JohnSis Posted June 5, 2004 Share Posted June 5, 2004 Hello, My name is Janet, I live in Pensacola, FL. I was born and raised in Peoria, IL, where my big brother has resided all of his life. He is 17 years older than me, I am 49 (the baby), and he is 67, (the oldest of 5), and he has lung cancer. I didn't find out about it until 2 evenings ago. He had been ill with pnuemonia, and I had this feeling things were not right. I called and asked my sister-in-law Patsy, if John was sick. She asked if I had talked to my other brother, I told her no and said I just had a feeling. I was hoping it was a silly fear. But to my sorrow I was right. I attended nursing school for 2 years and worked in hospitals as did Patsy. Now during this conversation, which felt more like I was interreagating a very tight lipped suspect. GOD! I can't even tell you what type or what stage his cancer is. Well. now you know why I am here. There is no one who knows any more than I do to call. They're 40 year old child, my nephew is coming home from Hawaii, I gathered sometime in June. This leaves me OUT, and hurting, and feeling more helpless than I ever have in my life. I lost my 54 year old brother almost 4 years ago. He had a coronary on the golf course. Died before any could get to the hospital. I only confide in 3 close friends, and my 2 sons. I told her I was going to be up there in a week or so. She told me not to come. She said he won't see you, or anyone else. I said well he'll just have to turn me away, because I am coming to the house. She told me to make sure and call first. DEAR GOD SOMEONE PLEASE THROW SOMETHING OUT HERE FOR ME. I 'M GOING MAD. Why doesn't he want anyone to see him? She said that. He is starting first chemo treatment this week. I can't imagine the fear he must feel. I've been sitting around trying to write to him, but I end up drawing his face. I feel that brings me a bit closer to him. I have this burning desire to just give him a hug. I am lost. As far as his symptomns. (what I could find out anyway), it was when he had lost a good deal of weight, after his cardiologist suggested he do so. Everyone was bragging him up at all of the weight he had lost. Of course he smokes, like a chimney. Stopped for about 5 years after heart attack at 37. Our father died in sleep at 56, smoked also, his heart failed. So as for John, Patsy said he was never the same after that weight lose. Now a year later, he has had pnuemonia for almost 3 months, I talked to her a little over 3 weeks ago, and she didn't know yet. So I am guessing that he was diagnosed about 3 weeks ago. So here I sit. Now that you have the whole novel, my main questions and plea for advice from you are......how far along do you think his cancer is, if you would phathom to guess by this bunch of bologna, I have for information? ..........what would you do? I believe he wants to protect me from hurting for him, and coming ALL that way as Patsy put it. But their son hasn't been home for 8 years. Not for ANYTHING. But they have him coming this month. My oldest son found a rental car and we are ready to go. But I am so confused. I would say they are in great denial, but not when they are having son fly home. No Way. I am sorry for taking up so much space, and if anyone is even still reading this, I thank you. I think it helped a little just to write it. Please don't be afraid to speak straight to me, that's exactly what I need. Not games. I am sure no one on this site is here to b.s. anyone else. God Bless you all in your plights, I will pray for you all on here. Thanks again, JhonSis _________________ Right now I'm helpless, hurting, and confused, I need your help. John is isolating and doesn't want me to be a part of this life! I want to respect his wishes, but that is killing ME, I want him to be proud of his little sister when this is over. Whatever that means? Thank You, JohnSis Quote Link to comment Share on other sites More sharing options...
Laurie Posted June 5, 2004 Share Posted June 5, 2004 Hi Johnsis, I'm so sorry to hear that your brother has lung cancer and that you are in so much pain. I'm sure that your brother is in shock and going through the emotions that many have faced here. Such as anger, fear, frustration, etc,.... and unfortunately there is a stigma that the person brought it upon themselves, unfortunately many seem to scold LC patients, and the doctors can be extremely uncompassionate when giving out survival stats which many here have defied and yes they are still alive! I would suggest sending him a card with your support and offer for assistance. Then once he gets that hopefully he will respond. Please give him our website info and keep us updated. Sending you hugs and prayers of healing for your brother. Laurie Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 5, 2004 Share Posted June 5, 2004 Hi Janet and WELCOME. I am so sorry to hear about your brother, but I'm glad you found us to talk to. I, of course, can't say for sure why your SIL thinks your brother doesn't want to see you or anyone, but I can tell you that was EXACTLY the way my husband was. It was a real fight to get him to even let me tell anyone in his family or my family that he had cancer. For many weeks, he wouldn't talk to anyone but me about it, and that was even limited. However, I staged an opportunity for his sister to come by and see him one day, and I know he really appreciated her stopping by. Also, his brother just popped in one day (he lives pretty far away) and they spent about 1 1/2 hr. together, and I know that he also enjoyed that. But before he actually made the contact with them, he insisted that he didn't want anybody to call him or come over - not anybody. Once the info was out, though, he did better with dealing with them knowing about it. I think it's a combination of fear and shame. And, yes, there is a strong feeling of guilt among most who have smoked, but what we do here is take away that shame and guilt. None of us could even begin to guess what type of lung cancer he has or what stage. Hopefully, you will get more information when you get to Illinois. I don't know if you will even see any of our responses before you leave, but if you do, please remember to check back with us and let us know how it went. We are here to support you and help you in any way that we can. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
sharyn Posted June 5, 2004 Share Posted June 5, 2004 Hi Janet - I am so sorry things are the way they are. I can imagine your level of frustration. When my dad was diagnosed - my mom kept everyone away. (not his children) but all friends etc. She called it "cocooning" - I think they both needed time to adjust to his diagnosis, they needed time alone together and with the children. This behavior continued until he had had chemo for a month or two, I think they were afraid of how he would look and feel and what others would think of him. When he did so well with the Chemo, they slowly began to go out, accept friends in etc. I am sure your brother does not want to upset you and he doesn't realize by turning you away that he is upsetting you more. You need to let him know this in a very gentle way. Maybe he doesn't even know that his wife told you not to come? That is a possibility. There is no way I can give you an opinion on how progressed his disease is without any details at all, just know that my Dad was diagnosed with Stage IV 3 1/2 years ago and still doing well. I will pray for your brother and you. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Addie Posted June 5, 2004 Share Posted June 5, 2004 Janet... I came looking for this post, after seeing your other post where you were so disappointed in the lack of replies to this one. I am fairly new here myself....but I do know that weekends and other times can be quiet around here when people are busy with their real lives. Please don't feel like you were being ignored. As I said....I'm new here too...have just been around about 3 weeks....and the depth of caring here is beyond belief. Now...to address your questions: you know your own fear and emotions over your brother right now....so I'm sure you can imagine how HE feels with the news he's been handed. It's likely what you are feeling, and then magnified. I don't think it's unusual for some people to close themselves off until they can absorb such news....and this may be what your brother is doing. It's neither right nor wrong of him....it's just how it is....how he chooses to cope at this moment. As for what you should do....I don't know that I can offer any advice other than to follow your heart and try not to presume how it will go if you do decide to go see him. Try to just let it happen or evolve as it will....because what will matter to you later on, is that you did follow your heart. Nobody here could guess at the specifics of his diagnosis...and it's possible that he might still be getting tests to determine all that. I will keep you and your brother in my prayers....and hope that you find a way to calm your fears a little and get some real info....plus be able to communicate in some way with your brother. Again....follow your heart on all of this...it's as good a guide as any of us get sometimes. Best wishes and keep us posted...please. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 5, 2004 Share Posted June 5, 2004 Sis of John, Welcome.... I didn't answer your poll, not enough choices. Would I go? Well.... When I received my diagnosis my brother and I were involved in quite the feud. I called him to tell him my news and he and his wife were in the waiting room after my surgery... Of course, my brother lives within 30 miles of me and was not coming to stay in my house with his six (6!) kids. The mortality issue tends to make some people (like me) seek a warm cocoon to crawl into, a nice dark hole to get used to the news... If he is calling home a child he hasn't seen in years, he is trying to "amend" things that may be bad...maybe he feels his relationship with you is okay...or maybe the bond between siblings isn't the same as the bond between parent and child/ren. As for just showing up, would you do that at any other time? Would you want people barging in on your privacy after being asked not to come? Yes, you SHOULD call first and respect their wishes. Adding more stress to the household is not something you should do. Were you planning to stay at a local hotel or "camp out" with your bro? My suggestion? Your brother and his wife are making arrangements to see a son they haven't seen in a while - give them that time with the son. Keep in phone contact and visit when they NEED the help, when the "newness" wears off and the local 'friends' are on to the next crisis in the neighborhood and he's been forgotten... ...and don't take pity with you. He's probably scared and doesn't need to see pity on your face to confirm he SHOULD be scared. I'm sorry you find yourself on this journey. Maybe you'll decide to stay around here. Take care, Becky Quote Link to comment Share on other sites More sharing options...
Elaine Posted June 5, 2004 Share Posted June 5, 2004 John's Sister Frridays Saturdays and Sundays are usually the slowest on here as far as getting responses, especially now that the weather is getting better. I posted an update yesterday and only got two responses. I don't take that as people don't care. You are in an emotional state because you care about your brother. I understand. Becky said most of what I have to say. I have a tangled messed up family and I only want them to be there when I decide I am ready. If they want to come, I know it will be to pay their last respects--though they haven't been around much during my life. I don't know your family dynamics well enough to answer your question. I would just write a letter to let him know what you are feeling and how important he is etc. After that, keep in touch and I bet there will come a time when you will be asked to come. Keep offering to come, too. Eventually I think you will be welcomed. I live in a small house now and I wouldn't really want family other than my kids to come and stay at my house, so be sure to ask, first. Everyone is different about that kind of thing. The stigma around a lc dx makes it so much more difficult to handle for the one who is dxed. Let him come to grips with things, even if you and he have always been close. It is A LOT to handle. I am sorry you feel we neglected you. It takes me awhile to think on things. Pls come back if you need more support. There is a lot of love being offered here. elaine Quote Link to comment Share on other sites More sharing options...
cathy Posted June 5, 2004 Share Posted June 5, 2004 Janet, When my dad was first diagnosed all he wanted around was his children and my mom..I think you need to let them digest all of this and do as he wishes..Let him know that you want to help and you will do whatever he wants..I would talk to him personally as long as he wants to talk..Emotions are so high and mixed up right now he probably doesnt know what he wants...Wait a few days and then see how he feels..You really dont want him to be upset over family matters right now.. On the siblings point of view..I know how helpless you feel, my brother was in a bad accident a few years back, was in a coma and didnt know if he was going to live or die for many months..I wanted to be around him all the time because we were very close, so I know how your heart is hurting for him right now, however you have to step aside just for a while but stay in touch to see how everything is going....He will let you know when he is ready for your visit.. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted June 5, 2004 Share Posted June 5, 2004 Two things: 1. I echo what Becky Snowflake said. Very well put. 2. SEE MY REPLY TO YOUR POST "THANKS FOR NOTHING" UNDER GENERAL. Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted June 5, 2004 Share Posted June 5, 2004 Welcome to the boards! Saturday and Sunday tend to be a little slower here than the week days. I personally spend a lot of time with my kids doing things outside on the weekends.........especially with the beautiful weather that we are having. I don't check the boards on Saturday and Sunday until after lunch. I can't tell you for sure if you should go to visit your brother or not. What I can tell you is how my Dad was when he was first diagnosed. My Dad tends to be a private person. So when he was diagnosed, he didn't want a ton of people visiting. He felt like that some of them were coming to pay their last respects to him..........like he was dead. He was and still is far from dead.............he is living............yes, he is living with lung cancer, but he is living. His mother, my grandmother, told EVERYONE that she knew. (I guess it was her way of dealing with the diagnosis) Dad was REALLY upset with her for that. He began getting visits from people had had not seen in years.........nor did he really care to see. He felt like he was on display. Dad did and still does enjoy visits from close friends and close family members. He DOES NOT like for anyone to pity him or to be questioning him about his lung cancer. He wants to spend time with them..........quality time.......not time talking about his treatments, prognosis, etc. He gets enough of that. So, depending on how close you are to your brother..........well, that would decide whether I would go or not. Do you go and visit with him often? (before his diagnosis?) Do you talk on the phone a lot? (before his diagnosis?) If the answer to these questions are yes, then I would probably call and talk to him. I would probably ask if there is anything that you could do for him. If he says no, then ask if it would be o.k. if you came for a visit. Then , respect his wishes. If you do go, do what you normally would do. Maybe go out to eat......things like that. Right now this is so new to him. He probably doesn't want to discuss his lung cancer in length with anyone. (my Dad didn't) The only person that my Dad would talk to is me. It was hard for him to avoid me though........he lives with me. We are very close. In time, your brother will probably open up and talk about things with you. Bottom line, I would talk to your brother, then respect his wishes. I would not go if he said no. In time, his own time, he will want you to visit. Best of luck to you and your brother. Angie Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted June 5, 2004 Share Posted June 5, 2004 This is a sticky question here. I would like to answer both ways. No I am not a fence straddler. You must take into account all the facts. I know you can't (and don't need too) post them here. Ask yourself...How is your relationship with your brother? Are you close or do you talk only at holidays? Ask yourself what you would want if the case was the opposite and you were the patient? What would you want? I don't usually make suggestions like this cause every case is different. Find out from other relatives what his condition is exactly. Different types act differently. SCLC is fast growing and NSCLC is slow. As a lot of others said; write him a letter. Now here was my case. I was dx and told no one except my wife. I had chemo and radation together for about 6 weeks. No one knew except my employer, and they did not know for 3 weeks. I took treatments after work and continue to work. My church knew but I only told them limited info such as I was ill. I did take a leave of absence and told my boss. My point here is that I did not want people look at me and think I was dead. I did not want to be treated any different (pitty on me...etc) than before. Give your brother some time. It is a shock to him too. By all means keep up with his condition as best as you can through others. I'll bet he will c me ar und. Good Luck and God Bless. Quote Link to comment Share on other sites More sharing options...
shirleyb Posted June 6, 2004 Share Posted June 6, 2004 Janet, From what I am reading and feeling, there is more to this than just what you have written. Now I will let you know, I am writing this in the position of being the wife of someone who had lung cancer. First I would ask that you step back and take a couple of deep breaths. You are scared, far from him and don't know the whole story yet. For some reason, John and his wife are not sharing everything at this time. I would not take this personally, but he has the right to request no visitors other than who he wants with him right now. He needs to focus on him, he needs to reserve his energy for the fight of his life, and lastly, maybe he needs to resolve some of his own issues before he takes on trying to comfort the rest of those around him. Just let him know you are more than willing to be there when he is ready and able to see you. As for Patsy, I have been in her shoes. I also requested that the "extended" family not come in from out of town. I had my reasons, but one that I will share here is I didn't have the time or the energy to "entertain" anyone other than those that my husband and I choose to be with. We had just begun the most terrible nightmare of our lives, and we needed to focus on us, on him, on coming to grips with what was going on. I know our whole life turned upside down. It could be they need to get their relationship right before being concerned with anyone else. There are many reasons why people do what they do, but please respect his wishes at this time. Step back, breath, and pray that all works out for the best for him, for his wife, for his son, and for you. I know you want to run there right now this minute, but you need to calm down and get your act together first. Your brother needs you to be strong, to be understanding and supportive of his wishes. I know this is the worst nightmare that anyone can experience. I know it is hard for you, but I know if it is hard for you, it is 100 times harder for him and his wife. Just let him know you love him, care about them, and will be there anytime day or night when they are ready to open up. Until then, you and the rest of your family are in my prayers. May God give you the strenght you will need to be there for your brother and his family. Shirleyb Quote Link to comment Share on other sites More sharing options...
janet Posted June 6, 2004 Share Posted June 6, 2004 I would go see him definitely, you will always regret it if something happens and you weren't there. I assume he will be glad you came once he sees you. janet Quote Link to comment Share on other sites More sharing options...
janet Posted June 6, 2004 Share Posted June 6, 2004 I would go see him definitely, you will always regret it if something happens and you weren't there. I assume he will be glad you came once he sees you. janet Quote Link to comment Share on other sites More sharing options...
J.C. Posted June 6, 2004 Share Posted June 6, 2004 Sister of John, I won't answer your poll, you are 49 years old and even if you are very disturbed by the attitude of your brother and his wife about your visit, I feel that giving an opinion on a one side story is way beyong reasonable. I see you have other postings all with the same attitude, which would not help your brother, he has to think of himself FIRST and may not be ready to be told by you,why he may be sick you already wrote about the smoking and to have you throw it at him would be very discouraging. So make your own choice and good or bad it will be yours. J.C. Quote Link to comment Share on other sites More sharing options...
Elaine Posted June 6, 2004 Share Posted June 6, 2004 Jackie, Very perceptive of you. Right on. Anyone who would think they had the right to "judge" the 1200 members of this board for not responding immediately to a post is probably someone who also "judges" his or her own brother for smoking and might throw it up to him. I have family members like this, and they are people I DO NOT want around. I have my own conscience, thank-you. elaine Quote Link to comment Share on other sites More sharing options...
Nushka Posted June 11, 2004 Share Posted June 11, 2004 About all I can say is ditto. Becky and Elaine put it very well...along with Jackie. He needs no judgment from anyone. Do what you can to get some answers and calm down for your sake as well as his. I don't know how long it has been since you have seen your brother...or how close the two of you are. You have to make that decision. I feel very close to my siblings but still did not want anyone around for a few days except my sister. She is my best friend and she helped me work through the best way to handle the rest of the family. My daughter is the only one that seems to judge me about being a former smoker. She is young and doesn't know anything about how it was when I started smoking, so I don't blame her for not understanding. This is the most caring group of people I have been around in my life ..so if you don't get the answer you want in the time you want it it is not their fault. We all have lives and worries of our own, but we do care about you and your family. Keep us in touch and let us know when you know more about your brother's dx. We all have our own way to handle this beast and you must respect his wishes. Just my two cents worth. Nina Quote Link to comment Share on other sites More sharing options...
paddy Posted June 11, 2004 Share Posted June 11, 2004 Dear "John"s Sister", I was so sorry to hear about your brother. I have a very dear brother too and I know how you must be feeling. I agree with the others that you should write him a letter, and in fact keep writing letters. He may not feel like writing back, but he will read and treasure them. After a while, if he has not shown a willingness to have you visit, I would take the initiative. My husband always enjoys seeing people these days and finds the conversation gets him "out of himself"! I am thinking positive thoughts for you and your brother. Paddy. Quote Link to comment Share on other sites More sharing options...
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