Any advice or insight would be greatly appreciated

[Getalife18]

Hello,

I’m new to this. My mom was diagnosed with stage 2b lung cancer. She had lower and middle right lobes removed. They actually changed the stage to 1. Good news you would think.

She is 71 and smoked for 55 years. Stopped in March after the pet scan confirmation. She has colorectal cancer 20 years ago and had radiation colitis. I should have known something was up when she wouldn’t really discuss what would happen post lobectomy. She was more concerned with hosptialization and diarrhea.

She wouldn’t do incentive spirometer, she wouldn’t eat, nothing. So she delveoped pneumonia. She went home after a week and went back in after 2 days at home. My dad had to call ambulance she said she couldn’t breath. She has emphysema but never had any limitations at all due to this.

I had been with her before and after work weekends. Had been with her 3 days straight and knew she wasn’t actually in distress. I am a nurse; listened to her lungs etc.

When she came home this time it’s the same thing. Refuses to eat except if forcing her. Won’t do anything,( she did this in hospital as well). My poor father, have no idea how he is doing it. I bring them dinner to help him out. But she is very negative; you can say the same thing over and over again it’s like you never said it. I tried to get primary care to prescribe antidepressant. My dad was so mad it made her nauseated and he says set her back 2 days.... nothing motivates her. She won’t answer phone, my kids call and text ( college age, she was very close and involved in their life before this). My brothers young children used to face time her all the time , also come over. My dad won’t allow this and my mom refuses to talk to them.)

Her friends and relatives have called me because she won’t speak to them. My dad has become codependent; he gets so mad because I keep pushing pulmonary rehab and also making her wait on herself. She won’t make a cup of coffee for herself.

I am beside myself. She had such positive results and now this. I don’t know if it’s normal. I can’t figure it out. Everything I look up is respect based due to my field but I can’t find is it normal to still not get up and move and constantly complain and only focus on your meds and literally nothing else. I’m afraid my dad is going to have a stroke dealing with this. As I said between hospital and the Home time I have been there constantly. But the last few days and I Plan this weeks to take a step back. I don’t feel I’m helping at all .

Thank you for any insight anyone may have.

Take care

Sherrie

[Denzie Moderator Volunteer]

Normally anger and not wanting to burden family will trigger this kind of behavior. She needs to know that this is not a death sentence. At stage 2 she may very well be cured. I suspect she’s carrying a lot of guilt as well. Most of us did.

I’m 7.5 years out with stage 4 so I know it can be survivable. You’re right to push for pulmonary rehab and to do things for herself. She needs to get moving. Beyond that I don’t know what to tell you. Wrapping you in prayers.

[Getalife18 in reply to Denzie]

Thank you so much. It feels like I’m living in a tunnel when you know the right things that need to happen but can’t figure out why they aren’t. I’m torn between screaming at her saying why are you doing this?!?! Get it together!!! (Would never do that) and begging her.

But nothing helps anyway even the much older people doing 10x better in the hospital. Kids my kids age on the cancer floor with her didn’t affect her.

Thank you and what you said makes sense. Thank you also for your prayers

[Denzie Moderator Volunteer in reply to Getalife18]

Been contemplating my reply. (Had to bring cousin to ER last night and stay because she was admitted with kidney stone).

You're going to have to put on your best dispassionate mom/nurse voice and have a very quiet talk with her. Quiet talks are often heard much louder with great clarity. She knows where your buttons are and will try to push them. Breathe deep, stay calm.

Tell her she has every right to her anger and her fear but that she needs to push past them. She does not have the right to make everyone else miserable. Explain that she needs to take that anger and channel it into helping care for herself.

Quietly tell her that you and dad are not equipped to manage her 24/7. Calmly explain that if she doesn’t she may need to be institutionalized, a feeding tube placed and she may require intubation. Make sure to emphasize the choice is hers.

This will require calm and separating yourself from your emotions but you’ve dealt with tough patients before. You can do this. It’s a reality check she needs.

[Getalife18 in reply to Denzie]

Thank you I am going to that tomorrow. I took a break today because one her friends called me and said to stay away for a day, get some things done and regroup.

Been cleaning my house and making food to take tomorrow. So I feel like I can do this. You are right quiet is better than frustration. And a reality is what she needs. Clinically she is not getting worse. They did a chest X-ray and the fluid left in bottom of lung has absorbed. My dad does pulse ox it’s always 96-98%.

Yet she has taken to speaking only sporadically and she acts like she can’t breath. My brother hadn’t seen her since 2nd hospital discharge and he thought she had gone downhill. It’s all mental not physical( I’m not discounting the magnitude of the surgery and diagnosis) I just mean the downhill is mental.

One of the reasons I joined this because I have been reading everyone’s logs and I just didn’t see anyone mentioning this kind of thing. And it seem like everyone was trying really hard to get better so that’s why I was so confused. Thank you so much for your help I truly appreciate it xxoo

Sherrie

[Denzie Moderator Volunteer in reply to Getalife18]

Sherrie,

I meet with newly diagnosed patients on a weekly basis. This is something that does come up. I wish you well. Remember your triggers and keep it soft.

Best hopes!

[SusieJo1948]

She sounds like she's depressed and worried she is going to die. I'll write what I went through and let her read it. I had breast cancer 7 years ago it was what they stage ed at o had mastectomy and no treatments. Two years later I get lung cancer. They removed my upper left lung. I had stage three in lympnodes. I thought I was going to die. I didn't do radiation I did six months of chem. I am now a 5 and a half year cancer survivor one of 14% who are cured. Let her read this maybe it will help. They have so many new treatments out and people ate living longer. They are really trying to find a cure. And hope to have one by 2022. Your mom is depressed and probably thinks she isn't going to make it.this part is for your mom. I want you to stop giving up you have family that loves you and your pushing them away and it hurts them. You've got lot to live for. So het out of bed and start living. The best you can under the circumstances it's not going to be easy but. You can do it just think of your family there here for you My family helped me a lot. Its been a long journey. So please get up and fight your life and let family help you. Have hope and don't give up. There are treatments that can help. Please do this for yourself and your family. I'm here if you all need me if she needs someone talk too she can. Talk to me Love susie jo

[Getalife18 in reply to SusieJo1948]

Thank you so much SusieJo. As I said above I joined this because I was reading replies from people who had had much worse stage cancer then my mom but seem to be doing so much better. I was just trying to see some of the struggles they went through see if some of it was similar. Especially this physical disability that she has had. And it has been so hard for me because I guess I have a different thought system. I thought she would be so happy that they actually pulled down her stage of cancer from 2b to 1b. But I think it didn’t really matter what they would have said. It’s just the fact that she has a lung cancer. I am going there tomorrow and I’m going to show her this. Her friend told me to not go today so I could stay home and get some cleaning done at my house and then go to the store and get some food to make. She refuses to eat a lot of times and so my dad tries everything but I feel so bad for him because he’s trying to help my brother and his business and he’s cooking and cleaning and going to the store and literally doing everything plus waiting on her constantly .and trying to get her to walk Outside to the bird feeder. Every little accomplishment he so happy but I don’t think he gets that accomplishments are not very big. And I try not to get frustrated with him because I know he is trying it’s just that he doesn’t get it she needs more of a tough love approach not giving in to her. As I said before it’s literally like she just had a lung resection yesterday and we’re coming up on a month. She actually moves less than she did in the hospital. . I think it must be hard when you are there constantly 24 seven you don’t see the lack of progress. And what I see is more downhill. My brother actually thought she had gotten clinically worse. But that’s not what the her primary care physician who just told her two days ago. said she’s clinically better by blood test and chest x-ray. It’s pretty much all a mental thing. If you were told me that this was going to happen I would’ve said no way. She’s always been a very difficult when he comes to medical stuff she never wants to listen to what the right thing to do is she always thinks if he’ll fix it and it’s never her fault she’s always trying so hard but it doesn’t work kind of thing. It’s always sort of been that way but I just never thought in 1 million years she would do this.. And like I said I’m going to show her this tomorrow. I’m praying that it will help and I thankyou so so much for it. Your posts are very inspiring. I join this as I said because I really like reading what everyone is saying it’s extremely inspiring to me makes me feel so much better like there can be Hope and so much more positivity then my mom is allowing to happen. And you were right there so many advances in lung cancer. One of my best friends got it right after she retired. Stage four it was in her bones that was five years ago and she’s doing fabulous now she never got down even onc your posts are very inspiring. I join this as I said because I really like reading what everyone is saying it’s extremely inspiring to me makes me feel so much better like there can be Hope and so much more positivity then my mom is allowing to happen. And you were right there so many advances in lung cancer. One of my best friends got it right after she retired. State for it was in her bones that was five years ago and she’s doing fabulous now she never got down.

Thank you so much again xxoo

Sherrie

[thila]

This is my first post here after lurking on the site for awhile. I felt compelled to reply to you to give you a perspective of someone of a patient with lung cancer who has up days and down days. I was diagnosed with stage 4 lung cancer with metastasis to the bones just recently in Feb 2018. Before that I was just taking ibuprofen for what I though was sciatica pain but it did not prevent me from doing much physically. I managed to run a full life. After being hospitalized for the stroke that brought me the cancer diagnosis, I couldn't take ibuprofen anymore due to risk of bleeding so I could only take tylenol initially. However, the max dose I was taking did not relieve the pain. It took them awhile to figure out what type of opiate and the dose that would be effective. Meanwhile, every time the tylenol wore off, I would go through a severe pain periods that lasted 1-2 hours. This happened several times a day every day. Through all of that, I was able to maintain a healthy appetite and remember actually looking forward to each meal and getting such joy from eating because the pain was so bad. Despite the pain, I was also upbeat most of the time and managed to keep my "personality". After going home from the hospital, I went on a targeted drug therapy (Afatinib) that almost immediately took away my chronic cough (I'm a non-smoker though) and reduced the tumor by 50% according to my first scan at 2 months on the therapy. So clinically I was and have been doing great but the major side effects of the drug for me is diarrhea and I also developed ulcers for for which I'm taking prilosec.

If someone were to take a snapshot of me at the time I entered the hospital and then again right now, they would definitely think that I went "downhill" even though I am in a much better place now clinically in respect to the cancer. When I was hospitalized, I walked on my own. Now, I have to use a cane and a walker, and my appetite is not nearly as good as when i was in the hospital. My lungs are clear, but the diarrhea and ulcers have really impacted how I feel generally. I have up and down days, but on the down days, I have to force myself to eat and my energy level waxes and wanes. When I'm not feeling good, I would not want to hear anybody tell me that it's just "mental". I will get up and help myself when I have the energy but it's hard to move when I just feel "icky". In some respects, it's harder to deal with the effects of the diarrhea and ulcers, which by themselves are not painful, than it was goin through bone my pain spikes. At least with the pain spikes, I knew when it would end (usually after an hour), and then I would be back to my old self. But when I can't eat anything and have no energy, it does feel like death is knocking on the door.

I would suggest that you perhaps try and address your mother's diet and diarrhea issues. I find that it helps to carb myself up to stimulate an appetite and bananas (not overly ripe ones) help. "Healthy" foods like fruit and dairy have to be limited because they send me right to the toilet. My taste buds have also changed and I have to add a bit more salt and spice to my food to make it take better.

You mentioned that it seemed like everyone is so optomistic on this website. It's great that there are so many good and inspirational stories, but think about it, most people are more likely to write more positive posts when they're feeling good. People also self-edit their stories. I don't even want to tell my own story of when I used to bite my lip and suffer in agony everyday when I was going through my pain spikes. Now that I don't go through them anymore (I'm using a fentanyl patch and it controls the pain well), so my family members think I'm just doing great. They don't want to hear about my diarrhea issues (who really does???) and just think "at least you're not screaming in pain anymore". True, but I would also like to be able to put down a 3 course meal like I used to. I have to mourn the fact that i can't do that anymore.

I hope this helps with you in dealing with your mother and I wish her all the best.

[FtB_Peggy]

Getalife, thank you for reaching out to this great group of people. Their advice is always spot-on. It is difficult to understand how each person responds to a given situation - we are just individuals dealing with our own feelings and reactions, and sometimes that gets the better of us for awhile. I am sorry she couldn't take the antidepressant. It sounds like she is very sad and frightened.

Sometimes eating food can feel like just too much, make sure she is offered small amounts frequently, and let her eat what she wants right now even if that is just ice cream. Try making shakes with something like Ensure and ice cream. Make sure she is getting medication to help with the diarrhea. Maybe she just needs time to process what has happened. But getting her to move, even just a little is important, as you know. Is there someone she would talk to about how she is feeling?

I am also concerned about your father and you. This can be very stressful. Try to support one another, be kind to each other and do the best you can. It sounds like you are very devoted and respectful, keep up the good work. And keep talking to us.

[ElmerFudd314]

I have been diagnosed and treated for nsc adenocarcinoma starting about 5 months ago. Never did smoke. Age 69, Vietnam veteran. Doing OK so far but have my second PET scan in about a week. I only had a small tumor in the upper left lung. Had 5 days of radiation to the head and then 6 cycles of chemo. (Every 3 weeks.) Now I'm on maintenance chemo every 3 weeks. Eventually may go on Opdivo. For some reason the actual smokers seem to do better than us non-smokers, at least in this forum. I have had problems with not eating from the chemo but it is cyclical. If you check out my old posts I have suggestions for what to eat during these times. Contact me directly if you want. Good luck ! Gerald