Skye Posted November 15, 2005 Share Posted November 15, 2005 Hello Everyone, I'm new, and not sure what questions to ask at this point, but wanted to introduce myself. I have looked over the site, so glad I found this place. I am sure when I decide what questions to ask, there will be many great answers. I am just really very scared right now, and unsure of where my Uncle is on his path, through this horrible journey he is on. He's a very strong man, but with all he has gone through, has left him so weak, been in the hospital more than out. He can't eat, or drink. I don't know if a g-tube is an option or not. I do believe in being aggressive with treatments, and being involved as well. Even so, it isn't me who is there with him. I'm just his neice, and can't speak with the docs. If I were there I am not sure if I would know what to do, as I am just learning of lung cancer. And it ain't fun, but I can't stay off the net searching for something that could help him. I will not give up hope, or prayers. I will hold on to hope till the very end. It is just very hard knowing he is suffering so. My Aunt, and cousins are scared as well, and there is nothing I can do to help them. So here I am, a smoker myself, on a lung cancer message board. Kind of ironic, isn't it? I'm a little angry with myself about that. You all are an inspiration, I will add you to my prayers. Thank you for allowing me to join here. Many Blessings, ~skye~ Quote Link to comment Share on other sites More sharing options...
Dazy Posted November 15, 2005 Share Posted November 15, 2005 Hey Skye ~ Just wanted to extend a welcome. Sounds like it's been a tough battle...he's very lucky to have such a dedicated, and caring niece looking out for him. You've come to a great place for answers - LOTS of caring and experienced folks here with a great deal of information. I, like you, search the I-net incessantly too. Knowledge IS power, and it helps with the general feeling of helplessness. I will include you, your uncle, and family in my prayers. Hang tough! ~Dazy Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 15, 2005 Share Posted November 15, 2005 Skye,welcome to our support family.There are many knowing and caring people here that will be able to help you along the way. This is a scary disease and fight but there are many here beating the odds and doing ok.Since your dad is a strong person and help him maintain a positive attitude and gain all the knowledge you and the family can get a hold of and it can be a doable and winning fight. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 15, 2005 Share Posted November 15, 2005 Welcome, Skye. I see you are from Texas also. Keep us posted on your uncle and let us know how we may support you. Don Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 15, 2005 Share Posted November 15, 2005 Welcome! You have found a place for support, concern and info. Pat and Brian Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 15, 2005 Share Posted November 15, 2005 Welcome Skye. Hope his wife or children are with him on appointment and take notes or even carry a tape recorder. This is so stressful it is very hard to even take in what the doctor is saying. Later when reviewing those notes really help. You are a help also. The whole family needs help. Someone to listen to them, and getting info for them, like said above , knowledge is power. Donna G Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 15, 2005 Share Posted November 15, 2005 Hi Skye. For your uncle, what you can do is tell him there are a whole lotta people praying for him who have been touched by this same disease. I will pray for your uncle, his family and for you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
jang Posted November 15, 2005 Share Posted November 15, 2005 Welcome Skye... glad you found us. Ask any questions you want, I'm sure there is someone here that has been through it. Quote Link to comment Share on other sites More sharing options...
Skye Posted November 16, 2005 Author Share Posted November 16, 2005 Thank you all for the warm welcome. My Uncle, and Aunt are very special people. He is like a Dad to me. His Father died of the same type of cancer when he was 64. Uncles brother(70 y/o) passed just last year, same type. He lived 13 months from when diagnosed. So yeah, like I said we are scared. I don't think my Aunt knows exactly what to ask the docs,I think we're still in shock. She is by his side almost constantly. I will suggest to her about the recorder, that's a really good idea. It's true what you say, this is a battle with a very ugly beast. I truly do not know how he will get through this without a miracle. I do believe in miracles. Just not sure if I am being selfish praying for one. I think today will be my last as a smoker. I might get lung cancer at some point, or not. But as I see it, it's better to stop now. Plus I really haven't enjoyed it for alongtime. I have heard so much about lung cancer, and my Uncle along with y'all, and thousands of others are suffering so. Everytime I take a puff, all I think of is him, and others like him. As well as how stupid I am, to keep sucking on these nasty things. Yes I am a Texan I saw someone is looking for an armadillo, we have a few here and would be happy to send ya a hundred or so. Did any of you have the trouble with rad burns, so badly you couldn't eat, or didn't want to eat for 3 weeks? I have heard that being zapped with rads twice a day, 5 days a week is rare. Is that true? Thank you all for the prayers, Lord knows we need all we can get. I will be praying for you all too. God Bless You All! ~Skye~ P.S. He does the "Thumbs UP" too. Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 16, 2005 Share Posted November 16, 2005 Skye, We warmly welcome you to this wonderful family. We are full of hope, support, and we DO believe in miracles. Your uncle is added to my very long list of folks I choose to keep close in prayer. And you too are being kept there. This is a nasty disease and we all need all the good thoughts, hopes, and prayers we all can muster up. Come often and let us know how things are. Come and ask your questions. We are only happy to be able to help you. Kasey Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted November 16, 2005 Share Posted November 16, 2005 Sounds like your uncle is SCLC extensive diagnosis. No, it's not unusual to have radiation twice a day, five days a week. I also had that and it was tough, very tough to eat at the end. It takes a while to get over it. See can he take as much Ensure as possible (it'll keep him going - it kept me going). Stay away from any food that has acid (tomatoes, sauce, orange juice) stick with bland, easy to go down foods (farina, ice cream, popcicles, yogurt, etc.) After a while the hurt will get much less. I also had cisplatin and etoposide. Keeping you and him in my prayers. Tell him to keep fightin' there are many here with extensive SCLC that are doing fine. Joanie Quote Link to comment Share on other sites More sharing options...
carolhg Posted November 16, 2005 Share Posted November 16, 2005 Skye please know that my prayers are with you, your uncle and family. Quote Link to comment Share on other sites More sharing options...
kamataca Posted November 16, 2005 Share Posted November 16, 2005 Skye, Welcome to you! I'm so sorry your family has been through the ringer with this. I know the most frustrating part is feeliong like you "can't do anything," but you can do so much to support them! The people who have supported me the most aren't the ones with grandiose gestures, but the ones who listened when I needed to talk, stepped in to help out with the little things, offered before I could ask, and MOST of all, kept me laughing when I hit the wall. Maybe you can't cure the cancer for him by yourself, but you can love him and support his family. That means so much! Peace on this journey. Keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 16, 2005 Share Posted November 16, 2005 Welcome to the site Skye, glad you found us. Keep us posted on how your uncle is doing. Lots of good info here. Rich Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 16, 2005 Share Posted November 16, 2005 Hi Skye, Welcome, sorry you had to come here but as you can see we are a very caring support group. You seem to have a very positive attitude and that is part of beating this thing. If you have questions ask away as there is always people her to answer your questions. There is always "Ask the experts" if you need to know something that you cannot get an answer. Again welcome... we are always here for you. Maryanne Quote Link to comment Share on other sites More sharing options...
Skye Posted November 16, 2005 Author Share Posted November 16, 2005 I talked to my Aunt lastnight on the phone. Doc did a Barium swallowing test on my Uncle, said nothing is going on with his throat, other than it needs more time to heal. Thank God! As the saying goes " always darkest, before the dawn". Still alongway to go, but when he is able to eat again, it will enable him to withstand treatments to come. Thanks to you all for the welcomes, and helpful advice. I am so grateful to have been led to this haven. Will keep praying for all of you, as I pray for him. LOL, Peace is my usual sign off. Good to see someone else uses it as well. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 18, 2005 Share Posted November 18, 2005 skye, Kelly (Kamataca) said a mouthful. I have to agree with her idea of what good support means. It is a special gift to know what to do and when to do it. I have heard of the twice daily rad. Just after I had finished my treatments is when I heard about it. If I were to do over again, based on what I had read about it, I would have chosen the twice daily. The studies done showed improved survival. And, if I remember the doses were lowered (although cumulative). I can see how they might feel terrible though as there is not 24 hours to heal in-between. Alot of people here seem to have gotten relief from cold foods and treats. Cold burned my wounds. Hurt and ached badly. Room temperature food and liquids were what went down the easiest for me. Everyone is different, I guess. Will look for more updates on your uncle. What is his name? In my opinion, I think He loves us even more when we ask for our miracles. Shows we have faith in Him, in His abilities, in His power, in His boundless love for each and every one of us. Cindi o'h Quote Link to comment Share on other sites More sharing options...
ma's kid Posted November 18, 2005 Share Posted November 18, 2005 Welcome Skye! My mom had problems with her esophagus and her doc prescribed *magic mouthwash* (has a numbing med and you actually swish and swallow) and liquid tylenol with codeine...both of these helped a bit and she was able to swallow a little easier. My mom seemed to tolerate anything soft and cool. It took a good three weeks after she finished the radiation treatments for the soreness to lessen. My prayers for your uncle and family. He's very fortunate to have such a caring niece. Blessings, Libby Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted November 18, 2005 Share Posted November 18, 2005 Welcome, Skye. No medical experience to share, but just wanted you to know I'm sending caring thoughts to your uncle, your aunt, you, and your whole family. Hope between experiences shared here and doctor's treatments your uncle's throat pain will lessen. Leslie Quote Link to comment Share on other sites More sharing options...
icbn Posted November 18, 2005 Share Posted November 18, 2005 Skye, Your Uncle is very lucky to have someone this concerned about him. You are a blessing. Bill Quote Link to comment Share on other sites More sharing options...
Skye Posted November 19, 2005 Author Share Posted November 19, 2005 Hey y'all, Cindi I had replyed to your last post, went to "preview", then my whole post went POOF! I will not preview again. lol Yes, everything Kelly said it true. Thank you Kelly! I just wish I could do more. I was my Mothers caregiver, after a major CVA to the brainstem, which left her quadraplegic, and unable to speak. She lived 11 years, at home. I've seemed to have the "caregiver" nature, all my life. Which is why I feel so useless with this situation. So I do what I can, even though I want to do so much more. Cindi, you're just a ray of sunshine, and some of your posts make me laugh, even though I might be in tears. You're right about the twice a day rads, they are at a lower dose. It really threw him for a loop though, not having down time between treatments. The only thing he will eat is ice cream, very little,just a spoonfull here and there. Other than that he doesn't want anything going down his throat. Praying for miracles: I totally agree with you. Seems here lately, I find it hard to express myself well. What I meant, is I wasn't sure if I should pray for him to live , as he is suffering so. That it might be selfish of me to want him to keep living this way. Even so, I feel as long as he is willing to fight this d**** disease, I will continue praying, and not stop. I told my Aunt what you said about many people here are praying for him. She really appreciates all y'alls prayers, as I do. I have updated the profile. God is answering,loud and clear! His name is Darwin. Cindi,Libby, Leslie, Bill: Thank you all for your kind words, advice, and encouragement. I truly feel God led me to this awesome place, with so many careing, compassionate people. I can't began to thank you all enough. Peace and Love! ~Skye~ Quote Link to comment Share on other sites More sharing options...
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