New to throat cancer and am not sure I can do this.

Went to doctor for lump on left side of neck and was told it was most likely brachial cyst or cleft - could be removed or not but if not it would get bigger. Went to another ENT because did not like the first. Needle biopsy done and nothing difinitive found. Asked for PET Scan in case it was cancer - told no less than 1% chance it would be cancer. Asked again but not called back so I went with the removal. ENT removed alot but said it
was bigger than thought. Called later in the week and told everything looked good. Called back one week later on a thursday night by the physician and told I had stage IV cancer.

On my 2nd day 3rd week of 7 week treatment for cancer. Radiation and chemo. Can no longer swallow even water. Feeding tube and peg tube in. I don't think I can make 7 weeks. Never smoked in my life and drinking, well, holidays and usually champagne punch. I keep thinking faith will get me through but it's so painful that I'm afraid the treatment
will kill me. Told MD I couldn't do 7 weeks. Michael Douglas only did 6 and no chemo and
he shows no sign of cancer now and he drinks and smokes. Can I make the decision to
shorten treatment and will one week really make a difference in cure. It was found on the
base of my tongue on the right and not on the tonsils.

On pain meds but it does nothing. Can they do a PET scan mid treatment and see if the treatment has worked and it's gone? Won't chemo alone work? I know it's the standard treatment but we are not all the same so who is to say what is standard for one should be
for the other.

Help, I'm lost and don't know what to do. Can't sleep. Have had to sleep in a chair sitting up as seasonal allergies I'm afraid will not allow me to breathe. I've taken something called magic mouthwash but I gag and throw it up. Can't they just put me to sleep do all the treatment and wake me up at the end of 7 weeks? I know it all sounds
stupid but I just can't cope right now.

I have two wonderful children and a husband who keeps asking me if I'm going to eat something, it's like he doesn't believe it's as bad as it is. I have so many people
praying for me and people who bring food in for my family but I don't want to see anyone because it's so painful.
«1

Comments

  • nwasen
    nwasen Member Posts: 235 Member
    You CAN do it
    lilwriter
    welcome to our world. Buck up sister. You can do this! Dig deep inside yourself and find that toughness. I am 61 and somehow got thru it.
    I hated Magic mouthwash and just used baking soda and salt. Talk to your docs and have them put you in touch with someone that can help you through this. Where I went there were people who had been thru what we had (they called them coaches) and they were very helpful.
    I had 35 radiation treatments and was to have 6 chemos but ended up having 7. I can remember being mad at my chemo doc for the extra one but today, 1 year after my diagnosis I am still here and doing very well.
    My docs said they would take me to hell and then bring me back and that is kind of what it is like. We are all different in our cancers but yet the same.
    You might want to think about Ativan as it sounds like you are very anxious. I was also on anti depressants for part of my treatments.
    Think about yoga...
    I am not religious so don't know how that prayer thing works but you say you are so maybe contact the minister at your church.
    This time is about you; not your family. You need to get thru your treatments and get better so you can be with your family as a well person. I don't have a husband or kids at home so no one questioned why I didn't eat. And I didn't for a long time. My PEG tube gave me the ability to not have to even try to eat. I went for therapy about a month after my treatments ended and had someone help me to eat again. I had alot of scar tissue in my throat. Food tasted horrid and hurt. NOW it all tastes good and there is little that I can't eat.
    But take it one day at a time. Don't think so much about the future; just today. Someone sent me a long poem and what I got out of it was "this is where I am supposed to be". It became my mantra and got me thru the tough times.
    I hope your journey becomes easier for you and I am glad you finally got to a doc who got you the proper diagnosis. I went thru somewhat the same and am ever grateful that someone finally found what the problem was!!!
    Hang in there toots!
    Peace,
    Nancy aka toughcookie
    PS you might want to sign up at caringbridge.org to keep an online journal. I just read thru mine the other day. You can share with your online friends and family and they can read what you are up to without you having to repeat it time and time again.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    NANCY SAID IT BEST
    We all at one point have told ourselves "I cannot do this" but somehow all of us did do it. We did the full treatment and are 100% thankfull and glad we put ourselves through it.

    You too will find what ever motivates you personally to perservere through your treatment.

    The group here at CSN will do what we can to help you through this. You are not alone.

    Best!!

    Mike
  • ratface
    ratface Member Posts: 1,337 Member

    NANCY SAID IT BEST
    We all at one point have told ourselves "I cannot do this" but somehow all of us did do it. We did the full treatment and are 100% thankfull and glad we put ourselves through it.

    You too will find what ever motivates you personally to perservere through your treatment.

    The group here at CSN will do what we can to help you through this. You are not alone.

    Best!!

    Mike

    Your a Mom
    Which means you're a hell of a lot tougher than I am. You are the one who gets up at 3 am. and sits with the feverish child, takes them to the doctor and somehow still manages to get to work on time. Please recognize your inner strength and reach for it. You don't have to do this alone. You have family and friends who want to help and it's up to you to teach them how to do it. Tell hubby it hurts and you rather have soup or a can of liquid nutrition through that awful lifesaving tube. If the kids are young perhaps you can get a family member to move in and caretaker for the duration of treatment if your husband is at work. I had a dozen people ask if there was anything they could do and failed to ask for help. You can't afford to make that mistake. For the next 6 months everyone has to help and you have to ask. This includes children, husbands, doctors, postman, neighbors, and even pets. You are going to have a tough time but you will come out the other side!
  • nwasen
    nwasen Member Posts: 235 Member
    ratface said:

    Your a Mom
    Which means you're a hell of a lot tougher than I am. You are the one who gets up at 3 am. and sits with the feverish child, takes them to the doctor and somehow still manages to get to work on time. Please recognize your inner strength and reach for it. You don't have to do this alone. You have family and friends who want to help and it's up to you to teach them how to do it. Tell hubby it hurts and you rather have soup or a can of liquid nutrition through that awful lifesaving tube. If the kids are young perhaps you can get a family member to move in and caretaker for the duration of treatment if your husband is at work. I had a dozen people ask if there was anything they could do and failed to ask for help. You can't afford to make that mistake. For the next 6 months everyone has to help and you have to ask. This includes children, husbands, doctors, postman, neighbors, and even pets. You are going to have a tough time but you will come out the other side!

    help!
    ratface, you had alot to add..thanks.
    I am a stubborn only child who grew up wanting for nothing. My parents were both gone when I had my diagnosis and my only child cannot deal with anything remotely tough so I knew I was in this alone.....except I have hundreds of wonderful friends.
    I swallowed my false pride and reached out to many of them. I knew my treatments were going to be 80 miles from home and my radiation treatments were very early a.m. So getting someone to drive me 5 days a week for 7 weeks and with winter coming on would be almost impossible.
    Three of my friends offered me their homes in the city where I had my treatments.
    Friends took my dog for those 7 weeks, others took care of my home and my cats.
    My best friend became my durable POA
    the list goes on and on. But I reached out cos so many times people don't know what to do or say unless you tell them. If they can't or won't most will come right out and say so.
    I think cancer was a defining time in my life. It was horrific in some aspects but it was also with it's great moments and has changed me for the better.
    I am always thankful for the wonderful people in my life, some who gave more than I would have ever expected.
    Peace
    Nancy aka toughcookie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome
    Welcome to the forum.....slow down and breathe.

    You can and will do it, we all do...and you'll figure it all out.

    Have you communicated your anxiety with your MD? I'd presume you are a prime candidate for some Xanax or other anti-anxiety meds.

    You are right, where you are right now is the toughest time for the rads. Use your magic mouthwash, and pain meds to get some water and Ensure or other source of calories inside you. It doesn't have to be food, just calories to give you energy to fight and survive.

    There are no shortcuts, there are no guarantees.... You can't compare yourself to someone else going through this, each of us are different, react different, heal different and recover differently.

    You have a lot to live for and fight for....seek your family and friends for support, as well as people on here.

    Bottom line is you do what you have to do to get through it.

    Thoughts and Prayers,
    John
  • Greend
    Greend Member Posts: 678
    It is hard but you will make it
    Almost all of us have had to take this one day or even one hour at a time. We all can pronise you that the treatments WILL end at some point and you will gradually return to (almost) what you were before, your new normal. With a peg you won't starve to death as many of us almost did. For pain, tell your doctor to give you something else. There is almost no reason for unbearalble pain.

    Swallowing will eventually return.

    Hang in there and we will all be cheering for you.

    Denny
  • arndog64
    arndog64 Member Posts: 537
    Greend said:

    It is hard but you will make it
    Almost all of us have had to take this one day or even one hour at a time. We all can pronise you that the treatments WILL end at some point and you will gradually return to (almost) what you were before, your new normal. With a peg you won't starve to death as many of us almost did. For pain, tell your doctor to give you something else. There is almost no reason for unbearalble pain.

    Swallowing will eventually return.

    Hang in there and we will all be cheering for you.

    Denny

    You can do it, we are
    You can do it, we are cheering you on! *\0/* *\0/*
  • akotke
    akotke Member Posts: 37
    My heart goes out to you!
    My heart goes out to you! There were times that i begged my husband to just let me die during treatment. Times when i thought if i could just go to sleep and not wake up.....but in the end it is sooo worth it. I saw my son turn 13, an official teenager. I saw my baby girls first steps. Ive seen what an amazing husband i have been blessed with and ive grown to love those people here who have gone before me. When it got so bad i thought id never feel normal again i had a nice chat with my rad doc who told me if i wasnt gonna fight to live then why was he fighting to save me? i came in the next day dressed in camo, ready for war. I cant tell you how to find the fight in you no one can but i can say to you its there. I am praying for you. Keep coming to this site. These sweet people will see you through. Dont be too hard on your hubby, no one can understand unless they have been there. Hold on for just a little while longer!
  • osmotar
    osmotar Member Posts: 1,006
    lilwriter
    Everything that everyone has posted is true, this is the time you need to take care of yourself. I am just starting my journey, I will complete my 3rd round of a nine week cycle of chemo, sometime in Novemeber I will start radiation.Something one of my chemo nurses said has stuck with me " we can all do something for one more day", so here it is for me a day at a time. Sending you a long distance hug and a shoulder to lean on, know that this site provides some excellent advice and numerous resources to help you through.

    Blessings and Light

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    akotke said:

    My heart goes out to you!
    My heart goes out to you! There were times that i begged my husband to just let me die during treatment. Times when i thought if i could just go to sleep and not wake up.....but in the end it is sooo worth it. I saw my son turn 13, an official teenager. I saw my baby girls first steps. Ive seen what an amazing husband i have been blessed with and ive grown to love those people here who have gone before me. When it got so bad i thought id never feel normal again i had a nice chat with my rad doc who told me if i wasnt gonna fight to live then why was he fighting to save me? i came in the next day dressed in camo, ready for war. I cant tell you how to find the fight in you no one can but i can say to you its there. I am praying for you. Keep coming to this site. These sweet people will see you through. Dont be too hard on your hubby, no one can understand unless they have been there. Hold on for just a little while longer!

    Just A Little Bit Longer....
    Good post from a mom, wife and survivor to a mom, wife and the survivor that will be....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Lilwriter
    It's hard. I know. I didn't think I was going to make it through radiation either. The pain was unbearable at times. Then they couldn't control my nausea. Even with a peg tube, I lost almost 40 lbs. I was only 87 lbs at my lowest. Some suggestions, don't know if you have tried them or not.

    Magic Mouthwash. Instead of swishing and swallowing, just swish and spit it out if swallowing it makes you sick and gaggy. I completely understand that, as it has the same effect on me. At least it will help with some pain if it's in your mouth. I had bad mouth sores.

    Ask for stronger pain meds. Now is not the time to worry about not taking narcotics or being worried or scared of serious meds. Ask them about the fentanyl patch. I was on 75mcgs of fentanyl. I had liquid Roxicet for breakthrough pain. You must change the patch at the same time of day, every three days. You must remember to do that and you must not just stop that medication. You need to be weaned off. It is a potent pain killer and it should help.

    I also put prune juice through my peg tube, along with an Activia yogurt, and sweet potato or squash baby food, to stay regular. Mix with water to thin. Pain medication will slow down your intestines and that is not fun, so you want to make sure you keep stuff moving.

    If you cannot eat, that is what the peg tube is for. Just keep trying to swallow water or a few bites during the day to make sure you keep your swallowing muscles working. Make sure you get in enough calories daily through your peg tube and enough water. You will need extra calories and more water than normal because your body is under such stress. I would imagine your nutritionist has told you how many calories you are supposed to have a day? Make sure you are getting that. Keep track in a journal if you have to. I was pretty bad and I was by myself so I had to keep a journal of meds and when to change the patch and I kept track of my calories and water intake so I knew I did what I was supposed to. I would also put two days worth of canned nutrition and my jarred foods on the table and ready to go.

    You want to complete treatment and eradicate this disease so that you never go through this again. My heart goes out to you, because I honestly never thought I'd get through it, but I did.

    As far as people asking you if you are going to eat, etc. They have no clue what you are going through and it's impossible to tell them. You know what you are able to do and what you cannot. Just make sure you are getting what you need through your tube and make sure you are keeping your swallowing muscles working. He may not believe it's as bad as it is. As annoying as it is, and believe me, I found it REALLY ANNOYING, when people would just tell me to force myself to eat anyway, these people have no frame of reference. Usually, I would open up my mouth and when they would see my mouth was nothing but a huge mouth sore and wouldn't stop bleeding, they would shut up. They don't get it and God willing, they never will. My father actually had to have alot of teeth pulled and had a bad time with it and couldn't eat, had some complications, etc. He got a small peak of what it was like and he could barely handle that! I think it made him think about what I went through with a little more compassion. Men are big babies when they are ill anyway. Sorry boys. ;-)

    Try and go outside for a short walk everyday. I didn't really want to when I was at my peak, but I did feel better when I got out and got a bit of exercise. Just down our driveway to the mailbox.

    Will pray for you sweetie, be strong! You can get through this!
  • KareGiver
    KareGiver Member Posts: 301 Member

    Lilwriter
    It's hard. I know. I didn't think I was going to make it through radiation either. The pain was unbearable at times. Then they couldn't control my nausea. Even with a peg tube, I lost almost 40 lbs. I was only 87 lbs at my lowest. Some suggestions, don't know if you have tried them or not.

    Magic Mouthwash. Instead of swishing and swallowing, just swish and spit it out if swallowing it makes you sick and gaggy. I completely understand that, as it has the same effect on me. At least it will help with some pain if it's in your mouth. I had bad mouth sores.

    Ask for stronger pain meds. Now is not the time to worry about not taking narcotics or being worried or scared of serious meds. Ask them about the fentanyl patch. I was on 75mcgs of fentanyl. I had liquid Roxicet for breakthrough pain. You must change the patch at the same time of day, every three days. You must remember to do that and you must not just stop that medication. You need to be weaned off. It is a potent pain killer and it should help.

    I also put prune juice through my peg tube, along with an Activia yogurt, and sweet potato or squash baby food, to stay regular. Mix with water to thin. Pain medication will slow down your intestines and that is not fun, so you want to make sure you keep stuff moving.

    If you cannot eat, that is what the peg tube is for. Just keep trying to swallow water or a few bites during the day to make sure you keep your swallowing muscles working. Make sure you get in enough calories daily through your peg tube and enough water. You will need extra calories and more water than normal because your body is under such stress. I would imagine your nutritionist has told you how many calories you are supposed to have a day? Make sure you are getting that. Keep track in a journal if you have to. I was pretty bad and I was by myself so I had to keep a journal of meds and when to change the patch and I kept track of my calories and water intake so I knew I did what I was supposed to. I would also put two days worth of canned nutrition and my jarred foods on the table and ready to go.

    You want to complete treatment and eradicate this disease so that you never go through this again. My heart goes out to you, because I honestly never thought I'd get through it, but I did.

    As far as people asking you if you are going to eat, etc. They have no clue what you are going through and it's impossible to tell them. You know what you are able to do and what you cannot. Just make sure you are getting what you need through your tube and make sure you are keeping your swallowing muscles working. He may not believe it's as bad as it is. As annoying as it is, and believe me, I found it REALLY ANNOYING, when people would just tell me to force myself to eat anyway, these people have no frame of reference. Usually, I would open up my mouth and when they would see my mouth was nothing but a huge mouth sore and wouldn't stop bleeding, they would shut up. They don't get it and God willing, they never will. My father actually had to have alot of teeth pulled and had a bad time with it and couldn't eat, had some complications, etc. He got a small peak of what it was like and he could barely handle that! I think it made him think about what I went through with a little more compassion. Men are big babies when they are ill anyway. Sorry boys. ;-)

    Try and go outside for a short walk everyday. I didn't really want to when I was at my peak, but I did feel better when I got out and got a bit of exercise. Just down our driveway to the mailbox.

    Will pray for you sweetie, be strong! You can get through this!

    Lilwriter
    Reaching out to those on this site was a step in the right direction. Perfect words from strong, wonderful people. You CAN and WILL do this! Take good care...
  • Ingrid K
    Ingrid K Member Posts: 813
    KareGiver said:

    Lilwriter
    Reaching out to those on this site was a step in the right direction. Perfect words from strong, wonderful people. You CAN and WILL do this! Take good care...

    Lilwriter
    welcome. We all feel your pain. I also felt like I couldn't complete the treatment, but you somehow will find the strength. The last few weeks, I would sleep until 15 mins. b/4 we had to leave the house, quick wash-up and hop in the car, (back-seat so I could nap), go for treatment and nap all the way home and back to bed. But you CAN DO IT.. it is no picnic, but doable. Even if you do nothing else the rest of the day... right now this is your job. Hopefully you have help at home.. if NOT, now is the time to take all your friends and neighbors up on any and all offers of help. Many of the people on this board have been thru this and many more than once. They know everything there is to know -- and if not -- they know where to go for answers. Like KareGiver says above, you've taken a great first step in signing on here. If you have some downtime, go back and read some older posts. They were very encouraging to me. Sending you cyber hugs and prayers for a quick finish to your treatments.
  • gibkoch
    gibkoch Member Posts: 19
    Please hang in there lilwriter ...
    My heart aches for what you are going through. All those who responded before me say it more eloquently than me but please understand you are not alone in your journey. You can and *will* make it through this treatment, one baby step at a time. I will pray for you and your family today.

    Gib
  • Goalie
    Goalie Member Posts: 184

    Lilwriter
    It's hard. I know. I didn't think I was going to make it through radiation either. The pain was unbearable at times. Then they couldn't control my nausea. Even with a peg tube, I lost almost 40 lbs. I was only 87 lbs at my lowest. Some suggestions, don't know if you have tried them or not.

    Magic Mouthwash. Instead of swishing and swallowing, just swish and spit it out if swallowing it makes you sick and gaggy. I completely understand that, as it has the same effect on me. At least it will help with some pain if it's in your mouth. I had bad mouth sores.

    Ask for stronger pain meds. Now is not the time to worry about not taking narcotics or being worried or scared of serious meds. Ask them about the fentanyl patch. I was on 75mcgs of fentanyl. I had liquid Roxicet for breakthrough pain. You must change the patch at the same time of day, every three days. You must remember to do that and you must not just stop that medication. You need to be weaned off. It is a potent pain killer and it should help.

    I also put prune juice through my peg tube, along with an Activia yogurt, and sweet potato or squash baby food, to stay regular. Mix with water to thin. Pain medication will slow down your intestines and that is not fun, so you want to make sure you keep stuff moving.

    If you cannot eat, that is what the peg tube is for. Just keep trying to swallow water or a few bites during the day to make sure you keep your swallowing muscles working. Make sure you get in enough calories daily through your peg tube and enough water. You will need extra calories and more water than normal because your body is under such stress. I would imagine your nutritionist has told you how many calories you are supposed to have a day? Make sure you are getting that. Keep track in a journal if you have to. I was pretty bad and I was by myself so I had to keep a journal of meds and when to change the patch and I kept track of my calories and water intake so I knew I did what I was supposed to. I would also put two days worth of canned nutrition and my jarred foods on the table and ready to go.

    You want to complete treatment and eradicate this disease so that you never go through this again. My heart goes out to you, because I honestly never thought I'd get through it, but I did.

    As far as people asking you if you are going to eat, etc. They have no clue what you are going through and it's impossible to tell them. You know what you are able to do and what you cannot. Just make sure you are getting what you need through your tube and make sure you are keeping your swallowing muscles working. He may not believe it's as bad as it is. As annoying as it is, and believe me, I found it REALLY ANNOYING, when people would just tell me to force myself to eat anyway, these people have no frame of reference. Usually, I would open up my mouth and when they would see my mouth was nothing but a huge mouth sore and wouldn't stop bleeding, they would shut up. They don't get it and God willing, they never will. My father actually had to have alot of teeth pulled and had a bad time with it and couldn't eat, had some complications, etc. He got a small peak of what it was like and he could barely handle that! I think it made him think about what I went through with a little more compassion. Men are big babies when they are ill anyway. Sorry boys. ;-)

    Try and go outside for a short walk everyday. I didn't really want to when I was at my peak, but I did feel better when I got out and got a bit of exercise. Just down our driveway to the mailbox.

    Will pray for you sweetie, be strong! You can get through this!

    Wish we could send energy to you
    Hi Lil,

    We all here know exactly what this is like. This is likely the hardest thing you will ever do and, unlike childbirth which you know about, the immediate rewards are not as wonderful. But the ultimate reward is, as people pointed out, that you will see your children grow and will spend many more years with your husband and family. Balancing out the fact that this treatment is brutal (rad onc always says that H&N is the worst) is that it is ultimately very beatable.

    My own started out, like yours, as seeming to be a brachial cleft cyst and, indeed, there was a cyst there. We lost a few months in this but, once we treated it, what was inside the cyst was found to be cancer and the long road began. I had less chemo because I was just too sick to go on, but more rads as the tanning doctor likes nine weeks of it (42 sessions). Why? I don’t know but it worked. I asked him exactly the same question as you asked since my last treatment came around and after Thanksgiving when we were having company. He just explained that, no, it was necessary if I was really planning on surviving. In fact, the last couple of weeks they cut down on the overall zaps and just concentrated on one or two spots where there was a definite tumor.

    About six weeks in, I so wanted to give up. We were just to the point of looking at today and no more. Then the next day it was today and no more. You are probably to the point where you will really need to lean on others. My wife had to take off from work for the last five weeks including the first week after (everything she had saved for years) because, where I could drive to rads in the beginning or even take the metro and go to work after, by then I really couldn’t be around people in the metro and I was just not capable of controlling the car well enough to drive to daily tanning. The chemo fog and general weakness from losing 40 pounds made this dangerous. She practically carried me for the last month or so. The kids just had to take care of themselves but they are teenagers now and this was their contribution.

    I second everyone’s advice on the drugs. Get whatever you can that helps you. They will get you off of these later. I am unfortunately allergic to all of the morphines and fentanyl and proved this through a couple of weeks of vomiting with every one. But eventually we found out that the Oxys were tolerable and so used those but, in fact, the pain – except right after chemo – was not that bad. To eat, Magic Mouthwash and then the topical anesthetic applied directly to the sores made eating barely possible for about 15 mins which was all that was necessary. But I could always swallow liquids which was what saved me.

    (By the way, has anyone noticed that they changed the formula for Boost Plus? It seems to have an artificial sweetener in it now and it makes me sick. I have had to look for old stocks around town. Thanks goodness I am long past needing this for my basic sustenance as I am down to about one a day for when I just can’t make a meal.)

    This has gotten long but the message is to please stay with us. In my year on the list I have seen a number of people go through the depths of hopelessness and come out the other side. Right, Arndog? Your husband should go on the Caregivers board; it was a sanity saver for my wife (DrMary) and she would be happy to talk to him directly about what he can do.

    Big hugs from us all, Doug
  • Dav1965
    Dav1965 Member Posts: 132
    gibkoch said:

    Please hang in there lilwriter ...
    My heart aches for what you are going through. All those who responded before me say it more eloquently than me but please understand you are not alone in your journey. You can and *will* make it through this treatment, one baby step at a time. I will pray for you and your family today.

    Gib

    I was in the service
    For 10 years and i never went through anything this bad ever. You have 3 reasons to make it. Actually 4 your husband, kids, and yourself. If you are in pain tell your doctors they will adjust your pain meds. Please keep all your treatments. I missed 2 on 1 visit i could not stop throwing up enough to lay down and on the other the machine was broke.

    This is the most important decision in your life that you will probably make think long and hard about not doing it. If its squamus cell cancer thats more aggresive than hpv. I went over 7 months without drinking. Just wetting my lips and putting chapstick on them.

    They cut off 95% of my tongue and replaced it with my thigh. It was so swollen that i could not have anything by mouth for months. I had a feeding tube for8 months. I promise you it will not be easy but i promise that you can do it. If not for you then for your kids.

    Sincerely David
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Dav1965 said:

    I was in the service
    For 10 years and i never went through anything this bad ever. You have 3 reasons to make it. Actually 4 your husband, kids, and yourself. If you are in pain tell your doctors they will adjust your pain meds. Please keep all your treatments. I missed 2 on 1 visit i could not stop throwing up enough to lay down and on the other the machine was broke.

    This is the most important decision in your life that you will probably make think long and hard about not doing it. If its squamus cell cancer thats more aggresive than hpv. I went over 7 months without drinking. Just wetting my lips and putting chapstick on them.

    They cut off 95% of my tongue and replaced it with my thigh. It was so swollen that i could not have anything by mouth for months. I had a feeding tube for8 months. I promise you it will not be easy but i promise that you can do it. If not for you then for your kids.

    Sincerely David

    lilwriter
    Do not hesitate to take the amount of pain meds you need to get you thru this at an acceptable level. We all have been where you are, to varying degrees. My Onco put me on Morph at the start of week #2 when she saw what had happened to my mouth, but I was fortunate in that my recovery was a cakewalk compared to many, here. Listen- you are gonna survive this thing, as we all have. That simple little fact trumps all the anxiety that's out there, if you let it. You've got C, and that's as serious an illness as there is. Nobody says H&N is an easy battle, but it's now a battle that is won by the vast majority- and you are gonna be one of that majority. Let the Drs help you with the meds, and hold on to that little fact all the way thru this battle- that you will survive this thing, and life will again be a very good thing to experience.

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Writer
    We all have be there and I suggest you do the full treatment, what you don’t want is for the cancer to come back again. Yes it is hard but it will all be over very soon. I prayed a lot during my two treatments asking God for strength to completed them, you can do it too.

    Hang in there we are all one big family here on CSN and we welcome you to be with us.
    Hondo
  • Pam M
    Pam M Member Posts: 2,196
    Add Me to the Crowd
    of well-wishers. YOU CAN DO THIS. It is incredibly difficult, I know. The way my docs explained it, chemo alone would not work - the chemo, they said, was to beat the cancer down, and the rads would kill it. Two ways I used to cheer myself on were to say to myself "You did this yesterday - you can do it today, too" and "At least it's not _____________" and I'd fill in the blank with someone else's horror story or with my own memory of what I considered my "worst".

    On the swallowing front - maybe it's not so much that your hubby doesn't believe you as he doesn't want to believe that you are physically unable to eat at all. Many of us here got lots of "helpful" suggestions from loved ones and acquaintances - as if we weren't already trying anything and everything to be able to eat/swallow. If your docs haven't sent you to a therapist for mouth/swallowing exercises, I'd ask about it - I think I was able to eat again pretty quickly because I did jaw-stretching and swallowing exercises - even if you just open your mouth as widely as you can a few times a day, and pretend to swallow from time to time. I'm hoping your docs can help you get through the remainder of your treatment. Let us know.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Magic mouthwash
    Hey, Lilwriter

    Don't swallow the magic mouthwash, even though that is what the directions say. I just swished and spit it back out. I couldn't swallow that much lidocaine/benadryl/whatever, and live. Gargle if you can stand it. Otherwise, the longer you hold it in your mouth, the better the painkilling effect. If the swish gags you, just hold a mouthful, and then spit.

    Deb