Hello all and happy holidays!!!

I am officially back home from my moms where I have spent the last 13 days of recovery. We gathered my stuff and went straight there on my last day of treatment. I have a check up visit with radiology tuesday and at least this time they will not be torturing me. My last day as I pulled my self up off that cold, lonely table the techs looked at me and said " Mr. Nathan, we ask everyone, would you like to keep your mask?". I took a long hard stare at it and just shook my head as I couldnt speak. For the longest I wanted it but at that very moment as I looked at it something told me leave it behind, that is your past now. But anyhow, I had about 7 or 8 straight days following of terrible gagging and coughing and choking which by each day got better. I am now just on the patch itself and have recently started drinking diet sprite by mouth. The tube is still there and I am growing more and more annoyed by the daily process of the tube. I guess I just wonder when I maybe should start trying to eat again? Drinking the sprite has really soothed my sore throat from all the dry coughing and earlier the mucous that has really slowed down. I still gagg pretty bad when I try and brush my teeth so I am scared to try and eat anything yet but want the tube gone badly so I can feel somehwat normal again. 14 days tomorrow away from treatment, any enlightenment of when that end of tunnel shine may show? I hate carnations,ensure andanything with a vanilla or chocolate smell, I just want to taste a Dr. epper again damnit!

Your Friend,
Nate

Nate - It is so good to hear from you again!!! You did a very smart thing by going to your Mom's for the first couple of weeks. I'm sure it helped her, too - to have you close by so she could check on you. You are on your way, now, Nate! Everyone recovers differently but you've already seen progress with the coughing and gagging getting better. My son didn't have the tube but I'm sure someone will be along who has had more recent experience and similar to yours. Make sure and have any questions ready when you see the radiology people on Tuesday. Hope every day sees more and more positive things happening for you!

Hi Nate. So glad to see you posting. Also glad to see that you spent the holidays at your moms'. John's mucus seemed to get a lot better around week 4. He didn't eat anything by mouth until roughly week 6, it was just to painful with mouth sores etc. He never took any prescription meds for pain so who knows he might have eaten by mouth sooner if he had. He continued to drink liquids all through treatment so he never had any swallowing issues. Good luck and be patient with yourself. You have been through so much and it takes time.

Well now I am 2 weeks post treatment and still have the dry cough at times which makes me gagg because there is nothing to cough up. I still feel like there is a blockage at the back of my throat right behind my tonsils, when I do drink by mouth once I get past the back it goes down my throat pretty smooth. I brushed my teeth this morning and gagged pretty bad again, I am just hoping to feel somewhat normal again soon. I just wonder how long the gagging and frog throat will be here as well as the hot flashes I get which I heard could be my thyroid acting up. I definately do not taste anything but like I said carbonated sprite sure is heaven at the moment. Just trying to take it one day at a time, if I can just eat something and get this tube out then I may feel like riding my bike so I can get some strength back. I just dont feel right moving around alot with this stupid tube bouncing around under my shirt with all its crusty boogers around the entry. Just kind of frustrated I guess...

Your Friend,
Nate

Nate, just remember everyone is different and recovers at their own pace. You are young and that should help. John finished treatments on April 15th and the PEG came out on July 5th. The doctors wanted him to regain some of the 30 lbs he lost before they pulled it.

The better your nutrition and hydration, the quicker you will bounce back. Wanda is correct, your age will help. You need to heal which takes time. It can take up to 2 years for you to completly recover. Take enjoyment from the small advances you make. For many weeks it will be 2 steps forward and one step back. The docs say one month of recovery for every week of radiation.

As far as the tube goes, dont you use drain sponges? That makes a huge difference with the leakage. I also use a little antibiotic ointment around where the tube comes out. It helps with granulation and the drain sponges from sticking. Many people live good lives with a feeding tube. Ive ridden my bike many times while having the tube. I do know how hard it can be, Ive where you are. Soon, you will be back on the bike and move past this whole event like it never happened. Patience!

I am glad most of the throat boogers are gone which was horrible, my mom said they looked like huge worms. But now it is the dry cough that pops up for no reason and makes me gagg so hard I almost throw up. And then I have so much saliva I either have to choose to swallow it or put the towel under my face all night when I sleep. But still wake up coughing and gagging up nothing but clear spit. Going outside too long still irritates me and makes me start to sweat and get pretty hot, especially in the neck area. Just on the short drive home yesterday from my moms to our house I got really hot, and it was 36 degrees outside. The hot flashes worry me and I wonder now if it is something that will stick around forever which would complicate my job. I am hoping to make it back to work by March which I have been away since September. I guess I have 4 more weeks before I see any light at the end of the tunnel, I really hate the tube I am sorry. It just annoys me and makes me feel not human, and I just wanna cuddle with my dogs and my lady again and it is kind of tough with a foot long tube bundled up under my shirt. Hoping for good news from radiology tomorrow and oncology wednsday and maybe they will give me a hint on when I should attempt foods. I am swallowing sprite,gatorade, and water in small portions and it feels foreign but is working. And of course I do not taste anything and am guessing I wont for a very long time.

Your Friend,
NAte

Hopefully you will get some information on the hot flashes and dry cough. I had the burning throat some and the thrush medicine helped me...I am a week and 1 day out - last treatment was 12/17 - and while most of the sticky saliva is gone, nothing much else has changed. Afraid to eat...am doing a bowl of very thin chocolate pudding at the minute tho! Still have pain issues - have patch AND the hydroco. Mouth sores have pretty well healed but tongue still stings.

Glad you came through most of the tunnel...the end is way closer than the beginning now! Let us know what you find out from the Dr. and RO.

Michele in IL

Nate,

Do get a blood test for your TSH levels. It's a tad uncommon for the thyroid to show radiation damage this soon post Tx but if I have learned anything from this cancer it's anything is possible.

Also try and get used to the fact that our recovery from this Tx can easily last well over 1 year so even though you are anxious like we all were to get back to your normal life just be patient and go with the flow. You can't rush whatever your recovery time will be.

Nate,

Glad to see you posting. Don't rush it go with the flow per DavidCPA.

Take care, keep your chin up.

Connie

Hi, Nate,
You have found the best place to deal with all of the problems. OCF has been a Godsend to me. Even though I don't post as often as others, I check it out every day. I am now on thyroid meds and that seems to be helping - just saw my family Dr. today, and it's keeping the problem under control. Don't expect things to improve quickly - but, hey, you're still here, as are the rest of us. Keep your spirits up; you're not alone.

Well hello Nate! Awesome for you to come back and let everybody know how you are doing, again...on my way to work I was thinking bout ya(not a stalker! lol) and was going to contact you to ask if I could let everybody know here that you were doing OK (considering of course) but that you were feeling more able to communicate in a better mindset way than how you felt when they read the last one of your postings. So glad you did! So here's my ol' man, 4 1/2 months after his last radiation treatment and he has no meat on him but he's alive and kicking it and has done so much around the house and kept himself as busy as he could and took/and still takes naps during the day and I don't know how the heck he does it but for him I guess this is how he handles all the crap associated with this, he keeps himself busy which I think keeps his mind off the pain/hunger/soreness all that,(plus his pain meds of course!) and now yesterday he started painting my wood stairs going down the basement and the woodwork and he is ready to tear into redoing my bathroom floor...we only have 1 bathroom so I'm scared cuz if he poops out(no pun intended lol) I can't be without a potty! lol But he is going strong at 55 so Nate, I have faith! You are a young strong man you will be hugging those pups and your lady real soon! Actually "Just Do It" now! lol screw that tuby thing they won't care! Go hug em man! You need it!

I look at your post and you are my hero... you all are actually. I hope I can deal with this as gracefully as you all!

It has its ups and downs, that is promised. You can even locate several of my posts where I went off on everyone due to the mental break down the stupid disease and treatment causes. I am doing a bit better today, Oncology was really pleased with what they saw and are really wanting me to focus on maintaining my weight and getting strength back up. I then went across the hall and saw ENT and they as well were please with how my mouth looked and performed a scope and said hardly any mucositis remains in the mouth and back of the throat and should clear up fairly soon. My first post scan has been scheduled for Feb. 7th and then results on the 9th, wish me luck! As well the ENT doctor said he would rather pull the PEG a few weeks later than a few weeks too early, so me and the tube remain for another 6-8 weeks. Later guys!

Your Friend,
Nate

It is so encouraging to see your updates, Nate - and to see how well you are doing! Keep up the good progress!

Well now it has been officially 3 weeks post treatment, I am swallowing liquids pretty good and throat is feeling better. Pretty much off of pain medications as well but I just had my final battle with the damn PEG tube today. I am so sick and tired of it, I cant get water to go in now and the tube is clear as day with nothing blocking it and water just sits in the syringe. So I said screw it, taped it up and threw my carnations and ensures in the fridge and am going to try my best to consume it that way. I am just so sick of the daily grind with this damn PEG tube, I just dont understand what is going on and now has become motivation to try and chugg down my food. Thanks all, I hope david is right about the 6 week mark lol.

Nathan

Yay Nate! Very good, keep chugging. And a little secret I found out bout the tube to make sure it is clear/cleaned out. mix some meat tenderizer and water and flush the tube. it breaks up anything that may be stuck that you can't see. yes adolphs that's what we used. i bought the salt shaker one and mixed it. i forgot how much water to powder though. anybody know?

Nate,

I couldn't tolerate cold for a few weeks post Tx so don't put all that stuff in the frig just in case. Glad you're out of that dman tunnel.

You are doing well! I am still drinking the fluids as well - I finished my radiation on 12/17 and have drank all the way through but haven't been able to eat as of yet. I saw my Dr. on Monday and I still have a spot on my tongue that hasn't healed - it rests against my tooth and either is rubbing or just hasn't healed. THAT is why I can't eat yet...that is the part that hurts! On the pain meds I couldn't pinpoint the sore spot! I am off the pain patch! YES! Doing about 6-8 hours between the Hydroco so doing well but getting danged tired of Ensure. Did add chocolate milk. Juice burns sometimes...baby food burns - at least the fruit does! I have eaten a few peach slices...but even that is a stretch. :o( Getting tired of sweet liquid stuff. :o(

Michele in IL

Hey Nate! So glad to see you post!! My sister left her Ensures out on the counter and drank about 5 a day to get that darn tube out!! She hated it as much as you! Needless to say after drinking that much for 3 weeks she gained 2 lbs and they took it out(6 weeks post Rads). Something to consider.. Glad you are coming out of the tunnel now!

Bananas were tolerable early post Tx for me but any citrus fruit was off limits for a while.

Great to hear from you Nate!
Good luck with the "Cold" stuff. I had the same pitfalls David eludes to, no citrus, acidic foods, and no cold stuff. I still order my water without ice when we go out. I have improved tolerance to cold but find room temperature easier. Right out of treatment I just couldn't handle it. Sounds as though you are doing AWESOME! Keep it up...
Steve

Well I called the GI lab today and they ran me through some procedures of how to unclog the tube. I just got impatient with it and used the syringe the natural way instead of letting it gravity pull into my stomache. Needless to say I injected my carnations this morning, I just could not bare the taste of those things. I almost threw up several times trying to drink them and only managed about 1800 calories so I went to bed angry and determined. So I just injected them this morning, and enjoyed a nice cold Dr. Pepper by mouth instead. I would rather inject the ensures and carnations the rest of the way until I can eat by mouth. I can do milkshakes fine, but am wondering when I should take the next step towards soft food. Also I dont feel quite out of the tunnel yet because I am still bothered by heat flashes that make me so damn uncomfortable and just the pure fact of not chewing and swallowing yet. Thanks for your support and advice, and David, what does it feel like and how will I really notice when I am out of the tunnel. Because truthfully I still feel like I am in the tunnel but can see a small light now.

Nathan

Nate,

I likened it to waking up the morning when you just feel like the cold you've had for 2 weeks is finally going away. I didn't feel that much better but I just felt like something was different. Even then you will have good days and bad days but eventually the bad days will finally give ways to just the good days at least that was my experience.

Hi Nate. Healing from all this takes a long........time. Everyone is different but John didn't start eating "soft foods" by mouth until around 6 - 8 weeks out of treatments. He couldn't drink those liquid foods, they made him throw-up. He did drink liquids such as water and juice by mouth every day but his mouth was to beat up with mouth sores and tongue sores to eat "real" food.

John never had a "coming out of the tunnel" feeling. He just started having more good days then bad days. John's recovery was long and he didn't have daily changes or was more weekly changes.

Be patient with yourself, you have been through so much.

How was the Dr Pepper by the way Nate? Did it taste the same to you and not let you down like you thought it would? Well...for Ron he was always on the go. He may have been in pain and hurting but he was always doing something to keep himself busy so I only knew he was getting better by the less time he was in bed sleeping, even though to this day he usually does take a nap daily. BUT now I found out that he is able to swallow better now cuz the swelling he said has gone down and for the past 2 days he has been eating Chili and crackers WITHOUT blending it!! He just chops up the beans and meat a bit and his last day of Rad was 8/16/10 BUT he has Thrush real bad but he wants his damn chili so bad he is tolerating the pain from the thrush AND today he is going to the docs to get that shit taken care of finally and once he is done with that he said he wants to eat so much til he throws up! lol ewww. Day by day Nate.