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New and very lost


tnangam

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Hello,

I am looking for some support. My mother was just diagnosed with adenocarcinoma - NSCLC. She hasn't started treatment yet. We still have to wait 2 weeks. We only found out about 3 weeks ago when she went in for the 4th time about a cough that wasn't healed by pneumonia antibiotics or inhalers.

She is very lost. She seems to be avoiding the situation. She is very scared and we are scared for her. I have researched until I can't research anymore and we have started her on juicing and eliminated sugars and tried to do everything we can to build up her immune system before she has to battle treatments. But the one thing research doesn't tell me is what to say. We try to get her out of the house, but she refuses. I want to encourage her to move and get some physical activity but she has no drive. She doesn't sleep well and on days she doesn't sleep she has a lot of anxiety. She goes back and forth about wanting to go to the cancer clinic and doesn't seem to have a lot of drive to fight. I am so scared because I know how important a positive outlook is.

I was hoping that by coming here, and by talking to cancer survivors you guys might be able to help me understand how she is feeling. I don't know whether to push her to be independent or let her be sad. I don't know how to encourage her to believe that it will be ok.

Any advise you can offer would be appreciated. About anything really.... I am brand new to this and have no idea what to expect....

Thank you.

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Hi tnangam,

Welcome here. It's so admirable how much love you feel for your mom. I would like to share this blog with you. It may help you to understand why she might be feeling the way she does. I will add a link for her next...

Patients to Loved Ones: 15 Reasons Why at Times I Want to be Left Alone « LUNGevity Foundation http://ow.ly/u538L

Here is one of my favorite videos for your mom if you care to show it to her. Please tell her that we are here to support her any way we can.

We also have several links in our Support & Advocacy tab on our main website page that can begin to guide you towards next steps. We also have an "Ask the Experts" area. You can research previous questions that were asked or you can even submit a question of your own.

http://ow.ly/u53Xo

Please keep posting and letting us know how we can further support you. We are here for you & your mom!

Sending hope, hugs & healing.

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So sorry to hear about your mother. Hopefully a plan of action will be in place before long and that will at least let you know what you are dealing with. I would have you mention to your mothers doctor about the anxiety and depression. They should be able to give her something to help with that. I myself was on a antidepressant called Lexapro for a few years and it helped me tremendously in dealing with the cancer and the anxiety. My thoughts and prayers are with your mother, you and your family. Please keep us updated.

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Welcome,

I'm so sorry you have a reason to be here, but I'm glad you found us.

How is your mom doing today? Why is it taking so long to get results/information/treatment plan? Is she a candidate for surgery? Has she had her tumor tested for any molecular markers?

Are you her primary caregiver or does she have a partner?

i know for me it helped to get all the answers and then have a plan to focus on. In the beginning it's so scary and overwhelming that you are just throwing drops into the ocean with your efforts. Once you have a plan and know that you are facing then your efforts can be and feel more concerted.

I suggest you visit our caregiver resource center and get some suggestions on questions to ask and next steps. http://events.lungevity.org/cg/index.html

I hope you post an update soon. Know that you and your mom are in our thoughts and prayers.

KatieB

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  • 1 month later...

Hello,

Thank you for your support. It has been awhile since I have written, everything was confusing for awhile. My mom was supposed to participate in a trial but the cancer spread too quickly and now does not qualify due to the severity of the situation. Her cancer has spread it is in her shoulder, her hip, her muscles, her lymphnodes, her face and there are small lesions on her brain. She started chemo last week she will do 2, 21 day cycles with radiation (on her brain and face) in between. Then we will do a new scan and see where we stand.

I am not the primary care giver nor am I the only one. We are blessed with a very close, strong family. Her husband is with her every step of the way and her primary caregiver, my sister is a strong backup to him and takes on a lot of responsibility. I am the main food cooker and distractor at home. I just try to be the optimism in the room.

She seems to be doing better, now that there is action she seems more optimistic about fighting it. We all have our down days but we feel hopeful about the future. Even if it just a bit more time or a quality of life she can live with for awhile. I pray every day the chemo works. I am hoping that because the cancer is not in her bones and only in her muscles, there is a chance the chemo could really work. Right?

I don't know how I feel. Which is hard. I want to believe she will be OK but I also don't want to be blindsided if she isn't. I feel like I want to be prepared but I don't want to admit that I need to be prepared. If that makes sense. I am very scared and we just try every day to make her as comfortable and happy as possible. She still doesn't leave the house very much but I think she feels better after visiting the cancer institute because she feels less alone.

I am not ready to lose her, so we just keep fighting one day at a time and hoping and praying that it will turn out ok.

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We continue to be here for you. I think sometimes it can be hard for extended family members, family members who don't live nearby or those who have to share the care with others. The lack of control, decision making, inclusion in decisions, etc...can be really hard emotionally.

Post here when you feel that way. We all understand and we will be here.

Continued prayers and best hopes for your mom.

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Thank you for the update on your Mom. I'm glad to know she has such a great amount of love and family support. As the others have said, please return here and ask any questions you might have or just to vent your feelings if you need to. I hope her treatment goes smoothly ((hugs))

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