Re: Am I in the right place?

Dear Marion, Pam and Barbara!

Thank you so much for the encouragement and the kind words of advice and affirmation! Now I see why I was directed here! We have dad on a list for hospice care and I try and give a call every now and again so they know we are still around for further down the road! Squeaky wheel gets the grease ya know? I understand it is a wonderful blessing when it comes time and hospice care can take a huge load off the family. Right now my father lives with my brother who doesn't really know the ropes and has care come in every couple of days. It is nice to know SOMEONE is at least there if anything were to happen. I feel like you ladies all really care and I hope you know that God is smiling down from above for the way you conduct yourselves and put your wisdom where it counts, to help people who need it! Like moms I've never had!

Ashlea

27 (edited by Asher47 Tue, 10 Feb 2009 22:46:16)

Re: Am I in the right place?

So....I was really going to let it be already, but it seems like I need the advice of the experts again! Just a couple days ago, when my father got the results from the CT scan indicating 5 new lesions in the lungs, (mets from liver) he also met with the surgeon that did his bowel resection and asked if it would be possible to do a colostomy reversal. The surgeon promptly said "sure" after only 3 months ago saying "there is no sense us doing a surgery that you could potentially not make it out of when you don't have a lot of time left." Makes senses right? However, I have seen my dad suffer with his colostomy. He spends endless hours in the boy's room and it seems to be the only thing on his mind. Just to give you an idea of my dad though, he has never been all that adventurous, so in a sense this colostomy has given him more to talk about. But I do see that it has given him trouble. Anyways, I was shocked to hear that the reversal was given the green light for the 19th of February! Especially since the onset of ascites (gained 40 lbs), a cold he has been battling for 2 weeks, lack of sleep etc. So I got his permission to call his GP and make sure they were aware of the newest changes, which they were not. Because my dad doesn't really understand where he is at, or else he doesn't want to believe it (which isn't necessarily a terrible thing) he has not conveyed to his doctor most of these happenings. So they just put him on antibiotics and ordered him another CT scan of his chest to r/o pneumonia, that he had tonight. Yes, I am getting to my point. My dad is a big fan of band-aid solutions. To get anything he wants he will push until he gets it, and avoid communicating details even if it is not what is good for him. He had a bad cold, a perforation in his colon as well as cancer when he went in for his initial knee replacement surgery but he never said a word even though he knew something was wrong. Now he wishes he never did the knee replacement because it gives him more pain than the cancer. My concern is that he will regret the reversal. He thinks it is such a blessing, an instant cure but I am worried it will not be. If he ate better the colostomy wouldn't give him so much grief. He has no intention to make lifestyle changes that would be required for the reversal yet he wants it. (Oh my, I am seeing some clear role reversals here as I type this)

My question: I know cancer patients get surgery all the time, to put in a stent or remove a tumor, but this is different. Is a man at stage 4/5 liver cancer with lung mets in any condition to survive this rather invasive surgery??

AND Would a surgeon do a surgery he knows could completely debilitate a patient/patient will not survive if it is something the patient really desires? I know it is terrible of me to think this, but sometimes I wonder if they just want to shut him up.

Ultimately I cannot save my dad from himself, no matter how irrational I think this is, and perhaps I have nothing to worry about and the doctors do know what they are doing. After all, whos to know if tomorrow he will take a turn for the worse, or the next day or a year from now. So in effort to not worry what will be or what might be, I am trying to let go, but it is difficult. Of course I want the surgery to happen and be a success. Doesn't he deserve the dignity to live the remainder of his life without a bag of feces hanging from his abdomen? But at what price is my question...his life?

Thank you in advance for your help!

Ashlea

Re: Am I in the right place?

Ashlea,
    I am really surprised any surgeon would agree to do such a major surgery with your Dad in the condition that he is. It's interesting because we have had several non-surgical Drs. comment about my husband's surgeon being very thoughtful and not overly aggressive like some others they know of. I guess they feel that there are surgeons that will operate regardless of the consequences if that's what the patient wants. I don't really know how to counsel you. My husband needed shoulder surgery 2 years ago and one surgeon pretty much came out and asked(after being told about my husbands diagnosis) whether he really wanted to go through all of the rehab etc if he had a limited amount of time to enjoy life.He went ahead and had the surgery and has done great but he was in good shape when he had it done. Your Dad doesn't seem to be at all. I'm sorry Ashlea. I can't imagine all of you young people having to go through this worry and heart ache with your parents. I wish you the best. I guess it will ultimately be your Dad's decision. If you can I would just somehow make sure these surgeons are aware of your Dad's condition.  Take care, Mary

29 (edited by Cherbourg Wed, 11 Feb 2009 05:59:48)

Re: Am I in the right place?

Ashlea,

I can't believe how poised you are at the age of just 23.  Your Dad is so fortunate to have such a great daughter.

I know you are struggling with a lot of "what ifs" right now.  I would strongly suggest you schedule a meeting with his surgeon and other physicians and voice your concerns.  Or speak with his nurses.  They enter concerns and opinions of family into the medical record nursing notes.  (And doctors DO read these).

Do you have your Dad's medical power of attorney?  If so, that would allow you to actively communicate on his behalf.  The HIPPA rules that governs hospitals sometimes make it hard to intervene without the health care power of attorney.

That said, the doctors NEED an accurate history about your Dad in order to do the best for him.  Although as Mary said above, ultimately it is your Dad's decision.

Hang in there and know we are always here for you!

Hugs!
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Am I in the right place?

Ashlea,
I am torn by your situation and my  heart goes out to you.  My mother has had a Colostomy bag since she was 28, and unfortunately her digestive situation was so severe at the time that too much of her organs were removed to ever be a canidate for a reversal surgery.  She would have done whatever it took to not have to live the way she has had to live for 40 years.  However, my father is the person with the Cholangiocarcinoma and I can tell you, he had hernia surgery(lazer  out patient surgery) a few months back and even that was really rough on him.  I think in this case, if it were me, I would go with my fathers decision.   I know my father has allready stated, that he wont have anymore surgeries.  I dont know much about the reversal surgery, I never researched it since I have always know we were not canidates.
Definitely talk to the Drs.  Be strong.  Peace and Prayer.
Barbara

The  Lord is my shephard

31 (edited by Asher47 Fri, 13 Feb 2009 12:01:41)

Re: Am I in the right place?

Thank you all for the continued support, Barbara, Mary and Pam!!

My brother is my dad's medical/power of attorney and he is not as introspective as his sister is unfortunately. As I said before I want to respect my father's wishes, I guess no matter how absurd they seem to me. I have voiced my concerns with my dad but he doesn't seem to be with it. Because he has gained 40 lbs he assumes he is in "better shape" than most cancer patients. But as I alluded to, a lot of it is fluid retention but he won't listen. Why should he have to know all the signs of what is to come? I want to protect him from that, but then if he thinks everything is butterflies and rainbows and he goes to have this surgery, I really haven't done him any favors. The CT scan that reported 5 new nodules on the lungs, he is convinced is his cold! In a sense he is right...the pneumonia he has and persistent cough seem like clear indicators to me, and the doctors, no sorry the nurse, has told him it was metastasis to the lungs. Even after he for the first time EVER (and I am not exaggerating this point) asked me what I wanted...whether or not I wanted him to get the surgery, I don't feel he truly took to heart that I didn't want to see this hasten the inevitable. He feels like he needs to do this and he is asking my brother and I get behind him on this. I haven't been able to yet. So is this a question of the doctors ignoring the truth as well? Either they are humouring him, or they truly think this is O.K. to go ahead with surgery? I guess I will never know unless I talk to the surgeons themselves....I just wish my dad would advocate for himself. I did talk to his GP to update them on his situation, they mostly do over-the-phone prescriptions and that so they haven't even seen him in the last month! I hate being so torn. My mom who is no longer with my dad agrees with me, that this may do more harm than good, but she won't do anything to intervene, probably because she can't. I feel moments of peace, that this is his decision and I am okay with whatever outcome, and moments of fight where I don't want to take a lay approach. The hardest part is I am not there! So I am doing the fighting over the phone. If only they could see my mean face!! haha smile 

Who said Canadians were so "nice"!?!?

Raye, anything to add?