Jump to content

amieb

Members
  • Posts

    20
  • Joined

  • Last visited

Posts posted by amieb

  1. I can't believe I am already asking this question. Dad was only diagnosed in Feb. And now I am sitting here wondering when the end is coming. I have never walked this path with anyone and wanted to know if anyone out there had advice about what ot expect.

    I am enjoying my time with him. I spend all day and all night sitting next to him. He is weak, barely able to walk. He cant really control his bladder and I'm not sure if that's the meds or something more. He is a skeleton and doesn't want to eat anything. He is drinking less. I am taking every day as the gift it is. I sit by his bed all night watching and being there for him. When the sun rises and he is still breathing I say a prayer of thanks. I don't need to be told anymore to enjoy him. I feel like I need to be armed with info on what is going to come and what I need to be ready for.

    I am really not ready to say goodbye. There are a few hours a day when my father shows his face away from the ugliness that is the cancer that is eating him alive. I want to believe I have another month with him. But I also want to be ready for if that is not the case. I want him to be comfortable. And I want him to be at peace.

    Thank you for the help.

  2. I'm glad your father is fighting. I can appreciate that and am in constant amazment at the tenacity of cancer patients.

    The bothersome thing in your post is that the only pain med they have him on is Tylenol. If I've learned nothing else in the caregiving of my father, it's that the pain in the evil and it must be beaten out. There are 7 ways to combat pain and opiates are only one of them. And there are pills for everything. I would talk with a pain management person about different options. If they still give you the run around ask to talk to someone in hospice. I know your father isn't there yet, but they have the best ideas about keeping people out of pain and they have seen every variation out there.

    I'm so sorry you are going through this. You are in our thoughts and prayers. Keep your chin up and love every day you have iwth your father. They are gifts.

  3. I agree- focus on the fight. My dad constantly wanted a prognosis but never came out and asked the onco so he was never given one. We researched everything from one year to one month. I figured the best thing to do was keep the nose to the grindstone and keep moving forward.

    There is always a good and always a bad side to news. I figure, not hearing the bad news is okay once in a while. Gives us something to work towards.

    I am sending positive thoughts to you and your Hank. Good luck in your battle. Go kick it's butt!

  4. Thank you all so much for your kind words. We are meeting with the nurse today and I hope my dad likes her. It's kind of like a date, in a way. Here is the woman who will walk us through the hardest thing we have to do.

    Dad is in better spirits knowing that he has made a decision. He keeps saying he is glad the wheels are in motion and things are happening. I can't be glad yet. It suddenly is so real to me.

    It means a lot to me that there are so many people here who take the time to write. It is a beacon to me, to be able to log in and read the advice and kind words of so many. I love the idea of thinking he is on an extended trip. That is probably how I will live the rest of my life. I will let you know how it goes. Just wanted to thank you all so much.

  5. What a difference a week can make. On Wednesday dad's oncologist suggested we not do chemo, as dad's cancer is spreading rapidly and chemo will only weaken him more. We were caught a little by surprise. Kind of feel like they are giving up on us.

    But dad's moved forward with what he wants to do and has decided that hospice is the next step for him. He doesn't want treatment and the pain of extending his life as it is now. I'm here looking for what we can expect with hospice. I have done the research and kind of have an idea- but everyone here has such experience with everything I trust you more than the internet. How can I get everything I can from the hospice program and what can I ask for?

    And any final words of advice on how to spend the final weeks with him? What did you do to remember everything? Did you make a book? Have them write a letter? Take pictures? Record anything?

    I am so scared I am going to forget him eventually. I'm going to forget how he smells. What he sounds like. How it feels to have him be a live next to me. I just want to make sure to get the best out of him that I can while he is here.

    I can't seem to stop crying. I don't even know what to do with myself. Can't seem to be more than five feet away from him. I just know the end is coming and that scares the hell out of me.

    Thank you for your advice and anything you can offer. I'll continue to read the posts other people have written who are in the same boat.

  6. How do you know if it is just a "bad day" or if he is getting worse? How do you know when treatments are not worth it? How do you know when to stop fighting and just be comfortable?

    He is not ready to stop fighting. But every day I see him get worse and I am doing everything I can without him getting any better.

    Any help? I read him all the survivor stories from this forum and they made him smile. He wants to fight. He wants to survive. I just want to make the right decisions to let him do just that.

    Thanks

  7. Thank you Ned. Your mentality that it is already there and the scan is going to just reveal it helps a lot. I will say that to dad tonight and maybe that will help a little bit. You have been a constant form of positive energy for me and I thank you heartily. Hope this finds you well.

  8. Dad finished his first round of radiation today. The pain is still there though. He is on oxycotin and that seems to help. And the Zometa is helping a little with the bone pain. Anyone have any idea how long radiation may take to start to help? We hear everything from 4 days to 3 weeks. I'd love to have a little bit of a timeline. (Although we all know that with cancer there is no such thing as a timeline.)

    And he goes in for an MRI on Saturday. How do I not be scared of what it may show? How do I stay positive when the scan may show spnal mets? Dad is being so positive and is fighting like a tiger. How do I keep that going?

    Thank you!

  9. Well its been almost a week and Dad is doing well with the Zometa. He had some bone achiness over the weekend but that has ebbed a bit. No nausea, which is great. Thank you for all the advice and help. It made a difference as I was helping him get through everything. This part of the treatment turned out to be not so bad. Thank you thank you thank you!!

  10. Thank you so much. It really helps to hear parents tell me what they did. I am not a parent so I don't know how to always do the "right thing". Emily came over and visited with dad for a little bit yesterday. I think it helped her to see that he is sick but is still alive and fuctioning. (and also that he is not avoiding her. They usually see each other once a week and she hasn't been over in almost 2 weeks) I am sure she was worried. She asked him about radiation and what it does. And then about chemo. Then she offered to paint dad's head brown again when he lost all his hair. She also offered her red sparkly eyelashes for when his eyelashes fall out. :lol:

    I think it bothered dad to see her. She is so full of love and life, I am sure he was reminded of the life he is going to miss. Makes me tear up just to hink about it. Is there anything I can do to help him? Just let him cry? I wish I could take away some of the emotional pain he is going through.

    Thanks again for everything. I appreciate it all. You are wonderful :wink:

  11. Congrats on a tough decision. Although, it wasn't really that tough was it. When I found out about my dad I was home within a month. Am giving my two weeks at work on Monday. There is nowhere in the world I would rather be than sitting here with him and sharing this.

    It is scary and sad and a realm of emotions I didn't even know were possible. I echo what everyone else has said. You are given a great gift by being able to be there with your family. Enjoy it and take each day as it comes. There is nothing to do but think positive and enjoy the good days. Remember to take time for you too. I go for an hour run a day and that gets me out of the house and in my own world. Plus I can cry without worrying about upsetting him.

    Don't lose sight that you have to keep strong for her and your dad.

    I look forward to talking more with you. Please feel free to contact me if you need anything. My thoughts are with you and your family.

  12. Hey there,

    Dad's first round of Chemo is Friday. He is taking Zometa, once a month for a while. I am still researching the side effects and everything. Does anyone have any experience with this med?

    Thanks!

  13. I want to thank everyone for their kind words and prayers. It means a lot to me to come on here and reread the positive posts from everyone.

    Dad goes in for radiation #5 today. The pain is not getting any better. Getting worse actually. Everyone keeps telling us it might be another week. I don't know how that is possible. He gets weaker by the day. We have him on full time Oxycotyn (sp?) all day and then smaller doses for the breakthrough pain. That is working much better than the fentynl pain patches we were on. We also got some morphine for him to take right before he goes in. I don't know if that's a good sign but I hope it helps.

    The hard things:

    - Getting him to eat. He is kind of a bear about it. Does anyone know a good high protein/high calorie shake that worked for them?

    - Muscle atrophy. He has an awful case of edema and is barely able to walk now. Does this go away? We are getting some ortho socks for him and his walker comes today so hopefully that will help. I am just wondering how long to expect this to last.

    I read lots of stories about people living for a while with the Stage IV. That is the goal for Dad. Thanks for the continuing good thoughts.

    Love,

    Amie

  14. Thanks for all the replies. Dad goes in for his first radiation this afternoon. He is having a bad day with the pain and I am worried he is going to talk him out of it. I can tell today is a cheerleader day. Just have to keep him moving forward. I know he can do this.

    He is doing 10 15-minute treatments on consecutive busines days. I can only hope that help comes soon.

    Thank you for all the support.

  15. My sister is 10. My parents seperated when she was 3 so a divorced life is all she has known. She is very close to my father.

    How can I best support her in this? She gets a poker face about things and doesn't really open up about anything. I am worried about how she is taking all of this in.

    Dad is a pillar of strength in our lives. I will be able to look back and remember him the strong man he was. I am worried that Emily, if she watched him get sick, will only be able to remember him as ill. What is the right approach to this?

    Dad has told her he is sick. We have all sat and had the conversation telling her it was nothing she did and nothing dad did. We have opened the lines of communication with her and I know she knows she can ask whatever she wants.

    I just want to make this as least painful as possible and would love advice from anyone who has been in this situation.

    Thank you

  16. My dad is still in pain and they have him on a lot of drugs. Docs saw "activity" in one of his PET scans and are worried it may have spread into the spine. He was supposed to have an MRI Saturday but he couldn't lie on the table for the 40 minutes the test would take. He said he was shaking and crying, he was in so much pain. The radiology doc also wants him to get a brain scan. He confirmed it was stage 4 and all they can do now is keep him comfortable.

    His first appt with an oncologist is Wed and I am going to be there. His radiology doc wants to start him on treatments asap but they are waiting to hear what the oncol wants to do.

    My great uncle (dad's uncle) was diagnosed at this advanced stage and was gone within a month. I am very scared the docs aren't moving fast enough.

    I feel helpless down here. I am heading up north on Wednesday to be there for the appts. but what can I do to be proactive in this?

    Thank you.

  17. Hi Lyris,

    I am new to this whole cancer thing too. My dad was diagnosed only 2 weeks ago and there is so much to take in. I don't have much to offer expect a strong hug. I am sorry you have to go through this.

    Enjoy your mom and take lots of pictures. You might feel good recording the conversations you have with her too. I know when my gma passed after a short bought with pancreatic cancer, the thing I wanted most was to hear her voice again. That may help you.

    We are here for you and will do everything we can. You are a strong woman and so is your mother. Chin up young person. Take care of yourself.

    Amie

  18. Hello,

    Like many people, I am really new to this whole cancer thing. My father was officially diagnosed last week and still unofficially as stage IV. The cancer is in his lungs, lymphnodes, ribs and lower back. He's in a lot of pain and I am really scared.

    I hear nothing but bad about this stage. That people in stage IV don't survive the year. I want to help him and I don't know how.

    So I'm here to meet people and cry with people and get some support. This sucks big time and I just don't know what to do.

    Thanks and I look forward to meeting, learning and probably crying with everyone else on this site.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.