Introducing Myself

[AprilH]

Not sure if I'm doing this right or posting in the right place but here goes anyway... my name is April I am 26 and have two children, ages 3 and 7 mos. My mom was diagnosed in August with NSCLC Stage 3B. She is just now on her fourth day of chemo/radiation and is not tolerating it well. She doesn't get out of bed, sleeps most of the time, and can barely speak or swallow. I am reeling from how fast this has come upon us and how much worse she gets by the day. Her 50th birthday was September 10. She has a very large growth in the area of her neck/shoulder that is the source of most of her pain as it is pressing on nerves in her neck.

I really don't know what to say or how to act... I usually just sit there and watch TV with her... but inside I am screaming at myself for not saying something to her... but I feel like everything I say is wrong or sounds trite... please help. She is in so much pain that she is easily irritated.

I'm here just looking for people that care and can offer any kind of comfort.

[Ry]

April-

I am sorry about your mom. Chemo is hard and it takes the good cells along with the bad. Just try to keep her hydrated and nourished while she is feeling so ill. When my husband was sick we also spent a lot of time just watching movies and TV together. It is ok to just "be" and let her know you are there for her. Keep us posted on how it all goes-- we've all been there and we can help.

Rochelle

[SandraL]

Hi April. I am sorry about your mom and your need to be here. But yes you are in the right place if you are looking for kind supportive people who get what you are going through. I was also Stage 3B at diagnosis. Feel free to vent your feelings and ask any question here that you like. Many here will be eager to support you. Chemo can be quite nasty and the most important thing is to stay hydrated through the process. Just being there for your mom is so important. Ask her what you can do for her and you will be doing all you can. This is so hard for all involved. Be sure to tell mom of the success stories you read here. Take good care of yourself too. Prayers that your mom's treatment is successful.

Sandra

[MsC1210]

Hello April and welcome.

I am sorry you had need to find a site like this but glad you have joined us.

Please let us know how we can be of help.

Warmly

Christine

[Patti B]

Hi April-

Welcome to the forum!!! So sorry about your mom's diagnosis and how hard the treatment is hitting her.

I agree with just being there for her and letting her know you love her. She is very lucky to have you by her side.

Please be sure to keep us psoted.

Hugs - Patti B.

[Donna G]

Hi , glad you found us. I found out I had lung cancer because of pain in my shoulder and chest. I had a tumor up under my collar bone in the "apex" of my lung . It is called a Pancoast Tumor because Dr Pancoast discribed the sydrome it a tumor there causes. Read my story below ( click on it) Others here also have had Pancoast tumors. Please keep us posted. It is a tough journey but it can be done.

Donna G

[AprilH]

I am so thankful for all the posts, it made me so happy to see that all of you care and replied to my post. I don't fully understand why, but it means so much that you are there and care. God bless all of you who take the time. I will pray for all of you, too.

My baby boy learned to crawl this week! I wish my mom could play with him. Both of my kids adore their "mama." She is the one who always plays silly with them, really plays with them. Now she can't even have them in the room even though she wants them near they are too "high speed" for her pain level right now. I can't imagine how sad she is about that, she doesn't talk about any of it. She is very inside with her feelings. Will she feel better after the treatments are over? Thank you to the person who told me it's okay to sit and just "be" with her. That's helpful advice.

[Larry's Wife]

April, she will probably have up and down days. You just have to go with the flow. And yes, simply being in the same room, sharing a "comfortable silence" is good for the soul. I know that it is hard when our loved ones' personalities are off-kilter, but please know that it is the treatment that is causing this. It's not anything that you are saying or doing. With my Larry, some days I couldn't do anything right. Other days, I was the only one who could do it right. It's important not to take it personally.

Lynn

[Don M]

Welcome April. I hope your mom soon gets some shrinkage. maybe she could see a pain specialist in the meantime. Another reason to keep the kids form you mom is so that your mom won't be exposed to germs.

Don M

[Bud Baker]

Hi April. So sorry to hear about your mom. Chemo is mighty tough on most of us who have to endure it. I was certainly unfit company a good bit of the time I was on it, and I only did three rounds. In spite of the fact that I was very fit, it pretty much turned me into a zombie, too. Just support and help her the best you can. She'll really appreciate it, although there are going to be days that she won't feel like saying so.

Keep us up to date on your struggles. Sharing does help, and you'll find lots of caring and knowledgeable people here. Best wishes for you and her.

[AprilH]

Mom had a better day yesterday (Saturday). I went to see her by myself without the kids and spent the better part of the day with her. She wasn't as irritable as she was Tuesday, I even had her laughing a little bit because I was talking about painting her toes yellow with smiley faces so everytime she looked at her toes she would smile. Of course I was being dorky, but she thought it was funny.

It has been aggravating her that everyone constantly asks what they can get her to eat, what sounds good, what about this? this? this? etc... I totally understand, that would bug me, too, in fact it did when I had morning sickness and that wasn't nearly as bad... So I made her a menu, called "mom's menu" that is a list of everything she can eat (pudding, jello, baby food, yogurt) that's in the house so all she has to do is look at her menu and pick something that sounds good. She liked it and that made me feel good like I did something, anything that made it a little easier.

She starts week two tomorrow. Can I ask someone, when will she start losing her hair? Her hair is so long and thick... I tried to take her to get it cut shorter a few weeks ago because I read that it helps with the transition, so it's not so dramatic... but she got so much worse so fast that we never did get to. She wanted to donate her hair to locks of love. I'd still like to do that for her... maybe she'll let me cut it myself. I think the donation would make her feel better about it.

I have so much love for all of you that have taken the time to read my posts and reply. You don't know how meaningful it is to have people to listen and respond... but then again, yes, you do know, don't you. God bless you all.

[AprilH]

What does NED mean? I see it on a lot of posts and I'm not familiar with a lot of the terminology. Thank you.

[Barb73]

Hello April,

First, let me welcome you to this blessed place of sharing. Sharing, I have always found, lightens the load - at least, it has been for me.

To answer your question: NED means "No Evidence of Disease."

April, when my husband was first diagnosed, he was a Stage IIIB, and he has since been through many regimens.

We have spent many hours in Infusion rooms at the Cancer Center. At the time, depending on certain chemo therapies, he would have various levels of fatigue, but has had many months of good quality of life in between those regimens.

Yesterday, he was out in the sunshine mowing the lawn with me there using a hand mower while he piloted the electric mower. We got the job done.

If anyone told me that Bill would be doing all of this more than three-and-half years later, I don't think I would have believed them.

May your Mom have better days soon. Your being there for her is so very important. Our daughter is supportive of her Dad, and it is quite evident that he needs that - even though, he has not always been in a really great mood.

I send my wishes for blessings to both of you,

Barbara

[SandraL]

Hi April. It is hard to say when your mom will lose her hair. Mine was all gone before my 2nd round of chemo. I had cisplatin and etoposide. I think it was the etoposide that did it. She will know when she starts losing it and then it gradually comes out over a fairly short period of time, to the point where you just give up and get it shaved.

NED means no evidence of disease. Something which we all dearly want to hear. But shrinkage to tumours and stability is also very good.

My thoughts are with you and your mom as she starts her 2nd round of treatment. It can be very hard to get through, but getting through it can bring very positive results which is what I hope for your mom.

Sandra

[meeshy]

Hello April,

Pleae let me start by saying, I feel for you and your mom. I think this is the most difficult thing to live through/with and my prayers include all people experiencing cancer.

I have had many similar days as you describe with my mom and continue to learn about myself and her and this life changing disease. We made it through the chemo/radiation and are enduring continued treatment with a drug called Tarvceva. I wish I could say she was "out of the woods" but never mind that for now. When my mother was going through chemo and then radiation she also spent a lot of time in bed, cranky and in discomfort. Nothing was right, no one of us could make it right, whatever we thought we knew we didn't . She prevailed and she struggled for control of her life and herself. I did learn that I had to let her, let her do it her way. My dad and I tried to continue with the activities of normal daily living but truthfully, all we could do was wait for her cue and then try to satisfy her. Forgive yourself and forgive your mom and somehow accept that even if you think you are not "doing" something you are doing the best that you can. I can only offer my experience as validation I have found no answers or solutions but having felt guilty and confused I found relief in the fact that I was not unique and that sometimes, sharing with others was the best support for me. I hope doing so also helps you .

meeshy

[AprilH]

I spent the day yesterday with my mom, she was comfortable and content thanks to good meds, we even got a really good hug/cuddle in, -- we haven't been able to do that in awhile because of the pain.

Then, last night after I had come home dad called me and said that mom had spiked a fever and he had taken her to the er. They are keeping her again tonight... my laptop baatery is about to die...more later.