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Dear Mom3, you have done and are doing an amazing job as your Dad’s Caretaker. You just accomplished one of the hardest things to do and that is to bring it all out in the open to Dad. I am glad your siblings are coming in for a family “sit down” where everything can be discussed openly and don’t be shy about asking for help. Methodist Hospital is also a good choice, our Tiffany went there and highly recommended it.
I asked for strength.
God gave me difficulties to make me strong.
I asked for wisdom.
God gave me problems to solve.
I asked for prosperity.
God gave me brawn and brain to work.
I asked for courage.
God gave me dangers to overcome.
I asked for patience.
God placed me in situations where I was forced to wait.
I asked for love.
God gave me troubled people to help.
I asked for favors.
God gave me opportunities.
I received nothing I wanted.
I received everything I needed. By Aaron Hoopes
.I’m glad your siblings are going to come in. I hope they will be supportive. This shouldn’t fall on just your shoulders.
Lisa
So, we had the talk. It was hard and emotional. Dad hasn’t decided what he wants to do, but he did understand and remembers what is going on. He wants to wait until all his kids can be present, so I am working on getting my sisters here.
I mentioned to dad that if he would like to talk to someone pastor/counselor I would be happy to set something up for him. I told him it would help if he could just talk to someone, not that they have to respond, just so he can get it out. He is thinking on it, but I really hope he does.
I did some brief research and it seems Methodist may be our next best option for a second opinion. I put a call into the nurse there and am going to talk to her about their program/treatment center for cc. Anyone hear or have experience at Methodist? May make this another thread.
I think it is a blessing to have my littles as they keep me so busy I don’t have time to think about things. I tell my husband bedtime is the worst part of my day, even with only 4-5 hours sleep, as it gives my mind time to think and wander. This is usually the time it hits me hardest.
Thank you all for the feed back, this forum is so helpful. This will be my outlet as I try to remain strong for dad.Just to be clear, a POA is different than a durable power of attorney for health care, although a regular POA is important too. The hospital probably has the DPOA form. It’s really something we should all have. When I was diagnosed, I took care of that. Should have years before, but hey, no one ever does it until they are in crisis.
I don’t know other hospitals in Houston if MDA isn’t an option ( although, ironically, I was born at hermann hospital).
I can tell you Baylor hospital in Dallas (main branch) sees a fair amount of cc patients. I am being treated there. I feel I’m getting top quality care. My oncologist is dr A. David McCollum.
Mom3, I am sorry you had to come here. It’s a tough thing to deal with, no matter what the circumstances, but with small kids it’s even harder.
My suggestion is to try talking with an advocate at the insurance company. I had one that fought for me when I had AETNA. You might be able to get to MDA that way. Or see if Dr. Javle is willing to consult with a team you CAN go to.
Hopefully something works and you get some help!Wow! You do have a lot on your plate. Being the caregiver and decision maker is a full time job on its own, but add in a toddler & 2 infants is more than most could deal with. I so admire your strength and fortitude. I know platitudes don’t help or change things, but I’m hoping this will help a little.
We never know how strong we are until being strong is the only choice we have.
As for the second opinion, I know others who had to deal with insurance issues and some have discussed it with the place in question and they have worked with them. I’m hoping others who have had some experience with this and have more knowledge of the doctors & hospitals in your area will chime in as I really do feel he needs to be seen by someone with more knowledge of this disease as soon as possible.
Sending you the strength of everyone on this site and hoping you can work this out for the best for your dad and also you and your family.
Love & Hugs,
DarlaMy dad (66) was seen at Memorial Hermann, I tried setting up an appointment with MDA, but since his insurance is not accepted there they want $32,000 down! If we had this kind of $$ we would do it, but we don’t! IT would certainly ease my mind if I had a second opinion. Any other hospitals in Houston you would recommend?? I know MDA is the best, I wish they would work with us.
I do not know if it is intrahepatic or extrahepatic, no one told me. I did put a call into the dr to find out. We did not get a biopsy due to dads ministrokes, but I did ask the Oncologist what stage she thought dad was in and she said with his symptoms, including hypercoagulability, she believes it is stage 4.Before Dx dad always said he did not want to be revived, that he didn’t want to go through treatment if he ever got sick. After his Dx he said he did want to persue it, but then again he didn’t. This makes it hard for to just accept Hospice.
Yes, I have POA.
I am also worried about my daughter who is 3, she asks if grandpa is all better, I tell he is still sick but better enough to come home. I have two 4 month olds at home too and I get said when I think their grandfather will not see them grow up.
mom3……I have little to add to what has been said, but wanted to point out that certain cancers are associated with venous thrombosis and hypercoagulability, and this cancer is included. You may look it up: Trousseau sign of malignancy.
Hugs,
MarionMom3,
I too am sorry to hear what you and your dad are all dealing with. Glad you have found us, but sorry you needed to. You have already been given some good information. I too feel that a second opinion is needed as soon as possible. Hopefully with someone more familiar with CC. It sounds like you are a good advocate for your dad and that he trusts you to make the right choices for him. Good luck to you. Give us an update when you can. You have found the right place for help, support and information regarding this disease. Take care.
Darla
Dear Mom3, welcome to our family and I am so sorry to hear about your Dad and what he has been going through. I have not heard of CC patients getting strokes. How old is your Dad and where is he being treated. What kind of CC does he have? Did they stent him for Jaundice? I just have a weird feeling and I would get him somewhere ASAP for a 2nd opinion, preferably MDANDERSON. Just ask the place he is being treated for a CD of all his Scans, Labs, Tests and reports. Call MDA and schedule an appointment and take the Disc. You are not alone in this we are all here to help. Your Dad has all the love and confidence in you so he will gladly cooperate but I do believe that 2nd opinion is needed ASAP. We are all here for you and you need to be very strong for the ride on this rollercoaster we call CC.
Whew. I’m so sorry that you are dealing with this. I don’t know that there is any good way to bring it up, but hopefully, your dad will want to have this conversation. You say that he is leaning on you for decisions. Are you his next of kin? Do you have a durable power of attorney for health care from him appointing you to make decisions? It’s very important to have that if your dad is lucid to sign it. Hopefully that will make decision making easier.
Hospice can also help you keep him comfortable.
Lisa
Mom3 –
Welcome to the best little family no one wants to be a part of. You certainly sound like things have been crazy. My husband clotted after his surgery but that was more a surgical problem than anything else. As far as the multiple clots and strokes, that can be a product of the cancer and the changes in makes in the body…..how the body responds to it.I certainly don’t profess to know the answer to how to talk to your dad and make those decisions but I can give you some advice….in my real life I am a Home Health nurse and unfortunately have to have talks like this at times. I would suggest rather than specifically telling him he has cancer and going through the emotions of that again (with short term memory loss he may not remember he has cancer as you already know), I would phrase it more generally. “Dad, if you were ever diagnosed with a terminal disease would you want to be comfortable or would you want to fight to the end?” or “If you had a choice between quality of life or quantity of life, what would you do?” Hopefully that would give you some idea.
The other think is to think back about conversations that you may have had with him about someone else dying. Has he ever said, “Gosh, I wouldn’t want to live that way.” Or “I would hate to be so sick with chemo, radiation (or whatever) and not have a life.” Sometimes they leave us clues in their conversations.
Then lastly ask yourself – how would dad want to live? Wound he want to live like this or would he want to be more active?
It’s tough. I have been there with my dad many years ago when he had a massive heart attack. They tried reviving him but I knew he wouldn’t want to.
Where is you dad being treated? Is it intrahepatic or extrahepatic? How old is he?
So sorry that you have to go through this.
Hugs,
KrisVMy father has been suffering from blood clots the last two months, every two weeks he was having either a stroke or clots in his lungs/spleen. Noone could tell us what it was, they thought it was his heart and kept insisting he wear a monitor for a month, then he kept returning to the hospital. After the last stroke, they life flighted him to another hospital where, after two weeks, they diagnosed him with CC. My father is still mobile, the only effects from the strokes is lose of peripheral vision in one eye, slightly slurred speech, and short-term memory loss. They are blaming the clotting on CC. Has anyone else experienced this?
They tell me dad has 6 months or less and dad directs all decisions to me. I try to do what I think he would want. We tried to do a biopsy and stent implant, but after 8hrs off of the blood thinner he had another showering for ministrokes. I don’t want to put him through that again by making a second attempt! Worse still is the Oncologist says even with aggressive treatment my dad may only have an additional 2 weeks to 3 months!
Now they tell me hospice is the best choice for him. I want to sit down with dad and ask if he remembers what is going on, and find out what he wants to do. How to bring this up to someone who may be learning about it all over again??
I feel so helpless and don’t know where to go from here.
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