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Caregiver...looking for support,answers,prayers,etc...


kimmek

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Hi, My name is Kim, and my Mom(66) was recently dx with nsclc, one small tumor located on her trachea, drs have said stage 3 because of location, although the cancer has not spread anywhere else. She started Chemo the day after she was diognosed and radiation the next day. Her treatment is low dose chemo once a week and radiation everyday for 6 weeks, at that time she will have a 2-3 week recovering period (drs have said they literaly will bring her to the brink of death before she gets better) at that point she will start high dose chemo once a week every 3 weeks for 4(four) rounds of chemo. The drugs being used for treatment are Taxol (Paclitaxel) and Carboplatin (paraplatin). She was not a candidate for surgery due to the location of the tumor and she was a 40 yr smoker, having quit 5 years ago. Other than her lungs, she also has COPD, she is in great health. Mom is probably the stringest person i have ever known, but not sure she is up for this battle. She lives alone, and although until 3 weeks ago was working fulltime, she is a loner, doesnt have alot of close friends. plenty of friends thru her job at the Cathoilic private school where we live( all of her doctors are parents of students that go to her school, so for the most part she has known some of her doctors for years.) I am extremely worried about depression and her sitting at home doing nothing but worrying. She has never been one to talk about herself, or complain. She had quad bypass heart surgery 18 months ago and other than at the hospital, never took a pain pill during her recovery. I think because of addictions in our family that have hit close to home she is terrified of being addicted to something. She does not cook, peanut butter and jelly sandwhich is fine for her, and she is trying to eat while she still can, but its really hard to have any type of well balanced diet. The only activity she has, is her computer which she plays canasta on. She is not interested in reading or learning anything about this horrible thing, says i can read it and if she has a question she'll ask me, and i do not mind this at all, but think she should be a bit more involved in whats happening to her. I have no clue what to do to help her. She is not interested in joining any kind of support group. I am going to try getting her to check out this site online and see if that will interest her. I think she needs to strenght and hope and friendship that she can gain from a support group. She needs more than ME. There really is no other family to help, my brother is about 3 hours away, so on a day to day basis her care is going to be all mine and thats fine with me, but...............My grandmom (her Mom) lives here she is 86 and very active, and can take her to appointements etc, if i need her too as well as a brother and sister in law, but she doent even enjoy them coming to visit. she doesnt care for company in general or like talking on the phone. The cancer has not caused her to be like this, she has always lived like this. Her life for the last 20 yrs and evolved only around me and my 3 kids. She is not active nor am I in the church community, although grandma, and aunt and uncle are. If anyone has a Mom like mine or even if you dont i would love to hear from you about anything, I cannot seems to get enough information and knowledge( I am just the opposite from my Mom)...thanks for taking the time to read this i know i kinda just rattled on...

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Hi, fellow Texan! Kim, I am glad you came here for support and answers. Plenty here. My wife also has NSCLC, and is Stage IV. She has survived 21 months already. If your mom is getting radiation, especially on or near her trachea, she may experience some loss of voice and difficulty swallowing, but it does get better after the radiation is over. Also, having chemo and radiation at the same time, she will tend to get very tired and more importantly dehydrated. She will need plenty of liquids, whether she wants to or not. It can land her in the hospital if she doesn't. I would ask the dr. if it would be wise to have a weekly IV of saline solution to help prevent this.

Your mom will need to keep nourished also. And she will not always feel like it. That's why it is so important for someone to keep track of her and be sure she is eating, even if you have to go totally to liquids. Sometimes you have to insist. It is for their own good. My daughter called me the "food Nazi" because I was always poking food at my wife. We found that a little food every two hours worked better than the normal three meals a day. It also helps fight the nausea, with food on the stomach.

Your mom has to realize and come to grips with the fact that it is no longer "business as usual". She can't return to her isolation like she has. It is not good for her to be alone through this. She will need to reach out to people to help her, even if she doesn't want them to visit. You are right, "she needs more than you". It is hard, but it must be done in order for her to fight this beast.

As for addiction to pain medication, our oncologist told us that as long as the does covers the pain, it is not addictive. It is when your dose is significantly above the pain level that addiction can occur. My wife is still on low dose morphine since her spine is damaged from the cancer, and we check it out to be sure the pain is covered and not a lot more.

You will need support also. I had to learn to reach out and seek help myself in taking care of my wife. I needed breaks and someone to talk with. Good luck and blessings. Don

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I would bet that the people at the school would pitch in , most of us need some help when we are going through treatment. People at my church not only prayed for me ( which I think is very important) but drove me the times they had to medicate me and I was not to drive, offered meals, listened when I needed an ear, etc. Depression seems to be a part of this stessful illness. Along the way it is likely that she will benefit from an antidepressent pill. Sometimes it seems like we are not "facing" our illness but I think it is so stressful, there is a limit to how much one can cope with at a time. Denial, in other words, can be protective for a while. If you can go to appointments with the Doctor and take notes or a recorder that would be great, it is hard to "hear" all that stessful news also. Now keep in touch and let us know how things are going. Donna G

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Hi Kim,

My heart goes out to you and your mom, I think from what you have written that your mother is still in shock for lack of a better term from finding out she has Cancer. May people can't beleive that it could possibly happen to them, and then when it does they are mad, upset, lost, and afraid. Who wouldn't be, the biggest problem I can see is she seems to have given up, resigned herself to what she feels will be the final out come, this is a big mistake, she must have and keep a positive attitude, she has to believe that she'll beat this and not give in. You say that she has no church community ties, I' m not here to preach, but I do know that for myself Faith is what got me through my cancer( stageIV), with only 3months given- that was 3 years ago. Everyone must have something to beleive in something to rely on when things are put in a place where you can't control it yourself and their seems to be no hope, for me my faith in God and His power did it. I would be glad to talk to your Mom if you thought it might help, I am a PHONE BUDDY and if you get in tough with ALCASE or e-mail me I will tell you how to contact them.

In Christ,

Greg

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Dear Kim,

I am so very sorry that you and your Mum are going through such hard times. I think Don "said it all'": he is such a wise man. I do hope you can encourage your Mum to join our group. If she would do that she will not feel so alone. Prayers coming your way. Paddy

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Hi Kim,

I'm sorry you are having to deal with this disease at all, and I know it's always hard when it hits our moms. I think an easy first step for her would be this web site. If you can't get her to log on, print out some of the threads for her to read so she can see all of our pictures and know that we are all real people dealing with the same fears that she and you both have.

Best of luck with this, and let us know how it goes.

God bless you,

Peggy

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Kim,

Hopefully all that radiation and chemo will shrink your mom's tumor into virtually nothing. The great news is that it hasnt gone anywhere! Your mom still has so many options, be so gratefull for that. Keep us posted on how shes doing

Jamie

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Thank you all so much for the response to my first attempt at a support group. I already feel as though i have found a WONDERFUL, SPECIAL PLACE and that there is hope!!! I want to try everything, as someone said I'm gonna fight this tooth and nail, and we wont go down easy!! I just dont know where to start. Vitamins,exercise, her diet, herbal supplements, i kinda feel overwhelmed. I am definetly going to go to Mom's today and take her here to this site and show her all the lovely notes from all of you. If that doesnt impact her I dont know what will!! I am not sure how this site works as far as responding to your individual messages, and i hope this gets to all the right people, but I will play around in here and make myself more familiar with the site. Thanks again and I will check in here daily now as we start our 3rd week of treatment.

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Kim,

I wish you and your mom the best of luck. It will be a roller coaster ride, but then the rest of us are here to ride it with you. I hope you mom comes around to the point where she wants to fight to win. And if it is her choice is to go the path less traveled, know there are others here that have made that choice too and still have good quality of life.

I know it is hard for you right now. I can't imagine how your mother feels. Just be there for her. The rest have given you wonderful ideas and suggestions. My only suggestion is to keep loving her for who she is and be there for her in anyway you can.

I am sorry you have to deal with this.

You are both in my prayers.

Shirleyb

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Best of luck and your mother is lucky to have your support. Yes, I think she will be more involved as time goes by, others have given you great suggestions.

I will just add one - since you are cooking for your own family every day, it wouldn't be too hard to just make up a plate and leave it in her refridgerator. You wouldn't have to even be picky at this point, just whatever you are having. It will relieve her of having to think of something (or openning the P-nut butter) and it is something realistic and solid you could do right away. Might want to lay in some soft cool foods like ice cream popsycles, for times when eating might be harder for her. I wouldn't even ask, just do it.

If others want to help, start organizing others to cook and rides - she doesn't have to love them back, just accept a little help. If she protests, maybe she will accept when she realizes it is help for you.

Keep in touch. Margaret

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Dear Kim,

My husband had some of the same reactions when he was diagnosed and is still not being very proactive when it comes to finding out about the ins and outs of lung cancer. He has left it to me, and I am doing all the leg work. But, like you, I have printed out a lot of the information/messages/etc.,etc., that I have discovered and this website has been an enormous help. Even if he says he doesn't particularly want to hear about it, I tell him anyway. And I notice that he IS listening.

If you can arrange to go with your mother to all doctors' appointments, you can be her spokesperson. I know that Len is finally beginning to speak up himself, but he still relies on me to ask the questions and follow up on things. That's fine with me, but I'm glad to see him gradually become a bit more involved.

It's hard for people to change life-long patterns, and you probably won't get your mother to do so in a major way. But she probably is having the very understandable depression that comes with this diagnosis. I know Len was, although he tried to deny it. Again, that's where I came in -- talking to the doctor about it, getting medication, etc., etc. And nagging him to do the things he needed to do. It's not a great job, being the official nag, but it's a necessary one!

I've also done an endrun around him in terms of involving other people. It's very good for him to have family and close friends around -- he perks up considerably -- so I've gradually brought more and more in. Now he looks forward to seeing them. Still reluctant to meet with other people -- doesn't want "pity" or stares or..... But he is getting out more and enjoying it as well.

I've also had to push the exercise button a lot -- he would just have sat around in a chair inside all day long if I hadn't insisted on little walks at first, then longer ones. Now we're doing a two mile walk almost every day and he's feeling much better for it (he had a lobectomy in late April).

I'm glad you've found our board - it's helped me enormously -- and thus, vicariously, my husband. Your mother will eventually find her own path through this, I'm sure.

Ellen

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Welcome Kim and mom (hopefully :) )

You certainly have gotten off to a flying start in helping your mother fight this monster. If your mom starts checking this site out, bet she'll get addicted to it with all it's wonderful support and great info. I just wish I had more time to check in more often myself. Anyway, you keep coming and at least get support for yourself. It really helps!

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Kim -

I am so glad you found this wonderful place (I think I posted to you on the Yahoo group). These are by far the most knowledgeable, compassionate group people around. They will be your biggest cheerleaders and pick you up when you are down. I don't post much but read EVERYTHING and I can say without a doubt you are in the right place to help your mother as well as yourself.

As someone told me when I first joined, welcome to the club that nobody wants to be in.

Much Love,

Amy

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