niececola Posted July 8, 2004 Share Posted July 8, 2004 Please allow me to ramble here, because frankly, I think that is all I am capable of doing right now. Suffice it to say that my visit last night with my mom did not go as well as I would have hoped. I guess the somewhat good news is that her onc still believes the pain in her chest is due to trauma, so they are considering radiation. That is about the only good news that we got. When I asked him about her chemo on Friday he said, "Well sure, I guess, we are not even sure it is working, but sure." Well, it did not dawn on me then, but later I was livid. This is the same onc who 2 weeks ago recommended staying on this chemo, if he does not believe in it; he never should have made that recommendation. I am beyond pissed right now. He should have recommended another course of action. But that is not my biggest problem right now... My mom has basically given up her will to live. I just know she has. All hope I have is completely gone. She cannot or will not eat. When I asked her what she is feeling with regards to food, she just yelled at me. In all fairness to her, I am the child in the family that is going to be a pain in the butt, and rarely let up, although I have tried very hard to. On the flip side, my mother has said she needs encouragement, so it is a very fine line between support and nagging and whatever I have done, my mom just associates me with being the nag. At this point, it really does not matter how we got there or what I can do to change it, it is pretty bad when your mom attempts to eat lunch, cannot, and then starts crying when she realizes that Denise will be mad at her b/c she did not eat. And I wasn't even there at lunch, so suffice it to say, I am keeping my mouth shut b/c there is no way I am going to spend my mother's last days with her, nagging her to eat and her resenting me. As some of you may remember, my mom has a lot of general anxiety in her life, on top of everything else, so getting her out of bed to walk around is a struggle. She is afraid that her legs will be weak and she will fall. So, with fear of sharing my true feelings with you all, I am angry. I am angry that my mom is giving up, and not pushing herself. We have struggled with her fear of one thing or another my whole life and I do not know how to help her. She knows she needs to eat and get out of bed, but she will not do it. And I see that as a major step of fighting this damn disease. And I am tormented by the fact that she is afraid and for once in her life, I wish she were not. She could die tomorrow, but if she were not afraid, it would make her passing that much easier to accept. I am not sure you can really understand what I am saying or how I am feeling; all of our stories are so different. Sure, I am mad that she has cancer and I pray for a miracle everyday. But to watch the one you love more than anything in your life struggle her whole life just to make it through a day and then to be struck down with this damn disease, the heartbreak is truly unbearable. Sure, I want her to fight this disease the way I think I would (but how the heck would I know what it is like), but more than that, I just do not want her to be afraid and she is and my heart is breaking today. So, it is a new day, she is still here, and I am praying she feels better. She is out of her mind right now, not making any sense; the onc thinks it is the drugs. Maybe. Or brain mets, but we are not rushing to that judgment just yet. All I know is that she barely spoke to me last night and when we did, we fought over her eating and there is no way that can happen again. Thanks for reading this and letting me get this off my chest. Denise Quote Link to comment Share on other sites More sharing options...
betplace Posted July 8, 2004 Share Posted July 8, 2004 (((Denise))) You have a right to your anger, though if you stop and think about it, what you are feeling is probably not anger, but fear and desperation. It must be very hard to be a caregiver. I don't know if I would have enough emotional strength to be one. It must be really hard to watch someone you love slipping away, my heart crys for you and all the other caregivers. Hugs and prayers going out for you and your Mom. Blessings Betty Quote Link to comment Share on other sites More sharing options...
Snowflake Posted July 8, 2004 Share Posted July 8, 2004 Denise, I'm sorry that your mother is feeling so poorly and that the days are constant battles to try to get her to fight. Unfortunately, you cannot do it for her, she needs to push herself. The good thing is that she has such a strong supporter in you...and it is a VERY thin line to walk. My caregiver wanted me to promise him that no matter what I would fight this with everything I had. To be honest with you, I, too, am afraid to die. I don't want to, I don't know what it's like and don't want to be experiencing it anytime soon. BUT, flip side, I don't know how "the end" will feel and if I'm at a point where going is better than staying, I would like my husband to understand that and help me ease into it....if it's my choice, if I'm sure, if, if, if, if... Find out what is scaring her, if it's a "meeting the maker" thing, have her clergyperson come and talk with her. NOT giving up, just easing the "other option" if that's where her journey is leading. Hang on, Denise. Keep trying to get her to continue her fight, the fight against all the other anxiety/stress primarily, cancer issues secondarily. First fight should be to get up and get going. Take care, xxoo Becky Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Denise, First, I regret that you are facing this situation, that anyone is facing this kind of situation. But you are. And your mom is facing a different situation than you are. I don't want you to take this wrong, but you need to remember that your mom is facing something different than what you are facing. You said it yourself. You only think you know what you would do if you were her. You don't know what you would do. You don't. Denise, everyone dies. Life is a process and so is death. Your mom may live for years, but the odds are she won't. I watched my father in law in his last months. He so wanted to talk about things that were important to HIM. He wanted to talk about death and afterlife and his hopes and wishes for his family. Everytime he tried to talk. someone would stop him. It was one of the hardest things I ever saw....They would tell him to stop thinking that way. Fight. etc. He knew more about what was happening inside him than any of us. But because we weren't ready to hear what he had to say, because we were so filled with fear, we shut his voice down. To my knowledge he never did get to have the kind of talks he needed and wanted. I don't know that for sure, but I am pretty positive that was the case. I regret I didn't go to him and talk. But the truth is, he was not my father, and it was not me he wanted to talk to. Your mother is being brave. You might not see it, but she is being brave in the way she knows how. Because she doesn t want to eat, does not mean she is not fighting. People think I am not fighting because I have refused chemo for now. That is not the case. I fight every day for the dignity to live whatever life I have left in the best way possible. Even if it is just coming here and offering what little I can offer. There are more weapons than any Doctor or medical person has to fight with and these weapons are less toxic. I am not saying that she shouldn't do treatment, I am saying she is the one that needs to decide what to do. She should not have to feel like she should do something because someone else wants her to do it. It is her body and her life. My father in law was suffering end stage congestive heart failure when he was DXed with colon cancer. He did not want to have an operation to remove the cancer. He was adament. But his family urged him on and he finally agreed, not for himself, but for his family. He was sacrificing again for them. In the middle of the night before the surgery the next morning, he suffered a heart attack and died in his sleep. I like to think he took back his life and his decisions, and made them his own. I don't like to think as the Doctors said, "The thought of surgery scared him literally to death." To me that was one of the most heartless things a Doctor has ever said. elaine Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted July 8, 2004 Share Posted July 8, 2004 I have experianced those emotions. Rage, anger, fear, desperation, paranoia. if its an emotion having to do with loosing your mom, your best friend, the woman who gave you life, i have fealt it. with my mom, i got scared because she said for a few weeks before she passed that her twin was in the room with her. now her twin had died a 4 years to the day earlier than my mom died. i got so sick inside thinking my aunt had come for mom. i could not handle it. i lashed out at everyone and was not a nice person to be around. all my family thought i was being mean but it was FEAR, pure and simple FEAR. i could NOT live without my mom. she was my life. How would I get up every morning without her. i have to take her suffering away, i can handle it better, i am fatter than her, i am younger and have more inner strength. I watched her stop eating, i watched her refuse feeding tube feedings, i watched her be bruised all over her arms from being poked with needles endlessly, i even got handcuffed at one point in the hospital for phusicially throwing a lab tech to the floor for poking my mother once to many times and her veins had collapsed at that point and no blood could be drawn and they just kept poking her over and over. so i lost it and threw her little tray and her in the ahll and against a wall. i know, over the top but the HELPLESSNESS i fealt over not being able to save my moms life drove me to places i had never been. you, like me, feel the need to make it better, to cure her, to find the magic pill to make her cancer disappear. i tried over and over and over. i thought if she just ate one meal, her strength would come back, but in truth, she was actively dying already, i knew it but would not admit it to myself. i would beg her to eat. i would make ten different smoothy drinks just trying to get calories into her so she would have strength. i talked to mom just a few hours before she died. i didn't know she would die that day so i never ended it with her like i should have. i just told her i would see her in a few hours, no goodbye, nothing like that. you wil never accept what is happening, because you still will to the last minute, fight to cure her. but while your doing that, take a breath and love her so if the end comes. you will know you ended it with I love you and she will know your going to be ok. thats what she is probably thinking about right now. she is so worried about you, her baby that inside she is like you and all worried. its an awful road to travel and i wish you didn't have to travel it. i can't help right now, but i can say i understand. Quote Link to comment Share on other sites More sharing options...
Ry Posted July 8, 2004 Share Posted July 8, 2004 Oh geez Denise, I don't know what to say to you but felt I had to at least respond somehow, I can feel how much pain you are in. Is your mom at least drinking? She needs to get fluids in to prevent dehydration. If she doesn't she will probably end up hospitalized and put on an IV and fed that way. Maybe if you tell her she is going to end up in the hospital she will try to get something in? If she is having trouble with swallowing whole food she can drink Ensure, Boost or Carnation Instant Breakfast. I know with John food sometimes sticks in his throat and needs liquids to help wash it down. I can't add anything to what the others have said, except to tell you I feel for you and hate that you are in this position. I know its hard. I wish you strength to get through this. Rochelle Quote Link to comment Share on other sites More sharing options...
Pamela Posted July 8, 2004 Share Posted July 8, 2004 Denise, I understand. I think I know what you're going through. I am torn between wanting to be Dad's hard-hitting coach and wanting to let him do whatever he wants, even if it looks like giving up. He's a tired, sick, depressed person. He cannot do the things that made life good for him. He doesn't know how to be this tired, sick, depressed person that disease and doctors have forced him to be. Of course, my brothers and I want to be a good reason for him to keep fighting. We want him to hang around, and we want that to be enough for him. It's not. I hear the cry of your heart. You want to do the right thing for your mother. You want to be her champion, her friend, her strength. And she doesn't know how to tell you what she wants. Maybe she doesn't even know what she wants. So you try harder and harder. It's a tough place to be. Does she need someone to tell her she can do it? Or does she need someone to tell her it's okay to let go? Is it quitting to decide that the battle may not be worth winning if it means adding months or years of more suffering, more fear, more uncertainty, more rollercoaster emotions of hope and bad news? My brothers want to fight with everything they've got. They want to push Dad to fight harder. They may be right. But I believe in the spirit of each life, that life force within your mother that makes her a unique creation of God. If that spirit can be in a loving, peaceful place -- surrounded by people who accept her and her decisions with confidence and unconditional love with no obligations placed on her -- I believe she will come to know what she needs. Maybe she'll decide to fight harder; maybe she won't. It's hard to do that. I haven't been able to do it with Dad yet because I fear what he will decide. But I'm trying. This is his journey. He needs to do it on his terms. I just need to come to a place where I can let go and trust him. Denise, I appreciate your deep love for your mother. I appreciate your heart and the openness of your posting. Pam Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Ry I think her mom IS in the hospital. elaine Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 8, 2004 Share Posted July 8, 2004 Denise, I would give just about anything if you didn't have to go through this, and your Mom didn't have to go through this, and none of us had to go through this. I'm sorry that my comments made you feel uncomfortable writing about your situation, and I'm very relieved you decided to write about it anyway. Your anger I understand. One of the hardest things I've ever done in my life was to accept my Mother's decision to forego any more treatments for the Lung Cancer and come home to die. And to be the one to "enforce" her wishes against the wishes of others who also loved her, when what I really wanted for her to do was keep on battling the beast and live another day for all of those who loved her. I was her "Pit Bull", Denise, the decision to eat, drink, undergo treatment, is hers and hers alone. They're the only things over which she has control. She knows what she is capable of doing and not doing, and how far she can go. Time for you to step back from your role as the one to push, and take on the role of upholding her. I am so sorry you are hurting. Quote Link to comment Share on other sites More sharing options...
Guest sueb Posted July 8, 2004 Share Posted July 8, 2004 Denise, This may be short, but I had to respond. We lost my mom in Feb 2003 to NSCLC after being diagnosed in July 2002. We were going through the same fights about food and even about medicine. You can't make someone eat and I wish we had backed off, I don't think it made much of a difference. I felt like we turned her last couple of months into one long struggle. Try to provide your mom with easy to swallow foods or drinks like ensure or milk shakes. We used to make a milk shake out of ensure and ice cream! And let her decide how much she needs. I think every family struggles with this and it is the hardest thing to let go of when you feel you have no control over the rest of the situation. I used to feel like Shelly, if I could just get my mom to drink an extra ensure I just knew she would start feeling better. Don't give up the fight for your mom, but don't fight against her. I know you are angry, I still am, but you will feel better if you take the time to talk to your mom. Tell her everything you have ever wanted to say and just enjoy every minute you can spend with her. Sue Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted July 8, 2004 Share Posted July 8, 2004 Denise,So sorry your going thru this.Nothing I could possibly add to all the above well said posts.You and your mom will be in my prayers. Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted July 8, 2004 Share Posted July 8, 2004 Denise I read your post and my heart goes out to you. It is obvious how much you love your mom and how afraid YOU are. I too know those feelings of anger and outrage. Watching someone you love so much struggle with this damn disease breaks your heart a thousand times a day. Anxiety is a terrible thing to have to deal with. It cost my Johnny and me to lose many precious minutes. Like you knowing how afraid he was was the hardest thing to deal with while he was alive and especially after his death. You say your mom is afraid to walk for fear of falling. Johnny was afraid to walk outside of our home for fear of not being able to breathe tho walking never made him short of breath. It was all part of the anxiety that was slowly eating away at our lives. Is your mom on any medication for anxiety? She should be but please be very observent and learn all you can about any anxiety medication she may be on. Some work the oposite of what they are intended for and can cause many more problems. That could be part of the problems you speak about. I also want to advise you that pain medications and some anxiety medications kill a person's appatite. Your mom is not eating because she is not only not hungry but probably feels over full (those medications also cause constipation and that will keep her from eating). When we watch someone we love sturggle with the cancer and the treatments as well as the indignities they have to suffer it does something to us as caregivers. Our main goal is to protect and to heal but that is not always possible. We end up with issues of our own that we are fighting plus the issues our loved one is fighting. It is not an easy road to be on and takes a heavy toll. As for your mom lashing out at you just remember the old saying "you always hurt the one you love". You are there and an easy target. There is so much going on inside of her that it has to come out somehow. The things she does and says to you are not intended to hurt you. She just has to let out the fear and anger that SHE is feeling and you are there and make a perfect target because you are there. Don't take the things she says personally. Love your mom and continue to do for her. Don't nag her to eat but try to get to the bottom of her problem with food and go from there. The solution may be as simple as really talking about it with her or giving her a laxative. If she is not suffering from pain slowing or stopping the pain medications may be all that is needed. As for doctors and their attitude it stinks Many of the things they do cause as much harm as help. Some are just cold and others care but have little faith themselves in what they are doing. It is hard for them to help because that attitude that lung cancer is a death sentence is so strong that it becomes a part of their personality. Sometimes I can't help but wonder if that is not one of the biggest obsticals in the way of finding a real cure. Your mom has two positives on her side. She has you who love her and care enough to fight with her. She also has the desire to live. You may see it as fear of dying and I'm sure that is a part of it but if a person does not want to live the fear is not as bad. I hope that I have helped in some way. I know the struggle you are going through. I pray that you have the strength to deal with all of these issues and above all I hope that you and your mom can find relief for a while from some of your fears. God Bless you both. Lillian Quote Link to comment Share on other sites More sharing options...
berisa Posted July 8, 2004 Share Posted July 8, 2004 Denise, don't angry with your mom. She does not want to behave like this. Like my dad, while they are on Steriod or some medications, they definitely affecting their moods and temper. Behave differently as previous before diagnosis. I was also angry with my dad while he didn't do anything that I thought he should do. But now, I was regret because I found that I didn't really understand how bumpy this road was and how suffering he was. He suffered far more than I can imagine, far more than what I observed from his physical condition. They are suffering and we do not know since they feel it but not saying it. I just thought he should fight it hard because he was my hero. How can my dad gave up and being negative because I am a positive person who is his daughter as well, he should be like me..........bla bla bla These stupid thinkings just make me now regret. Everytime when I recall those times, I tell Dad to forgive me.....always. The day before he died, I held his hand and apologized to him and hope he forgive me. Denise, please be patient to your mom. We never understand how frustrated they feel, yes.....your mom needs encouragement indeed. You have to be patient enough to encourage her to eat. No matter how she choose to face her disease, you have to make sure that she is happy and get the most out of everyday. This is what I learnt from my own experience. Certainly pray for your mom and you. Pray God giving you patience and more than enough empathy. Quote Link to comment Share on other sites More sharing options...
niececola Posted July 8, 2004 Author Share Posted July 8, 2004 To Fay and all the other dear friends, Fay, there is no need to be sorry, not at all. I am happy I have a place to go to, where people understand what I am feeling. It is hard sometimes when people read into the posts, but that is just part of the process. We all bring our experiences to this board. I really would like to clarify for everyone here that if my mom were to forgo chemo, she would have my backing 100%. I would never want any of our friends here who are on "the path less traveled" to think that I do not support or respect them and all they have offered this site. I do not know why that would be easier to accept, my mom deciding not to do chemo, rather than her not eating. I guess in my mind, I just want her to choose the life that is best for her and it is hard to understand some of her choices, but I very quickly understand that is just it; they are her choices and hers alone. I am very thankful you have all shared your thoughts with me; somehow, it just makes it easier to know that others have gone through the same thing before me. I have always wanted to make my mom's life better and to help her, I just have to realize and I thank God that I have now rather than later, that I can help her in so many other ways, rather than forcing her to be someone she is not or to do something she does not feel comfortable with. I was paralyzed with fear last night driving back to the city that this would be it and our last night together would be such a terrible one. I thank God today is here and so is my mom and I plan on being as supportive as I can to her and my family. I did get some good news this morning, she ate some oatmeal for breakfast! And the nurse said she was about to give her a banana. Praying for us all, Denise x Quote Link to comment Share on other sites More sharing options...
Andrea Posted July 8, 2004 Share Posted July 8, 2004 Dearest Denise, I am so sorry. I can relate to you in that I too am the nag in the family. We nag out of love and it causes anger. This is only my opinion, but from my own personal experience, be flattered your mom argues with you, it is a sign of love b/c we take things out on those we count on the most. Your mom is probably on lots of medications and does not realize what she is doing. My dear friend, my heart is aching for you and your beautiful mom. If you were not angry, you would not be human. I wish I was in NY right now to be with you. Lots of love! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 8, 2004 Share Posted July 8, 2004 The hardest part in being a caregiver is to allow the patient to make their own choices. It is a fine line we walk. We want to be encouraging and get them to do what will help, but we also want to support them in their decisions. It is hard, but it is worth it. Best to you and Mom, Denise. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 8, 2004 Share Posted July 8, 2004 One of the hardest conversations I ever had was the day after Becky was diagnosed. It was a lot like Snowflake's with her husband. (Too many Becky's. Okay, not really. If they were all like you two, there could never be enough!) I told her that I would never ever give up on her living. There would never be a prognosis, test, scan, or whatever so bad that I would ever stop thinking she could still beat this. And I would always always always want her to fight for every minute and every breath. But then I told her that even more than I wanted to fight, I wanted to be what she needed. And if the time should come someday that meant that the fight became harder than it was worth, then she would be the captain, and I would follow her lead. Little did I know that it would be me, with her losing consciousness and a ventilator unable to keep enough oxygen in her body, that it would be me giving her permission to die. I got to be the person to hold her hand and tell her all the good she had done, promise her that Katie would remember and love her forever, and tell her it was okay. All of the sudden the fear of being a single dad was gone from me. I knew I could do it; it was finally okay for her to quit fighting. So I told her. By the time her parents came to say goodbye a minute or so later, she no longer responded to any voices. And within an hour, she was gone. I started with a point to this, but it is lost. I guess the main thing you can do is keep your mom's needs first and foremost on your mind. It sounds like you are doing that. And doing that, you will make the right choices, even when they tear your heart striaght out of your chest, they will be right. Curtis Quote Link to comment Share on other sites More sharing options...
shirleyb Posted July 9, 2004 Share Posted July 9, 2004 Denise, Follow your heart. The best way to help your mom, is to ask her what she wants from you and then follow her lead. The love you have for her is so strong, and the fear of losing her can make you speechless at times. Just follow your heart and let her know you are there for her, whatever her needs may be. Let her lead you on the path she is taking and just be there for her. You have my prayers. Shirleyb Quote Link to comment Share on other sites More sharing options...
ahhappy Posted July 9, 2004 Share Posted July 9, 2004 (((((Denise))))) My heart goes out to you and your mom. You have gotten a lot of good advice here already so I won't add to it now. Amy Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 9, 2004 Share Posted July 9, 2004 Denise, I struggle every day with walking the fine line between being a total nag to Dave and looking out for his best interests. This isn't a fair comparison because it sounds like he has a somewhat stronger will, at least outwardly, than your Mom, and I really don't need to nag him. But what I have learned is that it does no good to nag to the point that you make someone made at your or they don't want you around. Back off a little on that - she may not be doing herself as much harm as you think. You're just afraid for her. Why not just tell her that you love her and that is why you are such a nag, but from now on you will try to less of a nag, but that you are always there for her? I completely understand all of your emotions, I don't know what else to say, but that I'm behind you all the way. It's really hard to stand back and let your loved one, the cancer victim, deal with the disease in their own unspoken way, but sometimes you just have to let them. Keep us posted We love you, Karen C. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 11, 2004 Share Posted July 11, 2004 Denise, Sounds like my story. You sound so much like how I was with my mom. If you want to pm me you can. I am so sorry for what you are going through. I am still so angry at so much... most of all the disease for taking my mother who was just not ready to leave this world. Kim Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 11, 2004 Share Posted July 11, 2004 Denise, the other David C post was from my wife. Having been a part of this board for over a year know I believe that in some ways this crummy disease is harder on the caregivers than it is on us who actually have it. I can tell Karen has a hard time trying to help me and it hurts me to have to see her going through this. I can't tell you what to do, I don't think anyone can be in your shoes and tell you what you should do although you haved recvd some of the best advice possible from the other posts here. We are all here for you. You and your mom will be in my prayers. She is lucky to have someone in her life like you. David C Quote Link to comment Share on other sites More sharing options...
niececola Posted July 12, 2004 Author Share Posted July 12, 2004 7/12/04 - My mom is still in the hospital, starting radiation for the pain near her sternum. A wonderful doc on Saturday decided to tell my mom she has 6 months to live. I am beyond livid, as is her onc. She has now suffered with hourly panic attacks and can't get the 6 month number out of her head. I do realize that my mom was sheltering herself from the brutal realities of LC, but no doc should be playing God and handing out timelines. I am composing myself today and will be calling the stupid doc later today and explaining the fine art of diplomacy. Quote Link to comment Share on other sites More sharing options...
jamie Posted July 12, 2004 Share Posted July 12, 2004 Denise, I know it isnt much, but I would like to tell you that I am so sorry for what your mom is going through. In your update you didnt really mention how your mom is fairing mentally. Im sure its probably not good since that dumb dr. gave her that stupid 6 month news. i always tell everyone to print out some profiles of people who have beaten out statistics. I did it for my dad and it helped ease his mind alot....maybe it will help Hope your mom is feeling better soon. Jamie Quote Link to comment Share on other sites More sharing options...
Pamela Posted July 12, 2004 Share Posted July 12, 2004 Denise, I'm angry with you! That kind of thing really ticks me off. We've had the same experience with our Dad several times with several different oncologists. We work to keep him positive, and they want to make sure that he is fully aware at all times that they think he is dying. It's infuriating. I have promised myself that the next time a doctor wants to make sure Dad knows that he is dying in x number of months, I'm going to let that doctor know that he is a jackass whose quality of life may suffer if he continues to make that kind of ill-advised prediction! Tell your Mom that doctors have been wrong many, many, many times. Until they can part the Red Sea, just ignore them. I know what you're doing is very difficult, so hang in there! Pam Quote Link to comment Share on other sites More sharing options...
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