I'm way too sober for this sh**, waiting for robotic bronchoscopy.

Posted by silvergirl29 @silvergirl29, Oct 29, 2023

Hi , I'm Ronnie. I am 56 years old 33 years clean&sober and currently a 28 year survivor of a stage 3 Astrocytoma. My mom was diagnosed with nonsmall celllung cancer the day I got home from surgery and although we were laughing about being a sad lifetime movie and doing chemo together it metastasized to her bones then she died as I finished radiation. Mine had escaped diagnoses for 7 + years due to no insurance and noone listening to a young female recovering addict. I finally had culinary union insurance and lucked into a clinical drug trial. So there I was just living and minding my own damn business when few months back I was assigned a new medical provider and she ordered *alla the things* bloodwork, mammogram PAP, sleep study and a cancer screening CT on Friday the 13th (because of course) which led to a pet scan ordered Monday and appointment with pulmonologist weds and robotic bronchoscopy coming up Friday there are 8 nodules . most concerning ones are 8mm 9mm and 2.3 x 1.8 cm. I'm really not sure what I should be doing right now if that makes sense, like on a real and practical level. I don't have any family left and haven't told all of my friends yet. I'll tell them and my 28 year old daughter (who has serious mental illness after meningitis at age 3 and landed in prison until March so that's a hard one) I'm not freaking out I didn't have any symptoms ,haven't even had a "real" cold since before Covid but I have been kind of flat emotionally, "tired" ,avoiding people (which is mostly due to being in a high Covid area and liking my brain enough to protect it, has been easy because I'm an introvert but it hasn't bothered me at all)and just thought I was depressed by climate change ,rising fascism and the like. Any practical suggestions on what I should do? The brain tumor luckily only affected my ability to do algebra and stay organized. Sorry this is so long and rambly I am in dire need of a snack and a nap. Thanks in advance for input I miss my mom she was super organized and on top of everything:)

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@silvergirl29

I am okay yes, 🙂 been meaning to update but every time I go to something derails my attention lol. 7 out of 8 were positive Adenocarcinoma, lymph nodes looked clear and I'm meeting a surgeon tomorrow, Thanks much for checking in I'm glad that I have a solid base in recovery for sure and that I have the previous experience that I do, I know that everything could change in a heartbeat but I feel pretty okay and optimistic right here and now.

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Hi Ronnie- I'm sorry to hear your news. Experience certainly helps. I had two lobectomies, ten years apart. It's very weird, indeed.

Being positive, and feeling pretty okay will serve you well. Attitude is a big deal!

Please let us know how you made out with the surgeon!

Merry

REPLY

It’s awesome you have a Path you have confidence in. Based on my personal experience with a lobectomy six months ago, I do suggest you add an Oncologist to your team - ask your surgeon for referral if he/she hasn’t brought it up yet. It seems best to me that the surgeon and oncologist team up early to ensure they are complementing each other’s approach. You may not need one but better to ask early I think.

I did not have, nor did I want, family ready to help me change dressings at
home from the chest tube removal. I understand that is commonly a slow
drip of serrous fluid that only requires a band aid. Mine was like a lawn sprinkler and I went through a thick hard to reach bandage every hour. They had discharged me when they removed the chest tube and were waiting on my son to arrive. I sat down and told them I wasn’t leaving until they arranged for home health for wound care. My exact words to my surgeon when he returned was that it was either too early to remove or a stitch was dislodged in doing so. But that he should never assume that because I have a son in the area, I want him to change my bandages. So when they can make arrangements for home health I will call my son to pick me up. And they did and all was fine. Well, I still spent one night draining on old sheets and Beach towels until they could come by next afternoon.
Odds are nothing liken that will be your experience but stuff happens -so just be prepared to engage if it does. No one will look out for you better than you!

This is not your first rodeo and
I’m sure you will do great. I’m
sending prayers and good Juju your way!!

REPLY
@pb50

It’s awesome you have a Path you have confidence in. Based on my personal experience with a lobectomy six months ago, I do suggest you add an Oncologist to your team - ask your surgeon for referral if he/she hasn’t brought it up yet. It seems best to me that the surgeon and oncologist team up early to ensure they are complementing each other’s approach. You may not need one but better to ask early I think.

I did not have, nor did I want, family ready to help me change dressings at
home from the chest tube removal. I understand that is commonly a slow
drip of serrous fluid that only requires a band aid. Mine was like a lawn sprinkler and I went through a thick hard to reach bandage every hour. They had discharged me when they removed the chest tube and were waiting on my son to arrive. I sat down and told them I wasn’t leaving until they arranged for home health for wound care. My exact words to my surgeon when he returned was that it was either too early to remove or a stitch was dislodged in doing so. But that he should never assume that because I have a son in the area, I want him to change my bandages. So when they can make arrangements for home health I will call my son to pick me up. And they did and all was fine. Well, I still spent one night draining on old sheets and Beach towels until they could come by next afternoon.
Odds are nothing liken that will be your experience but stuff happens -so just be prepared to engage if it does. No one will look out for you better than you!

This is not your first rodeo and
I’m sure you will do great. I’m
sending prayers and good Juju your way!!

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I know from previous experience that I have super bad reactions to things like tubes and JP drains. When I had to have cranioplasty they removed my latissimus in my back and there were 2 that were sheer agony and I'm pretty tough with a high tolerance for pain, another time there were silicone tissue expanders to try to create a hairline and ohmygod that was excruciating, and they had to be removed .I already am making sure there will be some type of home help because I'd rather have it set up and ready to go and not need it than be in pain and on drugs after surgery trying to get it together last minute, anesthesia messes with me for a while afterwards!

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Smart. I really didn’t know what to expect in terms of how easy it would be to get and out of bed, showering, etc. It was a bit more cautious than normal but really not an issue. I had assumed I’d perhaps have some arm mobility issues on side of surgery, so had laid in a lot of food I could basically prepare with one hand. But again not an issue.
I don’t/can’t take narcotics but did have some muscle spasms and a new offering similar to the old flexoril helped with those and I slept. You may have some shooting/electric kind of sensation and they have a drug for that nerve pain too. I didn’t like it but I think most tolerate it fine. I’m a weirdo with meds.

Stay in touch and keep us posted!!

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@pb50

Smart. I really didn’t know what to expect in terms of how easy it would be to get and out of bed, showering, etc. It was a bit more cautious than normal but really not an issue. I had assumed I’d perhaps have some arm mobility issues on side of surgery, so had laid in a lot of food I could basically prepare with one hand. But again not an issue.
I don’t/can’t take narcotics but did have some muscle spasms and a new offering similar to the old flexoril helped with those and I slept. You may have some shooting/electric kind of sensation and they have a drug for that nerve pain too. I didn’t like it but I think most tolerate it fine. I’m a weirdo with meds.

Stay in touch and keep us posted!!

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Thanks much , it is good to know that pain is not a given, I'm super sensitive to most medications always have been, I'm also 33 years clean and sober and have had to take pain killers before and I really don't enjoy the feeling and they also make me think I should clean the house or move furniture lol so I'll be sure to ask about that new Flexeril , I had baclofen after my neck surgery and it works pretty well for me.

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@silvergirl29

Thanks much , it is good to know that pain is not a given, I'm super sensitive to most medications always have been, I'm also 33 years clean and sober and have had to take pain killers before and I really don't enjoy the feeling and they also make me think I should clean the house or move furniture lol so I'll be sure to ask about that new Flexeril , I had baclofen after my neck surgery and it works pretty well for me.

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They sent me home with a script for narcotics but I didn’t fill it. I took morphine and something else the first two days in the hospital and then I was off everything but Tylenol. But those two days were enough to give me major constipation and it’s worth staying ahead of that. I hate narcotics.

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@pb50

They sent me home with a script for narcotics but I didn’t fill it. I took morphine and something else the first two days in the hospital and then I was off everything but Tylenol. But those two days were enough to give me major constipation and it’s worth staying ahead of that. I hate narcotics.

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Absolutely agree with you , I hate everything about the opiods.!

REPLY
@pb50

It’s awesome you have a Path you have confidence in. Based on my personal experience with a lobectomy six months ago, I do suggest you add an Oncologist to your team - ask your surgeon for referral if he/she hasn’t brought it up yet. It seems best to me that the surgeon and oncologist team up early to ensure they are complementing each other’s approach. You may not need one but better to ask early I think.

I did not have, nor did I want, family ready to help me change dressings at
home from the chest tube removal. I understand that is commonly a slow
drip of serrous fluid that only requires a band aid. Mine was like a lawn sprinkler and I went through a thick hard to reach bandage every hour. They had discharged me when they removed the chest tube and were waiting on my son to arrive. I sat down and told them I wasn’t leaving until they arranged for home health for wound care. My exact words to my surgeon when he returned was that it was either too early to remove or a stitch was dislodged in doing so. But that he should never assume that because I have a son in the area, I want him to change my bandages. So when they can make arrangements for home health I will call my son to pick me up. And they did and all was fine. Well, I still spent one night draining on old sheets and Beach towels until they could come by next afternoon.
Odds are nothing liken that will be your experience but stuff happens -so just be prepared to engage if it does. No one will look out for you better than you!

This is not your first rodeo and
I’m sure you will do great. I’m
sending prayers and good Juju your way!!

Jump to this post

@pb50- hahaha. Good for you!

REPLY
@pb50

They sent me home with a script for narcotics but I didn’t fill it. I took morphine and something else the first two days in the hospital and then I was off everything but Tylenol. But those two days were enough to give me major constipation and it’s worth staying ahead of that. I hate narcotics.

Jump to this post

I took the narcotics in the hospital....in order to cough one needs pain killers. But happily I could go off them at home and not even use much Tylenol. Regarding constipation, they gave me a great stool softener which I keep for whenever I need.

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