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mom not doing well


debbie412

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i am very scared and feel helpless. my mom has lost complete feeling in her right arm and hand. she was dx in july 2002. she had 8 cycles of cis platin cpt11, radiation, etoposide, adreamycin w/vincristine, and currently on topotocan. nothing has shrunk her tumor since the cisplatin. she is getting worse daily. she is coughing pretty bad, looking really pale, and crying all of the time. my dad is with her right now. i take her to all of her treatments and now she keeps saying she does not want me to see her like this. every time i want to go there she says she is tired and not to come. i have twin 3 yr olds and a 1 yr old so it is very busy. my dad said that she is saying things like "i am going to die tonight" she says she wants to go to the hospital, then changes her mind. i feel like somebody is ripping my heart out of my chest and stepping on it. i am so helpless and dont know what else to do for her. thank you for listening and i am praying for everybody.

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Debbie,

I am praying for you. It's so hard to know what to do and I know that you feel helpless. Listen to your heart. See her if you want/need to, let her know that you love her and want to help her and that helping her helps you too.

She could be experiencing alot of things right now, from drug interactions, alot of pain, blood levels that are low, dehydration, all of it can explain her behavior. That and the fact that she is probably scared too.

See her. Tell her you love her and that you are there to support her. Take her to the hospital / doctor if you suspect something- anything!

I know words don't help you. They didn't help me. But knowing that there were people who knew how I felt made me feel less alone.

You are a wonderful daughter to come here for your mom, for all that you have done for her and all that you will continue to do. Your mom surely knows what a gift you are to her.

I'm praying really hard for your mom, for you and your whole family.

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Dear Debbie..

My heart goes out to you in this difficult time. As a mother who has cancer and who also has a loving daughter, I can empathize with your mother not wanting you to c her weak and in pain and afraid. I know if and when that time comes for me, I will probably feel the same. She loves you and doesn't want to cause you any more pain that she has to.

That being said, if you can somehow reassure her that you are strong and can handle it and that being with her hurts much less and being without, I think she could come around.

I wish you the best of all possible solutions. My prayers go out to you and to your family.

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Hi Debbie,

Sorry to hear that your mom is not doing well. Does she have Nueropothy in her hand and arm (numbing.) I have that in my feet and hands, it is from the chemo. Try taking vitamin B6, it helps me. Prayers for your mom and you. Stay strong and keep the faith. God answers our prayers.

Warm Regards,

Karen

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thank you for all of your replies. the dr did not recommend a brain scan because all of her symptoms are pointing toward nerve damage. it is all on her right side (where the tumor is) they thought she could have pneumonia but the xray showed it is from tumor growing. it is so hard. she keeps saying she is dying. i dont want to see her suffer anymore. she was doing so well, then when it took a turn for the worst it turned fast. i cant believe how every day is worse and worse. i am going there tomorrow to clean and fold clothes and make sure she eats. you dont realize how much you need your right arm and hand. my dad is doing his best to take care of her, but i think she needs a woman's touch!!

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Debbie,

Hang in there. Nerve damage or even impingement can cause a lot of those problems, and it is very demoralizing if you're affected on the right side and you're right handed.

I'd go see her anyway, with understanding and love, to let her know you REALLY want to come see her and are not being just polite.

If she's really badly demoralized, you might ask about anti anxiety and/or anti depressants if she takes nothing like that already.

Ask the doctor if neurontin is recommended for this kind of nerve pain or side effects. She may well be in ain, too.

I feel for your mom, she's very frustrated. Can't hold a fork, a book,... argh!! I was a basket case with my left arm, and I am right handed... I can only imagine how agitated she must be. Hard on you and your dad.

Prayers are with you that things settle down, and your mom is more comfortable with the nerve problems. They are a wretched thing to adjust to, I know.

Warmly,

MaryAnn

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Debbie

I'm so sorry to hear that your mom is feeling so down. We have tried to set some goals and things for my dad to look forward to - to live for his grandkids. I keep reminding him its all about living not for us (his childrent), but for them. Bringing them around puts a smile on his face, gives him something else to focus on for a while.

I'm in NJ too, if there is something I can do, even just a shoulder to lean on, please let me know. My DH grew up in Rahway and currently works in Rahway so we are close by ...

Paula

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Hang in there tough, Debbie. Looks like you are doing the things you need to do for your mom. You have to overlook what Mom says, because of her pain, her medications, the cancer, etc. Just continue to be there for her when you can, not neglecting your own family too mcuh. Blessings. Don

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thanx again for all of the responses. i went over my moms today to clean and do laundry. she seemed a little better emotionally but a little worse physically. she gets so out of breath so fast. i asked the dr about anti depressants and my mom quickly denied them. she hates taking medication as it is. she is starting to say she doesnt want to be alone. my dad has to work 3 days out of 5 in order to keep his health insurance. i will go over the other 2 and make sure she eats and is taken care of. she said she does not want any outside help. she is due back for chemo on thursday, but the chemo she is on is not working. i wonder if there are any others to try. she already had 4 different ones.

palves - we are very close actually. my mom lives in colonia,and i currently live in carteret, but am moving in 2 weeks to spotswood. how is your dad?

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Debbie

My dad is actually in a clinical trial through Robert Wood Johnson hospital. He is holding his own for right now - week 4 of the 1st cycle. He is starting to lose his hair.

And also gets out of breath easily.

He is on an anti-depressent - and you know although I don't think its helping him per se, he thinks so .. mind over matter.

Like you I'm busy w/ 2 kids of my own and I also work FT. My mom works, but my dad has been able to get himself to chemo pretty much. I went to his ONC appts w/ him. I'm considering getting a 2nd opinion maybe at Sloan.

And believe it or not, once you move we won't be far from each other, I'm in Marlboro and travel 18 and 9 to/from work .. email me privately at

paulanryan@yahoo.com I hope we can continue to support each other through all of this, provide some shoulders, etc ...

Paula

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Guest canuckwebgrrl

Debbie,

Others on this board know more about different chemo drugs than I, but I wanted to tell you I'm sorry your Mom is having such a hard time. Take care.

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Hi Debbie,

I just wanted to say that I am so sorry to hear that your mom is not doing so well right now. As others have said, try to remember that perhaps the things she says could be reactions from the drugs as well as her own way of dealing with what is happening to her. My dad was always very negative and worried us alot....but I wouldnt stand for it and I let him know it. Just 26yrs old and I was acting like the parent!

All you can do is be there for your mom physically and emotionally. Hang in there!

Tracy

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