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Thread: I'm Still Here

  1. #61

    Re: I'm Still Here

    So here is a trippy story for you....................and yes, I know I am mentally irregular.

    A few months ago, I was taking a pill in the morning for stomach acid, a very tiny one, it got stuck in my throat. Real weird as I can swallow huge pills no issue. Ended up at urgent care since it wouldnt go away. Finally, it disolved, well happened about 3 days later, back to urgent care. Thought maybe I had strep or something and it was swollen.

    THey said they would set me up for a scope. 2 nights later a ghost came to my bed (No I do not believe in ghosts in white sheets going booo booo, but I believe our mind is so powerful it makes things appear in a way we can understand, and yeah, I am open to there could be things out there we dont know about), and I am one of those strange people that always saw things others didnt, and I always knew things I wasn't suppossed too, or shouldnt. My grandmother and Aunt were the same way.

    Anyways, this man in black, reached out and yanked me into a sitting position, as soon as he did that, all this stomach acid came out my throat, I fell onto the floor, couldn't breathe, finally I started wheezing and was getting some air in. What seeemed like an hour later I was able to take heavy short breaths ( probably 2 minutes). I was having trouble swallowing spit or anything.

    If that ghost had not yanked me up, I could easily have died by asphyixiation. Sat up in bed for a few hours calming down went to the the emergency room.

    They tried to do an emergency scope on me, problem was, we learned Fentanyl doe not work on me, it seems I punched a nurse and yanked the tubes out of my throat, they couldn't do it even with restraints. They had to re-schedule and use that crap that killed Michael Jackson, propophyl or something.

    Still not entirely ehaled, but..................I am alive, I am still kicking, so, I call that a win.

    Anyways, thats my tube in my throat story

    Oh, and I was told no more coffee, screw that non sense

  2. #62

    Re: I'm Still Here

    Quote Originally Posted by KDaddy23 View Post
    That's amazing news! I don't know about you but I hate the camera up the nose thing...
    Thanks my friend. I've become use to it after 13 years and twice each year. This year it was a threesome. Still don't care for it. BTW that's an amazing story Jaz. I too am a believer and have a few stories of my own.

  3. #63

    Re: I'm Still Here

    Quote Originally Posted by Jazminedress View Post
    So here is a trippy story for you....................and yes, I know I am mentally irregular.

    A few months ago, I was taking a pill in the morning for stomach acid, a very tiny one, it got stuck in my throat. Real weird as I can swallow huge pills no issue. Ended up at urgent care since it wouldnt go away. Finally, it disolved, well happened about 3 days later, back to urgent care. Thought maybe I had strep or something and it was swollen.

    THey said they would set me up for a scope. 2 nights later a ghost came to my bed (No I do not believe in ghosts in white sheets going booo booo, but I believe our mind is so powerful it makes things appear in a way we can understand, and yeah, I am open to there could be things out there we dont know about), and I am one of those strange people that always saw things others didnt, and I always knew things I wasn't suppossed too, or shouldnt. My grandmother and Aunt were the same way.

    Anyways, this man in black, reached out and yanked me into a sitting position, as soon as he did that, all this stomach acid came out my throat, I fell onto the floor, couldn't breathe, finally I started wheezing and was getting some air in. What seeemed like an hour later I was able to take heavy short breaths ( probably 2 minutes). I was having trouble swallowing spit or anything.

    If that ghost had not yanked me up, I could easily have died by asphyixiation. Sat up in bed for a few hours calming down went to the the emergency room.

    They tried to do an emergency scope on me, problem was, we learned Fentanyl doe not work on me, it seems I punched a nurse and yanked the tubes out of my throat, they couldn't do it even with restraints. They had to re-schedule and use that crap that killed Michael Jackson, propophyl or something.

    Still not entirely ehaled, but..................I am alive, I am still kicking, so, I call that a win.

    Anyways, thats my tube in my throat story

    Oh, and I was told no more coffee, screw that non sense
    Any procedure you can walk away from is a win... but that's pretty weird and it's never the big pills that get stuck.

  4. #64

    Re: I'm Still Here

    So, I'd met with the radiation oncologist on Thursday and this dude is totally confident that my cancer can be cured once the radiation phase is complete. He palpitated my neck and peered down my throat and said that he doesn't see or feel any tumors, which kinda doesn't surprise me since the big one probably lost the majority of its mass when it crumbled and had me bleeding out. I'm thinking, "Oh, you don't feel or see anything... but we're doing this anyway?" but I didn't say it.

    I have to go in on the 26th to be scanned and to participate in a simulation, where I'll meet the people dosing me with the radiation and get fitted for a mask and I'll have a question for them since I'm supposed to keep my head still during the treatment: What do we do when Mr. Trach decides I have to cough up some secretions? I mean, those coughs aren't gentle and not coughing isn't an option so it'll be interesting to hear how they're going to deal with this one. And speaking of Mr. Trach...

    The disposable inner cannula for #6 have been backordered and we're told that they'll ship when they're available; in the meantime, the supplier suggested contacting the ENT doc and having him order a #6 with the reusable cannula and... my lady kinda spazzed on the woman and pointed out that if the doctor had wanted one with the reusable cannula, that's the one he would have prescribed. That and it makes no sense to remove this trach, put in another one, then having to take that one out because the backordered goods have shipped.

    I honestly don't know if she's going to call and, at least, ask about this but she might; there's no tell how many times she can clean the cannula that came with the trach before it fails. We'll see come Tuesday. Meanwhile, the radiation oncologist gave me a list of things... I can't do once radiation starts; I have some medication I need to pick up from the pharmacy; an online thing I had to do came with a list of approved lotions I can use so I got a bottle of Eucerin. I'm still not looking forward to doing this but once he told me how the palliative version would go - large doses of radiation once a week (with chemo), yeah, all of a sudden, coming in every day for small doses sound like a better way to go. He tells me that it might be three weeks before I start seeing and/or feeling any of the side effects and except for the hair on my arms, I'm sure that I don't have any more hair to lose.

    The one "upside" to the hair loss caused by the chemo is my pubes and balls are perfectly hair-free and smooth... and there is no sign of it growing back.

    Have a good and safe time over the holidays!

  5. #65

    Re: I'm Still Here

    You can removed and clean the inner cannula with the brush supplied in your trash care kits. They should be capable of being cleaned over and over without failing or breaking and this is true for both the disposable cannulas and the permanent ones. As for the coughing during radiation thing, that was never problem for me. They will have an intercom in the room you'll be in, so if you need to cough and clear your airway, just ask the tech to pause the automated program until you are ready to continue. The radiation emitter should make a pretty loud sound when the radiation is on and will move to a new position before starting to emit again so that will provide an opportunity to cough as well. In my case, I signaled with a raised hand when I needed a pause just in case I couldn't speak.

    Eunice hand cream is OK for your radiation burns but skinned aloe vera leaf is far and away better. After my radiation, I now have a permanent "tan" on my neck!Click image for larger version. 

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  6. #66

    Re: I'm Still Here

    My lady does a good job cleaning it so no worries there other than the durability of the inner cannula; there's a reason why they're disposable. We're still on for the simulation on the 26th so I'll ask my questions and get answers from the techs... and, um, the last thing I need is a tan but I'll keep aloe vera in mind; I think our local market carries the leaf. Thanks for your observations!

  7. #67

    Re: I'm Still Here

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    This is after 33 radiation treatments 11 years later. Note the dark spot in the one. That's my tattoo. The doc probably prescribed silver sulfadiazine cream. You'll need it. You won't notice any real effects until about 3 weeks into it. BTW I don't have to shave my neck any more and if I'm going outside in the sun for anytime at all I have to put on 50+ sunscreen. I don't dare get my neck sunburned.
    Last edited by DD788Snipe; Dec 27, 2023 at 2:59 AM.

  8. #68

    Re: I'm Still Here

    I don't remember off the top of my head the two medications they ordered for me and in advance of my first treatment. It kinda irks me that they downplay the side effects somewhat; oh, they're going to happen - but I'll be okay, which I seriously doubt if you're still showing the effects of your treatment... 11 years down the road. I don't know how much better the technology has gotten since you went through the protocol but I'm guessing not a whole lot; on the one hand, it's a "small price to pay" to not be dead from the cancer but the aftereffects still impact your life to a high degree.

  9. #69

    Re: I'm Still Here

    Quote Originally Posted by KDaddy23 View Post
    I don't remember off the top of my head the two medications they ordered for me and in advance of my first treatment. It kinda irks me that they downplay the side effects somewhat; oh, they're going to happen - but I'll be okay, which I seriously doubt if you're still showing the effects of your treatment... 11 years down the road. I don't know how much better the technology has gotten since you went through the protocol but I'm guessing not a whole lot; on the one hand, it's a "small price to pay" to not be dead from the cancer but the aftereffects still impact your life to a high degree.
    Well, my ENTs nurse at the time explained to me that Docs wouldn't tell you about the after-effects because they don't want to scare you. You're right about the "small price to pay" my friend. I've learned to adapt and overcome. Knowledge is power.

  10. #70

    Re: I'm Still Here

    The latest news is that my trach is going to be taken out this coming Wednesday. Apparently, my ENT doc talked with my radiation oncologist doc and they decided that I don't need my trach. I think this decision also included the problem with the disposable inner cannula for my trach being backordered and no information on when my order would be filled and shipped - and the inner cannula that came with my #6 trach clearly says, "Do Not Clean!" Well, that's a problem since not cleaning it could result in infections; my lady is close to losing her cool over the matter; I'm experiencing sharp and often bad pains on the left side of my throat, from swallowing to coughing to just sitting and suddenly feeling like I've been stabbed in the throat.

    I am hoping that when I get to the part where the radiation side effects kick in, I won't need to be trached again. My RO doc seems to be of the mind that I won't suffer the really bad effects and when he said that, I'm looking at him and as if to say, "How the hell do you know that?" - but I was determined to not fuss with this man and if he's wrong, well, it's gonna suck to be him. Anywho, the ENT doc instructs my lady to remove my inner cannula and cap the trach and then pay attention to how I'm breathing and if I'm having trouble, remove the cap and reinsert the inner cannula - and call him. I learned what the difference is between a cuffed trach and an uncuffed one. The easy explanation is the cuffed trach takes your nose out of your breathing loop and is also used if/when you have to be on a respirator. The uncuffed one puts your nose back into your breathing loop so for me, I've been breathing normally through my nose (as well as my trach) ever since the #6 was installed - and then having to deal with my nose running like crazy.

    She clicks the cap in place and is watching me closely... and I want to laugh but I don't and explain to her that I've been breathing through my nose since this thing was put in. She nods... and keeps watching me. I know that the cap locks in place but what's going to happen when I have to cough and then, cough really bad? Will the cap pop off? It shouldn't but YNK about these things. My coughing seemed to lessen and now I have to spit out any secretions that comes up - but the real test would come at bedtime. I didn't exactly lie flat - I had my head propped up on my pillows - and I had a few moments where my body didn't like how I was laying, and things got a little coughy - but a shot of Mucinex took care of that and I only woke up twice to spit some stuff out and to pee - but I slept fairly decent and all things considered.

    Once I get the trach out, then I can focus my energies toward making it through 35 radiation treatments so fingers crossed - this gets real on 01/08/24.

  11. #71

    Re: I'm Still Here

    Fingers crossed, and toes, and my penis is tied in a knot (I wish .. )

  12. #72

    Re: I'm Still Here

    I've been fitted for my mask and I have another tattoo - a tiny reference dot that looks like a mole. The mask thing didn't freak me out but the nurse technician said it would be warm... and it was fucking hot! The she suggests that I close my eyes and I'm thinking, "No shit!" as she pulls this material up over my face and head. The scanning went surprisingly well since I was lying flat, and something I was told not to do since I could aspirate the secretions that I cough up and the techs kinda freaked out because I told them that once I start coughing, there's no way I can keep my head still; I had the impression that they never did this with someone with a tracheostomy.

    But I made it through the simulation... and next week, not only do I get the trach out as mentioned but I have a trial run two days later and then, the real thing on the 8th so keep the good vibes coming and learn from my experience.

  13. #73

    Re: I'm Still Here

    best wishes my friend

  14. #74

    Re: I'm Still Here

    Glad to hear you'll have that pesky trash out soon. Stay strong!

  15. #75

    Re: I'm Still Here

    Good to hear that the teach is being removed. I feel that's a good move for you. Hopefully it will heal up quickly. Your ENT sounds like he's focused on your treatment and well being.

    "downplay the side effects somewhat; oh, they're going to happen - but I'll be okay, which I seriously doubt if you're still showing the effects of your treatment... 11 years down the road"

    Well it will make changes in the way your saliva glands work. I have chronic dry mouth and my voice has never regained the strength it had along with the sensitivity to UV light. Adapt and overcome my friend.
    Last edited by DD788Snipe; Dec 31, 2023 at 2:32 AM.

  16. #76

    Re: I'm Still Here

    Quote Originally Posted by DD788Snipe View Post
    Good to hear that the teach is being removed. I feel that's a good move for you. Hopefully it will heal up quickly. Your ENT sounds like he's focused on your treatment and well being.

    "downplay the side effects somewhat; oh, they're going to happen - but I'll be okay, which I seriously doubt if you're still showing the effects of your treatment... 11 years down the road"

    Well it will make changes in the way your saliva glands work. I have chronic dry mouth and my voice has never regained the strength it had along with the sensitivity to UV light. Adapt and overcome my friend.
    Radiation knocked out my Parrotid salivary gland (the biggest one) and gave me dry mouth. I got good results using a med called cevimeline (Evoxac) that makes all your other salivary glands produce more. After a few years, I no longer needed it. Ask for Dr about it.

  17. #77

    Re: I'm Still Here

    Good luck sir!

  18. #78

    Re: I'm Still Here

    The trach is out. Doc says the stoma should heal over in about a week so I gotta keep it covered and apply moderate pressure if/when I have to cough, sneeze, whatever. It feels good having it out; slept fairly decent last night and for the first time in a long time. Now I gotta get ready for radiation...

  19. #79

    Re: I'm Still Here

    I bet having that thing out is a relief!

  20. #80

    Re: I'm Still Here

    That's great kdaddy, glad you are finally able get good sleep!

  21. #81

    Re: I'm Still Here

    Quote Originally Posted by Neonaught View Post
    Radiation knocked out my Parrotid salivary gland (the biggest one) and gave me dry mouth. I got good results using a med called cevimeline (Evoxac) that makes all your other salivary glands produce more. After a few years, I no longer needed it. Ask for Dr about it.
    Thanks for the info. I'll ask my doc about it.

  22. #82

    Re: I'm Still Here

    Quote Originally Posted by KDaddy23 View Post
    The trach is out. Doc says the stoma should heal over in about a week so I gotta keep it covered and apply moderate pressure if/when I have to cough, sneeze, whatever. It feels good having it out; slept fairly decent last night and for the first time in a long time. Now I gotta get ready for radiation...
    Glad to hear it. I was amazed how fast mine healed. Just a couple of days.

  23. #83

    Re: I'm Still Here

    Did my trial run/additional scans today and it went well except for a moment where they "locked" my mask down so tight that I couldn't swallow. The funny part was the techs implied that I wasn't supposed to swallow! Not only do I have the mask on, but I've got this... bit in my mouth to keep my jaw open a certain distance and saliva was starting to pool in my mouth and to me, that's a choking hazard and I did ask, "How can I not swallow?" and the looks they gave me were precious - but they loosened the mask enough that I could swallow.

    I was praying that I didn't have to cough and that I could suppress it - and I didn't cough! We go live with the radiation on Monday...

  24. #84

    Re: I'm Still Here

    Haven't heard from you in a while kdaddy .. is your chemo going okay?

  25. #85

    Re: I'm Still Here

    Everything's going fine - just nothing to report! I'm on Day 8 of my radiation treatment and it's a busy day for me - bloodwork prior to chemo tomorrow - and if I even make it since it's supposed to snow pretty badly here. Virtual call with the palliative team is suppose to happen now but they're having technical difficulties.

  26. #86

    Re: I'm Still Here

    Glad it's going as well as it can .. hang in there (hugs)

  27. #87

    Re: I'm Still Here

    So, the latest news is that my throat is a little sore from the radiation and I've totally lost my sense of taste - everything tastes like nothing! Not much in the way of fatigue; I'm more tired because I'm not a morning person and I still haven't quite adjusted to being one so I can make all of my appointments. Had a CT targeting scan after treatment today so they can refine where they need to zap me... and speaking of getting zapped, my tech team has gotten better at getting my mask on me and locking it down without choking the shit out of me. It kinda fucks with me to think that it takes me longer to get ready to get zapped than it does actually getting zapped and makes me wonder why I even bother with getting dressed just to spend 5 or 10 minutes in the machine; oh, wait, I know why - it's fucking cold out there in the morning! The good part is I get to come back home and, usually, take a nap for an hour or so.

    I woke up this morning thinking that three months ago, I was fighting for my life after coding (and dying twice) in the ER - but it seems longer than that but that's probably because chemo and radiation days just drag along like getting up to go to work every day. I got into bed from a trip to the bathroom the other night and I coughed as I was lying back down... and it took me back to 27 October 23 when, getting back into bed after a bathroom trip, I coughed and coughed up blood; I relived having my face in the bathroom sink spitting out blood and blood clots and talking to the paramedics my lady had called and... the next thing I knew, it was mid-November and one of my first memorized thoughts was knowing that I had died along with flashes of memories being in the ER, then ICU; a trip to a lab that was right out of Star Trek to have a feeding tube put in and other brief pieces of memories that returned to "haunt" me and all because I got into bed and coughed.

    I'd had a big tumor in my neck that I was told disintegrated when I coughed and caused the events that followed; I remember a moment where I was throwing up blood like crazy but someone telling me that I was okay and that I could breathe and they were gonna take care of me. Another memory of a male nurse telling me that he was checking my groin because of a procedure they did on me and one my lady told me was needed to stop me from bleeding out and she had mentioned that my vascular surgeon showed up and I'm thinking that he probably saved my life - again. I'll find out when I see him next month for the yearly check on my repaired AAA.

    I'm trying to not let remembering this shit fuck with me too much. I think it doesn't help that my team likes to tell me that they know that I've been through a lot and more than most cancer patients and they're professional enough not to tell me what they mean by that... but I know. Telling me that I'm doing great and/or I'm handling everything well and all things considered... but I know what they mean by that. Sometimes, when you have cancer, it's not the cancer that's the biggest problem you have to deal with...

  28. #88

    Re: I'm Still Here

    (nuzzles/hugs)

  29. #89

    Re: I'm Still Here

    Dark places my friend. Do everything you can to not go there and I know it's easier said than done.

  30. #90

    Re: I'm Still Here

    You're still among us, the living so keep your morale and nutrition up. You'll turn the corner soon!

 

 

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