I'm Still Here

[KDaddy23]

Back in September, I was diagnosed with cancer. Okay; no need to lose my shit - let's get it taken care of! A plan was created and I got one chemo treatment under my belt before... everything went straight to hell. The tumor in my neck basically corroded and a simple mild cough started me bleeding out and according to my lady, it wasn't looking good for me.

Still here. Take cancer as seriously as you can; get diagnosed and treated and hope that you never go through what I did. This doesn't have anything to do with being bisexual but you can't be this way if you're not around, right?

[Luv3wayfun]

Yes, I?m glad you are still here!
I had a dark spot above my mustache (I?m blonde and now gray) and a biopsy showed basal cell carcinoma. Had that removed in June 2023, not too bad. They biopsied another spot below my left eye, looked like a tiny pimple that wouldn?t heal.
July 26 was the second surgery, they took some out, analyzed it, came back and said we have to go deeper. Took that, analyzed it and said we are deep enough (4mm) and said we have to go wider. So I ended up with a chunk out of my left upper cheek about the size of a quarter squished into an oval and damn near to the bone. They had to call in the ear nose and throat team to do facial reconstruction on my left cheek.
Fortunately they said they got it all and 3.5 months later it isn?t very noticeable if I don?t say anything to people.

FUCK CANCER!!!

[DD788Snipe]

Damn it KDaddy. I never like to hear this crap. Okay, I know it sounds bad. I'm a stage 4 cancer survivor. Diagnosed at the end of 2010. Metastatic Squamous cell carcinoma on the base of my tongue and had moved to the limp nodes in my neck below my left ear. 33 nasty radiation treatments with 3 heavy-duty cisplatin chemo treatments along with them. It was hell my friend. I'm a tough guy but that kicked my ass. By the end, I was in a wheelchair. I couldn't walk across the room. I was on a feeding tube because the radiation burnt my throat so bad I couldn't swallow or talk. With all that said. I'm still here. I know more about the demon than I want but knowledge is power my friend. It's not a death sentence and it can be conquered and eliminated. It is up to you. I can help if you wish so PM me if you want. The open forum isn't a good place to discuss this shit. BTW I'm still at war. I had 2 surgeries at the end of "21" to remove a tumor from my tongue and part of it then the second was to remove what was left of the limp nodes in my neck. Hope I didn't scare you too much. Not my intention. Just trying to help a friend out. Be strong :)

[DD788Snipe]

BTW I've pretty much recovered and I'm as normal as I can be. At least normal for me. Lol

[Long Duck Dong]

Had a friend diagnosed with bowel cancer a couple of months ago, its been caught early enough that its easily treated.
They said to the specialist, will I still be able to be fucked by monster cocks?, the specialist was lost for words.

I have a friend that has cancer and they laugh about it, much to peoples shock.....then he tells them the truth, 37 operations, endless chemo and radiation, and hes been told hes cancer free 5 times...
He calls it his stalker ex cos it will not leave him alone......and while people struggle with his sense of humor, as he says, his sense of humor is going to die with him, not before him.
As he said to a nurse one day, everybody who has drunk water, has died or is going to die, not everybody with cancer, has died because of it, so logically he should be more scared of water than cancer....

Anyways, Kdaddy, hope all goes well with the treatment

[KDaddy23]

The cancer has been deemed to be curable so there's that and, right now, is the 'least' of my problems: It's the feeding tube and the tracheotomy that had to be done that's really messing with my head and is taking a lot to get adjusted to. I had two chemo sessions while cooped up in the hospital and #4 will be this coming Monday but my concern is the radiation part of the deal - even my oncologist made a bad face when I asked her how bad was it going to be... and bad enough that I'll be stuck with my feeding tube and tracheotomy for quite a while longer.

Still, it's good to be around to "complain" about it...

[NJwood]

Glad to hear you’re fighting it. Yes, the treatment side effects suck but, as you said, it’s good to be around to complain! Good luck!

[elian2]

I'm glad to hear that it is a curable diagnosis, I will have to nuzzle you extra hard this time. Hang in there buddy, I will pray for you and your family.

[Neonaught]

I feel you sir! I went through 2 bouts with Squamous Cell Carcinoma starting in 2010. Primary site was hidden behind my right tonsil and through the efforts of neglectful ENT Dr, it went to Stage 4 and invaded my neck. I was finally correctly diagnosed, had a tonsilectomy and went through chemo and radiation. It was NOT fun! The rad burned my neck until it cracked open. The chemo was fairly gentle. I got the feeding tube after I lost 6 pounds in 4 days. I simply could not eat since everything I put in my mouth tasted indescribably foul. I went in at 265 lbs and came out in remission at 160 lbs. I entered remission and started to rebuild.

Just over 4 years later it came back on the right margin of my tongue and in the wall of my throat where the tonsil was. I consulted a brilliant surgeon and he split my jaw so that my lower face opened like a book and removed the cancer. A slab of muscle and blood vessels were harvested from my left thigh and used to patch the defect and my jaw was reassembled. Another feeding tube! Yay!!!

Due to the method of the surgery, it was clear I was going to lose several of my front lower teeth (I could pull them out and put them back in!). Unfortunately, I consulted a bed dentist who had no idea how to deal with post-radiation cases and he proceeded to pull 8 teeth and failed to send me for the required hyperbaric oxygen chamber treatments that should have been done both before and after the extractions. Fast forward 2 years and I developed Osteoradionecrosis that made my jaw start to dissolve. That was finally diagnosed with X-rays showing a walnut-sized hole in my jaw. Back to the surgeons who removed 2/3's of my lower jaw and constructed a new one from my right Fibula. First surgery on bout #1 was 12 hours and the 2nd was 16 hours. After I recovered, the dental implants and permanent dental plate took another 4 years of work to complete. I remain in remission since then and can eat fairly normally, though it requires a lot more effort and time to eat a simple burger and fries than a regular guy.

Stay hopeful! Stay as well-nourished as you can with plenty of extra protein for healing and know that this IS a survivable disease! My cancer was caused by the HPV virus, which to my knowledge I never had any signs of. My Dr explained that 85% of the US gets HPV and never even realize it since their immune system kills it. Unfortunately, there are several variants of HPV that, instead of causing Genital Warts, cause Cervical cancers in women and head and neck cancers in men. Folks please vaccinate your kids well before they become sexually active!!! My biggest deficit (to me anyway) is that I can't extend my tongue past my front teeth or open wide enough to fit two stacked finger between my teeth and it plays hell with giving oral sex, which I dearly loved to do. Small price to pay but it is a price. Stay positive and let me know if you need any advice.

[KDaddy23]

Yeah, apparently, mine is HPV-related and involved my right tonsil as well. When asked about the stage of things, no one had anything to say about it which, I dunno, on the one hand was okay because knowing there was a stage probably would have triggered a freak-out on my part but, on the other, maybe they didn't know the answer to the question. I'd met with my oncology team and I'd asked them the same question I'd asked the ENT who made the diagnosis: Is removing my tonsils going to be part of the treatment? They were all looking at each other and the surgeon starts talking about that not being an option because they'd have to split my mandible which could cause problems down the road and I'm thinking, "WTF? Since when did a tonsillectomy get that fucking complicated?"

They decided not to do chemo and radiation at the same time and, again, it's the radiation part that I'm dreading more than anything else; I just have the "advantage" of having the feeding tube and tracheotomy already in place. Yes, this is not only survivable but mine has been deemed to be curable versus palliative - and at my visit with my oncologist, she was very happy that after palpitating the shit out of my neck and throat, she couldn't feel anything and is very optimistic for a positive outcome.

[biguycancun]

Just learning about this. Needless to say I'm pulling for you, wishing you a speedy response and a quick, comfortable recovery. Stay strong and positive. The role of attitude during and after treatment cannot be underestimated.

[Luv3wayfun]

KDaddy23 I believe we are all pulling for you to get through this successfully!!
Other than that I have one other thing to say on this subject:

​FUCK CANCER!!!

[DD788Snipe]

Yeah, apparently, mine is HPV-related and involved my right tonsil as well. When asked about the stage of things, no one had anything to say about it which, I dunno, on the one hand was okay because knowing there was a stage probably would have triggered a freak-out on my part but, on the other, maybe they didn't know the answer to the question. I'd met with my oncology team and I'd asked them the same question I'd asked the ENT who made the diagnosis: Is removing my tonsils going to be part of the treatment? They were all looking at each other and the surgeon starts talking about that not being an option because they'd have to split my mandible which could cause problems down the road and I was thinking, "WTF? Since when did a tonsillectomy get that fucking complicated?"

They decided not to do chemo and radiation at the same time and, again, it's the radiation part that I'm dreading more than anything else; I just have the "advantage" of having the feeding tube and tracheotomy already in place. Yes, this is not only survivable but mine has been deemed to be curable versus palliative - and at my visit with my oncologist, she was very happy that after palpitating the shit out of my neck and throat, she couldn't feel anything, and is very optimistic for a positive outcome.
Good info. Sounds like your team had a handle on it. Just a note before I forget. The docs won't tell you much. They don't like giving bad news is the way it was explained to me by his nurse. Talk to the nurses. Mine were amazing and very helpful. The feeding tube is definitely on the right track. I'll PM you why. It's a good thing your oncologist is doing the treatments separately. Stay strong my friend.

[Neonaught]

Keep us updated and stay strong! In my case, they did the chemo first and then the rad. Rad was tedious but not terribly painful, plus I had all the pain meds I needed. I just hope it doesn't come back since I took so much Hydrocondone that I am not allergic to all the opioids so would have nothing.

[KDaddy23]

I hope it doesn't come back, too, and that after all of this, they get every single cancer cell out of my neck.

[cornholejoe]

i have been fighting stage 2 lung cancer for a year now so far all is going well

[KDaddy23]

Had the fourth of six chemo treatments today and it went well and I'm feeling pretty good...

[DD788Snipe]

QUOTE=KDaddy23;378657]Had the fourth of six chemo treatments today and it went well and I'm feeling pretty good...[/QUOTE]

:thumbu::cool: You're a Warrior

[DD788Snipe]

KDaddy your PM box is full. :bigrin: That's a good thing.
https://www.hipforums.com/forum/forum/413-bisexual/

You're always welcome there too my friend.

[KDaddy23]

KDaddy your PM box is full. :bigrin: That's a good thing.
https://www.hipforums.com/forum/forum/413-bisexual/

You're always welcome there too my friend.

I fixed the fullness issue - and thanks for the link!

[Neonaught]

When you get ready to start radiation they will probably make a molded plastic sarcophagus that will be clamped over your upper body and had you still in the right position for the beams to hit the target area. I highly recommend getting a larger Aloe Vera cactus and using the gel interior of the peeled leaves to apply to your burns. It is both soothing and helps with healing.

[TRICK69]

GOD BLESS

[DD788Snipe]

When you get ready to start radiation they will probably make a molded plastic sarcophagus that will be clamped over your upper body and had you still in the right position for the beams to hit the target area. I highly recommend getting a larger Aloe Vera cactus and using the gel interior of the peeled leaves to apply to your burns. It is both soothing and helps with healing.
It's a full face mask that is heated then molded to you head. It fastens to the table to hold your head still. Then the radiation tech will move the table around till you body is lined up based on the P. E. T. scan. Then they tattoo a small dot below your neck. That will be used to line you up with two crossing laser beams for each of your treatments.

[KDaddy23]

It's a full face mask that is heated then molded to you head. It fastens to the table to hold your head still. Then the radiation tech will move the table around till you body is lined up based on the P. E. T. scan. Then they tattoo a small dot below your neck. That will be used to line you up with two crossing laser beams for each of your treatments.

This is beginning to sound interestingly complicated...

[DD788Snipe]

It's not Daddy. They try to pin point the Radiation as close to the tumor as possible to minimize the the damage to good cells. When you go for your treatment the tech puts the mask on and lock it down then line your tattoo up in the crosshairs push the button to start the machine and the computer takes over. It takes about 10 minutes each trip. They use the data from your P. E. T. scan and regular CT scan w/contrast dye. I had my own music the tech would play for me during my treatments. Pink Floyd's "Welcome to the Machine". Lol

[KDaddy23]

It's not Daddy. They try to pin point the Radiation as close to the tumor as possible to minimize the the damage to good cells. When you go for your treatment the tech puts the mask on and lock it down then line your tattoo up in the crosshairs push the button to start the machine and the computer takes over. It takes about 10 minutes each trip. They use the data from your P. E. T. scan and regular CT scan w/contrast dye. I had my own music the tech would play for me during my treatments. Pink Floyd's "Welcome to the Machine". Lol

I guess when I meet with the radiation team, they'll tell me how it's gonna work. I can't be scanned with contrast (because of my kidneys) so they'll just have the PET scan to use as a reference.

[Neonaught]

I guess when I meet with the radiation team, they'll tell me how it's gonna work. I can't be scanned with contrast (because of my kidneys) so they'll just have the PET scan to use as a reference.

All of my PET scans were overlayed with a CT scan for anatomical reference and I don't ever recall contrast being used.

[KDaddy23]

All of my PET scans were overlayed with a CT scan for anatomical reference and I don't ever recall contrast being used.

When I got my PET scan, there was no mention of a CT scan being needed; different strokes for different folks?

[KDaddy23]

Just checking in. Had pre-chemo lab work yesterday and drove myself to get it done. I'm finding that getting chemo - and steeling myself for radiation - doesn't bother me as much as the tracheostomy they had to do on me... to save my life. It's literally a pain in the neck and one I'm still having a hard time adjusting to...

[Neonaught]

Just checking in. Had pre-chemo lab work yesterday and drove myself to get it done. I'm finding that getting chemo - and steeling myself for radiation - doesn't bother me as much as the tracheostomy they had to do on me... to save my life. It's literally a pain in the neck and one I'm still having a hard time adjusting to...

agree. I've been trashed twice for both of my surgeries. The hardest part for me was trying to get any sleep due to it. I was lucky in that I had experience in caring for trash patients so I knew how to suction myself and remove and clean the thing. When they do remove the trash you'll be shocked how fast it heals and you get back to normal.

[KDaddy23]

agree. I've been trashed twice for both of my surgeries. The hardest part for me was trying to get any sleep due to it. I was lucky in that I had experience in caring for trash patients so I knew how to suction myself and remove and clean the thing. When they do remove the trash you'll be shocked how fast it heals and you get back to normal.

Yeah, trying to sleep with it is a major problem and more so when I'm supposed to wear a mask connected to a humidifier to keep things moist and that makes trying to sleep even harder. I'm lucky if I get four hours of sleep - and it's so hard to go back to sleep once something involving the trach wakes me up and, yeah, just trying to be comfortable sleeping in almost a sitting position is just fucking crazy - I'm used to sleeping on my side and, well, found out the hard way that you can't do that with a trach (or you shouldn't). The only saving grace is I can catnap during the day - but it doesn't replace a good night's sleep.

[DD788Snipe]

I guess when I meet with the radiation team, they'll tell me how it's gonna work. I can't be scanned with contrast (because of my kidneys) so they'll just have the PET scan to use as a reference.
I didn't think about that from the Chemo. I remember how the Chemo doctor watched my kidney function. I went to the lab so often my arm looked like a pin cushion. They gave me 3 nasty treatments of cisplatin 2 weeks apart. That would knock the shit out of me for about 5 days. I was getting my radiation each day for a total of 33 treatments Monday through Friday with weekends off. It will be interesting to hear what you Rad team will use to program the machine to treat you. Is it next week you meet with them?

[DD788Snipe]

Yeah, trying to sleep with it is a major problem and more so when I'm supposed to wear a mask connected to a humidifier to keep things moist and that makes trying to sleep even harder. I'm lucky if I get four hours of sleep - and it's so hard to go back to sleep once something involving the trach wakes me up and, yeah, just trying to be comfortable sleeping in almost a sitting position is just fucking crazy - I'm used to sleeping on my side and, well, found out the hard way that you can't do that with a trach (or you shouldn't). The only saving grace is I can catnap during the day - but it doesn't replace a good night's sleep.
After the last surgery on my neck to remove what was left of my lymph nodes I had a drain tube with a bottle attached for 2 weeks. I had to sleep in my recliner so I kinda feel your pain. Everytime I moved that drain tube pulled on the stitches an I was awake. I know it was not the same as having a trach installed. That's got to be miserable but it's temporary my friend. It's all a crappy nightmare but remember you will wake up from it and all will be better.

[Neonaught]

Yeah, trying to sleep with it is a major problem and more so when I'm supposed to wear a mask connected to a humidifier to keep things moist and that makes trying to sleep even harder. I'm lucky if I get four hours of sleep - and it's so hard to go back to sleep once something involving the trach wakes me up and, yeah, just trying to be comfortable sleeping in almost a sitting position is just fucking crazy - I'm used to sleeping on my side and, well, found out the hard way that you can't do that with a trach (or you shouldn't). The only saving grace is I can catnap during the day - but it doesn't replace a good night's sleep.

humidifier pump they rented me made so much damned noise, I often had to shut it down just to sleep at all. On a different note, should they give you Fentanyl patches, be VERY careful using them. I put on on my chest and noticed that being warm under covers in bed seemed to make the patch give me more of the drug. By day two, I could barely stand without falling. That scared me so I quit using the and stuck to ground up Hydrocodone put down my feeding tube. If CBD does any good of you, by all means try it. CBD does nothing for me but I made a tincture of ground up weed and did an alcohol extraction using Everclear and put that down my feeding tube and got some benefit from it.

[KDaddy23]

humidifier pump they rented me made so much damned noise, I often had to shut it down just to sleep at all. On a different note, should they give you Fentanyl patches, be VERY careful using them. I put on on my chest and noticed that being warm under covers in bed seemed to make the patch give me more of the drug. By day two, I could barely stand without falling. That scared me so I quit using the and stuck to ground up Hydrocodone put down my feeding tube. If CBD does any good of you, by all means try it. CBD does nothing for me but I made a tincture of ground up weed and did an alcohol extraction using Everclear and put that down my feeding tube and got some benefit from it.

I understand how important it is to keep my trach moisturized but when you have to be connected to a machine for this, it just does not lend itself to being comfortable and sleeping. Oh, I know about fentanyl; I was on the patches after I had my stroke and was left with neuropathy from head to toe on my right side. Man, I'd be so fucked up that I didn't know I was in pain but I had moments where one moment I'm wide awake and the next, out like a light. Yep, found out about being warm and under the covers, too; I'd get rendered unable to function. One upside I learned about it was... delayed ejaculation. My wife and poly wives found out that when I was on the patch, I could literally fuck them for hours before I could cum. At first, they liked it but I think they were very happy when I couldn't afford the patches and had to go without them.

[Jazminedress]

Best wishes for you

[KDaddy23]

Thanks Jaz! So, today's chemo day, which will probably take almost five hours - they inserted two one-hour "breaks" between certain medications so I get to... hang out. Listen to music. Contemplate my navel. Oh, and I'll share something with you that I learned last week: I did die and had to be revived. I'd gone for the post-hospitalization follow-up with my PCP - but my actual doctor didn't have any appointments available so I saw one of the CNP's in the practice (and one I had never met before). She's going through all the stuff from the hospital and kinda casually says that for someone who coded and had to be resuscitated, I was looking pretty good. She then told me how I died - respiratory failure and shock due to major blood loss.

Yes, this cancer shit is serious. Anyway, now I knew why those taking care of me were acting weird; seemingly surprised or amazed and always saying that I looked (and was doing) great considering all that I'd been through - but no one, not even my lady, told me what I'd gone through and I understand why they didn't but that's okay because I can't shake the fact that I knew that I had died. I'm still processing this bit of information and not to worry: I'm okay.

[KDaddy23]

So, the latest snafu is my platelet levels were too low for me to be infused yesterday. My oncologist believes that it's the chemo treatments themselves that's causing this but when I look at the test results, I saw where my platelet count went from being good and normal to dropping to below normal. Likewise, my red and white cell count is low, as is my magnesium and hemoglobin and its combining to make me anemic but it's also making me wonder if the chemo has caused yet another problem I'm going to have to deal with... if it doesn't kill me permanently. The problem is that there's no medication that can increase platelet levels - you need a transfusion of platelets which, in a way, doesn't make sense if the chemo is going to kick them back to the curb again.

I don't know. I'm meeting with my oncologist's PA next week to see what's up. The bitch of it is that this was supposed to be my last chemo treatment - and now things have been pushed back a week and maybe longer if this platelet thing can't be figured out. Otherwise, the thing that's fucking with me the most is... my tracheostomy. I have an upcoming appointment with the ENT who, I'm told, performed the procedure on me in the ER so me, him, and my lady are going to have a long conversation about this literal pain in my neck and beginning with being able to have a backup in the case the one I have in... comes out. That would suck and incredibly so since if it's not put back immediately if not sooner, I might not be able to breathe. Making it worse is that, apparently, he put in a trach that's an older model; this is what they had on hand and what got installed but doesn't quite line up with the devices that are currently listed as a replacement.

This could be a problem. I have my fingers crossed that I'm not going to cough the trach out (but it's possible); I do not want to put my lady through the trauma of trying to put it back and if it comes out, I'm pretty sure I won't be in any shape to do it - and there's no telling how long it would take EMTs to arrive and put it back. So I'm seriously not trying to do anything to make it come out but if it has to be replaced, that means surgery... because I will be damned if I'm going to let them fuck with this thing and I'm awake - and an emergency notwithstanding.

Who would have thought that it's not the cancer that's causing me the most problems?

[Lucky 61]

Murphy never sleeps! Sending my best mojo your way!!

[Warren63]

I'm glad your okay, i had mine in 2010. Had to remove the old prostate. Put a bad four year dent in our sex life. But my wife still loves me. She would love to see a guy with a nice cock give me a good ass fuck!😘

[KDaddy23]

Met with the ENT doctor about my tracheostomy and one of the major things we discussed was a replacement for the trach I have installed. First, he asked how long I had it and we told him; then he asked if it had been changed out, to which we both said no. My lady tells him about some stuff about the trach and how the one I have installed isn't a match for any of the replacements she was sent. He takes a good look at mine and asks if the hospital sent me home with the same device I had installed - and they didn't. We talk about the coughing and secretions and, duh, they're both due to the fact that I've got a foreign object in my throat... and of a size and type I don't need now. The one I have installed is a #8; he says that a #6 is what I need now and should be more comfortable and cut down on the coughing.

When they put the #8 in, it was the right device for the situation at hand as it has a piece needed for being on a ventilator.

Problem was that they don't keep them in their offices; they had to order it from the people we get my supplies from, who will let us know that it's been shipped, and when we get it, get an appointment so the doctor can change out my trach. While I'm awake. We thought that the changeout was a surgical procedure but, ha-ha, apparently not. He also said that this will be a good chance for my lady to learn how to put one in - just in case it comes out. I glanced over at her when he said that and, yeah, that's the last thing she wants to do and some trauma I'd not want her to experience but she'll learn how to do it and hope like hell she never has to do it. The doctor did mention how amazingly good my voice sounded, which had me rolling my eyes until he revealed that some people have a tracheostomy done and their vocal chords wind up getting damaged! Knock on wood - mine aren't damaged and I really do sound the way I've always sounded.

The doctor also confirmed that the tracheostomy isn't permanent; it'll be removed after radiation treatment and depending on how much damage it does to my throat. I remain in good spirits.

[Jazminedress]

Met with the ENT doctor about my tracheostomy and one of the major things we discussed was a replacement for the trach I have installed. First, he asked how long I had it and we told him; then he asked if it had been changed out, to which we both said no. My lady tells him about some stuff about the trach and how the one I have installed isn't a match for any of the replacements she was sent. He takes a good look at mine and asks if the hospital sent me home with the same device I had installed - and they didn't. We talk about the coughing and secretions and, duh, they're both due to the fact that I've got a foreign object in my throat... and of a size and type I don't need now. The one I have installed is a #8; he says that a #6 is what I need now and should be more comfortable and cut down on the coughing.

When they put the #8 in, it was the right device for the situation at hand as it has a piece needed for being on a ventilator.

Problem was that they don't keep them in their offices; they had to order it from the people we get my supplies from, who will let us know that it's been shipped, and when we get it, get an appointment so the doctor can change out my trach. While I'm awake. We thought that the changeout was a surgical procedure but, ha-ha, apparently not. He also said that this will be a good chance for my lady to learn how to put one in - just in case it comes out. I glanced over at her when he said that and, yeah, that's the last thing she wants to do and some trauma I'd not want her to experience but she'll learn how to do it and hope like hell she never has to do it. The doctor did mention how amazingly good my voice sounded, which had me rolling my eyes until he revealed that some people have a tracheostomy done and their vocal chords wind up getting damaged! Knock on wood - mine aren't damaged and I really do sound the way I've always sounded.

The doctor also confirmed that the tracheostomy isn't permanent; it'll be removed after radiation treatment and depending on how much damage it does to my throat. I remain in good spirits.

Man, we aint getting any younger, I turned 55 and thats when shit started.................not sure your beliefs, or non beliefs. BUt please know when I say I am praying for you, I mean to send you the best wishes and hopes I can in my own way

[KDaddy23]

Thanks, Jaz. Yeah, hitting 55 and shit started happening. I'm not sure about how radiation is going to go but I am hopeful that if I can get this #8 out and the #6 in, that will take a lot of weight off of me and maybe, just maybe, I'll be able to sleep through the night.

[elian2]

(Hugs)

[Fiddlestyx]

Thanks, Jaz. Yeah, hitting 55 and shit started happening. I'm not sure about how radiation is going to go but I am hopeful that if I can get this #8 out and the #6 in, that will take a lot of weight off of me and maybe, just maybe, I'll be able to sleep through the night.
Just finally noticed this thread. Yikes, KDaddy - so sad to hear you're going through all of this! Glad to hear your spirits are still good! All the best as the treatments continue!

[KDaddy23]

Thanks, Fiddlestyx!

[Luv3wayfun]

Sending you best wishes and healing thoughts!
From talking with some friends that have (and are) going through radiation and chemo almost all of them say the most important thing is to keep a positive attitude? which we all know isn?t easy given the way you?ve been hammered left and right with all this shit you never wanted to learn.
Just know that you have people all over this rock sending love and healing thoughts to you.
Stay strong, my friend, stay strong!!!

[KDaddy23]

Tuesday, the 12th, was my last day of chemotherapy and it gave me great pleasure to ring the gong to signify that I'm done with this phase of my treatment. Tomorrow morning, I'm going to the ENT's office to have my #8 trach removed and replaced with a #6, which is smaller and should be more comfortable with less coughing and secretions. Maybe - I won't know until the deed's been done. I'm just a little freaked out that my doctor is going to replace the trach... while I'm awake.

My lady confirmed that when they put in the trach, they knocked me out right there in the emergency room and put it in so being awake and aware for the replacement is freaking me out a little. Okay, it's freaking me out a lot! And he wants to show my lady how to remove a trach and put another in - just in case mine happens to come out and it has to be put back in a damned hurry... or else. She's not looking forward to that and I don't want to put that kind of pressure on her because she's been through a lot already.

I'll let you know how the replacement went...

[elian2]

Yay, well at least one phase is finished (nuzzles)

[Jazminedress]

Tuesday, the 12th, was my last day of chemotherapy and it gave me great pleasure to ring the gong to signify that I'm done with this phase of my treatment. Tomorrow morning, I'm going to the ENT's office to have my #8 trach removed and replaced with a #6, which is smaller and should be more comfortable with less coughing and secretions. Maybe - I won't know until the deed's been done. I'm just a little freaked out that my doctor is going to replace the trach... while I'm awake.

My lady confirmed that when they put in the trach, they knocked me out right there in the emergency room and put it in so being awake and aware for the replacement is freaking me out a little. Okay, it's freaking me out a lot! And he wants to show my lady how to remove a trach and put another in - just in case mine happens to come out and it has to be put back in a damned hurry... or else. She's not looking forward to that and I don't want to put that kind of pressure on her because she's been through a lot already.

I'll let you know how the replacement went...

Honestly, they are not all that difficult, done quite a few, they will usually ask you to take a deep breath to dilate the airway, mentally, it will mess with you, but physically, shouldnt be bad

[KDaddy23]

Honestly, they are not all that difficult, done quite a few, they will usually ask you to take a deep breath to dilate the airway, mentally, it will mess with you, but physically, shouldnt be bad

I hope you're right. This thing has already been messing with me physically and mentally but I hold out hope that the replacement is going to change that.

[KDaddy23]

Well, Jaz, what he did was to... rip the bandage off. He unfastened the collar and just snatched it out! Yep, it did not feel good, but I didn't feel it when he put the new one in. I can admit that him snatching it out didn't feel as bad as I thought it was going to but it was bad enough. I'm gonna be a little sore...

[Jazminedress]

Well, Jaz, what he did was to... rip the bandage off. He unfastened the collar and just snatched it out! Yep, it did not feel good, but I didn't feel it when he put the new one in. I can admit that him snatching it out didn't feel as bad as I thought it was going to but it was bad enough. I'm gonna be a little sore...

Damn, I never would have used that technique, I always did the deep breath thing. But, to be fair, I was a Medic in the late 80's to mid 90's, so maybe he felt your apprehension and decided that was the best way to go................either way, glad it's over and you are still sharing here

[KDaddy23]

Damn, I never would have used that technique, I always did the deep breath thing. But, to be fair, I was a Medic in the late 80's to mid 90's, so maybe he felt your apprehension and decided that was the best way to go................either way, glad it's over and you are still sharing here

Maybe that's why he did it that way; I was too busy being shocked by the sudden and rapid removal to think about it. He did mention that the cuffed trachs are harder to get out because the cuff can adhere to the inside of the trachea; I felt it kinda tear away - there was some blood but not a whole lot - and then the new one was in. My lady had that "Holy shit!" look on her face when he snatched it out - and he assured her that if she had to remove the new one, it would be easier and we both said that we're not going to do anything to have to take it out - or put it back - at home. Nope. He says that when I'm done with the radiation phase of my treatment, he'll remove the trach for good; just too much of a chance that the radiation is going to mess my throat up so leaving it in just makes sense.

[Jazminedress]

Maybe that's why he did it that way; I was too busy being shocked by the sudden and rapid removal to think about it. He did mention that the cuffed trachs are harder to get out because the cuff can adhere to the inside of the trachea; I felt it kinda tear away - there was some blood but not a whole lot - and then the new one was in. My lady had that "Holy shit!" look on her face when he snatched it out - and he assured her that if she had to remove the new one, it would be easier and we both said that we're not going to do anything to have to take it out - or put it back - at home. Nope. He says that when I'm done with the radiation phase of my treatment, he'll remove the trach for good; just too much of a chance that the radiation is going to mess my throat up so leaving it in just makes sense.
sometimes being an ex medica sucks, I know whats coming

[DD788Snipe]

Glad all went well my friend. I'm sure your are much more comfortable now. I knew your ENT Doc would figure it out. I have an appt on Monday to see mine. Hopefully, that will go well. Like Jazz said you're in my daily prayers too.

[KDaddy23]

It's taking a bit of doing to adjust to the smaller device but I'm not doing the coughing that I had been doing and secretions are down; I'm not waking up in the middle of the night and coughing up a storm but I still have to find a comfortable angle to sleep in so it's still a work in progress. Thank you all for your encouragement and positivity!

[elian2]

New chastity device eh? :)

(Just kidding)

Hang in there kdaddy .. you are loved!

[DD788Snipe]

Glad all went well my friend. I'm sure your are much more comfortable now. I knew your ENT Doc would figure it out. I have an appt on Monday to see mine. Hopefully, that will go well. Like Jazz said you're in my daily prayers too.
Well good news, my ENT Doc used what I call the rubber hose up my nose (flexible fiberoptic camera). Poked around inside my mouth then gave me the all-clear. Two months ago he found a lesion on my tongue that concerned him but today there was no sign of it. So I'm still cancer-free. Two years now.

[KDaddy23]

Well good news, my ENT Doc used what I call the rubber hose up my nose (flexible fiberoptic camera). Poked around inside my mouth then gave me the all-clear. Two months ago he found a lesion on my tongue that concerned him but today there was no sign of it. So I'm still cancer-free. Two years now.

That's amazing news! I don't know about you but I hate the camera up the nose thing...

[Jazminedress]

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

[DD788Snipe]

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.

[KDaddy23]

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.

[KDaddy23]

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!

[Neonaught]

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!62067

[KDaddy23]

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!

[DD788Snipe]

620736207462075
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.

[KDaddy23]

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.

[DD788Snipe]

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.

[KDaddy23]

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.

[elian2]

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

[KDaddy23]

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.

[Jazminedress]

best wishes my friend

[Neonaught]

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

[DD788Snipe]

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.

[Neonaught]

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.

[Warren63]

Good luck sir!

[KDaddy23]

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...

[Lucky 61]

I bet having that thing out is a relief!

[elian2]

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

[DD788Snipe]

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.

[Neonaught]

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.

[KDaddy23]

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...

[elian2]

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

[KDaddy23]

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.

[elian2]

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

[KDaddy23]

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...

[elian2]

(nuzzles/hugs)

[DD788Snipe]

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

[Neonaught]

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

[KDaddy23]

Doing my best!

[elian2]

Can you tell by the snuggles that I'm glad you're here? I just loves the snuggles. Life is just better when you know you have other folks cheering for you to succeed.

[KDaddy23]

Only 7 business days after today and I'll be done with radiation. It's doing a number on my neck; my skin is burned and peeling (I do have stuff to put on it) and it's something new to me because... I've never been sunburned - and I was told that this phase of treatment is like getting a bad sunburn. My former first poly wife used to peel something fierce when we'd vacation at the beach and she'd say that it hurt like a bitch but I never had a point of reference for it... but I do now. So much going on with my mouth and throat that I don't know if it's getting "worse" or it's starting to heal some; I've been hitting the magic mouthwash I was prescribed and it does numb my mouth for maybe a half an hour - but that's a half an hour that I can swallow without my throat hurting and it's funny: If I'm lying down, it doesn't hurt to swallow but when I'm sitting up?

The fatigue hasn't been that bad; it affects me more on the mornings where I have to get up to wake the chickens up and that makes for a long day for me. Needless to say, I want these next 7 days to pass quickly so I can start to heal and I've been told that it could take months before I'm fully recovered from all of this...

[tenni]

Good to read about your journey.

[elian2]

Please hang in there kdaddy (hugs)

[DD788Snipe]

:thumbu::thumbu::thumbu::thumbu::thumbu:

[KDaddy23]

Four days left after today. My neck has been badly burned so I'm not only peeling but there's an area of my throat that looks like someone tried to cut it with a dull knife; the skin is raw and cracked and very damned painful once whatever I put on it to keep it moist gets absorbed or just dries out. My throat is still very sore but now, only on the left side and I don't know what to make of that when it was a fully blown sore throat times seven and so bad that nothing they've suggested and/or have prescribed has helped; the magic mouthwash they prescribed me has lidocaine in it and it does a great job of numbing my mouth and lips... but ain't helping the sore places in my throat.

My RO gave me a tube of silver sulfadiazine cream to put on the raw, open parts and said to keep using the super steroid on the rest of my neck (and at night) and it seems to me that they can't seem to make up their minds what stuff is going to consistently work on my radiation induced sunburn, from good old Vaseline to the jar of Aquaphor they told me to get yesterday. I still have my CeraVe and Eucerin lotions that, up to this point in things, were both working well to keep my skin hydrated... and I feel like my skin is very confused at this point.

The team is already making their follow-up appointments for once I'm officially done with radiation; I was supposed to have my last chemo adjunct on Monday but a key blood value was .02 too low for me to be infused and I was told that if they infused me, it would totally wipe out my immune system and leave me wide open to only God know what; there was no make-up date scheduled so I'm officially done with that.

With my throat feeling like it's being ripped out, the wisdom of keeping my feeding tube becomes quite apparent - and my lady and I figured the team would say it has to stay before they said it has to stay; I think she gets a mad doctor kick out of pouring the nutritional stuff into the syringe, but she won't admit it. I can't wait for my last day so I can ring the bell; I can't wait for my throat to heal up enough so I can get back to eating real food - and I can't wait for my sense of taste to return so I can taste the real food I seriously want to get back to eating. It sucks being able to smell whatever my lady's is having to eat... and knowing that I can't taste it; this is similar to having a bad head cold and one that messes with your nose and, in turn, messes with your ability to taste stuff... without the bad head cold and stuffy nose.

[elian2]

I'm glad you're almost through with it, that's great to hear!

[Grumpygrandpa]

Lost my voice to tumor that surrounded my larynx. They took my voice and thyroid 16 years ago. With determination and damn good Dr.s you'll come through. I think I'm doing OK for being over 70. Sometimes strangers offer the best without looking for recognition. Be well.

[Neonaught]

I had much the same experience and tried like hell to avoid the feeding tube. Now I am glad I got it. As for the neck burns, you using about everything under the sun but I'd still recommend split Aloe Vera leaf rubbed directly on the burns a couple of times a day. Your sense of taste will return and pretty quickly but you may develop a taste for thing you once didn't care for. Prior to treatment I really didn't like spicy hot foods but afterward I love them. Hang tough buddy! The finish line is in sight!

[Grumpygrandpa]

You're right Neo, lost the taste for spicy foods. I think the feeding tube irritated the lining of my stomach. Still like most everything else though.

[KDaddy23]

The silver sulfadiazine cream did the job they said it would and healed the skin around my neck. I rang the shit out of the bell and kept my mask, too! Four days later, I can't say that I'm feeling any better - and not that I expected to. Got tube fed last night and... threw it all up, hacking and coughing for almost an hour before things calmed down enough for me to get my ass into bed. Not long after the feeding was done, I felt a little queasy - nothing to be concerned about and the feeling didn't get worse - but I coughed and that got the vomit train off and running.

I think it's odd that my throat seems to be irritated in a very similar way to when I had my trach in; I'm coughing in a way I remember all too well when I had the trach in and I'm guessing that the radiation has burned my throat in almost the same place; I'll have to drop my RO a note on the portal to find out if I'm right or not. Otherwise, it does feel good to not have to get up and drag my ass tol radiation every day while putting up with being stuck in the back of my hand once a week although I maintain that I tolerated chemo way better than radiation...

[DD788Snipe]

The silver sulfadiazine cream did the job they said it would and healed the skin around my neck. I rang the shit out of the bell and kept my mask, too! Four days later, I can't say that I'm feeling any better - and not that I expected to. Got tube fed last night and... threw it all up, hacking and coughing for almost an hour before things calmed down enough for me to get my ass into bed. Not long after the feeding was done, I felt a little queasy - nothing to be concerned about and the feeling didn't get worse - but I coughed and that got the vomit train off and running.

I think it's odd that my throat seems to be irritated in a very similar way to when I had my trach in; I'm coughing in a way I remember all too well when I had the trach in and I'm guessing that the radiation has burned my throat in almost the same place; I'll have to drop my RO a note on the portal to find out if I'm right or not. Otherwise, it does feel good to not have to get up and drag my ass tol radiation every day while putting up with being stuck in the back of my hand once a week although I maintain that I tolerated chemo way better than radiation...
Glad you all finished. Sounds like you've had a little set back. That's to be expected. You've had your ass kicked so hard you're in the deepest part of the ditch. Takes a while to climb back out and you'll slip a time or two. It's all good my friend.

[Neonaught]

You are turning the corner. I'd expect you to see much improvement in 7 to 10 days. If allowed and you can swallow, you might try small sips of cold fluids to sooth your throat. Have they done a swallowing test on your yet?

[KDaddy23]

You are turning the corner. I'd expect you to see much improvement in 7 to 10 days. If allowed and you can swallow, you might try small sips of cold fluids to sooth your throat. Have they done a swallowing test on your yet?

I've had several of them since I was released from the hospital and "passed" all of them. I can swallow but it can be painful from the radiation burning my throat inside and out. I got the external damage 'under control' but now it's wait and see how long it's going to take my interior throat to get to healing so I can really get to eating the way they want me to eat.

[Neonaught]

I've had several of them since I was released from the hospital and "passed" all of them. I can swallow but it can be painful from the radiation burning my throat inside and out. I got the external damage 'under control' but now it's wait and see how long it's going to take my interior throat to get to healing so I can really get to eating the way they want me to eat.

Interior healing took me about 2 months if memory serves. Before then, all nutrition and meds went down the feeding tube. By the time I was just about ready to start trying to eat again my feeding tube broke! One thing to watch out for: severe constipation related to the large intake of opioids. The first time I tried to pass stool, it was impacted and getting it out took several enemas and sticking a handful of glycerin suppositories up me. Fortunately, as a medical guy, I have dug impactions out of patients in the past. I was finally able to pass a log as big around as my forearm! That's the closest I have ever come to being self-fisted!

My personal motto is "If you can't laugh; you're dead!". Fortunately, I still can laugh about that. Stay strong and don't hesitate to reach out to me for any advice I may offer. You're getting there and the finish line is approaching!

[querty]

I havent been on the site much in the last few months and am just discovering this thread. So sorry for your plight KD, but happy to see you have the upper hand and positive outcomes. Keep swinging!

[KDaddy23]

Interior healing took me about 2 months if memory serves. Before then, all nutrition and meds went down the feeding tube. By the time I was just about ready to start trying to eat again my feeding tube broke! One thing to watch out for: severe constipation related to the large intake of opioids. The first time I tried to pass stool, it was impacted and getting it out took several enemas and sticking a handful of glycerin suppositories up me. Fortunately, as a medical guy, I have dug impactions out of patients in the past. I was finally able to pass a log as big around as my forearm! That's the closest I have ever come to being self-fisted!

My personal motto is "If you can't laugh; you're dead!". Fortunately, I still can laugh about that. Stay strong and don't hesitate to reach out to me for any advice I may offer. You're getting there and the finish line is approaching!

Yeah, opioid constipation ain't fun and I know that I have to avoid it having had experienced it many years ago. My tube isn't broken but it's being replaced on Thursday, a bit of a surprise since we've been asking this group - since I got out of the hospital - when should I come in so they could check it and they were like, "Oh, sometime next year should be fine!" but didn't want to make an appointment when we called going into 2024. Come to find out, it should have been replaced back in February so now a rush to get it replaced.

Some people...

[Jazminedress]

Yeah, opioid constipation ain't fun and I know that I have to avoid it having had experienced it many years ago. My tube isn't broken but it's being replaced on Thursday, a bit of a surprise since we've been asking this group - since I got out of the hospital - when should I come in so they could check it and they were like, "Oh, sometime next year should be fine!" but didn't want to make an appointment when we called going into 2024. Come to find out, it should have been replaced back in February so now a rush to get it replaced.

Some people...

I did not know that was a thing

[KDaddy23]

I did not know that was a thing

What, opioid constipation? Yeah, it is a thing and, often, it's not pretty...

[Neonaught]

I did not know that was a thing

Tube feeding provide little or no fiber and that, coupled with the Opioids slowing down your GI mobility, you have a serious risk of impacted feces building up. My wife has the same problem when she has to use them for her steel knee acting up.

[Grumpygrandpa]

I lucked out any had my tube in for a month or so. Went up to the VA hospital the pulled it out snd put on a clear blow out patch to monitor the healing process. As for the other stuff didn't have a problem was back on solids within a month even with no teeth. Stopped at Arby's on the way back from the tube removal and had roast beef , curly fries and a soda. My late wife looked at me and said, "Really?" I only smiled and gummed everything into mush. Stay tough brother we're on you side.

[Neonaught]

Now that's dining in style! LOL When I was recovering and prior to the extensive dental work (3 years worth!) everyone kept telling me to put my food in a blender. I love to cook and what came out of that blender was an unholy mess that may have once been food! I think that drove me forward on learning to eat again!

[KDaddy23]

Tube feeding provide little or no fiber and that, coupled with the Opioids slowing down your GI mobility, you have a serious risk of impacted feces building up. My wife has the same problem when she has to use them for her steel knee acting up.

The oxycodone is on an as-needed basis - and I don't need it all that often so I'm not concerned with constipation; I might take 5mg once a week and if that, but my palliative doctor wanted me to have something on hand that's stronger than Tylenol for those moments when the neuropathic pain in my hands and feet becomes a bother.

[KDaddy23]

Now that's dining in style! LOL When I was recovering and prior to the extensive dental work (3 years worth!) everyone kept telling me to put my food in a blender. I love to cook and what came out of that blender was an unholy mess that may have once been food! I think that drove me forward on learning to eat again!

Oh, I remember them telling me that I could put food in the blender and drink it and I 86'd that idea right away; I didn't doubt that it would be nourishing but I knew what it was going to look and smell like and, oh, hell, no. I'll suffer through pissing my throat off eating regular food before I go the blender route...

[DD788Snipe]

Oh, I remember them telling me that I could put food in the blender and drink it and I 86'd that idea right away; I didn't doubt that it would be nourishing but I knew what it was going to look and smell like and, oh, hell, no. I'll suffer through pissing my throat off eating regular food before I go the blender route... I'd have to be very desperate to put my food in a blender. :eek2:
I know it's only been about a week. I didn't have to have my tube changed out. It sure motivated me to get some solid food down my scorched throat. Hated that thing hanging outta my belly. I think I begged my ENT OC to get it outta me about 6 weeks after my last treatment. I'm pretty sure I was eating mashed potatoes and gravy by 8 weeks and drinking Ensure.

[KDaddy23]

I'd have to be very desperate to put my food in a blender. :eek2:
I know it's only been about a week. I didn't have to have my tube changed out. It sure motivated me to get some solid food down my scorched throat. Hated that thing hanging outta my belly. I think I begged my ENT OC to get it outta me about 6 weeks after my last treatment. I'm pretty sure I was eating mashed potatoes and gravy by 8 weeks and drinking Ensure.

I'm pushing things as much as I can to get real food down the hatch and, no, I do not like the tube hanging out of me although, most of the time, I tend to forget it's there until it gets hung up in my T-shirt. Drinking Ensure, well, I'm pretty sick of drinking it... because I can't taste it and, just my luck, it irritates my throat just enough to kickstart a coughing fit - it doesn't take much. Just like everything else, I have to suck it up, hang in there, and do the best I can while waiting for things to heal...

[DD788Snipe]

Patients my friend, Patients. You will get there.

[Neonaught]

I'm pushing things as much as I can to get real food down the hatch and, no, I do not like the tube hanging out of me although, most of the time, I tend to forget it's there until it gets hung up in my T-shirt. Drinking Ensure, well, I'm pretty sick of drinking it... because I can't taste it and, just my luck, it irritates my throat just enough to kickstart a coughing fit - it doesn't take much. Just like everything else, I have to suck it up, hang in there, and do the best I can while waiting for things to heal...

My tube used to come apart while I was sleeping and I'd wake up in a puddle of feeding solution. It was a real pain in the ass!

[DD788Snipe]

I never had that happen. When the gastro Dr. Installed mine he put a stitch in that kept it from coming apart. Wow that sucks. The new one should be better.

[Grumpygrandpa]

When mine was in it was like a balloon. They inserted it and inflated it to seal. They taped gauze around the edges for minor leakage. I had a coil of tubing with a clamp and an adapter to take the plunger for feeding. I had to hold the tube about shoulder high release the clamp and slowly push the plunger slowly. I got adept at it . I forgot once and backwash the mess onto the recliner. That was in 08. I don't miss it a bit. When I got pissed off I'd pull out the tube and shake the end at the iffender. Stay strong brother you're not alone.

[Neonaught]

When mine was in it was like a balloon. They inserted it and inflated it to seal. They taped gauze around the edges for minor leakage. I had a coil of tubing with a clamp and an adapter to take the plunger for feeding. I had to hold the tube about shoulder high release the clamp and slowly push the plunger slowly. I got adept at it . I forgot once and backwash the mess onto the recliner. That was in 08. I don't miss it a bit. When I got pissed off I'd pull out the tube and shake the end at the iffender. Stay strong brother you're not alone.

My tube had no balloon, just a hard rubber ball at the tip. When it came time to have it removed, I'd expected them to deflate the balloon and pull the tube. Instead, the Dr just wound the tube around his hand and gave a sudden, mighty jerk! That hurt like hell and I was not very happy!

[KDaddy23]

Mine had a balloon... somewhere in my stomach. Yep, when the doc removed the old one, he deflated the balloon (and I know that because he told me) and... yanked the old one out. Yep, it hurt like hell and more so when he quickly shoved the new one in - then had the nerve to ask me if I was okay. Hell, no, I wasn't - that shit didn't feel good!

[Neonaught]

The doc who did mine didn't even warn me, he just did it. I'd have decked the bastard but didn't want to make a scene. LOL

[DD788Snipe]

I guess I was lucky. Mine had a small rubber ball and was stitched in. When it came time to remove it my gastro guy undid the stitch and pulled the tube out. He said I shit out the little rubber ball within the next 24 hours. It was simple and there was no pain. Now when he installed it that was a different story and I was awake the whole time and it was painful.

[KDaddy23]

If nothing else, I can expect to get it ripped out again (1) if I need to have it replaced or (2) it's being removed permanently...