There is no support anywhere for people with esophageal stents
Seriously. All I find are journals (that don't end well for the patient) or stent diets and other bullshit I don't need. Where are the patient accounts? Even in the support groups, everyone is too fucking different. Too many different symptoms. Stents in different locations. Permanent stents. Temporary. Biodegradable. Stents migrated so were removed.
I have found only one person with a very similar situation to me. Also on keytruda (immunotherapy) and also with esophageal stent in the GE junction. He also had a second stent inserted because of blockage. And now he also has the similar feeling I get when eating/resting.
If you're out there looking for some support, here's my stent story. I think I've told it before but fuck it, here it is again. Blame it on the chemo brain.
So my tumours had been growing and blocking the junction of where my stomach and esophagus meet. Eventually they closed up so much I couldn't even swallow saliva. This was when I flew home to Australia to get diagnosed. I was doing tests, xrays, barium swallows and every doctor said "The good news is, it's not cancer." Because bloodwork was great and xrays didnt show anything. The swallow showed a stricture but "It's likely achalasia." OH OK. THANKS.
It took finally getting a gastroscopy done to find out that I had poorly differentiated adenocarcinoma - which means a very bad cancer. It's diffused gastric cancer, doesn't show in bloodwork and barely shows in scans. I had a PET and CT done which lit up like Christmas trees - very festive, all those lymph nodes partying in my body.
So my surgeon booked me in for a stent placement because he believed in quality of life and that a feeding tube would just be misery. He was right. Not that the stent has not been without its own problems, mind you.
I went in thinking this will be fine. I'll be fine. I'll be able to eat again then we can beat this cancer. I was so hopeful back then.
I woke up in recovery screaming. My chest was on fire, it felt like something was ripping it apart. "What is your pain level?" I was asked. "TEN! TEN!!!!!!!!!" I yelled. The nurse panicked, giving me every drug possible until she had to give me a suppository that finally calmed it down to a moderate level of 5-6. I was in recovery for a long time apparently and when they wheeled me into the ward, my husband was so worried with how I looked.
I spent the night vomiting nonstop. Blood, gunk, stuff that was stuck but couldn't come up due to the blockage. Nurses came in and injected me and drugged me. My surgeon and oncologist kept changing my charted meds... the nurses started to get confused. Damn these men! Stop messing with my meds!
After 2 and a half nights in the hospital, I was finally released, able to drink again and eat liquid foods. I healed up nicely and once the stent finished expanding, the pain was manageable - though still severe with spasms and nerve pain. Nothing some nerve pain drugs couldn't fix! Yeah, so the endless supply of drugs started. Just call me Pill popping Polly.
I finally started chemo a few weeks after this, and with chemo, shit started moving around and my stent got blocked by the fucking tumour. I couldn't eat again. So we had to do another barium swallow to confirm blockage, then into hospital I went for a second stent placement. I was told this one wouldn't be as painful.
Well he was right. It wasn't a 10. It was an 8. My chest was burning from all the acid buildup due to being unable to take my acid reducing pills for days. I was in absolute misery all night, and my husband couldn't stay the night because it was a shared room. I was so lonely and ready to die. I just wanted all of it to be over.
No more questions, no more worries, no more pain.
I felt OK the next day and could swallow so I was sent home. But that night something weird happened. My whole body starting shaking uncontrollably resulting in me getting really bad DOMS the next day. I called my surgeon and he said that I had started shaking on the operating table and the anesthetist said it was a normal reaction to the anesthetic. WHAT THE FUCK. In recovery, they were concerned about my heart rate too. And when I got home, my heart rate was super high at 140-145. No idea what was happening. Stent pressing on sympathetic nerves most likely.
And now? Well now I have been spitting up mucus every night. It chokes and wakes me up - always from the middle of the chest, where my tumours and stents are. And now that area feels inflamed and there's a "ball" like feeling in my chest - like anything I try to send down will just get sent back up. Almost like my esophagus is so used to spitting up and vomiting that it now no longer knows how to push food down anymore.
But it's nearly Xmas and I don't want to go to hospital for any procedures. I can survive a couple of weeks on liquids. If this is my last Christmas, then the last thing I want is for me to be coming out of recovery in pain again.
I don't even know what my surgeon could possibly do. He said the stents are permanent, can't be removed. And he can't stent the whole damn esophagus.
I can only hope it's inflammation and will settle down with time. I could use a well deserved break after all that fucking chemo and everything else that has fucking happened to my life.
What a wreck.
I have found only one person with a very similar situation to me. Also on keytruda (immunotherapy) and also with esophageal stent in the GE junction. He also had a second stent inserted because of blockage. And now he also has the similar feeling I get when eating/resting.
If you're out there looking for some support, here's my stent story. I think I've told it before but fuck it, here it is again. Blame it on the chemo brain.
So my tumours had been growing and blocking the junction of where my stomach and esophagus meet. Eventually they closed up so much I couldn't even swallow saliva. This was when I flew home to Australia to get diagnosed. I was doing tests, xrays, barium swallows and every doctor said "The good news is, it's not cancer." Because bloodwork was great and xrays didnt show anything. The swallow showed a stricture but "It's likely achalasia." OH OK. THANKS.
It took finally getting a gastroscopy done to find out that I had poorly differentiated adenocarcinoma - which means a very bad cancer. It's diffused gastric cancer, doesn't show in bloodwork and barely shows in scans. I had a PET and CT done which lit up like Christmas trees - very festive, all those lymph nodes partying in my body.
So my surgeon booked me in for a stent placement because he believed in quality of life and that a feeding tube would just be misery. He was right. Not that the stent has not been without its own problems, mind you.
I went in thinking this will be fine. I'll be fine. I'll be able to eat again then we can beat this cancer. I was so hopeful back then.
I woke up in recovery screaming. My chest was on fire, it felt like something was ripping it apart. "What is your pain level?" I was asked. "TEN! TEN!!!!!!!!!" I yelled. The nurse panicked, giving me every drug possible until she had to give me a suppository that finally calmed it down to a moderate level of 5-6. I was in recovery for a long time apparently and when they wheeled me into the ward, my husband was so worried with how I looked.
I spent the night vomiting nonstop. Blood, gunk, stuff that was stuck but couldn't come up due to the blockage. Nurses came in and injected me and drugged me. My surgeon and oncologist kept changing my charted meds... the nurses started to get confused. Damn these men! Stop messing with my meds!
After 2 and a half nights in the hospital, I was finally released, able to drink again and eat liquid foods. I healed up nicely and once the stent finished expanding, the pain was manageable - though still severe with spasms and nerve pain. Nothing some nerve pain drugs couldn't fix! Yeah, so the endless supply of drugs started. Just call me Pill popping Polly.
I finally started chemo a few weeks after this, and with chemo, shit started moving around and my stent got blocked by the fucking tumour. I couldn't eat again. So we had to do another barium swallow to confirm blockage, then into hospital I went for a second stent placement. I was told this one wouldn't be as painful.
Well he was right. It wasn't a 10. It was an 8. My chest was burning from all the acid buildup due to being unable to take my acid reducing pills for days. I was in absolute misery all night, and my husband couldn't stay the night because it was a shared room. I was so lonely and ready to die. I just wanted all of it to be over.
No more questions, no more worries, no more pain.
I felt OK the next day and could swallow so I was sent home. But that night something weird happened. My whole body starting shaking uncontrollably resulting in me getting really bad DOMS the next day. I called my surgeon and he said that I had started shaking on the operating table and the anesthetist said it was a normal reaction to the anesthetic. WHAT THE FUCK. In recovery, they were concerned about my heart rate too. And when I got home, my heart rate was super high at 140-145. No idea what was happening. Stent pressing on sympathetic nerves most likely.
And now? Well now I have been spitting up mucus every night. It chokes and wakes me up - always from the middle of the chest, where my tumours and stents are. And now that area feels inflamed and there's a "ball" like feeling in my chest - like anything I try to send down will just get sent back up. Almost like my esophagus is so used to spitting up and vomiting that it now no longer knows how to push food down anymore.
But it's nearly Xmas and I don't want to go to hospital for any procedures. I can survive a couple of weeks on liquids. If this is my last Christmas, then the last thing I want is for me to be coming out of recovery in pain again.
I don't even know what my surgeon could possibly do. He said the stents are permanent, can't be removed. And he can't stent the whole damn esophagus.
I can only hope it's inflammation and will settle down with time. I could use a well deserved break after all that fucking chemo and everything else that has fucking happened to my life.
What a wreck.
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