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My MIL has nsclc and we are so out of the loop!


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My mil was diagnosed with stage IV nsclc in July 06. She lives across the country so we only get bits and pieces of what her treatment is and how it is going. I know she did chemo but there was no change in the tumor size, when it stopped for a few weeks, it grew and has gone to her brain. She just finished radition on her brain and has a few more left to go on her lung. My inlaws keep saying they want to come out here to visit the children. Well, they have not been out here in 3 years. My fil battled cancer 2 years ago and is in remission, then when they decided to travel, this happened. They don't want us to come out, because they want to come here. We have 6 children too, and I think they would like to see her. I keep telling my husband that I don't want there to be regrets, and if she passes soon, the kids, my oldest two especially, won't have closure. I am torn as to what to do. My inlaws are waiting for her to feel better, but I don't think it is going to happen as she has been very sick since starting her treatments. She is on so much pain medication, fatigued and battles nausea. I know in my heart unless we go there, she will not see the kids again, but when I broach the subject, they don't want to hear about us coming out. I think they are holding on to the trip as a goal. Reading this board has brought me some huge revelations on this disease.

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I am sorry about what your family is going through.

I personally am very big on honoring the wishes of the patient. My mother did not want people who would be invading her space and not letting her be normal.

This became quite the bone of contention as I warded off my grandmother (my mother's mother) with every single communication, as it was my mother's wish that she NOT be there until she wanted her there. The day never came, and my grandmother did not see my mother before she passed. But I and even my grandmother now to an extent, is happy that my mother's wishes were honored.

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Well, I'm not sure the motives for your in-laws not wanting you to visit. Could it be that 6 kids in their home might be a tad too much?? If arrangements could be made that all of you wouldn't be in house all the time, couldn't you visit and still hold onto the hope that they can then visit YOU at some later date? My guess is they are worried about having so many folks all at once.


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They might also not want to burden you with travel, expense, lost work time, etc. My mom is constantly worrying about everyone else and how her cancer is affecting us. We keep telling her we are all fighting this disease together, just in different ways and we want to be a part of it with her.

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Hello and Welcome to the board!!

My MIL also has stage 4 nsclc. We do live close by so I dont have that in common with you, however I do think she doesnt always tell us everything she is feeling to protect us, maybe or not let on the degree of her side effects? Not that I cant find out as I am allowed all her info from the Onc but maybe some of the smaller things like chemo side effects. I recently learned her feet have been tingling for months...that was news to me. I guess what I am saying is that it very well could be them not wanting to tell you (or admit to themselves) how things are going.

Communication is the biggest thing a family can have next to honesty. Maybe expressing your need to see them out there, with love and a direct inquiry as to why not if they refuse? The correct manner of communication can get answers without creating fights.

I wish the best for you in this tough time.

Beat it.

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From what I have been reading, it seems if you are in an advanced stage, like my mil, IV, you are constantly getting chemo and radiation. Do they ever feel better, as the chemo and radiation make her sick, she is in pain from the tumor pressing on nerves, she has had nausea since before getting treatments of any kind, etc... It seems some of the early stages go in remission, where they just need check ups and are monitored, but at her stage, it is so bleak.

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A few things to consider...

1. Is she taking her pain meds consistently? I have been told that it is imperative that cancer patients stay on top of the pain with their meds and not wait until the pain is really bad to take their pain meds. At that point, it is much more difficult to get it under control. A pain clinic may be able to offer better help than her oncologist. Plus, I wonder how much of this she is communicating with her onc. Patients often present an overly optimistic demeanor with their doctors and do not let on how much discomfort they are experiencing.

2. What is she taking for the nausea? There are many options for this. If her present med is not working well enough, try something else.

3. How would they travel? Can your dad wheel her through the airport to the gate without much difficulty for him? I ask this, because even if you request assistance and a wheelchair when you purchase airline tickets, the airport may not have enough staff to wheel her to the gate, and may expect your dad to do so.

4. If they decide to come, request a wheelchair when the tickets are purchased. You have to call the airline to arrange for this. Also, ask for handicapped seating.

5. Locate a cancer center near you that will accept your mom's insurance, and see if they will administer her chemo treatment. My mom did this so she could visit my brother & family in Dallas/Ft Worth, and it worked out beautifully. But do this well in advance as they will want copies of her medical records and may want to talk with her onc so everyone is on the same page.

Ecourage them to visit! You've all waited for 3 years for this, go ahead and do it!

6. If it is not possible for them to visit, perhaps you could go by yourself. I know, 6 kids...but with the right arrangements, it can be done.

All the best to you,


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My two cents' worth:

If they have a trip as a goal, fine.

You can have a super party when they travel to you.

For yourselves, esp your husband and son:

Make the trip and stay somewhere nearby, taking an extra adult/sitter, so you and/or your husband could see her for

brief periods of time with one or two of the kids. I do mean brief. That should not put her out or fatigue her, and that way you and your husband and your children would not be sitting on burning regrets of not seeing her one more time...

I by good fortune and happenstance did get to see my grandpa a few days before he passed, and I am so relieved even now, 34 years later, that I got a chance to see him.... no regrets, by God's grace.

Prayers for your whole family.



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