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newbie here too....mom w/ nsclc


abbyall

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Hi everyone

I have so many questions- don't really have a clue where to start.

My mom had surgery to remove a portion of her right lung just this past week. We had our first appt. w/ her oncologist yesterday......

sounds as if they will soon start radiation. We will go for brain mri, ct scans and bone scans within the next several days.

I hope to be able to get in touch w/ a social worker from the hospital- as when they released her- NO ONE had spoken to the family about her support systems that were in place to make sure she was cared for. My mom lives alone. I've basically walked away from my job and family- husband and 3 kids.....to live there with her and care for her. Her surgeon gave me the impression that she should be well enough to care for herself in just a few weeks time, but i've come to the realization thats not very practical advice........dr appts alone are going to be alot from the looks of it.

I don't know where to turn- I dont want to abandon my mother - but I must work. Another factor in all this is my husband is also facing possible cancer. He goes tomorrow for bone marrow biopsy. What WILL I do if he is facing long term health issues too? I need to find info and caregiver support

can i scream now? LOL

Abby

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Yes, Abby, you can always scream. Just do it in a safe place.

I think talking to the social worker is a great idea. Try calling the American Cancer Society also. They have programs where they drive patients to chemo and such. I called them when I was first diagnosed in 93. They were very helpful and comforting.

I found 1-800-4CANCER helpful as well.

Do you have a minister to talk with? With my last cancer, I spent time with him and that was helpful as well. Church brought me dinners.

Stay on this site. We're here.

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Abby, I am sending positive thoughts and prayers your way. Not only do you have to deal with all these new and frankly, terribly scary emotions, you have so much weighing on your shoulders as well. Just don't ever forget to ask for help. If you don't and take on too much, or if you keep it inside, you're going to explode! It's then that your loved ones get hurt and then that you will feel terrible. There's nothing wrong with asking for help and confronting the people in your life that are supposed to love and support you. Good luck and let us know how it goes.

Hugs! :)

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  • 3 years later...
"abbyall"]Hi everyone

I have so many questions- don't really have a clue where to start.

My mom had surgery to remove a portion of her right lung just this past week. We had our first appt. w/ her oncologist yesterday......

Well, 3 yrs later, and I'm back for support. Oncologist has given Mom 3 months. She's now in a nursing home. We go sometime next week for a brain scan. The original lung cancer has moved several times over the course of the last couple years.

I need to prepare...........

sigh

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3 Months? how do they know that. No one knows except God. Lots of folks here have beat that number a long time ago Ya know. Thete have been many advances in the last couple of years that this could be doable and beatable and ya know what I am saying. Scream Rage THROW EGGS OUTSIDE! That is my favorite. No n eighbors behind my house thank Heavns. Saying Prayers for Mom Let me know what you need to find out or want to find out and I will be happy to help out. First Link Click on below to be redirected;

http://www.cancer.org/docroot/home/index.asp

Mom can beat this thing and we can help you whenever you want or need.

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Abby,

Do what you need to do to stay as sane as possible. I like to scream along with the radio in my car. Must look like a crazy lady to the folks next to me at the stoplight, but what do I care?

Don't give up hope and make every moment count. Cherish the time you have, rather than worry through it all. As stated, only God knows times. Take good care of yourself while you take care of your mom.

:) Kelly

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"ma's kid"]In your original post, you mentioned your husband was going to have a bone marrow bx...how is he and hope it's ok that I ask.

Libby

Hi Libby and Everyone!

Thanks for all the replies, you've really made me feel welcomed!

As far as my loving DH, that bone marrow scan showed "nothing' of significance. He has been monitored by hemotologist/oncologist for the last 4 yrs for high monocyte counts. They cannot find anything....

He's been poked and prodded and tested probably as much as twice a month by many doctors. They've done a little of everything on him, PET scans, CT's, lots and lots and lots of blood work- tested for different types of LYME, ect ect.. at current, after a round of antibiotics for chronic sinitius, he is working w/ docs on deviated septium/sleep apnea. I'll say one thing, it appears they are going over him thouroughly! He's not "sick" or in any pain- so at this point all he can say is - no news is good news?!?

And Mom, yes, I know only HE can put a date on a calander. I know my mother has done the near impossible in her will to fight this! I wish I had been more informed in each step of the treatment and progess. I look at your timelines in your tags, and I feel guilty for not cornering the doctor and demanding more info, and not backing down when he appeared to be rushed, or when he brushed me off with the impression it wasn't of importance. Have I said how much I dislike doctors now? ha!

It's not like I wasn't there in the office with her, each and everytime.......!

I couldn't tell you if I wanted what form of chemo they are using now, but its very apparent she is not responding. We'll learn more after a brain CT scan next week.

Please share with me if you will, "how" to keep sane LOL. I feel so on the edge of a major melt down! Please don't flame me, but its getting harder and harder to deal with cancer on a daily basis. And yes, I know, I'm not the patient.

Add to the mix, 3 sisters who I'll be very nice in saying - are NOT very mature, or loving towards mom. :shock:

I've had days lately that I've *wished* to be hospitalized or thrown in a quiet jail cell myself, just for the peace and blissful ignorance!

I know - I know gotta be careful what you wish for- I might get it huh?

Take a day off? :roll: Mother has this amazing skill - All it takes is that sheepish lil voice saying "come see me..I'm all alone...."

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Hi again, Abby

Whew! Good news about your husband.

Keeping sane (there are those that would argue my sanity, LOL)...for me, it's trying really hard to take things one day at a time or on bad days, one sec at a time. It's just so difficult to see someone you love go through this ugly disease (as you know) and there are times when the feelings of helplessness creep in and *running away* sounds REALLY good. But, we forge on and do the best we can.

We're here for you, Abby.

Libby

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I'm sorry you're faced with this. We've been given the "probably only a few months" spill, too. My hope is that all of our families find health and happiness, and that we show these doctors that they don't know what God has in store for us.

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Everyone tried to get me to fold up and move to town and live with my son and be transported back and forth for my daily radiation and chemo treatments. So far I have had 28 radiation treatments and 4 rounds of chemo and have been able to take myself and get myself back home on my own. I would say definitely have someone take her for her first chemo because we can never be sure how a person will react to that treatment. I actually think that the fact I have been able to stay at my own place and care for my horses and animals on a daily basis is one of the things that has kept me going and kept me upbeat throughout this whole mess. Please let your mom do for herself what she feels she can do. If I had been forced to give up my independence I think I would be fighting a different fight right now. Good luck and take care.

Judy

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