Stage IV Malignant bowel obstruction - dad in denial?

hanabel · New User Joined: 07 Feb 2008 Posts: 5

Hello,
I am new to this forum and I am very glad to have found you.
I am the only child of a 68-year-old man with Stage IV colon cancer. He's been in the hospital for 6 weeks with a malignant small bowel obstruction. The obstruction is in multiple places so it's deemed inoperable. He's currently getting his 2nd round of in-patient chemo. He's got a g-tube with suction and is on IV nutrition.

[b]My Question:[/b]
My dad's doctors have pretty much made it clear that there's very little hope for my dad to survive very long with this. But my dad seems to be in denial, and I am not sure how to deal with it.

My dad keeps saying that he now has a "Plan B." He says that if the chemo doesn't open his bowels after the 2nd round, then he needs to find a bowel specialist at a research hospital (he's just north of NYC so he keeps saying NYU, Columbia, Yale, etc.) who can figure out how to unblock his bowels.

I don't want to discourage him if there is real hope, but it seems to me like he's being unrealistic and is in denial. How do I handle this? Do I encourage him to seek specialists? His oncologist is a community oncologist--he's not from Sloan-Kettering or anything. Maybe there's someone who could do more for my dad? If not, how do I get him to face reality?

Any advice/thoughts/experiences would be greatly appreciated. Thank you!

brainman

Hi hanabel. I am very sorry about your father's cancer. You are in a better position to tell whether on not your father is in true denial or is simply wanting to remain positive in his outlook on life. Regardless, your relationship to him should be the same.... accept him as he is at this point. The only time anyone should try to get a person out of true denial is if denial is affecting their choices. The choice to look at all available options sound like a reasonable one to me. His local oncologist may not be updated on all that is available to your father.

How is your support system? Sometimes when we deal with a person who is not feeling the way we are, we need someone else to express our concerns to. It sounds like this might be the case with you. I hope I am not sounding like I am coming down hard on you. It is just that from my experience I have seen many cases like you and your father. In all cases, the care giver needed support too. I hope this forum can be part of the answer to that need.

You and your father are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

hanabel · New User Joined: 07 Feb 2008 Posts: 5

Hi Brainman,
I appreciate your response very much.
I am rather exhausted, as I have a job and a 1-year-old baby and live 3 hours north of my father. I do have an amazing husband, wonderful friends and a mother who--though no longer married to my dad--is still friends with him and has been a great support. I also have a therapist who is really great. So in those ways I am so, so lucky.

As for people to help me with my dad directly, that's not as good a situation. I go every 1-2 weeks to NY for a couple days. My dad has a long-distance girlfriend who visits him and helps in a limited way, but I am the only person who is running all of my dad's affairs. He wasn't retired. His estate wasn't in order. I helped him take care of all that. I have helped orchestrate friends and people from his Quaker religious community to visit him. So he does have lots of visitors.

On a daily basis, my father--though not senile at all and very mentally young--is a lousy patient advocate for himself, and tends toward denial in his life in general. I spend every day on the phone with hospital workers, doctors, etc. Now he wants to go home in a week (he lives alone) and I am trying to respect that, so I am trying to set up his IV nutrition to happen at home, get him a daily care attendant, etc.

What particularly confuses me is that I have his doctors telling me that we should start thinking about hospice soon. I have Googled and Googled and cannot find anything on inoperable malignant bowel obstruction that doesn't say "palliative care." But my dad is acting like he is going to find a miracle research bowel dr. who will "fix his problem" and he will be able to eat and drink again and just be a normal chemo outpatient and get cured and go on with his life.

My dad's view seems so different from the view of his doctors and caseworkers. I find it emotionally confusing to prepare to think about hospice one minute, and then to listen to my dad be convinced he'll get his normal life back.

That was a novel. Sorry. This is all very new and confusing for me--he got his stage III diagnosis in October, and it was Stage IV by Christmas. It's been so fast.

brainman

Starting from the end.... it sounds like it has been very fast... no time for you or your father to adjust to his situation.

Do not worry about your "Novel" Smile

. It is good to read all the facts; makes it easier to understand your concerns.

I identify so much with your father's situation although there are many ways in which his story and personalities are different. Your father sounds like a fighter. Unfortunately, I am not. Even though it would seem that since I am a 15 year survivor of brain cancer and you might thing that is a sign that I am a fighter, I really do not know why I have survived. There have been many days in which I have wished that I had just died back then. So, no, I am not a fighter like your father.

Our similarities are in living conditions. I too live alone, am divorced with a good relationship with my ex, and my family (including my ex) live hours away. If and when I become sick again, I do not know what I will do for personal or health care. Believe it or not, I have named my ex as my health care surrogate. She has informed me that if I get to the point that I cannot take care of myself, she will move me back to where I used to live... near her if not into the same house with her Razz

. I totally agree with that decision; I cannot expect her to give up her home, job, and friends to come here to care for me.

Well, that is my Novel Smile

. I am not sure why I am writing all of this. Your father's story just brought up a lot of my own issues.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

hanabel · New User Joined: 07 Feb 2008 Posts: 5

Jim, you sound like you have a really good situation for someone who is living alone. Like you, my dad doesn't want me to uproot my life (impossible, as we own a house, I have a job I need and love, and cannot leave my child). But he also is very stubborn and is insisting, after the next round of chemo, that he go home. With his TPN (iv nutrition) and his G-tube with suction, with only a visiting nurse and a day housekeeper helper for part of the day during the week. He will be alone at night. His oncologist (whom I totally love) is very uncomfortable with this--he thinks my dad's situation is too medical and too complex for him to go home.

There's a very good sub-actute, small and personal nursing facility with stellar records that is willing to take him, and he can totally afford it, but he wants to go home. I can't blame him, but at the same time, I will be very worried that something will happen in the night and he will be in danger. At the same time, I wonder well... if he's really terminal, perhaps it's better that he dies at home, feeling as normal as possible, where he wants to be, rather than in a nursing facility or the hospital.

Even if you're not a fighter, Jim, you've done a good thing in running these forums and sharing your story. So you're around to do this helpful, wonderful thing, and that's amazing.

ksplat

Hello Hanabel
Well my dear...your dedication & love for your Dad is inspirational, really, whilst you are still caring & attending to the needs of your own life, work, husband, child & 3 hrs from your Dad!! Your story is inspirational to me.
I admire you for so many things, including the fact that your respect for your Father's wishes has remained strong & steadfast. Your Dad's strength & resilience is also an inspiration.
I feel your Dad's wanting to return home should happen (with the assistance of nursing support of course). It seems the nights alone are really the only obstacle to overcome. In the US do you have a service available for the infirm where they wear a beeper around their neck at all times & can push the alarm at any time & they will receive a phone call from a 24/7 medical service that can attend to them in emergencies? We have this available in Aust....my Mum is a carer for an 84yr old woman who lives alone. She has one of these alarms with her at all times in case she needs assistance during the nighttime when she is totally on her own. If you could seek out a service like this I believe it's worth a try to get your Dad home. Even if as you say his condition is terminal I can appreciate his need to be in his own home until he passes.
Also in regard to your question about your Dad's belief that there is a "bowel" specialist somewhere out there that can be consulted & can actually operate on your Dad....well this is worth a look I believe. How do you know until you try? I know you can now receive consultations "on-line" from some of the larger cancer centres, & it's a matter of you finding & contacting a suitable specialist centre & sending your Dad's medical notes & scans (electronically) & receiving a 2nd opinion. I'm sure you would be happy to address your Dad's wishes this way.
I do hope I haven't confused you too much with my opinion. Maybe some "food for thought".
I should add (probably should have mentioned it 1st in fact), I have no experience with this type of cancer. I have loads of empathy though & personal experience with a stubborn father (who has since passed away, God bless his Soul), I have also suffered my own serious health concerns with kidney failure & my Bro is currently fighting a Gr IV malignant Brain Tumour.
May God be your guide & strength during this very difficult passage of time.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

hanabel · New User Joined: 07 Feb 2008 Posts: 5

Aussie Angie,
Thank you so much for your kind post.
I am starting to feel more comfortable with the idea of letting my dad go home. If things go poorly, I believe he will go back to the hospital. Your suggestion of an emergency call button is an excellent one. I will look into that, though he's so stubborn that I am not sure he'll go for it. But I can try!

My dad did get a 2nd opinion from a Sloan-Kettering (major NYC cancer center) doc, through a satellite office, since the wait for an appointment downtown is very long and it's hard for my dad to travel down there with all his tubes. I will look into whether the downtown office of S-K or Dana Farber or somewhere would do a 2nd opinion online. Anyway, my dad's S-K doc gave the same prognosis as his current oncologist. So that's why I think he's got a bit of the magical thinking going on. He thinks he can just Google and find a famous bowel specialist. When I Google "malignant bowel obstruction," almost everything that comes back is about palliative care, end-of-life care, etc. Not promising. Sad

If anyone knows of a cancer center that will do an online 2nd opinion in the US, please post it here!

Off to Google that... thanks so much, Angie. And I am very sorry for the loss of your father.

ksplat · Posted: Wed Feb 27, 2008 7:51 pm Post subject: How's your Dad?

Hi Hanabel
I was reading your last post & wondering how your Dad is doing? Did you finally get him home? What about a 2nd opinion? I am including a link for you which has been quoted on this forum many times. It may be helpful for you in seeking a 2nd opinion:
http://cancer.org
Thinking of you today.
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

hanabel · New User Joined: 07 Feb 2008 Posts: 5

Angie,
Thank you for checking on me.
My dad lasted at home for 30 hours, but his g-tubes and TPN were too complex post-chemo for him to deal with, even with help. He went back to the hospital and his surgeon consulted with a surgeon at Sloane-Kettering who said there's nothing they could do for him. Then he decided that if he can't get off the g-tube/TPN and enjoy food, then he didn't want to sufffer any more chemo. So after 2 rounds, he quit. On Saturday he moved from NY to MA to a hospice just 14 minutes from my house, and 5 minutes from his girlfriend's house. It's an amazing hospice--very home-like with just 6 private rooms--and they are helping him research anything more that might be done for him (he's still in denial but I also understand his wanting to check).

It's a very sad, painful time for all of us but I am able to visit him and be with him every day, and he's able to spend time with my son, his only grandchild. So I think it was the right decision, and he's getting tons of personal attention and loving care there. I don't know how much more time he's got in him, but I hope that we are able to enjoy it as much as is possible.

Thanks again for asking. Best wishes to you and thanks for your support.

Han

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