter at all. She is what matters. I'm going to send her flowers, or a card now and then, but keep my distance, not talk about work, and stay upbeat while letting her know that I am here if she needs me. That's the best I can do right now. I do need to start doing some things that make me happy and get refocused on my job. Thank you all for everything, you have been a wealth of invaluable information. I wish you all the best.

Ricecake
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Re: total pelvic exenteration

Postby Ricecake » Tue Dec 20, 2016 12:22 pm

Hi
In at the beginning of this process and having a posterior pelvic exenteration. Colon, rectum, hysterectomy including vagina (vaginectomy).

Going for loop ileostomy tomorrow then five weeks of radiotherapy and low dose chemo tablet ahead of my "evisceration". Surgeon is pretty hopeful I can get through this and have a 70% chance of making it past 5 years. It's pelvically confined.

Very scared but it's mucinous adenocarcinoma with signet ring cell which I know it's very aggressive. Have two teenage children so hoping to live and see them grow up. Any ideas, hints, tips would be great. I live in the UK.

Thanks all xx

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WriterGirl1969
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Re: total pelvic exenteration

Postby WriterGirl1969 » Sun Dec 25, 2016 7:48 pm

3shewolf8 wrote:Thank you all for the guidance!! I want to be the best friend I can be.


It sounds like she has a wonderful friend in you, just for doing what you've done to find out this information. She's lucky to have someone who cares enough to ask. It can be hard sometimes to be a friend, and even harder to put someone else first and give them what they need even when it's not fair to you.

Praying for God's peace for you both.
--Tracy
Last edited by WriterGirl1969 on Sun Dec 25, 2016 7:57 pm, edited 1 time in total.
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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WriterGirl1969
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Re: total pelvic exenteration

Postby WriterGirl1969 » Sun Dec 25, 2016 7:54 pm

weisssoccermom wrote:I really doubt that your friend is mad at YOU but rather she is just angry at the world... She may or may not come around to understanding that you had nothing to do with it.....but you can't blame yourself or keep trying to fix it. If she wants to fix the relationship....it has to come from her. I know it's hard but...you have to let her be right now. Hopefully she will understand that you had nothing to do with it and take a step towards repairing your relationship.


Well said. <:- ) I second this opinion.
You say it so well, ma'am.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: total pelvic exenteration

Postby jhocno197 » Mon Dec 26, 2016 4:25 pm

Ricecake wrote:Hi
In at the beginning of this process and having a posterior pelvic exenteration. Colon, rectum, hysterectomy including vagina (vaginectomy).

Going for loop ileostomy tomorrow then five weeks of radiotherapy and low dose chemo tablet ahead of my "evisceration". Surgeon is pretty hopeful I can get through this and have a 70% chance of making it past 5 years. It's pelvically confined.

Very scared but it's mucinous adenocarcinoma with signet ring cell which I know it's very aggressive. Have two teenage children so hoping to live and see them grow up. Any ideas, hints, tips would be great. I live in the UK.

Thanks all xx


Ricecake, you may want to start a separate thread to get more info. You can also search the forum for pelvic exenteration.

I hope the surgery goes well & works wonderfully for you. My husband was scheduled to have a pelvic exenteration, but turned out not to be a candidate.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

3shewolf8
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Re: total pelvic exenteration

Postby 3shewolf8 » Mon Feb 13, 2017 4:44 am

I pulled back and haven't posted anything on here for what seems like forever. My friend that I referred to in my original post finds out today if she qualifies for the total pelvic exenteration surgery or not. I sent her flowers last Friday to let her know I was thinking of her. I am worried, but optimistic. I know that either way the test results go, it is going to be an even more difficult journey for her and her family.


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