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What should we expect?


amyrig35

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Hi. I introduced myself in the Welcome section yesterday and was hoping someone might be able to offer some advice. My Mother-in-law was diagnosed (without biopsy - she has refused) with lung cancer and she does not want to receive any treatment. She is taking medication for high blood pressure, something to improve her sense of taste (food doesn't taste right) and a few other things. Can someone tell me what symptoms or problems we should expect? I realize that everyone is different, but every time she mentions something we don't know if it represents a major change or if it is not related to her illness. She is blaming the way she feels on the medicine and has been asking her doctor to change her medication. How do we tell if it is the medicine or the disease? She was admitted to the ER when her face and mouth became swollen and she had trouble breathing and I have learned that this can be caused by the cancer. She has no energy, swollen ankles, is loosing weight and, not surprisingly, is miserable. Is there a "typical" list of symptoms that we can expect her to go through in this process? I know that this is a hard question to answer, but anything would be helpful. Thanks.-amy

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Amy:

I am so sorry you are dealing with this -- I can relate in a lot of ways about the denial thing. Unfortunately, I don't think there is any "typical" list of symptoms or way to know whether symptoms are being caused by the disease (if it even is LC..... with no biopsy to support the diagnosis) or by the medications. The ankles swelling, for example, could be the disease, could be side-effect of an imbalance of electrolytes (easily corrected), or could be side effect of a new medication (or combination of them). In my personal experience, no one can really tell you what problems to expect or when -- I asked the same thing in the beginning and found that all I could do was deal with the problems as they occured because they are so individual and often don't happen to everyone.

The true answer to your questions can really best be addressed by MIL's doctor, if your MIL will let family attend a meeting with him or her. Will your MIL let the family help advocate on her behalf? Advocacy doesn't mean overriding her decisions, just helping her in her journey with this -- if she believes medications are a problem, family could help voice her concerns and get changes made, for example (if that's really the problem).

Not sure how much help this is, but trying -- hang in there.

Linda

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Linda,

Thank you. I'm sure you are right. We spoke with her daughter (my sister in law) last night and she is going to try and talk to the doctor directly today. To see what we can find out from him that my MIL might not be telling us - or might not understand. To confuse the already terrible situation, she is hard of hearing and her doctor has a very heavy accent. I'm not sure she hears and understands everything that he says to her. Unfortunately my SIL doesn't really want to hear any of this either... but I hope we will learn something more today.

-amy

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That definitely makes it tricky with a hearing problem and a doctor with a heavy accent -- glad SIL is going to check with the doctor....it's very hard for family advocates to stay "neutral" (so I've found); really helps to have questions for the doctor written down in advance in a notebook that you carry with you to every appointment. The notebook is also a place to record exactly what the doctor says so that MIL can be reminded later what the doc. said and that the rest of the family can be brought up to speed accurately at a later date (especially if SIL is like me -- I do well in the doc's office but can lose it later).

Also recommend to keep a current list of MILs meds in that notebook and record any changes that were made and when; MIL's symptoms too that the family has observed and when......this will really help the doc. help your MIL to the best he can. If MIL will allow it, family should get a copy of lab results or any other test results done on MIL as well.

Keep us posted.

Linda

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Amy,you're right it is hard to describe the many many different symptoms that go along with this disease.

As mentioned above I think having someone help advocate for her with the docs is very important.It doesn't mean she can't make her own decisions but she needs someone to listen,hear,ask questions etc. for her.

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Amy -

There is active dying process that many of us have watched our loved ones go through -- there are many common steps -- yet it sounds like you are not "there." I agree with everyone else, get an advocate involved -- whether it is you or your husband or whomever -- make sure you have complete information.

I am sorry that you have to go through this, and am so sorry for the pain that it causes your whole family. We are here for you.

Holly

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