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Day 12 - Pain and what I ate today

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Wow.

The pain of the radiation is difficult to describe in qualitative terms. It hurts. A lot. The sheer intensity is unlike anything I've experienced before. I could imagine having my skin peeled and that seems to work. Every swallow is traumatic. How do you guys do this?

I discovered the joy that is magic mouthwash today. First I had a tongue that was far bigger than my mouth and too sore to do anything with other than hang it out like a too tired hound dog. The next moment I was normal. Great stuff.

Breakfast was a smoothie. I went to band practice after that (I need to ROCK dammit!). I got home around 1:30 and ate another smoothie and scrambled eggs with cheese. After that I had 12 ginger snap cookies and 2 glasses of milk (540 calories!) and it was worth every single bite. I had about 1800 calories today and I'm not done yet!

If this is how bad it gets, I'll be fine. If it gets worse, well, it will get worse and I'll still be fine. Thanks so much for all the wisdom and support here. I cannot tell you how helpful it all is. About 5 weeks to go. Roll on Good Friday!

Best,

Mick

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

It is going to get a little worse but you are going to do just fine, you have the support of your Wife and friends to help you through. Keep eating

Take care my Friend

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

it will get worse, but i am so impressed that you can still eat. amazing. it shows how varied we can all be. my second week, the roof of my mouth peeled off in the car on the way home. i am relieved you are still eating, thats great. i wish i could get that much food down now!

keep getting in those calories.

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi Mick,

I'm just ahead of you in treatments, Monday will be #15. I cannot eat anything, I tried some applesauce a few minutes ago and the burning stopped me at the first bite. I have no teeth now so chewing anything is out of the question.

This weekend has been a hard one as I was down with bad stomach and intestinal pains, but I think I figured out why, I finally read the ingredients of the canned liquid food for my PEG and I noticed that a significant portion of it is Iodine which is on the unsafe drug list for Porphyria. I started using the canned food Thursday or Friday and began feeling ill.

I'll find out Monday if there is any Iodine free that is available, if not, I don't know what I will do for nourishment. As of now I can only stand up for about 10 minutes before becoming light headed and have to sit down, I'm sure it's from lack of food.

I now have to use the Magic mouthwash at least twice a day, it does help the mouth but not the throat. The doctor gave me a bottle of straight Lidocaine but I haven't tried it yet.

I am rooting for you to continue to be able to maintain a good diet! What I'd give to be able to chew up a Ginger Snap and down a glass of milk! lol

Hang in there bud!

Mike

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Mike,

I had a PEG put in at about week 3 or so as I was losing about 7lbs a week and that was too much. Bottom line is if you change yr mind you can get a PEG in anytime. Only advice there is ensure they rug you up during the procedure as operating theatres can be very cold. I got a free dose of Pneumonia which was just what I didn't need then.

Chef, I had intolerance to the standard Tube feeds and found a Sunrider product called Vitashake. It comes as a powder and I mixed mine with Rice Milk & it did it for me. I still have one every morning on my cereal but now glad to say by mouth. If you become a member (Sunrider), it is 10% cheaper. I can't really tell you the price sorry and it was in HKD as well. Some earlier comments when I gave advice indicated it was a little expensive. They also have a similar product called NU PLUS which has the nutrients without the Calories which I sometimes take if I feel I couldn't get enough grits in for that day. Google an ye shall have all the information on it and where you can buy etc.

Both of you, hang in there, take it a day at a time. Find a way to keep the calories going in as your body needs the nutrition to help survive and fight off the beast.

Sending white light your way
Scambuster in China.

Chefdaddy
Posts: 164
Joined: Dec 2009

Thank you Scambuster I appreciate the info!

The rice milk is also a good idea, as I'm milk intolerant.

How's China these days?

Your friend

Mike

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I've been using almond milk instead of cow milk for several years now. Pacific Natural Foods makes sweetened and unsweetened, organic, and quite tasty "milk".

Pain is bad today but I can still swallow. Weight is holding.

Best,

Mick

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Keep it up, Mick.

I'm still swallowing, too - here's hoping we both can say that the whole way through.

Have to admit, ever since your earlier posts, I keep thinking "Ginger snaps - mmm". That'll be later, for me.

Have to ask - where do you get your almond milk? I tried it when I was recovering from tonsillectomy, but it's very expensive here (grocery or health food store).

One day at a time. Do well

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Ready to get this show on the road. Sick of sitting around doing nothing, waiting for tonsils to heal. I'm falling behind!

Stanford was wonderful last Thursday. Their Head/Neck Chief has said he will "Captain" my little ship, but at 3 1/2 hours away, they're going to bounce my treatment plan back up here to the central valley or the Sierra foothills. Today, I'm on a hunt for the best possible RO within a 75-mile radius of home. They are hard to come by, out in the sticks, and I'm figuring this is the most important part of the team. Stanford gave a resounding vote of no confidence for the brand-new baby RO in my home town.

Keep the information coming, guys, I'm taking notes. I'm proud to be associated with such a strong and motiviated group of individuals.

Deb L.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Pam. I get my Almond Milk from Trader Joe's. It is also sold at Whole Foods. It's more expensive than cow milk for sure, but less mucous producing. I did find it (Pacific Natural Foods Original Almond Milk) at amazon.com. Maybe it's cheaper there?

Best,

Mick

CajunEagle
Posts: 352
Joined: Oct 2009

During my treatment period, I lived off "TWO-CAL....HN" by Ross Nutrition. This 8 oz. can contains 475 calories and no iodine. I gravity drained with the syringh 1 can every 3 hours and at night used the pump which held two cans. I had to dilute this stuff with about a half cup of water for each can, cause it was sorta thick in using the peg tube. Comes in Vanilla...Chocolate...and Butterscotch (Yuk). I stuck with Vanilla only. Kept my weight fairly steady for a good 9 months. I finally get this dang tube out this week. YEAH !!!! Another thing out of the way.

Larry

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I hope the pain doesnt get any worse for you! I am not looking forward to any of this, I know I have no choice so I will do it. I am glad you are posting on here.
I have 28 days till surgery. Then how long after surgery do you start radiation/Chemo?
I drink Almond, Rice and Soy milk. All are good. I dont know if there is a tube feeding that is not dairy based. I should look into that.
Mary

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Mary.

"How long after surgery do you start radiation/Chemo?"

It's a question for your surgeon. Mine said 4-6 weeks after surgery so it depends on how quickly you heal and the extent of your surgery. Have they told you what kind (modified, selective, endoscopy) of surgery you're getting? That will have an impact on how soon the rads can start. The more intrusive the surgery, the likelihood that it will take longer to heal.

My surgery was 15 January and chemo/rad treatments started 17 February, so in my case it was pretty quick after a 5.5 hour selective neck dissection.

Best,

Mick

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Sorry, Everyone has beat me to the reality message, it gets worst, I thought the same as you did, I had the radiation to the neck, about the start of 3rd week, I started to lose weight, Congratulations on still eating, pack everything you can in, I did and lost it plus more, my neck virtual cooked, and opened up, the last week to my neck....6th I believe, they turned up the oven to broil, not sugar coating this, i was radiating some hot heat, and eating was the last ting i could do, i was trying to sit in the tub, to drink water. Everyone is different, mine was a pain in the you know what. My friend, you picked a great site for support, the people that are answering you are your best support group and friends, we been there, and know the pain you indure, you make think there is no end at the tunnel, but there is, and it will get better. I'm recouping on 5th week from radiation and chemo, and slowly eating a salad and a hot dog with a bun. I know it doesn't sound like much. to me its filet mignon. lol. my weight still hasn't come back up, I lost 40lbs, and get past gaining 5, but as long as I put some back on, I fought the tube, I know...but i made it, especially when the doctor kept on threatening me if I didn't eat he was stopping the radiation, he didn't...Hang in there, I had open sores in my mouth and tongue and was given a new mouth wash called Caphosol, it was something new that just came out, my insursance picked it up..over 500.00 but the sores in my mouth healed with in 3-5 days, this stuff was fantanstic. Take Care...There's alot of people behind you, your going to make this..Dennis

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hey Mick,

It'll get worse, but it's tolerable..you do what you have to do to get through, each day down is another day closer to being finished.

I'm not sure at what point, but I eventually just stopped eating for the most part other than maybe DelMonte Peaches in the jars, and apple sauce or yogart.

I mainly survived off of Ensure Plus, 3 - 4 cans a day, and several glasses of water. I had my solutions of either the Larry's #2 (probably similar to what you guys call Magic Mouthwash), something with a lot of numbing agents and kind of thick.

At times I'd also take a spoon full or so of the liquid hydrocodone that I had left over from the tonsils coming out. I also would take and dissolve a percocet in a little water if needed.

I usually had to do one of those variations each time, even to just drink water.

You'll figure out what works best for you from what you have stashed from the various treatments. I also had Roxanol (liquid morphine), but I couldn't stomach that. It made me sick feeling and did nothing for the pain I had.

The only other advise I can give is that unfortunately you'll still be feeling the effects for a few weeks after the radiation. But you'll be finished and eventually that will pass also.

Good Luck, wish I could offer more, but you'll make it.

John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sounds like good stuff. I just had the magic mouthwash.

Mick, just take it all in stride, and let the Drs. know if it gets a bit much. With me, at the end of week #1 the mouth sores extended to my lower lip, and I had scalding of the tongue (flesh-colored stripes running down the tongue). Would encourage you to inquire about this Caphosol stuff- might be an improvement on the MM.

As for Ensure- my feeding tube handler told me the Ensure could be used as replacement for the formula, so it is good stuff. YOU MUST GET YOUR CALORIES, to give your body the ammo to fight this battle, Mick. Our treatments aren't the same, but the totality of them is similar. John mentions his meds- with me, during the critical weeks, it was morph and ice/water, along with MM, and two 1/2-tabs of Xanax/day. That was all I could handle, and it got me thru it. Realize, Mick, that if you are able to do such as practice with your band- you are doing okay. It can get to a state of one being incapable of doing much of anything, other than struggling just to make it to the next rad, or Onco office visit. I couldn't even make it to the rads in weeks #5 and 6. Just be advised, Mick, and prepare. Our treatments differ, and I hope your's treats your functioning better than mine did.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Sorry it's been a long trying day for me I should have posted sooner. Seeing some great comments here and I know that they will help me too. The caphasol stuff I already have, and I swear it came in a little suitcase like thing. Something like 130 doses. Its 2 vials and you mix em together and swish and spit. My mouth is not bothering me bad yet but I tried this today just to give it a "wet run" if you will. This is good, very good for me any way. Also talked with radonco today and he also mentioned the magic carpet ride but didn't think I needed that until I possibly had more mouth problems. He also said, AGAIN, salt and baking soda is one of the best things to help keep the mouth healthy. Don't even know if you can handle that at this point. I gotta tell ya Mick, looks like to me you are hurting but toughing it out honorably my man. I am glad to call ya my friend here. Hang in there try to keep that tongue in your mouth and fight the good fight!!!!!

I will probably pray for you tonight whether you like it or not.

Blessing and Best Hopes
Steve

P.S. The caphasol cost Walgreens 1,987.00. Me 50.00 Some high dollar crap

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Steve, pray on my man, I take all the best thoughts I can get! You know I am thinking of and sending the California positive vibrations your way.

I tried the Caphosol and I found that the salt & soda do the same thing. I rinse my mouth at least once every hour regardless of the pain.

I only lost 1 lbs. last week. Very good considering it hurt like bloody hell. Dr said tonight that it will probably get worse but should plateau and not get worse. Just hoping the plateau is below my breaking point! Dr says I am doing "very well." He offered my morphine tonight and I may take him up on it later. The big deal, he says and most of you have said, is to stay ahead of the pain so I can stay ahead of not losing too much weight. That is my job now, according to my wife. Stay ahead of the pain.

Best,

Mick

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Guys,

I had a long stretch on the Morphine and I think it should be avoided as long as possible. I am not 100% but I think I developed a bit of dependancy as I had horrible withdrawal like symptoms when I came off it. I found Vicodin very good and good old Paracetamol.

Make sure you watch your doses as Vicodin contains paracetamol and you MUST NOT exceed the recommended dose as your liver can bust.

The other problem with Morphine is the constipation it causes. I was virtually immobile for 3-4 weeks so the problem was exacerbated as you become quite toxic when you don't eliminate.

I haven't shared this here before but after my surgery removing the tumor from my tonsil and into the throat (I was in for 10 days with very bad pain) and was on morphine and a bunch of other stuff as well as the hangover from the general anaesthetic.

When I was released I was incredibly sick (Toxic as hell and bunged up badly) and i went straight to a Colonics clinic and had a 45 minute open colonic flush. I was carried in by my two brothers but I marched out as if I had never been sick apart from being light headed. The effect was remarkable. I digress but someone might find this a useful treatment if available at a reputable clinic. It also illustrates how it's important to keep your stomach working as much as possible.

As for Mouthwash, the Hospital provided me with a rinse called Baxters which is a Salt and Soda brew. Used to neutralize the pain and stinging when I tried foods that caused pain in my mouth and unfortunately they will.

Hang there guys,
Scambuster

PS Steve, China is still OK but getting very polluted and more crowded each year as the cities swell at an alarming rate. I enjoyed the first tour 1994 to 2004. Second tour is a bit like used chewing gum. I look FWD to moving back home to OZ when I finish the projects at hand.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Mick- I do agree with Scambuster about the morph use. The stuff scared me, but did use for most of weeks #2 and 3, and #5 and 6- the worst of times. Had only minor constipation problems, but got thru that without any extra effort. The Vicodin I used in weeks #1 and 4, and then #7 and 8. I had no morph withdrawal, but that could be because of the Vicodin replacement thing. If the Vicodin takes care of things good enough for you- I would advise staying off the morph. And, remember, our treatments are different- I got all my nutrition thru the feeding tube with formula from weeks #2-8.

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Just wanted to say I am glad that you are both still feeling good enough to post. I am sending you both my continued well wishes. Keep fighting the good fight.

fbcuthguy
Posts: 15
Joined: Feb 2010

Mick-

I had treatment 14 today. The worst moment of the cycle for me so far was the day the Girl Scout brought over my Thin Mints & I couldn't eat them! I finally crushed a sleeve up in milk & forced it down just for pride's sake! I'm down about 5 pounds this week. I have PEG supplies coming tomorrow. Soup & other equally smooth things are all that's going down for me now. They tell me I'm still doing well compared to most. I'll take their word for it. I haven't had to take any real pain meds yet, so I'll call that a victory.

Keep eating. That's my goal. There are obviously several of us in this together. It helps to hear how others are doing!

Rob

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

you are doing well if you are still taking in things by mouth. make sure you get the calories in your PEG if you don't get enough in by mouth. :) no pain meds yet is pretty darn good. hope you keep doing well!

best of luck.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Rob. Bummer about the cookies. I am fortunate I guess in that my symptoms aren't too bad yet. yesterday was treatment day 13 and I do have MAJOR PAIN on swallowing and tons of mouth sores, but I do not have a PEG so I am super motivated to eat what I can. Yesterday a friend brought over animal cookies, to my wife's disappointment, but I'm eating them AND I ate 1/2 pint of B&J mint chocolate cookie AND I gained .5lbs!

I did get morphine yesterday mostly because my wife can't stand to watch me eat (lots of wincing and cursing) and she insisted. We'll see how long I can do this with little other than tylenol and motivation. My weight will be the measure.

Best,

Mick

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Hey, Mick!

Great to get an update. Your blog has been silent for a couple of days and I've missed you. I picked up a couple of boxes of Girl Scout cookies last night, along with some Haagen Dazs Mint Chip and Rocky Road to supplement the Haagen Dazs Vanilla Honey Bee already on hand. I'm wondering if "no peg" is becoming a trend. Yesterday, my ENT, Med Onco, and Rads Onco all expressed the opinion that a peg wasn't needed in my case, owing to where the radiation fields were going to fall. I'm going to email my team captain at Stanford today to see if he concurs. Chef did mention the other day something about "fentanyl lollipops" and how effective they were to quickly stop mouth and throat pain. I've already asked for them to be ordered for me, because I'd rather treat the pain directly than to apply a patch or take a pill and wait for it to kick in. Yesterday, I got my head, neck and shoulders melted and shrink-wrapped to the table underneath a mask that reminded me a lot of the upper lid of King Tut's sarcophagus. So far, still on track for the March 15 launch date.

warmly,

Deb L.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Hi Mick, I didnt know you didnt get the PEG tube. I dont really want one either though I will if the doctor says too. I dont know whats going to happen yet since I am still waiting for the surgery!!!! Last week my 6 boxes of girlscout cookies came and they are all gone now. I think I ate a good portion of them. I told everyone it might be awhile before I can eat cookies again. Since I havent eaten sweets and saturated fats in a long time they kind of made me sick to stomach but I enjoyed them while I was eating!
Deb and Mick, and Steve too, I think of you guys and want it all to go well for you.
Mary

denistd's picture
denistd
Posts: 482
Joined: Apr 2009

Mick, I left a message on your other thread. Denis

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Tommorrow will be rad 31 of 35! Today I ate solid food for the first time in a week!!
A bit of mac and cheese, and it even sort of tasted like mac and cheese. I am so grateful, I could cry.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I know how you feel - I'll be doing 29 of 35 tomorrow. Got no flavor on mac and cheese a couple weeks ago - glad you can taste it. Had 4 bites of chili tonight - I could taste it, but it burned, and my body has considered getting rid of it ever since.

One more week - good to hear. Hope is passes quickly for you.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

The name of the game is eat what ever you can eat, at the end of my treatment I lost right at 54lbs and 5 years later I have only gained back 21 of those pounds.

Take care my friend

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

you girls are getting to the home stretch. i am so glad that you can at least eat some food still. i wish the very best to you both. it was such a relief to get to the end and know that while you still have to deal with the side effects, at least they are no longer cooking you. hang in there, we are all pulling for you.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I have to second what sweet just said, I am amazed at how good you are both doing and to know you are now on your way to the finish line.

All the best to both of you.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Thanks for your encouragement. I read your messages while dreading going in to the office. I've only been working part time, and I was "let go" at work (position terminated) at the the end of Feb. Well, the DOO and second in charge realized I do several things that no one else knows how to do, so asked if I'd be willing to come in and do some things (to get them ready for an audit at the end of March), and teach the DOO and remaining office workers how to do some others. My energy levels have plummeted, and last week I only got in about 12 hours (but not getting 12 hours of wrk done - I'm much slower); I HAVE to make it in this week, but can only do a couple hours at a time. So, it helped to hear you say I'm doing well when I'm trying to get up the gumption to hit the office. I'll be finished this week at my "old" job. I haven't even applied for unemployment yet - glad I can do that online.

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