kdgmom6 Posted January 17, 2006 Share Posted January 17, 2006 Hi, I'm new here and feel blessed to come across this board. I'm not sure where to start and my thoughts are so scattered. Please bear with me as I try to tell my story. My mother was diagnosed with Stage IV NSCLC the end of November. She has a large tumor on her left lower lung and 2 on her right lung. The cancer has spread to her brain. They have already done 10 treatments of whole brain radiation and 24 treatments of radiation/low dose chemo on her left lung tumor. She is now having difficulty with her heart. Her heart rate is high (158 per min). She is seeing a cardiologist and having more scans done tomorrow. I'm not sure what all this means. She is in great spirits and wants to fight but she is very tired. She has been hospitalized for dehydration. She is home now but still not eating/drinking much at all. She sounds awful on the phone and really doesn't want my sister and I to visit often. The three of us have always been so close and I feel a little shut out. I know that she is just trying to protect us but it's killing me. I have spoke with her doctors and they just try to encourage me. I have been cleared w/ mom and doc to have any info that I want. The doctor told me that her time frame could be grim a few weeks to very hopefull many many months maybe years. I'm not trying to be negative but isn't that a little odd? Everyone else seems to get a normal time frame. I feel that the doctor isn't being straight with me. I lost my brother during the past year to testicular cancer this road is to familiar. Thank for any info/comment/suggestion Quote Link to comment Share on other sites More sharing options...
nonni Posted January 17, 2006 Share Posted January 17, 2006 Hi Julie...first let me say welcome to this very caring and support group...you have certainly came to the right place...but sorry you had to be here Then let me say ...as many on here will tell you....DON"T listen to the doc's 'time frame'...anyway he is WAY off track...how can he say from a couple wks to a couple year's....He does not know honey...and neither does anyone else...If you read some of the profile's here...you will see people with stage IV and doing very well..and coping...and dealing with it like a chronic illness....If you don't think the doctor is being straight with you....by all means get a second opinion and a doctor that you are comfortable with... Good luck to your Mom...and my prayers are with her and you and your sister too....This is a very difficult time for all of you and I am so sorry...but if you can get to a good doc and start treatments that she needs things will be looking much better...God Bless PamS. Quote Link to comment Share on other sites More sharing options...
nonni Posted January 17, 2006 Share Posted January 17, 2006 Hi Julie...first let me say welcome to this very caring and support group...you have certainly came to the right place...but sorry you had to be here Then let me say ...as many on here will tell you....DON"T listen to the doc's 'time frame'...anyway he is WAY off track...how can he say from a couple wks to a couple year's....He does not know honey...and neither does anyone else...If you read some of the profile's here...you will see people with stage IV and doing very well..and coping...and dealing with it like a chronic illness....If you don't think the doctor is being straight with you....by all means get a second opinion and a doctor that you are comfortable with... Good luck to your Mom...and my prayers are with her and you and your sister too....This is a very difficult time for all of you and I am so sorry...but if you can get to a good doc and start treatments that she needs things will be looking much better...God Bless PamS. Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted January 17, 2006 Share Posted January 17, 2006 Welcome Julie! I personally would be considering a visit to see your mom and get a better sense of things for yourself. I realize you said she doesn't really want you to visit. I would explain that you need to for your own peace of mind. My words aren't exactly what I want them to be. I'm struggling. You know your mom better than anyone and what she needs. Take care. Quote Link to comment Share on other sites More sharing options...
karenl Posted January 17, 2006 Share Posted January 17, 2006 Hi Julie So sorry to hear about your Mom, and your brother too. Very sad. My Mum was also stage IV at diagnosis. Her doctors painted a pretty grim picture, but she did very well for 18 months, and survived over 2 years. It sounds to me as though your Mom's doctor is being quite realistic in saying that he really doesn't know how long your Mom has - I think the best thing that you can do in a situation like this is prepare for the worst, yet hope for the best. Doctors are under alot of pressure these days to be very forthcoming with patients, and for this reason will often include a 'worst-case scenario' picture (I remember my Mum telling me that when she was young, doctors often didn't even tell patients when they had cancer!). This is a wondeful site for exchanging information, and giving/receiving support. I am so glad you found it. I wish you and your family, especially Mom, the very best. Karen Quote Link to comment Share on other sites More sharing options...
Treebywater Posted January 17, 2006 Share Posted January 17, 2006 I wanted to speak to the issue of her not wanting phone calls/visits. I went through that too. For the first few months after Mom's diagnosis I was in WA and she was in IL. i tried to call every day, and after the first month or so (as she grew more fatigued from treatments, etc) she would talk to me on the phone less and less. I would get lucky if she would take the phone to talk to me once a week. I was heartbroken. I really was. I wanted to talk to my Mom! I was afraid I was going to lose her soon and I wanted every conversation I could have. It was SOOOO HARD To not take it personally. Then when I was able to go to her place and stay with her, I saw what a drain it was for her to speak on the phone. Speaking to me person to person in the room was a whole different ballgame (but still often tiring), but talking on the phone changed her patterns of breathing and exhausted her. And then there were times that just talking even person to person was too much. All that to say, let your Mama know how important it is for you to be able to see her and speak with her on the phone, but that you also don't want that to be tiring or difficult for her in any way. I know that's easier said than done, but maybe that way you can find a middle ground. ((((hugs)))) to you. I'm sorry you're going throug this. Especially so soon after losing your brother. Please come back and let us support you! Quote Link to comment Share on other sites More sharing options...
Donna Posted January 17, 2006 Share Posted January 17, 2006 Julie, My prayers for you and your family.. God Bless, Donna Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 17, 2006 Share Posted January 17, 2006 Welcome, Julie. Glad you are here. Don Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 17, 2006 Share Posted January 17, 2006 Welcome Julie. So sorry to hear you lost your brother and now your Mom is battling the beast. Cancer treatment generally is very tiring. Most of us need to nap and rest when we can or we are totaling wipped out. Short visits, help with errands, meals etc are wonderful. Statistics are not what will happen to your Mom in particular. We don't know for sure which of the statics she will be. Also many of the statistics are slanted because of the average age of lung cancer diagnosis up in the 70's "The average age of lung cancer diagnosis is 70 years and 5-year survival after diagnosis continues to be poor," The above statement means 1/2 are over 70! So if you look at it, did they die in 5 years from the cancer or just old age? Also many very old people never get any treatment! They either fear the chemo and it's affects or are discouraged from taking it! Please keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 17, 2006 Share Posted January 17, 2006 Julie, I sorry you need us, but glad you found us. As stated before your mom's Dr. is actually right. she could live a short period of time or defy all the odds and live a long long time. NO ONE knows for sure how long your mom will battle the beast. As for your mom not wanting to see you, I can not help in that area. My husband has lung cancer so he was stuck with me no matter what he wanted. I will pray for you and your mom. Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 17, 2006 Share Posted January 17, 2006 Hi Julie, My Mom was given 4 months and she went on to have a whole year with us and even a short summer where she went home to her house and was independent. I would visit even if she says no...they always try to protect us but I dont think keeping you away is any help to you. Best wishes for you and your Mom...Janet Quote Link to comment Share on other sites More sharing options...
Don M Posted January 17, 2006 Share Posted January 17, 2006 Hi Julie: Welcome to this board. I am sorry your mom has lung cancer. I suspect that Treebywater is right. It must be draining for your mom to talk on the phone. Perhaps you should go see her. You could encourage her to drink and eat more. She probably needs to eat soothing things such as ensure... items that are easy to swallow. "The doctor told me that her time frame could be grim a few weeks to very hopefull many many months maybe years." This means that the doctor doesn't really know how much longer your mom will live. I am sorry for the loss of your brother. I hope your mom can eat and drink more and can pursue her treatment and knock the cancer back. Don M [/b] Quote Link to comment Share on other sites More sharing options...
jang Posted January 17, 2006 Share Posted January 17, 2006 Welcome Julie...glad you found us. Quote Link to comment Share on other sites More sharing options...
kdgmom6 Posted January 17, 2006 Author Share Posted January 17, 2006 Thank you all for your words. I find this board very helpful. I'm going to visit her this week. I'm just going to pop in and not call this way she can't tell me no. Quote Link to comment Share on other sites More sharing options...
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