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#368195 01/21/08 11:10 AM
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Has anyone kept a log on their last days i want to know what to expect any signs to watch for any changes i am scared do not know what to expect

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Watching a friend or family member in the final stages of death is a very scary time.

There are two 'phases' of dying. One is the 'pre-active' phase and it generally lasts two weeks prior to death. The second is the 'active' phase and it generally lasts three days prior to death.

Pre-active Phase

  • restlessness, confusion, agitation
  • begin to withdraw from regular activities
  • increased need for sleep, lethargy
  • pauses in breathing (both when awake and when sleeping)
  • talks about friends and family that have died
  • desire to settle unfinished business
  • difficulty healing
  • no desire for food or liquid
  • increased swelling in the extremities


Active Phase
  • unable to eat or drink
  • extremities are cold
  • bluish and/or purplish coloration
  • more pronounced changes in breathing
  • states they are dying
  • decreased urination, discolored urination
  • incontinence (that was previously not a problem)
  • blurred vision
  • limited ability to communicate
  • more pronounced confusion and agitation
  • respiratory congestion
  • unusual decrease in blood pressure


It is important to remember that not all of these signs will be seen in every person. Some people may have a few of the signs, while other people may have many of the signs. Also, it can be difficult to truly estimate the exact time someone will die. The person's physician is the best source for this information.

Please keep us posted and feel free to post anytime that you have questions or need support. We're here for you!

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Rhonda, that is some excellent information that you have provided. I did see the two stages as I watched my father die. He is the first person that I ever watched decline and it took me some time to realize that he was going downhill. I kept thinking that he might get better and kept giving him encouragement, but he was struggling to try to stay alive. When I finally realized that there was no hope, I told him how much I loved him and assured him I would be okay if he was tired of the fight. He shook his head (by this time he couldn't talk very much) and told me that he loved me, too. I told him I would always be "Daddy's girl" and actually thanked him for everything he had taught me and given me my whole life, like compassion, grace, thankfullness, understanding and love, unending love.

FairyAli13, I DID keep a diary of my father's last days because I didn't believe that he was actually going to die. No person can actually know ahead of time that another person is going to die, but like Rhonda said above, there are many different signs to look for. My dad had "bursts" of energy each day, where he could talk some and had his eyes open and would respond to me. Each day, those times of energy became less and less. The day before he died, I started to shave him. When I finished his cheeks, he told me he was tired, so I quit. I told him how good he looked and said we would finish later. He died the next day. Something that always made me smile was how cute he looked with his white/grey hair on his lip and chin, left there because he got too tired to finish. I was grateful that I had a chance to shave his face at all.

My dad was not afraid but was worried about me being able to get back to where I was. He was in a hospital 1500 miles away and I was flying in every week and living in the hospital with him the last few months of his life. I wouldn't have had it any other way, either, because I got to be with him to the end. The day I ask him if he was tired of the fight and he said 'yes', I told him how much I loved him and would always love him, but that he did not have to fight anymore, if he was too tired. Within 30 minutes after I kissed him goodbye for that week and headed back to the airport, he died.

Sometimes we have to give our loved ones permission to die, so they don't struggle to live one more day and suffer any longer. Sometimes we lose a loved one tragically and don't ger a chance to say goodbye. That would be very hard but not impossible to deal with, if you have faith and believe in the afterlife. My father and I both had faith and he would say to me that once he was gone, his spirit would leave and all that would be left is his "old carcus". When he died and I saw him laying in the hospital bed, I understood what he had meant. I could feel his spirit hovering around me for hours that night as I sat by his bed and tried to think of all the things that I needed to do.

You don't need to be afraid, FairyAli13, because we are usually given a chance to see some of the signs that are mentioned above, by Rhonda. God has a plan and we each live it. Don't spend too much time thinking about death. Enjoy your life and those people around you because we aren't guaranteed a certain amount of time to live.

I look back at the journal I kept only occasionally because I don't need to be reminded of the circumstances and details of my father's death. He lived a good, long life and I am very glad that I was able to share so much of life with him. The journal was something that I did to keep myself occupied during the times my father was not awake. It did prove to be an accurate account of many of the things that Rhonda has listed.

We are here if you want to talk about your fears, or your special circumstances that led you to open this topic. Are you sick? Please write back and let us know how you are and what is going on because we care.

Trish

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Thank you for your replies. Yes I am sick, I have lung and lymphatic cancer stage 4. Some days I feel good, a lot of energy and most days I just lay on my couch uncomfortable and in pain. I am 54 I have two daughters one is in denial and the other has faced reality. I worry alot about what my death will be like and how much time do I have. I was on iv chemotherapy for about six months straight going in weekly my cancer reduced but it is at a stage now where it is not shrinking anymore. I take tarceva daily my mother is 78 and in good health she is not handling to well, it hurts me to see her in pain, my father drowned 10 years ago and she is alone. I'm wondering if there's anyone out there going through what I'm going through. My daughter wants me to keep a journal, it could help others. Knowing what is to come, is what I'm hoping to find out about. This not knowing is killing me. If anyone has any information, please let me know. Thanks again. -Patrice

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Patrice, I am so sorry that you and your family have to face this. It is so hard to have something wrong with you and not know how or what you can do to correct it. Certainly, it is going to be hard for everyone in your family to have to deal with more things connected to your cancer. Your daughters and your mother will have different issues, but you should be most concerned with yourself at this point.

You say that you had chemotherapy for 6 months; did you have radiation? I was reading about tarceva and it looks like there is a chance that might help. My girlfriend had breast cancer twice, 5 years apart, and she is a good person to give you more information and I will ask her to PM (private message) you.

For the time being, I am glad that you are able to talk online, when you feel like it. I am sorry that you are uncomfortable and in pain. Do you get enough pain meds? I have to wonder if your doctor is giving you enough to avoid some of the pain. If you are able to keep a journal, your daughters will appreciate having it. Keep track of both simple things and deep thoughts as you tell what you eat and think and want them to know.

You are in my prayers and I pray that God will work a miracle on you. I am here to talk anytime you want to or feel like it, and I know that there are many people here who will be supportive also. Bless you and may your dreams be of happier times, without any pain.

Trish


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Patrice, I am so sorry to hear you are sick. I, too, had cancer and I understand the pain you are going through with chemo. Did you have radiation as well? It is all so painful and the side effects are so very devastating. It seems that the good days are few and you have a hard time remembering what it felt like to not be in pain and not be sick.

Trish is so correct. You simply must be concerned mostly with yourself right now. Getting through each day will take all of your energy. I know it hurts you to see your mother and your children hurting also but it is now time for them to take care of you. Hopefully, they will be strong for your sake because you need someone to lean on. Don't try to hold yourself up alone. Lean on your family. Talk to your doctors. Post on this forum. Feel free to contact me directly if you would like to talk outside of the forum.

Trish brought up a good question about the pain meds. Don't feel bad asking your doctor to give you meds to relieve the pain. Your body does not need the added stress of pain. I found my oncologists (and their staff) to be very understanding and compassionate. Whenever I mentioned a side effect of the treatment they were more than willing to write a prescription or offer advice on how to help me overcome or at least minimize the side effect.

Patrice, you are in my thoughts and prayers. Please post whenever you are able. We are here for you.


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Thank you for your prayers. I have enough pain medications. I was on a test drug for a while and while the money was paid to the doctor I was treated special. After the study was over it was like i was totally forgotten. I could not do the chemo at the doctors office because medicare did not pay enough. I had to go to a clinic that did the chemo. They where very nice but it hurt to be ignored by my doctor. He did not recommend radiation so I have had none. Money had a part in my treatment and it hurt my feelings but I got over it. The tarceva seems to be holding the cancer at one size but the side effects sucks.It could be worse. Thanks again. Patrice

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Patrice, I checked Terceva on the web and saw that they had a few places for you to check out to get money for the treatment you need. Please don't let money keep you from getting the treatment you need. I emailed your post to my friend and she said that she would email you, but she said there were 2 things that are the most important things for you at this point.

She said those 2 things are: 1) keep a positive attitude and DON'T let yourself become inactive. Do things that you love to do, whether it is reading your favorite book, talking to a favorite friend, or taking a walk and seeing your neighbors. Try to learn to laugh and have people around you who will make you laugh. Laughing DOES release endorphins which make you feel better. wink You need to have people around you who can support you and help keep you comfortable and happy.

2) You need to be trying something different, like an herbal tea called ESSIAC tea. This has been used successfully by many people for generations, including my friend who said that her tumor had quit shrinking also. She drank it alot and her cancer DID get smaller. It is worth a try.

Essaic tea ... You can look it up online. It was something found by the Canadian Indians and became very important and used by a nurse during some trial, or something. I'm sorry I can't explain better but I'm trying to say what my friend told me. Her internet is down and her husband is working on it right now. She said that she will email you as soom as it gets fixed.

She just got through telling me that you need to find a new doctor too, and get a second opinion on the radiation treatment. She said that you SHOULD be able to go into the emergency room at your hospital, with your papers and say that you don't have enough money and medicare won't let you get all the treatments that you need. They may be able to take you to the hospital coordinator or patient advocate or whatever they call it in your hospital. Tell them you have medicare but they are not giving you all the treatments you need. That is why it is VERY important to get a second opinion.

I know it is hard to be treated less than "gently" when you don't feel good, and some doctors are like that, but others are very much the opposite, so don't give up. Find a different doctor to go to and give him or her a chance to treat you better. Don't give up, Patrice, fight! That is what Terceva is doing for you. It's helping you fight! It is holding off your symptoms from becoming worse. That gives you some time to have another doctor check you out.

Please know that we care and are praying for you. Come back and talk to us every chance that you have. Okay? What did your doctor tell you about Terceva? What do think it is doing for you? Has your doctor given you any idea of what will happen or when it might start happening? Knowing these things allows us to pray for specifics on your behalf. Take care of yourself and may God bless you with more good days than bad, less pain and a drive to survive.

Your friend, Trish


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Trish Thank you for the imformation. I am looking forward to any help from your friend. Several people have said that I need a second opinion. I will look for another Doctor. Maybe he will have a different treatment for me.Thanks again. Patrice

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You're welcome, Patrice. Why don't you google Essaic tea and see what is being said about it from others who have had cancer and tried it? My friend says really good things about it being a principle part of her healing.

God bless you, Patrice. Please keep in contact with us here and let us know how you're feeling and what is going on. I asked you before, what did your doctor tell you about your medicine, about what you should expect as far as symptoms and stages? Come back and talk about how you feel and what you've been told. You could help others by voicing your condition and the feelings that you have, and what is happening to your body.

I hope to hear from you soon. Take care of yourself and again, God bless you! You are in my prayers, Patrice.

Trish

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Patrice, I have looked at several essaic tea websites for you and have found this one to advertise that it is the "original" essiac tea provider. It has some interesting information on it, so you might want to check it out. www.essiacinc.com

God bless you. smile

Trish

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Trish I was not told anything about side effects for any of my medications. I have been given tarceva with no information.Iwas not told about the stages I faced with the cancer. All I can tell you is that I personnally feel generally bad like an achy flu. No interest in getting dressed. Just stay in my sleepy clothes and watch tv. Everyone has tried to get me out the house but I feel tired and do not want to do anything. I will google about the tea today. Thanks for the prayers I pray all the time. I will keep in touch. Patrice

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Patrice, do you have an email? If you do, would you send it to me on my PM? If you click on my Bella name, Babyquacker, you will see a series of options, including SEND A PM. I would like to give it to my friend who has been through all of this.

One thing I would do is definitely find a new doctor, as quick as you can! The questions that your current doctor has NOT answered are very important for your health. AND you deserve to have a doctor who cares about YOU!!

You originally said, "I have lung and lymphatic cancer stage 4. Some days I feel good, a lot of energy and most days I just lay on my couch uncomfortable and in pain." How did you get that diagnosis? Did you ask any questions or did they give you ANY information?

Part of why you are tired and may not want to get dressed and do anything may be caused by depression. Certainly anyone facing illness gets depression and the doctors can help with that, too.

Please seek a second opinion and take a list of questions to ask so you will know more about faces you. We can help you with the questions, if you want. You are in my prayers. I am praying that you find a doctor who can help you and I am praying that your illness can be managed. We want to keep hearing from you and we want to know what is going on with you and your health. May God bless you, Patrice. Please keep us posted.

Trish

Please send me your email, okay?



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