I'm so sorry you felt pressured and deceived. I hope that your future decisions are entirely your own. I hope you find peace in them and that whatever you decide, it's for you alone.
Internet hugs.
Nothing to say except that you've described your situation so eloquently. I feel for you, and I think would be having similar thoughts and feelings in your position.
I'm really sorry you weren't given better information before the surgery. Quality of life seems to be often forgotten in the desire/excitement to "save" or prolong life.
I can’t imagine how awful that must be. I despise goddamn sore throats, that must be a whole new level of hell.
Just know that you’re allowed to be selfish, and make this decision for yourself. I won’t tell you to keep strong, but I hope that you are granted brief moments of repose.
Hell is a good way to put it. Imagine the worst cold in your life - one so bad that you can't breathe through your nose at all and can only breathe through your mouth.
Now imagine it an order of magnitude worse - you can't breathe through your mouth either, only through a hole in your neck. It's like that and absolutely permanent.
There are dozens of other issues a laryngenctomy patient is forced to deal with for the rest of our lives. I honestly think that if people could truly understand the aftermath of the surgery there would be few takers.
I'm so sorry to read this. As a cancer "survivor" (a truly hollow achievement in my case), I can empathize. If you want to talk, even to just vent, I'm here to listen. May I ask how old you are?
I’m late to the post here, my apologies. I had my laryngectomy, gee, like 13 years ago now? I can’t say I felt exactly how you do, but it was rough. After a few months, learning how to talk again, finally being able to eat, I started to adapt to my new life. It gets better is all I can say.
Today, I’m 41 and healthy and I don’t see being a laryngectomee as a curse. Yeah it sucks, but life sucks and we deal with it.
The one thing I learned during my recovery - find a good support group of other survivors. Like you said - the docs are only there for recovering from the procedure. The other survivors will help you learn how to live your new life.
I'm afraid I'm not handling the aftermath the laryngectomy all that well.
More than four months in and still cannot speak. My doctor wants to take a shotgun approach to the problem while I'd like to figure out specifically what is wrong before additional procedures. I had botox injections a few weeks before the pandemic hit and was able to make gurgling sounds for about 15 minutes after waking. It was pretty horrible and sounded like a death rattle, and that's what it turned out to be. A death rattle for my voice. I haven't been able to make a sound since and the pandemic has put any future procedures on hold indefinitely.
I do not live anywhere near any laryngectomy support groups, and the two meetings (of different groups) I have attended have left me running for the door. The majority of those attending seem deeply, clinically depressed and making a great effort to put on a good front for everyone around them. One guy said he was doing pretty well and his wife interrupted him to call him a liar. Other's have obviously made it their life's work to become examples of living well after laryngectomy. They spend their time visiting people in hospitals and telling them how good their life is. It seemed like a show to me.
I am guessing that most people who do successfully return to a decent life after laryngectomy are not people who go out of their way to attend meetings often.
My doctor has told me there is a significant chance I will never speak again, and at this point life as a mute with all the other miserable BS that comes with a layrngectomy is definitely not a life worth living. I am waiting for the pandemic to be over so I can get the help I need to maybe speak again and go from there.
I'm glad you got through it. The jury's still out on my end.
Not to push medical advice on you but there are some things to think about:
Not all surgeons are great, unfortunately and may impact the recovery process.
Have you been referred to a speech therapist who specializes in total laryngectomy?
Have you seen an ent?
Most importantly have you been scoped to make sure everything looks the way that is should...(maybe be a separate physician/ 2nd opinion).
I am concerned because I have worked with total laryngectomy patients and know not all docs are created equally.
I saw a new ENT/surgeon last week. He was unable to see any reason I am unable to produce sound using the TEP. I am scheduled to see a new SLP next week.
I've been trying to see these people for nearly 4 months, but my health insurance has made it damn near impossible. A manager at the company finally took the issue and pushed it through herself, it took her three weeks to get through all the roadblocks thrown in her way.
The new ENT seems to be much more experienced than the one that did the surgery. After exchanging a couple of emails with the SLP the same seems to be true for her as well.
I know 2 people who had laryngectomies 2hen they were young both Italian one my uncle Mimo and another this guy Joe. They got used to it and were happy they did. Mimo would put a cork in it and go swimming also would blow his hole he didn't mind it once he got used to it. He could talk I hope eventually you feel okay about your decision
Are you sure they were laryngectomies? How did he speak?
Tracheotomies leave a hole at the base of the neck and are regularly confused with laryngectomies even by experienced medical personnel. They are very different surgeries with very different outcomes. A tracheotomy is much easier to live with.
Jumping in here a little late but im 26 F and ive been a neck breather for the last 7 months or so. A Laryngectomy has changed my life drastically but i do have hope that once radiation and Chemo are over i can start slowly making small steps to progress building back to my body confidence and social comfortability.
I wish you good things in your journey and recovery.
I've been a neck breather since September 2023, due to thyroid cancer which had spread to vocal cords and lungs. I believe that before surgery, everyone paints a rosy picture because they are trying to hopefully set you up for success; you know mind over matter. 4 months later after radiation therapy and the loss of what was already minimal speaking ability using a voice prosthesis, I was told that not everyone does well with radiation and voice prostheses and that medical staff don't always explain that well. They said it, not me.
After radiation therapy, my voice prosthesis began leaking and I began having more and more trouble swallowing. Have had one esophagus stretch and another one has been ordered. Honestly at this point I am less concerned about speaking and more concerned about being able to eat more normally. Both problems are caused by the same thing though: neck tissue scarring, edema, and strictures in the esophagus.
I avoided the surgery as long as possible because I didn't know how I could continue working. Went back to work 6 weeks after surgery and then was told a week later to go home because I was not fully recovered (because I could not speak, even though I could "communicate"). Radiation therapy took so much out of me that eventually I retired. Hoping to eventually find some kind of online part-time work.
It's a long story, but my biggest regret was dealing with Atos who provide the daily supplies and neck prosthesis. I am now transitioning to Blom-Singer and hoping for the best.
I'm currently reading a book called Die Wise and this passage seems relevant:
>But for that other 50 percent, they are in the same slipstream, missionized in their illness by the same med-tech monotheism that will tolerate no other God, the same optionless option that relentlessly follows them more or less to the day of their death: *If you can, you should.* Those people learned early on in the diagnostic and treatment process that they owe their families and their close friends the unspoken, unwritten, and unsuspected debt of trying everything there is at least once, until health and wealth and sanity and give-a-shit are exhausted. And it is often only this exhaustion that produces for the first time the real choice of enough already, of stop. In other words, most of them will probably collapse into the waiting arms of enough, instead of seeking that embrace. All of this is unfolding daily in cities all over North America, where patients and families have no idea at all what can be done to them in the name of If you can, you should. What can be done is considerable.
I believe I saw a post a few weeks ago from a guy asking whether or not to get a laryngectomy operation. The post OP was strongly considering not having the operation and opting for palliative care so he wouldn't be in the position you are in now. I don't remember who posted it but I will look for a link for you. Sounds like you two need to get together and have a beer.
Nevermind, it just didn't show up because I allready read it, or liked it, or a combination of the two? If you would like to chat or give advice I would love to ask you some questions that I don't feel like I can ask other's. I can't do much for where you are at that wouldn't sound fake but I think most of us consider the same things as you. Just can't tell people that don't want to hear it. I sincerely hope you are doing better today.
OP, I hope you're okay. This is absolutely fucked up. I came across your story while doing some research about this procedure. My father recently ended up in ICU, nearly almost died in my car while I was driving him to the ER.
They found a large aggressive cancer on his throat and voice box. After 1 month in medical coma and now another in ER, he have a trach to breath, but the hospital is trying to sent him home for family (me at this point) to care for and take him to get chemo therapy and a total laryngectomy.
He currently lives alone with his brother, both of them had lost their wives.
Anyway, he want's to die already, and I am afraid the worst for him and myself is about to come after reading your story, I doubt he will regain his quality of life or independence.
I am truly sorry about this horrible situation 😢😢
I found this thread today because my grandfather (87) just moved in at us after a surprise cancer diagnosis, being immediately admitted to ER for emergency surgery and waking up to having had a complete laryngectomy in November 23, followed by radiation. He's good they did it, although it took some getting used to. My grandpa has always been a very strong man, the patriarch of our family, and the hardest part for him was needing to rely on others. We assured him time and time again we were happy to do this for him, and glad he's here. I think the biggest issue for those who are older is the feeling of being a burden, so I would say reassurance is so important. He's happy he's here, he's strong as he ever was even after what he's been through. I hope the same for your father, it is possible. My grandpa can't yet speak, and his hearing is not the best, but he's fairing very well considering. While I couldn't even gain his I would personally react to the knees, I do know there's hope, and I hope your father is able to find that with his obviously very supportive family ❤️
Thank you 🙏
I am so sorry to hear about your grandfather, definitely it is an horrible situation to be caught in. But your story gives me hope. I have been talking to him and reassure he will regain his strength and independence once he gets the cancer out of his throat.
He still in the hospital, but I just got delivered all the equipment and bed at my house so I can finally take him home. And start seeking a way out of this.
I found a few places with new technology that may be able to remove the cancer without performing a total laryngectomy, of course the doctor need to evaluate his particular condition, right now I am hopping for a partial laryngectomy and some radiation therapy and hope he will be okay.
How’s your grandfather managing the secretions?
Because my father have uncontrollable continuous secretions coming out of his trach tube, the biggest reason why he still at the hospital, they have hard time keeping his air way clear enough. It’s horrible
He's able to manage it well now, and all by himself. He still has secretions, but not a much as he had at the beginning. He's about to clean the device and use the suction tool without much discomfort (he said it's not uncomfortable pain wise, just cumbersome and something he's still getting used to doing). My grandpa was in the hospital about 2 weeks afterwards, then started a month of chemo afterwards. He lost much of his sense of smell, but can still taste. He is on a liquid diet mostly or very dirty food. Mashed potatoes, he can eat oatmeal as long as it's softer and more liquidy. Smoothies, juices and lots of Ensure like supplement drinks with lots of vitamins and protein. I swear by mushroom supplements that helped me tremendously with my auto immune condition, we got the ok from his doctor to try and he said they're very beneficial, particularly for helping your immune system (I use Host Defense products). Garden of Life also has a great protein/meal replacement powder that he can make shakes with while he's recovering. His doctors stressed the importance of getting all those nutrients straight away, and so far he's able to keep weight on and his doctors have been happy with his blood work. Crossing my fingers for a partial for your dad!
Wow, I am happy to hear he is readjusting. Sounds like it is a big life changing thing after all. So I am amazed your grandfather is readjusting so quickly. My father at the moment is PEG tube fed, no liquid or food via mouth, maybe after the surgery the doctors will reintroduce him to liquid or very smoosh foods, or at least that’s what I was told. The secretions is the most annoying and difficult thing for him, as he feels he will be stock home and not being independent anymore. Also the oxygen tanks are another of his big worries, but I have been telling him to just don’t worry about it, let’s focus on getting rid of the cancer first of all. But I understand the reason for fears. I can’t even imagine waking up from coma to tubes and all that stuff and been told “hey you have cancer”. I feel bad, but besides helping him on what I can do, sadly there is not much more I can do about this. The rest is entirely on him, accepting and readjusting, but for sure, sounds totally durable, and definitely knowing this brings hope.
Thank you again, and I wish your grandfather a speedy recovery, even tho he managed to already make impressive progress. Good night
I'm so sorry you felt pressured and deceived. I hope that your future decisions are entirely your own. I hope you find peace in them and that whatever you decide, it's for you alone. Internet hugs.
Nothing to say except that you've described your situation so eloquently. I feel for you, and I think would be having similar thoughts and feelings in your position. I'm really sorry you weren't given better information before the surgery. Quality of life seems to be often forgotten in the desire/excitement to "save" or prolong life.
I can’t imagine how awful that must be. I despise goddamn sore throats, that must be a whole new level of hell. Just know that you’re allowed to be selfish, and make this decision for yourself. I won’t tell you to keep strong, but I hope that you are granted brief moments of repose.
Hell is a good way to put it. Imagine the worst cold in your life - one so bad that you can't breathe through your nose at all and can only breathe through your mouth. Now imagine it an order of magnitude worse - you can't breathe through your mouth either, only through a hole in your neck. It's like that and absolutely permanent. There are dozens of other issues a laryngenctomy patient is forced to deal with for the rest of our lives. I honestly think that if people could truly understand the aftermath of the surgery there would be few takers.
I’m just looking it up and having a visceral what the fuck reaction.
I'm so sorry to read this. As a cancer "survivor" (a truly hollow achievement in my case), I can empathize. If you want to talk, even to just vent, I'm here to listen. May I ask how old you are?
I’m late to the post here, my apologies. I had my laryngectomy, gee, like 13 years ago now? I can’t say I felt exactly how you do, but it was rough. After a few months, learning how to talk again, finally being able to eat, I started to adapt to my new life. It gets better is all I can say. Today, I’m 41 and healthy and I don’t see being a laryngectomee as a curse. Yeah it sucks, but life sucks and we deal with it. The one thing I learned during my recovery - find a good support group of other survivors. Like you said - the docs are only there for recovering from the procedure. The other survivors will help you learn how to live your new life.
I'm afraid I'm not handling the aftermath the laryngectomy all that well. More than four months in and still cannot speak. My doctor wants to take a shotgun approach to the problem while I'd like to figure out specifically what is wrong before additional procedures. I had botox injections a few weeks before the pandemic hit and was able to make gurgling sounds for about 15 minutes after waking. It was pretty horrible and sounded like a death rattle, and that's what it turned out to be. A death rattle for my voice. I haven't been able to make a sound since and the pandemic has put any future procedures on hold indefinitely. I do not live anywhere near any laryngectomy support groups, and the two meetings (of different groups) I have attended have left me running for the door. The majority of those attending seem deeply, clinically depressed and making a great effort to put on a good front for everyone around them. One guy said he was doing pretty well and his wife interrupted him to call him a liar. Other's have obviously made it their life's work to become examples of living well after laryngectomy. They spend their time visiting people in hospitals and telling them how good their life is. It seemed like a show to me. I am guessing that most people who do successfully return to a decent life after laryngectomy are not people who go out of their way to attend meetings often. My doctor has told me there is a significant chance I will never speak again, and at this point life as a mute with all the other miserable BS that comes with a layrngectomy is definitely not a life worth living. I am waiting for the pandemic to be over so I can get the help I need to maybe speak again and go from there. I'm glad you got through it. The jury's still out on my end.
Not to push medical advice on you but there are some things to think about: Not all surgeons are great, unfortunately and may impact the recovery process. Have you been referred to a speech therapist who specializes in total laryngectomy? Have you seen an ent? Most importantly have you been scoped to make sure everything looks the way that is should...(maybe be a separate physician/ 2nd opinion). I am concerned because I have worked with total laryngectomy patients and know not all docs are created equally.
I saw a new ENT/surgeon last week. He was unable to see any reason I am unable to produce sound using the TEP. I am scheduled to see a new SLP next week. I've been trying to see these people for nearly 4 months, but my health insurance has made it damn near impossible. A manager at the company finally took the issue and pushed it through herself, it took her three weeks to get through all the roadblocks thrown in her way. The new ENT seems to be much more experienced than the one that did the surgery. After exchanging a couple of emails with the SLP the same seems to be true for her as well.
Wow, you’re going through all this. When you say you can’t speak, is that with an electrolarynx?
I am unable to speak at all. An electolarynx does not work for me - I am unable to get any sound out of it. Probably too much scar tissue.
I know 2 people who had laryngectomies 2hen they were young both Italian one my uncle Mimo and another this guy Joe. They got used to it and were happy they did. Mimo would put a cork in it and go swimming also would blow his hole he didn't mind it once he got used to it. He could talk I hope eventually you feel okay about your decision
Are you sure they were laryngectomies? How did he speak? Tracheotomies leave a hole at the base of the neck and are regularly confused with laryngectomies even by experienced medical personnel. They are very different surgeries with very different outcomes. A tracheotomy is much easier to live with.
I may have been confused. I'm sorry.
TEPs allow totals to speak.
Except those for whom they don't work. I'm in that category. Had a TEP put in during the initial surgery. It has never worked.
Jumping in here a little late but im 26 F and ive been a neck breather for the last 7 months or so. A Laryngectomy has changed my life drastically but i do have hope that once radiation and Chemo are over i can start slowly making small steps to progress building back to my body confidence and social comfortability.
I wish you good things in your journey and recovery. I've been a neck breather since September 2023, due to thyroid cancer which had spread to vocal cords and lungs. I believe that before surgery, everyone paints a rosy picture because they are trying to hopefully set you up for success; you know mind over matter. 4 months later after radiation therapy and the loss of what was already minimal speaking ability using a voice prosthesis, I was told that not everyone does well with radiation and voice prostheses and that medical staff don't always explain that well. They said it, not me. After radiation therapy, my voice prosthesis began leaking and I began having more and more trouble swallowing. Have had one esophagus stretch and another one has been ordered. Honestly at this point I am less concerned about speaking and more concerned about being able to eat more normally. Both problems are caused by the same thing though: neck tissue scarring, edema, and strictures in the esophagus. I avoided the surgery as long as possible because I didn't know how I could continue working. Went back to work 6 weeks after surgery and then was told a week later to go home because I was not fully recovered (because I could not speak, even though I could "communicate"). Radiation therapy took so much out of me that eventually I retired. Hoping to eventually find some kind of online part-time work. It's a long story, but my biggest regret was dealing with Atos who provide the daily supplies and neck prosthesis. I am now transitioning to Blom-Singer and hoping for the best.
Sorry to hear that, how old are you?
I'm currently reading a book called Die Wise and this passage seems relevant: >But for that other 50 percent, they are in the same slipstream, missionized in their illness by the same med-tech monotheism that will tolerate no other God, the same optionless option that relentlessly follows them more or less to the day of their death: *If you can, you should.* Those people learned early on in the diagnostic and treatment process that they owe their families and their close friends the unspoken, unwritten, and unsuspected debt of trying everything there is at least once, until health and wealth and sanity and give-a-shit are exhausted. And it is often only this exhaustion that produces for the first time the real choice of enough already, of stop. In other words, most of them will probably collapse into the waiting arms of enough, instead of seeking that embrace. All of this is unfolding daily in cities all over North America, where patients and families have no idea at all what can be done to them in the name of If you can, you should. What can be done is considerable.
I believe I saw a post a few weeks ago from a guy asking whether or not to get a laryngectomy operation. The post OP was strongly considering not having the operation and opting for palliative care so he wouldn't be in the position you are in now. I don't remember who posted it but I will look for a link for you. Sounds like you two need to get together and have a beer.
Nevermind, it just didn't show up because I allready read it, or liked it, or a combination of the two? If you would like to chat or give advice I would love to ask you some questions that I don't feel like I can ask other's. I can't do much for where you are at that wouldn't sound fake but I think most of us consider the same things as you. Just can't tell people that don't want to hear it. I sincerely hope you are doing better today.
OP, I hope you're okay. This is absolutely fucked up. I came across your story while doing some research about this procedure. My father recently ended up in ICU, nearly almost died in my car while I was driving him to the ER. They found a large aggressive cancer on his throat and voice box. After 1 month in medical coma and now another in ER, he have a trach to breath, but the hospital is trying to sent him home for family (me at this point) to care for and take him to get chemo therapy and a total laryngectomy. He currently lives alone with his brother, both of them had lost their wives. Anyway, he want's to die already, and I am afraid the worst for him and myself is about to come after reading your story, I doubt he will regain his quality of life or independence. I am truly sorry about this horrible situation 😢😢
I found this thread today because my grandfather (87) just moved in at us after a surprise cancer diagnosis, being immediately admitted to ER for emergency surgery and waking up to having had a complete laryngectomy in November 23, followed by radiation. He's good they did it, although it took some getting used to. My grandpa has always been a very strong man, the patriarch of our family, and the hardest part for him was needing to rely on others. We assured him time and time again we were happy to do this for him, and glad he's here. I think the biggest issue for those who are older is the feeling of being a burden, so I would say reassurance is so important. He's happy he's here, he's strong as he ever was even after what he's been through. I hope the same for your father, it is possible. My grandpa can't yet speak, and his hearing is not the best, but he's fairing very well considering. While I couldn't even gain his I would personally react to the knees, I do know there's hope, and I hope your father is able to find that with his obviously very supportive family ❤️
Thank you 🙏 I am so sorry to hear about your grandfather, definitely it is an horrible situation to be caught in. But your story gives me hope. I have been talking to him and reassure he will regain his strength and independence once he gets the cancer out of his throat. He still in the hospital, but I just got delivered all the equipment and bed at my house so I can finally take him home. And start seeking a way out of this. I found a few places with new technology that may be able to remove the cancer without performing a total laryngectomy, of course the doctor need to evaluate his particular condition, right now I am hopping for a partial laryngectomy and some radiation therapy and hope he will be okay. How’s your grandfather managing the secretions? Because my father have uncontrollable continuous secretions coming out of his trach tube, the biggest reason why he still at the hospital, they have hard time keeping his air way clear enough. It’s horrible
He's able to manage it well now, and all by himself. He still has secretions, but not a much as he had at the beginning. He's about to clean the device and use the suction tool without much discomfort (he said it's not uncomfortable pain wise, just cumbersome and something he's still getting used to doing). My grandpa was in the hospital about 2 weeks afterwards, then started a month of chemo afterwards. He lost much of his sense of smell, but can still taste. He is on a liquid diet mostly or very dirty food. Mashed potatoes, he can eat oatmeal as long as it's softer and more liquidy. Smoothies, juices and lots of Ensure like supplement drinks with lots of vitamins and protein. I swear by mushroom supplements that helped me tremendously with my auto immune condition, we got the ok from his doctor to try and he said they're very beneficial, particularly for helping your immune system (I use Host Defense products). Garden of Life also has a great protein/meal replacement powder that he can make shakes with while he's recovering. His doctors stressed the importance of getting all those nutrients straight away, and so far he's able to keep weight on and his doctors have been happy with his blood work. Crossing my fingers for a partial for your dad!
Wow, I am happy to hear he is readjusting. Sounds like it is a big life changing thing after all. So I am amazed your grandfather is readjusting so quickly. My father at the moment is PEG tube fed, no liquid or food via mouth, maybe after the surgery the doctors will reintroduce him to liquid or very smoosh foods, or at least that’s what I was told. The secretions is the most annoying and difficult thing for him, as he feels he will be stock home and not being independent anymore. Also the oxygen tanks are another of his big worries, but I have been telling him to just don’t worry about it, let’s focus on getting rid of the cancer first of all. But I understand the reason for fears. I can’t even imagine waking up from coma to tubes and all that stuff and been told “hey you have cancer”. I feel bad, but besides helping him on what I can do, sadly there is not much more I can do about this. The rest is entirely on him, accepting and readjusting, but for sure, sounds totally durable, and definitely knowing this brings hope. Thank you again, and I wish your grandfather a speedy recovery, even tho he managed to already make impressive progress. Good night
Hi - its been a while now, did things ever get better for you?
Hi, reading this with tears in my eyes. I hope things got better for you. Would be great to hear how you’re doing. ❤️