1. < Lung Cancer

Having lobectomy tuesday aug 6---so confused. nobody answering my ???

Posted by julie67 @julie67, Aug 4 11:48am

So I was on here with my PET scan a few months ago. The doctor has said my cancer is 'small' and have a good chance of 'cure' if it's not in my lymph nodes. They biopsied my lymph nodes and they came back negative. So why would they take 'good' lymph nodes and he also said he is doing a lobectomy instead of a resection because it has 'less chance of lung collapse'. IS this normal? I had a collapsed lung on the lung biopsy July 2 and spent 2 days in the hospital then so why is it a big deal? Or was I lucky? I also thought they collapsed your lung to begin with for this? YEs, i am all over the place. I am alone with not even a ride home when time comes. Nurse gave me social worker, Cancer PAthways (anyone heard of them?) and other resources. NOBODY can help. So I told Cancer Pathways here in Evansville, IN I have no help, animals to attend to, nobody to go to store and no money when I get home. She called back and left a message that she called my nurse navigator and was told I would only be in hospital 2 days and would be able to do 'my normal things' when I got home! HA! So I then fired off an email to the nurse telling her this when it clearly states in my letter I am not to drive until seen post-op//whenever that is??? Not to lift etc but to walk every day when i get home. Of course nurse didn't answer me now since if she DID say this, she knows its WRONG and she just robbed me of any help. Mad, scared, freaked out so bad a week ago i am covered in cuts and chunks out of skin from being so clumsy. Anyway, just still lost. My chart says resection AND lobectomy, it also says in ONE letter THORECTOMY? Guess it depends on what he finds?? But doesn't he know what to do from all my scans already? And if they aren't sure if it's in my lymph nodes after a PET AND biopsy, then how do we know if it ever comes back (supposing I AM cured after removal of lobe and whatever nodes he takes come beck negative)? rambling, confused, alone and freaking out again. 8am tuesday. having nightmares now. please tell me yall think please? I have to do this surgery I think. I've had my primary, future oncologist (oh, he said I need chemo no matter what!--another opionion oncologist said only if lymph nodes taken are cancerous!) and someone else say to get the cancer out now!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

julie67 | @julie67 | Aug 29 11:44am
In reply to @bluelagoon "@julie67 Julie, I am only now catching up here on your painful last few weeks. You..." + (show)
@bluelagoon

@julie67 Julie, I am only now catching up here on your painful last few weeks. You grabbed me right away with your early comment about "why did I go through this if it hit the lymph nodes?" I knew in advance that the lymph nodes would be tested at the time of my surgery. I also knew after surgery they appeared clear, but they needed to wait for the results. Well, in my case I had one lymph node come back positive, and I burst out crying (and I am not a cryer.) I thought it meant the end, too. But it really means some more work to be done. And, in my case it was a few rounds of chemo. See what your oncologist says. And, if I understood you right, what the other one says, too. You can then decide from there. I'm late with offering you a suggestion with the pain but what worked best for me was what a nurse suggested: take the narcotic pain pill and the Tylenol on the same 6-hour schedule as the Tylenol. You wait 2 hours longer for the pain pill, but the double pill effect really helped. That and a pillow they had me push into my chest and cough. It still was awfully painful, but the pillow muted it a bit. I live outside of Indy and if I lived closer, I would offer to help with your animals, since I feel your pain about that. I just did some online searches down there since I used to work with some non-profits down there and was familiar with many of them. Did you try SWIRCA? Their website mentions both in-home care and Medicaid Waivers. Hang in there and keep pulling for yourself - we are!

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Thank you so much! It has become even MORE of a nightmare. I did try Swirca, thank you for reseawrching for me!! I have been in the hospital again the past 2 days. Turned out the reason i couldnt' do anything/breathe was I had fluid on my lungs from the lobectomy. I just figured it was normal. Only when I started coughing and gasping Saturday night did I realize something was wrong. So they hospitlized me for a DAY for what I learned yesterday was an out-patient prodecdure done by a NP! So much more stress because my rabbits had gotten into a major fight when one got out right before this happened and i couldn't catch one to see if he had injuries. So sat in the hospital thinking i;d have a decaying pet when i got home when there was no need to BE in the hospital. So now lobectomy has been 3 1/2 weejs and i am just now starting to breathe. I feel like i won't recover now since i've been so long with the lung hindered from the fluid. Both oncologists have now kinda told me to go with the other one because i am still too sick and sore to undergo the port placement so i canceled it...was set for next week the 4th. No way can my body take this. how long is it supposed to be from lebectomy to port placement to chemo? Seems i am letting this apread because everything has gone wrong and again, no home health aide who may have recognized this was more than it was and gotten the fluid off sonner. just a disaster. So i don't know what i am doing now. Seems i should be asking the easiest way to kill myself at this point when the cancer spreads. I just don't know when i will feel like having a port put in. I still cant do anything. house is covered in trash and now rabbit feces allllllll over since the fight. sheesh. no idea but thank you. Social worker did talk to me again yesterday at hospital. no help availble so i just am tired of fighting and nothing going right.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 29 8:15pm
In reply to @julie67 "Thank you so much! It has become even MORE of a nightmare. I did try Swirca,..." + (show)
@julie67

Thank you so much! It has become even MORE of a nightmare. I did try Swirca, thank you for reseawrching for me!! I have been in the hospital again the past 2 days. Turned out the reason i couldnt' do anything/breathe was I had fluid on my lungs from the lobectomy. I just figured it was normal. Only when I started coughing and gasping Saturday night did I realize something was wrong. So they hospitlized me for a DAY for what I learned yesterday was an out-patient prodecdure done by a NP! So much more stress because my rabbits had gotten into a major fight when one got out right before this happened and i couldn't catch one to see if he had injuries. So sat in the hospital thinking i;d have a decaying pet when i got home when there was no need to BE in the hospital. So now lobectomy has been 3 1/2 weejs and i am just now starting to breathe. I feel like i won't recover now since i've been so long with the lung hindered from the fluid. Both oncologists have now kinda told me to go with the other one because i am still too sick and sore to undergo the port placement so i canceled it...was set for next week the 4th. No way can my body take this. how long is it supposed to be from lebectomy to port placement to chemo? Seems i am letting this apread because everything has gone wrong and again, no home health aide who may have recognized this was more than it was and gotten the fluid off sonner. just a disaster. So i don't know what i am doing now. Seems i should be asking the easiest way to kill myself at this point when the cancer spreads. I just don't know when i will feel like having a port put in. I still cant do anything. house is covered in trash and now rabbit feces allllllll over since the fight. sheesh. no idea but thank you. Social worker did talk to me again yesterday at hospital. no help availble so i just am tired of fighting and nothing going right.

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Hello @julie67

After reading your post, I see that while it's only been a few weeks since your surgery, you've had complications and problems that have slowed down your progress. It is hard to feel optimistic when you are physically low. So, if I could offer one thought it would be this: The way you are feeling now won't last forever. Healing from major surgery takes longer than three weeks and perhaps a bit longer because of the fluid on your lungs.

It's important, during this healing process, to adopt some positive thoughts. I know it is difficult when you are feeling physically low, but it is important for you to begin to take control of your thinking. I would encourage you to read some of the posts in a Cancer discussion group titled,

--What Brought You Joy Today
https://connect.mayoclinic.org/discussion/what-brought-you-joy-today/?pg=10#comment-1132365
As you read these posts, you will see that many are quite simple like, listening to my favorite music, reading a good book, etc. After you read some of these posts, spend some time thinking of ways you can bring joy in your life.

Changing your thoughts and becoming more grateful for the little things in your life will not make the difficulties go away completely, but it will begin to change your attitude. As your attitude changes, then your mood will most likely change as well.

Read these posts and then post one of your own. What can you do to bring joy into your life today? Will you try this?

REPLY
julie67 | @julie67 | Sep 2 5:58am
In reply to @aprilradek "Hey Julie, Ask the oncologist what the treatment plan is for you. What type of cancer..." + (show)
@aprilradek

Hey Julie,

Ask the oncologist what the treatment plan is for you. What type of cancer you have. Pain medication PT referral. Repeat that you need home health care help asap. Just keep repeating yourself over and over. You need support let that be known in a loud clear voice.

I always write down what I want to cover before an appointment, or I forget. Tell the nurse on Friday and the oncologist. Take ibuprofen while waiting for other pain meds. Call the local SPCA maybe they can get you some help for pets. I think I saw somewhere you said you are on Medicaid keep trying to reach the social worker too- what lobe did you have removed?

april

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I had the right upper lobe removed. Not sure who i am replying to. it's been a month . nothing going right. i got no help at all despite all the fuss I have made everywhere i went and everyone i called. I am full of anquish and resentment and hate for deaconess now. i wish i had never had this done. animal feces and trash piling up. i am not better. anthem my medicaiid 'helped' by sending me a link to hire people to fix the house...lol... i haven't made money in 4 months. waiting on power to go out now and next will be losing the hosue for unpaid taxes. i hate the world. i didn't deserve this.

REPLY
aprilradek | @aprilradek | Sep 2 1:34pm

Hi Julie,

I am so sorry you feel hopeless. Try the SPCA for animal help call the social worker and keep calling. Call the surgeon's office and the oncologist again. Leave multiple messages.
april

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