Am I in the right place?
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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
Who said Canadians were so “nice”!?!?
Raye, anything to add?
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.
BarbaraAshlea,
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!
PamAshlea,
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, MarySo….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
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
Hi Asher,
I am on this site everyday, twice a day, but lately havent been too active posting. My father was diagnosed July 08, and we have had a rough fall and winter with this brutal Cancer, and I haven’t had it in me to comment, but this site had been a Godsend, not just for information, but for creating an inviroment that has made me realize I am not alone. I just need to tell you, you are an amazing young lady with an incredible outlook. My father is 74, and I have 20 years on you. I know this must be such a difficult time for you, but you seem like you have such an inner peace. You could easily be so angry, and you are not. Your father is very lucky to have your support. I wish you courage in the time to come.
BarbaraAsher,
You are young in age but mature in love and compassion. Sometimes the hardest thing is to let go and let God. You have done and given your Dad the most wonderful gift of acceptance. I know it’s hard to do but spend this remaining time by being supportive of your Dad and respect his wishes. You are a remarkable legacy that he will leave behind.
One resource I would suggest is to call or google your local hospice facility. They have some wonderful things to read online or you could pick up pamphets on palliative care. The most important thing is that he be kept as pain free and comfortable as possible.
Take good care of yourself and be kind to yourself. I know how hard it is to be far away. Keep in touch with your Dad as much as possible. He knows how very much you love him.
Consider yourself hugged tightly!
I’ll keep you and your Dad and family in my thoughts and prayers.
Pam
Asher….You are honoring and respecting your Dad’s decisions, which to me seems to be the greatest gift you can give him this, and lovng and supporting him along the way. You are wonderful daughter. This is a precious time for him and you.
Hugs
MarionThank you all for your opinions! However, at this time my father does not want a second opinion. Although there was some confusion about stage 2 diagnosis by his oncologist, the surgeon who initially opened him up to do the operation and then saw that it had metastasized has been quite clear about my dad’s current situation. There is not much they can do, my dad has accepted that fact. Thus, as his daughter, his fighter, I need to respect his decisions. He is rather coherent and able-minded to do so. At this point it is about making him as comfortable as possible. Thank you for the referral and your advice to seek a second opinion, but I doubt that another surgeon would see anything different, after all, they opened him up, and mets don’t lie. In part, finding this website has not been a good thing for myself. Though I see that it may be a source of support, it also has caused me to worry way too much at my young age. I am far away from my father and that makes it difficult so this is the only control I have. I find myself looking for any symptoms of impending death, wondering if he is going to be okay because I do feel the end is near. But, I know I can’t worry…just as I wrote to him in a recent letter, it is not my choice when he leaves this world. It would be selfish of me to be angry about this poor prognosis. All I can do is make the best of the time I do have left with him. I can’t imagine how overwhelmed he must feel. I can see that a large part of him has given up. That is what hurts the most. If there is one thing you all could pray for, it is that he can find some peace in all of this chaos. Blessings and thank you for your kindness.
Ashlea,
On Marion’s suggestion I’ve sent you an e-mail. Please have a look at your e-mail or if you’re here first give me a call at my home number, 519-351-4406.
We have much to discuss about your father and the mysteries of how the Ministry of Health works in Ontario. You need help now!
Marion gave you a name of a specialist in Toronto and I know a specialist at University Hospital in London Ontario that can set you straight, as well as an oncologist that’s now a believer that CC can be treated a lot more effectively than previously thought.
What you and your dad are going through is typical of our medical system. ( are any of my American friends listening to this?? )
Give me a call as soon as you can.
Raye Field 1-519-351-4406 or raye.field@yahoo.com
Thanks for the referral Marion.
Asher, yes, I too had a tumor that burst in October. I am 60 and on chemo since Nov and don’t have any pain or side effects from the chemo so far. With 5 infusion treatments my main liver tumor has shruk by 50% and the same is true for the small spots that ended up in the abdominal cavity due to the bursting of the tumor. There was a lot of liquid then and I don’t understand how it is now solid. I just heard from Dr. Giap who reviewed my scans and he suggests I stick with chemo for now since it is working. I have an appt in March at the Scottsdale Mayo clinic. I agree, get a few opinions.
Asher….on this board we have seen several people with CC progression to the lungs. In fact, our Jeff had the fluid drained from his lungs I believe, more then once. You may read up on several discussion by entering the word “lung metastases” and “ascities” in the “Search Function”. The fluid retention around your Dad’s abdomen may very well be ascities and this would explain the weight gain, which, from what I have learned, can be quite substantial. This also can be drained. Has the physician prescribed any diuretics?
Just a little update: Dad came down with a nasty cold last week, his GP sent him for a CT scan of his chest. Is a cough/cold reason enough to think that the CC could have spread to the lungs? got a CT scan done which shows the initial mass on the liver to have grown to 12×12 cms. They also found 5 new pulmonary nodules on the lungs, 2 which are 7mm and 3 which are 5mm on the other lung. So it is clear that it has mets to the lung. Guess we didn’t expect this so soon. What should we expect next? Also, I am not sure why he is gaining weight? There is definitely evidence of fluid in his abdomen but it’s not that substantial. Why else could this be? They sent him home with nothing but a written report of the progression of his current situation. I have made sense of some of it, but it is Dr. language.
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