Debaroo Posted January 29, 2003 Share Posted January 29, 2003 Hi Renee, I was just wondering how your mother is doing? I know that you posted that she was doing better since she was taken off the neurontin, and you were going shopping together . I hope you guys had fun! Just wanted to see if you had any updates and to let you know that I was thinking about you and your mom. Take care, Deb Quote Link to comment Share on other sites More sharing options...
renee Posted January 31, 2003 Share Posted January 31, 2003 Thank you so much for asking... I have been so busy with mom that I havent' checked my e-mail for days. In the middle of all of this... I am trying to move. Not a good time for this but I have to... I need an extra room for mom. Anyway, the doc told us a couple of weeks ago that without chemo she will have about a month, with chemo we will have " a few more months". I'm not sure what a few more months mean, but that's what he said. So we went to chemo. last monday. Taxatere(sp?) so she goes once every three weeks. She is soo very tired, and complaining of heartburn. I have tried everything, if anyone has any suggestions on that I would be so greatfull. Nothing has worked so far. She is miserable with it. She is on 40mgs of oxy twice a day and 10 mgs of percocet every six hours but I give it to her when she wants it. The doc just changed her meds about 2 weeks ago, I need to ask for more. I stay up and give her meds to her at 11:00 that used to help, not anymore. The pain is getting worse. when she wakes up in pain she talks about her funeral. I hate that. Our pastor brought her a "prayer cloth", that helped for about a day. She is coughing more than ever and she says that she just doesn't feel good. I have kept an eye on her temp. and that's been fine. I don't know what to do now. I don't what are normal side effects from chemo and what aren't. I don't trust the doc after the neurontin thing we just went through. I'm so scared that she is dying. I know that is a horrible thing to say, but I am. She looks awful. Anyway, thanks again for your concern. Thanks to all for any help at all. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted January 31, 2003 Share Posted January 31, 2003 Dear Renee, I just want to let you know that I will keep you and your mother in my prayers. This disease is so bad. Have you considered hospice? I understand they really are advocates for pain control. I know this probably sounds scary, but the most important thing is your mother's comfort. Bless Ginny Quote Link to comment Share on other sites More sharing options...
Laurie Posted January 31, 2003 Share Posted January 31, 2003 Dear Renee, I'm so sorry to hear about the problems that you and your mom are having. My Mom's worst pain was when her lung was collapsed and we were waiting for chemo to start to work. I was told that small cell lung cancer is always inoperable... (Your Mom has Non small cell though). Mom was on Oxy, and we were on this wait for her to ask for meds mentality. We had to start giving her meds before she asked, all the time. She hated taking pills but we made her, to try and keep her comfortable. My Mom has talked about her funeral a couple of times. Man that just is the worst, she started to talk about leaving me stuff and i shot her one of these , one other time she talked about dreaming of who the pall bearers would be. One time she was lying in bed, really miserable and I was planning dinner, she was not happy. So I crawled in the bed with her and told her I was dying too. I cried twice as hard as she did, she yelled at me and said "Laurie don't talk like that", I said if your dying, I think I'm going to die. She sprang out of bed and we had a nice meal!! Seeing Mom pain and throwing up with terrible reactions to chemo is torture. We got the VNA Visiting Nurses, the nurses come a go to quickly...Hospice probably stay there longer. It is hard, do you have any help? Take care of yourself.... Laurie Laurie Quote Link to comment Share on other sites More sharing options...
renee Posted January 31, 2003 Share Posted January 31, 2003 Wow, I love this place. Y'all make a girl feel better. Nice to hear from ya. I don't have any help at all. None of my family or mom's friends come around her. When mom is sick and in bed, I call her sisters and beg them to just come and visit. I tell them that a half and hour would help her so much. I did get the pastor from our old church to come and pray with us. He brought her a "prayer cloth", that helped a little. I'm not concerned with me so much right now, just that mom needs people around her. Right now it's just her and me. She is on decadron now, what kind of side effects are there from that stuff? After the situation with the neurontin, I'm scared to give her anything. Has anyone been on Taxatere(sp?) for chemo? If so, what were the effects of that? Thanks again y'all, you are all I've got!!! Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted January 31, 2003 Share Posted January 31, 2003 Hi Everybody: I have always had a great concern for those who take care of us. Just last night, I noticed that something was bothering my wife. I asked her what was wrong and she gave me that old thing "Nothing". We,ve been married 32 years and I'm sorry, but I have learned that when she says "Nothing" it means "something is bothering me". If I am to have peace, rather than a "black cloud" hanging over us, I have learned to get it out of her. She then told me that she just found out that a women that used to work with has just been diagnosed with Lung Cancer. She didn't want to tell me because she was afraid that it would upset me. I told her that was not the case and that she should remember that i am on the internet every day corresponding with others who have lung cancer. The point is, neither the caregiver, nor the patient/survivor should hold back. One needs just as much support as the other. I, personally, get very concerned about my wife and I try to give her as much support as I can. I encourage her to get and be with her friends, as I can take care of myself, at this point. Communication is the key. Communicate with each other. I also try very hard to let her have her "space". She has told me that her greatest fear is losing me. I told her that my greatest fear is losing the battle. I have tried very hard to include her in all the decisions pertaining to my LC. This is my opinion, I have tried very hard to have an open line of communication with all the doctors involved, and that the open line extends to my wife as well. Everything has been "on the table" and there are to be no secrets. The caregivers/family members should be included and should be a part of the whole process. Obviously, there are times when the "patient" must lean , heavily, on the caregiver, but those roles can easily be reversed when a crisis ends. It is simply "give and take". Quote Link to comment Share on other sites More sharing options...
Guest patti_ann Posted January 31, 2003 Share Posted January 31, 2003 Hi Renee: I was taking decadron before every chemo treatment. The biggest side effect I had was moodiness. One minute I was happy as could be; the next crying my eyes out for no apparent reason or I would fly off the handle for something small. I remember one day I was trying to make swiss steak on the stove for dinner and it spilled over - I stood at the stove - stared at the mess and cried my eyes out - my husband thought I had truly lost it. Another time I was all upset because plastic lids fell out of the cabinet when I opened it up. I can laugh off these episode now but I am sure at the time my husband was like "oh my gosh - she has turned into the wife from hell." He use to tease me - like oh no are you taking decadron again - stay out of her way - So that's my two cents worth. I guess what I am trying to say is if your Mom seems moody it might well be the medication. Have a great weekend I will be thinking about you and you Mom Warm hugs Pat Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 31, 2003 Share Posted January 31, 2003 Dear Renee, What a load you are bearing! I don't know how you are doing it all by yourself. I know from experience that it can be harder watching a loved one suffer from cancer than it is to have it yourself! I hope that you can get some help from hospice (they were great) or the pastor or relatives. Remember that there is always hope, and that hospice won't change her medical treatment or prognonis, but the social worker and volunteers might help ease this difficult time for both of you, especially with controlling the pain. Prayers being sent your way. Quote Link to comment Share on other sites More sharing options...
Guest Posted January 31, 2003 Share Posted January 31, 2003 I like hospice/ VNA same thing, because they monitor the meds for you and if you keep a log for them, they will fix what they see is a problem. They will even call the doctor for you, take her temp, stuff like that... she if you can get the doctor to give you a referral! Here for you Laurie Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 31, 2003 Author Share Posted January 31, 2003 Renee, I'm so sorry that you have to bare all of this yourself. It sad that your moms family don't think about the future, and the guilt and sadness they will probably feel if they don't take the time to be with her. I think one of my biggest fears since childhood was that I would loose someone that I loved very much and not have taken the time to show that love. As for the decadron, I posted about my dad, he was cranky and he ate ALOT! He is down to less than half the amount he was on right after the gamma knife, so the symptoms are starting to wane. As far as the Taxotere, Dad was on that as his last line before Iressa-which is his current treatment. In all my Dad never really had many side effects from chemo, mostly he was tired. However, we did have him on Maitake Mushroom pills, flax seed which are supposed to help keep side effects of chemo to a minimum and aid it as well, and his diet was much more strict practically no sugar. These may have had to do with the fact that he experienced very few side effects, I really think they did. Keep up the good work, your mom is so lucky to have a daughter like you. Anyone would be lucky to have you in their corner. When all is said and done, you did the right thing by your mom, and you should know that. As for your moms friends and relatives, good luck to them-they will have to live with whatever guilt comes. Take care, Deb Quote Link to comment Share on other sites More sharing options...
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