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Feeling Overwhelmed

beep
Posts: 18
Joined: Apr 2004

A very dear family friend (I call him my Dad), who is 68, has just been diagnosed with brain cancer. 2 years ago he had rectal cancer, had surgery, was doing great for over a year, when it returned to his shoulder, in his humerus bone. They did 3 weeks of radiation, it is still there. A week and a half ago he fell at his home, and then had to be admitted to the hospital. They did a CAT and found 3 masses in his brain. He was doing so poorly, couldn't walk even. They have him on steriods and suddenly he seems his old self, walking, he thinks he is fine even. His doctors seem to tell us everything and him very little. He is on week one of 3 weeks of radiation, just to the tumors in his brain. They are now saying he can do chemo with the possibility of extending his life maybe a year, but he will be very sick. He wants to do the chemo anyway. He is starting to get cranky, from the steriods, and demanding, wanting to be driven all over creation. I just want to let you know that he has medicare and an HMO supplemental, and that he had pain in his shoulder for nearly 6 months which the doctors knew about but completely ignored. Finally, when it broke his humerus bone, they did a cat scan and found a very large tumor. I feel like they have completely neglected him, that if they would have begun chemo right away, he may have a chance, but fear now he doesn't have much hope. He is stronger than any person I have ever seen. His doctors thought he'd be in a coma the day after his fall, and instead he was up ready to go home. They say it is the steroids though. I'm going to have to get help from his real family in NY soon, because I can't give him 24 hour care. I am feeling guilty about this. He is staying with my sister at the moment but wants to go home and I am terrified to let him go home. We are setting up a lifeline for him to wear around his neck, to call for help if he should need it. Until his fall he has not let us help him with his medical care, and I think if he would have let us sooner, I would have insisted the doctors check out his shoulder pain 6 months ago and he may have a chance. His HMO doesn't care though, they really don't. They have been giving him morphine for 6 months, the hell they didn't know his cancer had returned to his shoulder! I am so angry! I am babbling on now, so I'll go. It helps to have this board to get it all out. I don't know what to do next. I feel like I cannot handle this at all. Does anyone else have this experience with cancer spreading to the bones and brain? Is it realistic to think radiation will do a damn thing? Will chemo even help? I have so many quesitons, and have no faith in his doctors and don't even want to speak to them right now. I feel like they have sentenced him to death. I feel so bitter. Sorry to be so long.

Lee Ann

Galliano
Posts: 46
Joined: Mar 2004

Dear LeeAnn
I just wanted to say 'hello', and please don't ever feel like your post is 'too long'...have you ever seen some of mine? :)
Sometimes the hands get on that keyboard and the fingers just want to fly....I guess we need to vent sometimes more than other times. It sure always makes me feel better, and hopefully it helps you too. I'm sorry to hear about your friend's conditions. I've grown to have a hate/love relationship with the medical industry. I wish I had some good advice for you, but I don't; I'm also dealing with the up/down sides to similar doctors, tests, hospitals, & billing depts. Hopefully someone else here will respond to you soon with some words of wisdom. I just happened to peak at the board and since it hasn't been too long since you posted, I thought I'd try to send a verbal hug your way, so here it is.. H U G
Hang in there, and just do the best you can. Your friend is so lucky to have you and your sister in his life. I hope his real family will be able to get closer to the situation soon. Best of luck to all of you. I'll keep you in my prayers.
Pam

layne34
Posts: 17
Joined: May 2004

LeeAnn,
I hear your frustration with the medical community. Like your 'Dad', my husband has just completed week one of three of whole brain radiation for brain masses. He has stage 4 nsc lung cancer. It took about 1 1/2 - 2 months treatment of "pneumonia" before they figured out it was lung cancer. They treated the initial complaint, treating but not even testing for pneumonia. It was only after the 2nd chest CT came back worse than the first. We, too, will do chemo after the radiation. I have no other option than to give my full belief that the radiation will help.

I do hope his family will be able to help. In our situation we are going to put our house up for sale to move closer to my husband's family. If your Dad's family can't help, contact the local chapter of the American Cancer Society. They should be able to find who could help.

Don't be too hard on yourself. It is okay to have any of the feelings you end up having. Try to keep clear on where the feelings come from. I have thought I felt frustrated at my husband, but it was really the cancer, and my own health issues. I am also trying to remember to not give into the terminal side of this until my husband says that is what he wants. As long as he and your Dad want to fight then fight is it. Listen and learn from the doctors, but keep faith in that which you hold close to your heart and your love for your Dad.
Peace and (((hugs)))
Layne

BionicKitty's picture
BionicKitty
Posts: 15
Joined: Mar 2004

Hi... My mom has lung cancer, which has spread to her brain, her adrenal gland, and now a new one in her neck somewhere, plus her lymph system. She is on steroids too, which are driving us both nuts. She also wants me to drive her all over creation as well, and gets really testy over the smallest things. She can't sit still, and so when I call her, she drops the phone 6 times while trying to eat her lunch and make tea all at the same time. I get very irritiated that she gets obsessive compulsive about things, but then I try to relaize its meds, and tumors, and well, it's cancer. It Bites, actually. The whole process stinks, and it's not fair. She is getting radiosurgery for all her tumors, which is working to kill the tumors, but does nothing for the spreading of the cancer. She wont do chemo, and at 73 , I don't blame her. She has outlived everyone's predictions, and refuses to believe in the word Prognosis. She is defying nature , but is quite angry and envious of basically everyone on the planet that is well! I would like to have my sweet , gentle , focused mother back, to help me take care of things like she always has, but I guess things have turned around, and now I am the parent in a way. I sure hope her mind comes back though, I am having a hard time explaing things like what day or time it is over and over.
You might not get this, but your letter inspired me to vent as well, and I just want you to knowI feel as you do about the medical people and the red tape. They sure don't make it easy to be critically ill these days!
BionicKitty

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