HELP please with anything!
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Aneux,
It sounds like you have been carrying a very heavy load for a very long time. Please reread the caregiver’s bill of rights. (Lainy recently posted it again). It is more important than ever that you take care of yourself, because you will not be able to help your loved ones if you are spent. Sometimes, my husband and I don’t even need words, we need time just to cuddle and hug each other. Before my cancer dignosis (May, 2007), it was easy for me to ignore my wants and needs if I believed my loved ones had needs I could meet. But always giving and never receiving leads to an empty vessel. One of the things I’ve been learning while dealing with my cc is that it is wise and can even be fun to let others take care of my needs some of the time.
My Mom recently passed away, too, so I understand the feeling of numbness and just putting one foot in front of the other to keep going. Please let others help you in this difficult time. I am praying for you and your family.
LouiseAneux,
I am sorry to hear of the loss of your mum. I have been caring for my mum for over 5 years and was also my dads carer throughout his fight so I know the pressures that you are under right now.
As for the not wanting to talk, maybe you could talk to one of the doctors there and see how they might approach this. My dad was not the worlds biggest talker, especially about all of this sort of stuff. He also had photo dynamic therapy back in 2008 after his diagnosis and that was the only treatment he had and was he was not able to do chemo.
I know what you are going through right now and my thoughts are with you right now.
Gavin
Aneux, it sounds like you have been right on top of things. Feel free to come vent here any time or to ask questions. You can also find some answers on our search device at the top of the page. When I am frustrated about Teddy’s condition or feel I am loosing it, I get in the car with my favorite get happy CD MaMa Mia and I drive a while singing at the top of my lungs and it really helps me. Meryl Streep, I am not! Maybe people don’t realize it but just typing out their frustrations does release a lot. I know you will be getting some more heartfelt replies. Stay strong and visit us as you like.
I am very new here but it seems to be a wonderful support system. Maybe he was trying to use “laymens” terms whith the breaking down comment. But, I agree with getting a second opinion just for peace of mind.
Sorry for your loss, please dont bottle it up though. Go somewhere private and let it all out.thanks for the reply, lainy. the doctor (the g.i. doing his ercp) says the klatskin tumor (he has others, including the main huge intrahepatic one) is kind of eating away at the wall of the duct, i guess, because he said it would show on the fluoroscopy as the contrast escaping out into the abdomen, and would not be good at all. howard was diagnosed nov. 2008, and we have had at least 2 second opinions that i can recall. we’ve also been to virginia to do photo-dynamic therapy with dr. kahaleh. and he’s been on gemcitabine since the very beginning. i think he may be hitting cancer’s equivalent of a patch of ice. i should know more shortly, i’m just freaking out and overloaded and alone at this moment. thanks SO MUCH, your quick reply already feels like a friend sitting here with me.
Dear Aneux. How terrible for you loosing your mother and on Xmas Eve. Our prayers go out to you.
I have never heard the expression “breaking down” the bile duct. Where is his tumor exactly? Did you ever get a 2nd opinion?
I have a thought about his not wanting to talk. Perhaps if you called Hospice they could help you with what to say to him to start him communicating. I feel it is so important and they are committed to helping in any way. Perhaps you would not feel so alone if he was discussing this with you. You must have the weight of the world on your shoulders. Please keep us posted.everyone, hello. i have not been posting, i have been reading at times, but it has been a period of nonstop, i know you know what i mean. i don’t even know what to say, i just need to feel close to people who really, REALLY understand how i feel. i’m at ochsner medical center in new orleans, waiting for my husband to have yet another unscheduled ERCP, but i think it is getting closer to really dire circumstances. i guess i’m scared. we’ve never really talked. he doesn’t like to think about what will happen, and i don’t push it. i’ve also been taking care of my mom for five years and she just died xmas eve. i am so happy she’s up there with my dad, but i cannot even stop and think about her because i am scared i’ll just breakdown and not be able to take care of howard. i am just going to do what i have to do, float along, and process later. it’s been working so far. our doctor just told us he thinks what’s happening right now is that the tumor has started breaking down the bile duct itself. i know that’s bad. but how bad? has anyone had this experience and could share with me? it’s such a horrible thing to ask someone to talk about. this disease really sucks. thanks all, i really appreciate it.
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