Mom just diagnosed - NSCLC - Squamous

phxkross · New User Joined: 05 Mar 2008 Posts: 7

All,

I think I've read everything there is to know about the type of cancer my mom has been diagnosed with, and honestly, I'm a bit overwhelmed. I'm in a strange place where I know it's cancer, but as she hasn't been staged, I don't know where we're going from here. I have a heavy weight on my heart.

A little info, per the posting rules. My mom's name is Carol, she's 63 years old and has smoked since she was 16 years old. She was diagnosed with COPD (most likely enphysema) about 12 years ago and refused to quit smoking (she's a big believer in the power of denial), she's diabetic (not overweight), she's had pancreatitis 10 times (strangely, she's never been a heavy drinker), and she suffers from bipolar disorder (treated with medication and ECT).

(side note: I am a huge advocate for ECT, when it's needed. It made all the world of difference for my Mom.)

Needless to say, I love my mom, she's my best friend and the only source of unconditional love that I've ever had. I'm here for her, we're moving in together and I plan on being her primary caretaker for the duration.

She was diagnosed with NSCLC in her left lung, her lung capacity is less than %52, so the pulmonary Doc said that surgery isn't a good option for her, and he's scheduling a PET scan to see if the cancer has spread. She's seeing her oncologist for the first time as I write this. I'm at work, and feeling like a total brick for not taking time off to go with her.

I'll post more after she gets staged.

Thanks for listening.

Kenny
_________________
Kenny Young
Phoenix AZ
Mother diagnosed NSCLC / Stage 2 / Lobectomy Performed

helensgirl

Kenneth,
God bless!! I know exactly what you're going through, as I went through the same situation with my beautiful mother. I send positive thoughts your way, and hope for the best...Take care, Kim
_________________
...keeping the faith in n.c.
Helen, my wonderful mom, diagnosed May, 07
fought-stage 4 NSCLC, (adenocarcinoma)
earned her place in Heaven, Dec. 14th, 07

Tera · Senior User Joined: 31 Dec 2007 Posts: 100

Kenny, your mom is blessed to have you, although, I know if you are like me, its the other way around, right?! You are both blessed to have each other.

Hang in there, enjoy being with your mom....I too moved in to take care of mine before she passed on. It will be hard on both of you. Treasure the time you'll have with her. Although it is hard, you will have no regrets and will be oh so glad you did it.

koikkeril · Senior User Joined: 29 Jul 2007 Posts: 149

Kenny,
I know what you mean about a heavy weight in your heart, but God is blessing you both, with each other. You have a long journey ahead and it gets quiet rocky, but keep positive and stay in touch as we are all here for you. Thinking of you in my prayers. Lois

phxkross · New User Joined: 05 Mar 2008 Posts: 7

I'm stuck in pre-staging LIMBO, and I pray for patience every day. I find myself thinking the worst and constantly need to remind myself that I don't have all the information and it does no good to worry, yet.

My mom is in the hospital, they are trying to get her blood sugar under control before they can do the PET scan. She's got some heart issues going right now as well. The PET scan is the last part of the staging that they have to do.

I'm also busy trying to find a house for us to move into.

I have a couple of questions that maybe you loving people can answer for me.

1) How can I let my mom know how I feel about her without sounding like I'm saying goodbye?

2) Is it better to put on a cheery face, or is okay to let her know I'm scared for her?

3) To those of you who have been caretakers: Tips on keeping mom comfortable and happy.

Thanks!
Kenny
_________________
Kenny Young
Phoenix AZ
Mother diagnosed NSCLC / Stage 2 / Lobectomy Performed

koikkeril · Senior User Joined: 29 Jul 2007 Posts: 149

Hello there, I know your pain Kenny. I held my pain in front of my husband but occasionaly he caught me with tears. I was told to be cheerful and dont let him see me upset as it would upset him. Well after a couple of months trying to be this fantastic person, I was reading about a hospice and final days who adviced to others to speak honestly about how we felt to the person who had the cancer. I told this to my husband and then sat down and told him everything how I was feeling, how I was scared, everything. Oh we did change from that day on, we got even more closer than we were before and I never thought that was possible. We spent all our time together and we were able to speak about absoulutely everything. So for us, this worked out well. Remember its normal for you to be scared and if your mum and you are close, she maybe wanting you to speak to her, so she can also speak to you? My opinion only, go and tell her how much you love her, give her a cuddle and if you cry, its nature, you are her son, so show it! Being with your mum as much as possible would make her feel more happy. Fortuantly for my husband he now has no signs of his cancer, ned. But! you and your mum will be in my thoughts and prayers. God Bless you Kenny

phxkross · New User Joined: 05 Mar 2008 Posts: 7

Thank you for your great advice!
_________________
Kenny Young
Phoenix AZ
Mother diagnosed NSCLC / Stage 2 / Lobectomy Performed

pbj11 · Site Admin Joined: 12 May 2007 Posts: 805

Kenny,

Having lost both my mom and my husband to cancer, I truly believe you need to follow their lead. If she seems open to discussion of feelings, then go for it. I do get a little skitchy about dumping your fears on her though because they don't need that. They have enough on their plate.

Neither my mom or my husband ever wanted to go into those areas, and the one time I broached the dying issue, in a comforting way, to my mom (very close to the end), she kind of got upset.

Letting someone know you love them is fine. Dumping all of your issues onto the ill person is not fine, if they aren't amenable to that. I had to constantly remind myself that it was all about the patient's feelings, not mine. My fears could be dealt with through family members or friends.

Both my husband and my mom were fighters to the end and didn't want to discuss any other outcomes. So I jumped on board for the ride and supported everything they wanted.

Spouses are different from parents. My husband and I rarely talked about eventualities, but we didn't need to, because the doctor didn't b.s. us about the outcome when he was diagnosed. We knew from the beginning this was a no-win situation. We were bound together at the hip and didn't need words to know how each other was feeling. A look, a touch, a kiss, an "I love you" was how we handled it. This is pretty much how our marriage was and how he always operated, so cancer didn't have this huge "aha" moment that suddenly changed how we communicated with each other. It did deepen our relationship in ways that I never could have foreseen, but in quiet ways. Happy times and high fives when treatment worked and hugs and sadness when the cancer progressed. I think spouses protect each other from showing fear, at least that's how I've come to view our journey together. I knew he had no fear of treatment, but also knew he was horribly afraid to die. No words, just enough years of marriage to understand this man I spent my life with.

We also kept our children fully informed every step of the way, but they were not his care givers. They never expressed fears of any kind to him, but they did to me. They visited as often as he was able to have them around, but there was a clear line drawn when he wasn't up to visitors, including our kids. Phone calls were not limited and I let them call at any time to talk. Sometimes he was able, sometimes it was just me talking with them. We didn't want his cancer to be the center-point of their young adult lives. We wanted them to continue growing and moving in the right directions that their lives would take them. Basically, we all sucked it up for his benefit because that's the type of people we are. Now, since he is gone, the fall-out is that my boys are fine, but my daughter is going through difficulty because she was in huge denial during her Dad's illness and is going through grief therapy. So it goes...

The caveat is that men are different from women patients, but I found both my mom and husband (for one time in their lives!) operated the same when it came to their illness.

So again, an "I love you" is sometimes all you need -- she knows how you are feeling, she's your mother. Is she alone or is your father in the picture?

Follow her lead.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

phxkross · New User Joined: 05 Mar 2008 Posts: 7

PBJ,

I have read a lot of your posts and responses to posts, and I just want to let you know that I think you are a wonderful, strong, and loving person.

Your advice is spot on, and once again, you've moved me with your post.

I will absolutely follow her lead on this, she does have so much on her plate. I can't unload my fear and need for some sort of "resolution" on her, you are 100% correct. I do have a support system of wonderful friends to help me with those things.

My father is not in the picture, and mom is coming to live with me at the end of this month.

I'm silly. She IS my mother, of course she's thought of how I feel.

Thanks PBJ!

Kennny Young
_________________
Kenny Young
Phoenix AZ
Mother diagnosed NSCLC / Stage 2 / Lobectomy Performed

koikkeril · Senior User Joined: 29 Jul 2007 Posts: 149

Sorrrry. There is only me and my hub in a strange country on our own. PJB, has so much more knowledge on these issues, I should of thought more before writing. I agree she is a wonderful weoman and has been on the site for long time and knows so much medical, she's not far behind a Doctor. I just followed advice from a hospice report on the net, at the time i didnt know any different. Rolling Eyes

I feel for your sad time and apologise and hope with Gods blessing things work out just fine.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 805

koikkeril,

Don't be silly!!! Each of us has different relationships -- my husband was a man of few words and fewer emotions! What worked for us is not necessarily the end-all and be-all of relationships. I was just relating "our" experience. One size doesn't fit all! I'm glad that you and your husband talked things through -- what WOMAN doesn't want to do that? I think you are lucky. I just happened to be married to an "old-school" kind of guy! Rolling Eyes

I also was, and remain, very blessed to have an extraordinary family, friends, and neighbors who have held me up on so many occasions. Being two alone is very frightening! Don't make me come over and shake you now!! Very Happy

Trust me, there were times where I had to leave the room, go outside, rant and rave and wave my fist to God and cry my eyes out. EVERYONE goes through those times. I wasn't always real successful at stifling my sniffles and tears. I talk big, but there are times where I'm a real weenie. Laughing

You have also become a very valuable member of this support community and I love reading your posts.

Kenny,

I'm so glad your mom will be coming to live with you. There are many caregivers here who will hold your hand and get you through all of this as you go. Thank you for the compliment, but I'm just another average person who slogged through this cancer mess.

God bless everyone and (a little early) Happy Easter!

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Tera · Senior User Joined: 31 Dec 2007 Posts: 100

I can tell you from my experience that I let my Mom be the lead in what she wanted to do or discuss. I wanted to bring Hospice in sooner, she would have none of it. I think she felt it was giving up. Her oncologist's office finally talked to her about it on her last visit there where she just did not feel up to taking the WBR that day and they did a PET scan instead. She accepted it then. Once Hospice came on board, her restlessness stopped. She could rest but too she passed on about 7 days after Hospice came on board. For the longest time I blamed myself and felt maybe I hastened her death by bring Hospice in when she maybe wasn't ready for that? Who knows? The Hopice nurse told me no, don't feel that way, but I can't help it sometimes. I still feel it was the best thing to do....but just wonder if it made her give up.

I would test Mom to see what she wanted to talk about. She never voiced her fears to me but she did talk with her best friend about it. I came to realize that she talked to her friend because she didn't want to upset me. I was scared too but discussed my fears with my friends and husband so I wouldn't upset her.

I felt I had to be strong for mom and was SO determined she would not see me cry or breakdown. Oh....that was so hard. I had to leave her room at times because I would feel it coming on, or I would step outside. As time went on and the end drew near, I intiated some talks that took us down memory lane and I thanked her for being the best mom anyone could have. We both enjoyed those talks. I told her every waking moment I loved her and hugged her so much. (I'm sitting here crying as I write this) One night while talking, I could not contain my tears and I apologized to her for it. She told me no apologies were necessary. The next day I told her Hospice nurse about it and that I was kicking myself for crying in front of Mom. Mom's nurse reassured me that it was fine and showed Mom how much I love her and thats ok. Bawling and carrying on would not be, they have enough to deal with, but letting them see your tears, oh yes, that is ok.

The hardest thing for a caretaker to do is to know when to step back and when to help. It is easy to want to do everything for them but that can sometimes crowd your loved one. You will learn as you both adjust when she needs some space and when to help. If you get tired and worn out, which will happen, keep in mind your mom will worry about you too. My best advice there is don't dismiss her worries and take care of yourself too.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 805

(((Tera))),

Amazing how things fall into place and the learning that we do as caregivers. God bless you and I know how hard it is for you to talk about. Thanks for sharing your experiences. It helps everyone.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

helensgirl

Amen pbj...hugs to both of you. Smile

_________________
...keeping the faith in n.c.
Helen, my wonderful mom, diagnosed May, 07
fought-stage 4 NSCLC, (adenocarcinoma)
earned her place in Heaven, Dec. 14th, 07

Tera · Senior User Joined: 31 Dec 2007 Posts: 100

Thanks PBJ and Helensgirl. It is hard but if we can help someone with what we've been through, then it is worth it.

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