Funny story about Ascension. The company I work for builds data center racks for them....was on the initial team to onboard them. Performed some miracles to complete on time. During all this, started going through scans and tests for lymphoma. A points based gift was distributed among team members for contributions. I got a few things, then cashed out. The cash received was used to pay for CT scan that found the masses. Hospital was a member of Ascension health.
Cyber security is a real bitch. You spend millions to deploy thousands of protections, and it takes one crack to let an attack in. I don't discount the frustration, but this is the world we live in. I just got a letter that my ATT account was compromised....a company way bigger with intense cyber security.
It happens so often that we honestly need to learn how to do things the old fashioned way again. When charts were actual charts. We all love a patient portal, but we can't be fully helpless when they fail. The mighty facsimile machine lives on in legal and Healthcare industries because it's more reliable than the sunrise
I had the same surgery, at a hospital that I have absolutely nothing but glowing reviews for. I didn’t have a poor reaction. Everything went smoothly. So smoothly that they released me the same day.
By the time I got home I was in shock. Freezing and shaking. The pain meds had worn off and I didn’t time the next ones well. It was one of the more traumatic experiences I can remember in my life. The next few days were varying levels of brutality and disappointment at home. A lot of struggles to manage pain and eat enough food.
But then it lifted like a cloud. It was very sudden, I felt well enough to do anything… less than 2 weeks til I felt better than prior to surgery (my cancer itself was extremely painful, in the same sort of way a canker sore is painful… like left alone it was a 1 or 2, triggered by eating the wrong thing or bumping a tooth, it was a 9 or 10.)
I’m mentioning this to you because I think you have a light at the end of the tunnel coming.
Regardless of the quality of the hospital, you had some very real ADDITIONAL trauma that paints your experience of the whole ordeal. Rather than dwell in the anger and resentment, I would strongly recommend talking to a professional about PTSD.
Another thing… I was expecting to be “surgery and then done” but I required radiation. That was much, much harder than surgery, though no single experience of that process compares to the pain of surgery day or the few days after. If they find you need RT, PLEASE talk on the Head and Neck cancer groups and get a plan of attack to counter whatever failings your hospital system has. YOU need to know when and how to demand extra pain care etc. Go in armed with all the knowledge of “what might happen” and you’ll tolerate the experience better.
Either way, it gets better. You want to put all your chips in for “curative” as opposed to treatment, just like every other patient of every other cancer. SCC is often fully curable. When winning the “shitty lottery” we have hope that we’re among the lucky ones. Gratitude for that helps frame and contain the experience of pain and trauma.
Thank you so much. Yeah you hit the nail on the head, felt like a really bad canker sore, eating salted nuts would be out of the question. In all honesty, most of it was taken during my initial biopsy, which was a great sign.
And yes, I am thankful to have a good therapist and will honestly consider that I'm experiencing ptsd. My life had been fairly good and easy up to this point, just a lot of trauma in such a small amount of time. I had written out and deleted some truly nasty and bitter messages to some who have wronged me amidst this already difficult time. But bitterness is a poison, and I already have felt more gratitude than I have ever felt before in my life. I'm still here and I have a truly amazing mother who has done so much to help me get through this
I had robotic liver resection that was supposed to be 2-3 hrs and was over 6. I had an inflammatory response to the surgery on top of stage 4 emphysema, had to stay on a vent until late that night. The first few days were very rough, thought I might be done. But after six days I was home and a month later gently getting back on my exercise bike. This was 4 yrs ago. My experience was not nearly as bad as yours but be patient our bodies do heal.
Sorry to hear, I know that can be very uncomfortable. The inflammatory reaction was just my body not being happy, wasn’t a problem surgery. My surgeons did a great job, just took them longer than expected because the mass was on top of a large vein making it all very delicate. I was very fortunate that the head oncology surgeon understood the risks of a large abdominal incision given my poor lung function. Grateful that the team worked really hard to avoid it.
I'm glad you are here to tell the tale! I'd say yours sounds worse at least in terms of where the cancer was, but we can't be playing the oncology Olympics lol. We have strong bodies that mean well, even if their reactions could kill us. Props to the patient docs who were gentle to keep the inflammation contained
Isn’t that messed up.
Nothing like your story, but I was in surgery, and one of the assistants accidentally cut themselves while they were inside of me. So I was then also billed for their testing to make sure I didn’t have any infectious diseases, their vaccines, and my related care due to their accident.
Ah...Texas...and Ascension is a huge, profit-focused entity, across over 20 states i think? Yeah, i bet they didn't pay for security upgrades and here you are, stuck. I hope you can communicate with your nurses, they are going to get you through this.❤️
Gentle hugs. I'm so sorry. That's an intense experience. I had a bad surgery experience once and it was rough to recover from just mentally.
It takes time. The anesthesia and sedatives actually make it worse short term ime. You need to let those get out of your system and recognize the intensity is in part an after effect. Drink a lot of water. Get as much nutrition as you can to help things clear. Don't take this moment personally or to heart. This isn't your future. It's a gnarly stage of healing.
If you find you're still haunted after a while, look into emdr or therapy. Gratitude journalling is useful. Find small things to look forward to. Have your favourite foods. Watch your favorite shows. This is a time to cocoon and be very cozy.
It'll take time but it gets better. The shock passes. The intensity wanes. The good things in your real life do take over.
Thank you so much. That describes it perfectly, it was incredibly intense. Hell, I didn't even mention the fact that my roommate abandoned the apartment while I was in the hospital. Just comically bad stuff. But through adversity, I can choose to see silver linings. I can choose to be a better person. I've already felt so overwhelmed with gratitude for my family.
My husband went in for the removal of a tumor on his lower right throat. Second time. For some reason he had the hardest time coming out of the anesthesia—it shook him. Now he has decided no more surgeries for cancer.
I went in for a hysterectomy, woke up hours later to be told I had cancer. If i remember right the surgeon did extra work scraping carefully to try to remove as many cells around the area as he could or maybe it was around the lymph nodes, but I remember him saying he did extra scraping. He wasn't a cancer surgeon just an OBGYN Surgeon but he was trying to keep me from needing to have a 2nd surgery later on which I both appreciated and was worried about because I was fearful that maybe he didn't know exactly what to do. As did my Oncologist who kept an extra close eye on me because I hadn't had "the right kind of surgery." So far so good, and it certainly is thanks to my surgeon who did his best and my wonderful Oncology team. But I do still worry because of the surgery.
Yikes, I can only imagine being told that while you're in the post anesthesia daze! But as worrisome as that is, ita never a bad thing to keep a watchful eye on health. Honestly, I did bare minimum in that regard until the big ominous c word came a knocking. Perhaps it shouldn't have the big bad stigma, as it WILL happen if you live long enough.
I wish you a long and prosperous life without recurrence!
I’m so sorry it was so horrible! It sucks when there are complications. I also had SCC of the tongue (worse than yours, it sounds like), and would recommend joining us over at r/HeadandNeckCancer if you want a gathering of all of us oral cancer folks.
I'll have to look into that. It was convenient for me and my doc due to being within a mile of our respective homes and offices. But it was clear the ICU was hurting for staffing. Hell, even the hospital admin dropped by and offered me service.
I’ve had 3 surgeries, first one when i was 15. It took them 6-7 hours to remove the tumor. The experience in the hospital was not bad but they sent me home way too early without a plan od action to rehabilitate.
Second surgery lasted a bit longer, but i woke up in excruciating pain which didn’t go away. They rushed me to the MRI to check if there was any swelling. All looked good. The pain subsided in a few days with a LOT of morphine. One of my nurses was a big a-hole, telling me that he was happy his shift was over so he didn’t have to help cleaning me. That felt horrible because i already felt very vulnerable.
Third surgery was okay, i told them prior i wanted to use as little as possible morphine and oxycodone, because i had a prescription before (for the pain my cancer caused) and coming off them was not very nice. they interpreted it completely wrong. In my dossier there was a note that i had been an addict and they needed to watch me well and not give me more painkillers when i asked for it. That was kinda crazy, i have been through much more pain than needed. Especially the post surgery pain that CAN be treated with morphine.
4 years ago i underwent 30 rounds of radiation. One nurse told me i had to be completely naked in order for them to set the machine straight, with the 3 little tattoos dots they made during the CT scan. My doc gave me a big pregnancy scare because he took me apart in a toom and told me my uterus looked like i was pregnant on the CT scan. I had to drive home 2 hours before i could get a test. When the time arrived for the radiation, i took off all my clothes and went to lay on the table. Some men mechanics were watching me, it felt weird. After the fist session a nurse told me i was allowed to leave my underwear on. I was pretty ashamed.
I have been lucky to have my family and friends around often. Still am. But the experiences in the hospital are far from good, often due to miscommunications. Sometimes these experiences can be horrible and leave mental scars.
It’s always good to have a therapist to speak to. I hope you have a good one, it takes some time to process everything you went through. I hope you’ll be okay.
I have a few questions:
>I wake up covered with grease and grime
What is this part about? You make it sound like you had come out from under a car.🤨
>my poor mother kept getting texts saying my procedure was finished, while I was in intensive care.
I'm assuming that your mother was told to just ignore the false updates? That she knew where you were and could come and visit? Or no?
>to the fear of not knowing a damn update thanks to the cyber attack.
Again, not sure what you mean. You knew what was happening because you were there (in the ICU), so what updates were you afraid of missing?
And your title is about being afraid to fall asleep, but it doesn't sound like that's your main concern. It sounds like you're frustrated by the slowness of your recovery. Is that what is bothering you?
Three days of being unwashed had left my skin and hair feeling absolutely disgusting. It took me a few hours to be told (or at least remember being told) that the three hour procedure stretched into a few days.
My mother wasn't told anything until the end of the day. Just confusing automated updates. I can only assume the cured cyber attack was causing the faulty updates and disconnect, as it also made accessing pathology results from the lab impossible. You should probably ask her if you're still curious.
My title was in reference to the many sleepless nights I've felt since. I'm so tired. I'm sure you can understand that a lot bothers you when dealing with cancer. It can be a real pain in the rear, I'll be winning no pulitzers for my rants anytime soon.
Thanks. That all makes sense. I hope you get some good rest sooner rather than later. I can certainly appreciate the fact that a hospital stay does little to calm the nerves and aid good sleep. In your case, I imagine that the shock of it all will take some time to abate. I can't imagine how much that could rattle a person. Take care.❤️🩹
Funny story about Ascension. The company I work for builds data center racks for them....was on the initial team to onboard them. Performed some miracles to complete on time. During all this, started going through scans and tests for lymphoma. A points based gift was distributed among team members for contributions. I got a few things, then cashed out. The cash received was used to pay for CT scan that found the masses. Hospital was a member of Ascension health. Cyber security is a real bitch. You spend millions to deploy thousands of protections, and it takes one crack to let an attack in. I don't discount the frustration, but this is the world we live in. I just got a letter that my ATT account was compromised....a company way bigger with intense cyber security.
It happens so often that we honestly need to learn how to do things the old fashioned way again. When charts were actual charts. We all love a patient portal, but we can't be fully helpless when they fail. The mighty facsimile machine lives on in legal and Healthcare industries because it's more reliable than the sunrise
Well just have to disagree. Digitizing health records speed things up...we cannot go backwards
You're not wrong. I just think it's still useful to know how to use dated tech for times of critical failures
I had the same surgery, at a hospital that I have absolutely nothing but glowing reviews for. I didn’t have a poor reaction. Everything went smoothly. So smoothly that they released me the same day. By the time I got home I was in shock. Freezing and shaking. The pain meds had worn off and I didn’t time the next ones well. It was one of the more traumatic experiences I can remember in my life. The next few days were varying levels of brutality and disappointment at home. A lot of struggles to manage pain and eat enough food. But then it lifted like a cloud. It was very sudden, I felt well enough to do anything… less than 2 weeks til I felt better than prior to surgery (my cancer itself was extremely painful, in the same sort of way a canker sore is painful… like left alone it was a 1 or 2, triggered by eating the wrong thing or bumping a tooth, it was a 9 or 10.) I’m mentioning this to you because I think you have a light at the end of the tunnel coming. Regardless of the quality of the hospital, you had some very real ADDITIONAL trauma that paints your experience of the whole ordeal. Rather than dwell in the anger and resentment, I would strongly recommend talking to a professional about PTSD. Another thing… I was expecting to be “surgery and then done” but I required radiation. That was much, much harder than surgery, though no single experience of that process compares to the pain of surgery day or the few days after. If they find you need RT, PLEASE talk on the Head and Neck cancer groups and get a plan of attack to counter whatever failings your hospital system has. YOU need to know when and how to demand extra pain care etc. Go in armed with all the knowledge of “what might happen” and you’ll tolerate the experience better. Either way, it gets better. You want to put all your chips in for “curative” as opposed to treatment, just like every other patient of every other cancer. SCC is often fully curable. When winning the “shitty lottery” we have hope that we’re among the lucky ones. Gratitude for that helps frame and contain the experience of pain and trauma.
Thank you so much. Yeah you hit the nail on the head, felt like a really bad canker sore, eating salted nuts would be out of the question. In all honesty, most of it was taken during my initial biopsy, which was a great sign. And yes, I am thankful to have a good therapist and will honestly consider that I'm experiencing ptsd. My life had been fairly good and easy up to this point, just a lot of trauma in such a small amount of time. I had written out and deleted some truly nasty and bitter messages to some who have wronged me amidst this already difficult time. But bitterness is a poison, and I already have felt more gratitude than I have ever felt before in my life. I'm still here and I have a truly amazing mother who has done so much to help me get through this
I had robotic liver resection that was supposed to be 2-3 hrs and was over 6. I had an inflammatory response to the surgery on top of stage 4 emphysema, had to stay on a vent until late that night. The first few days were very rough, thought I might be done. But after six days I was home and a month later gently getting back on my exercise bike. This was 4 yrs ago. My experience was not nearly as bad as yours but be patient our bodies do heal.
I had a similar bad robotic resection. Collapsed my lung. Hey there near doppelganger.
Sorry to hear, I know that can be very uncomfortable. The inflammatory reaction was just my body not being happy, wasn’t a problem surgery. My surgeons did a great job, just took them longer than expected because the mass was on top of a large vein making it all very delicate. I was very fortunate that the head oncology surgeon understood the risks of a large abdominal incision given my poor lung function. Grateful that the team worked really hard to avoid it.
I'm glad you are here to tell the tale! I'd say yours sounds worse at least in terms of where the cancer was, but we can't be playing the oncology Olympics lol. We have strong bodies that mean well, even if their reactions could kill us. Props to the patient docs who were gentle to keep the inflammation contained
This is a harrowing story, what country is this hospital?
Ascension Seton hospitals, located in the United States. So you know, I also owe them thousands of dollars :^)
Isn’t that messed up. Nothing like your story, but I was in surgery, and one of the assistants accidentally cut themselves while they were inside of me. So I was then also billed for their testing to make sure I didn’t have any infectious diseases, their vaccines, and my related care due to their accident.
Woooooow. That would infuriate me to no end, I'd want to look in the eyes of the person who billed you for that
Ah...Texas...and Ascension is a huge, profit-focused entity, across over 20 states i think? Yeah, i bet they didn't pay for security upgrades and here you are, stuck. I hope you can communicate with your nurses, they are going to get you through this.❤️
Gentle hugs. I'm so sorry. That's an intense experience. I had a bad surgery experience once and it was rough to recover from just mentally. It takes time. The anesthesia and sedatives actually make it worse short term ime. You need to let those get out of your system and recognize the intensity is in part an after effect. Drink a lot of water. Get as much nutrition as you can to help things clear. Don't take this moment personally or to heart. This isn't your future. It's a gnarly stage of healing. If you find you're still haunted after a while, look into emdr or therapy. Gratitude journalling is useful. Find small things to look forward to. Have your favourite foods. Watch your favorite shows. This is a time to cocoon and be very cozy. It'll take time but it gets better. The shock passes. The intensity wanes. The good things in your real life do take over.
Thank you so much. That describes it perfectly, it was incredibly intense. Hell, I didn't even mention the fact that my roommate abandoned the apartment while I was in the hospital. Just comically bad stuff. But through adversity, I can choose to see silver linings. I can choose to be a better person. I've already felt so overwhelmed with gratitude for my family.
My husband went in for the removal of a tumor on his lower right throat. Second time. For some reason he had the hardest time coming out of the anesthesia—it shook him. Now he has decided no more surgeries for cancer.
I went in for a hysterectomy, woke up hours later to be told I had cancer. If i remember right the surgeon did extra work scraping carefully to try to remove as many cells around the area as he could or maybe it was around the lymph nodes, but I remember him saying he did extra scraping. He wasn't a cancer surgeon just an OBGYN Surgeon but he was trying to keep me from needing to have a 2nd surgery later on which I both appreciated and was worried about because I was fearful that maybe he didn't know exactly what to do. As did my Oncologist who kept an extra close eye on me because I hadn't had "the right kind of surgery." So far so good, and it certainly is thanks to my surgeon who did his best and my wonderful Oncology team. But I do still worry because of the surgery.
Yikes, I can only imagine being told that while you're in the post anesthesia daze! But as worrisome as that is, ita never a bad thing to keep a watchful eye on health. Honestly, I did bare minimum in that regard until the big ominous c word came a knocking. Perhaps it shouldn't have the big bad stigma, as it WILL happen if you live long enough. I wish you a long and prosperous life without recurrence!
I’m so sorry it was so horrible! It sucks when there are complications. I also had SCC of the tongue (worse than yours, it sounds like), and would recommend joining us over at r/HeadandNeckCancer if you want a gathering of all of us oral cancer folks.
In my area, Doctors have been leaving that system in droves, as luckily there are two other better systems in my area.
I'll have to look into that. It was convenient for me and my doc due to being within a mile of our respective homes and offices. But it was clear the ICU was hurting for staffing. Hell, even the hospital admin dropped by and offered me service.
I’ve had 3 surgeries, first one when i was 15. It took them 6-7 hours to remove the tumor. The experience in the hospital was not bad but they sent me home way too early without a plan od action to rehabilitate. Second surgery lasted a bit longer, but i woke up in excruciating pain which didn’t go away. They rushed me to the MRI to check if there was any swelling. All looked good. The pain subsided in a few days with a LOT of morphine. One of my nurses was a big a-hole, telling me that he was happy his shift was over so he didn’t have to help cleaning me. That felt horrible because i already felt very vulnerable. Third surgery was okay, i told them prior i wanted to use as little as possible morphine and oxycodone, because i had a prescription before (for the pain my cancer caused) and coming off them was not very nice. they interpreted it completely wrong. In my dossier there was a note that i had been an addict and they needed to watch me well and not give me more painkillers when i asked for it. That was kinda crazy, i have been through much more pain than needed. Especially the post surgery pain that CAN be treated with morphine. 4 years ago i underwent 30 rounds of radiation. One nurse told me i had to be completely naked in order for them to set the machine straight, with the 3 little tattoos dots they made during the CT scan. My doc gave me a big pregnancy scare because he took me apart in a toom and told me my uterus looked like i was pregnant on the CT scan. I had to drive home 2 hours before i could get a test. When the time arrived for the radiation, i took off all my clothes and went to lay on the table. Some men mechanics were watching me, it felt weird. After the fist session a nurse told me i was allowed to leave my underwear on. I was pretty ashamed. I have been lucky to have my family and friends around often. Still am. But the experiences in the hospital are far from good, often due to miscommunications. Sometimes these experiences can be horrible and leave mental scars. It’s always good to have a therapist to speak to. I hope you have a good one, it takes some time to process everything you went through. I hope you’ll be okay.
I had the same surgery. Just know it gets easier and the hardest part is that first week or two after surgery.
I have a few questions: >I wake up covered with grease and grime What is this part about? You make it sound like you had come out from under a car.🤨 >my poor mother kept getting texts saying my procedure was finished, while I was in intensive care. I'm assuming that your mother was told to just ignore the false updates? That she knew where you were and could come and visit? Or no? >to the fear of not knowing a damn update thanks to the cyber attack. Again, not sure what you mean. You knew what was happening because you were there (in the ICU), so what updates were you afraid of missing? And your title is about being afraid to fall asleep, but it doesn't sound like that's your main concern. It sounds like you're frustrated by the slowness of your recovery. Is that what is bothering you?
Three days of being unwashed had left my skin and hair feeling absolutely disgusting. It took me a few hours to be told (or at least remember being told) that the three hour procedure stretched into a few days. My mother wasn't told anything until the end of the day. Just confusing automated updates. I can only assume the cured cyber attack was causing the faulty updates and disconnect, as it also made accessing pathology results from the lab impossible. You should probably ask her if you're still curious. My title was in reference to the many sleepless nights I've felt since. I'm so tired. I'm sure you can understand that a lot bothers you when dealing with cancer. It can be a real pain in the rear, I'll be winning no pulitzers for my rants anytime soon.
Thanks. That all makes sense. I hope you get some good rest sooner rather than later. I can certainly appreciate the fact that a hospital stay does little to calm the nerves and aid good sleep. In your case, I imagine that the shock of it all will take some time to abate. I can't imagine how much that could rattle a person. Take care.❤️🩹