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Our New Journey

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Thank you so much for the kind words and thoughts from you all. I call this "Our" New Journey, because my dear wife and life's mate of 40+ years is making it with me. Being a retired military family, we were fortunate enough to travel the world, we were able to see things and visit places that most people only get to read about or see on TV. We've had a great journey. Our new journey began with this diagnosis. It is a journey that neither of can control or direct, we are along for the ride whether we want to go or not. Since my diagnosis last November she has been by my side attending every doctor appointment, every lab test all the highs and the lows that come with this sort of thing. She has litterly organized my days every day for the last 90 days. She was with me during my two surgeries, one night she even talked the nurse into letting her sleep in one of the empty beds so she could stay with me. Yes this journey is one for both of us. I am trully blessed to have such a caring and loving wife to nurse me through this. The first rad treatment was uneventful (as I knew it would be). My apprehension came knowing that today I feel as though nothing is wrong and that I am healthy, and that after today that will start to change rapidly. Enourageement, prayers and examples of how you all fight this battle will be appreciated by both my wife and I. Incidently, some advice for my wife while dealing with this would also be greatly appreciated.

dx - T1 N2a MX stage IVA  SCC Primary in left tonsil p-16 positive

Left neck disection 11/1/12, bilaterial tonsillectomy 12/20/12

rads X 33 (62g I think) Placitaxcil weekly throughout rads

 

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

who will be able to offer advice to your loving wife.  Your job is to be a good patient...Laughing...down the road she's going to be pushing you to get your hydration and your nutrition....and obliging her will be the best way to do that job. 

The rad thing is really so gradual....it can take two to three weeks for your neck to start looking sunburned, and if I remember right I was still eating salsa on my eggs at 3 weeks into radiation.  Once you're in the middle of treatment you just do what you have to for that day, and put tomorrow away....it will be here soon enough.  The rad days will tick down, till we're celebrating your half way mark....then the day you enter into single digits.......and then...the countdown!!  5 - 4 - 3 - 2 - 1....OVER!!  It goes a lot faster than you'd ever imagine.  John (Skiffin) calls them "ground-hog" days....you do the same thing over and over and over...and they blend into one another.  You'll look forward to the weekends just like always....time off!!   I remember so well, being on your end of the tunnel wondering if I would actually get to the other side.....I did with the encouragement and the support of the folks here.  Their support and their experience of "what to do now"....like when my mouth got into rough shape, or when I first started using my tube....being able to come here and ask and get real answers was a blessing.

We have another friend on here who always says......"You're going to make it thru this.........so get used to the idea".....his name is Kent...and I'm sure you'll hear from him next time he's on.  He was right, and I'm passing this on to you!!

Tim6003's picture
Tim6003
Posts: 1506
Joined: Nov 2011

Welcome to you and your wife though I wish we could meet under better trems.

As for advice for your wife (caregiver).....that will come from others....all I can add is my 2 cents...if she has been with you / loved you that long and the two of you have what it appears you have which is a loving relationship / best friends ...then she will (and appears to be on that already) do whatever the heck it takes to get you better and nothing, incliding the big c, is going to stand in her way.....  :)

Whispered a prayer it all goes well and at the end of this boot camp you are stronger, wiser and healthy to keep another 40 years going my friend.

 

Best,

 

Tim

Skiffin16's picture
Skiffin16
Posts: 8284
Joined: Sep 2009

Hang on for the ride, it's going to take you to places you've never been before...

But, even though the road might suck a little along the way, the end result will give you a better appreciation of those things that are most important, and have never seemed as big before...you will re-evaluate family, friends, relationships, and priorities...

BTW, one of my favorite sayins during Tx..., "Other than having cancer, I'm in perfect health"...

Ohhhh, while I am at it start thinking in the future, and in a positive way, LOL...you sound like your winding down your life and memories... We aren't done with you yet, you just got here... And I kow our wife isn't done with you....so start thinking positive, maintain some humor, and stay very wll hydrated.

Prior military myself, welcome aboard...

John 

MarineE5's picture
MarineE5
Posts: 847
Joined: Dec 2005

PapaPaul,

First, let me thank you and your family for your Service to our Country. Secondly, it truly appears your wife has your Back. Caregivers are Angels awaiting their Wings.

I'm glad you found this board as you have already noticed, many with allot of knowledge to share, so fire away with your questions, because more then likely, someone here has experienced the same thing. I am just sorry that you have to be here at all.

Prayers outbound, just remember the words of my Senior Drill Instructor,  there are only 3 things you can't do.....1- Slam a revolving door  2- Put used toothpaste back into a used toothpaste tube  3- Strike a match on a wet bar of soap, anything else you can do.....

My Best to Both of You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 3597
Joined: May 2012

PapaPaul,

 

You did not ask to be on this journey (none of us did), but your attitude can sure direct the path.  This form of cancer is treated very successfully everyday.  Many success stories you have already met.  You need to be proactive and muster up the strength to do things (like swallowing) even when you don’t feel good.  Chose your battles wisely, don’t try to out last pain it will sap your strength, take pain meds as needed.  There are solutions and or treatments for virtually all the side effects you will go through.  Let your wife, nurses and doctors know what is going on so they can help.  If you do these little things for yourself it will pay huge dividends down the road.

 

Now prepare to be around for your next (happier) journey.

 

Best,

 

Matt

jcortney's picture
jcortney
Posts: 500
Joined: Sep 2012

Papa,

You've already gotten the best advice from some of the best people on the planet.  When I first visited this site late last year I couldn't tell the difference between my knees knocking together of someone banging on the front door; my wife and I were that frightened at at the almost incomprehensible path in front of us.  The day after tomorrow (Friday) that path comes to an end.  Three rounds of Induction Chemo, 30 Rads along with concurrent Erbitux done, over and out.

My point is that when all this started I couldn't envision getting done.  Without the folks here, helping me through the rough times, with quick really helpful suggestions on how to cope, it could have easily been a disaster.  So, I'll leave you with these tidbits that I've picked up.

1  Don't borrow tomorrow's troubles today, today's are enough to deal with.

2  Stay Hydrated- Most important and I learned the hard way.  It gets really ugly really fast when you don't pay attention to your fluids.

3  Consider a PEG tube for feeding.  A few have gotten through without one but I've heard of no-one that had one that was sorry they got it.

4  Your nurses, PA's and NP's are the key to your journey.  When they ask you how your feel.  Don't say something like "good" or "ok".  Tell them you feel like crap and where and why.  Getting in front of the symptoms makes handling them so much easier that trying to coming at them from behind.

Good Luck on your Journey,

 

Your amazing caregiver and the great folks here will get you through it.

 

Joe Cortney

Dallas, TX

fisrpotpe's picture
fisrpotpe
Posts: 1349
Joined: Aug 2010

"grab hold, it's going to be a ride of hills and valleys"  when it come down to the final "there is no hill for a climber and the two of you are big time Climbers"

 

in no order....

--- always maintain a Positive Mental Attitude

--- believe you will be fine and you will be fine

--- keep you faith no matter what

--- never, never, never give up!

--- as a man, learn to a dump your pride and accept help and ask for help from those beyond your wonderful caregiving wife

 

for your wife

--- the crying stops now, it can do nothing. ask those that visit to always remain upbeat with a smile. ask others who as what they can to send you by snail mail a card.... does not have to say anything, just the name as it will help you to know others care and are out there for you. they took the time to get, write, sign, mail the card... they must care. 

--- take care of self, with out a healthy caregiver the daily battles are much harder

Now go out there mr. Military and kick some cancer butt!!!!!!!

john 

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Again, thank you all for your words of incouragement! They are more appreciated than you will ever know! Today should have been day 2 fo rads, machine was broken so it didn't happen. Tomorow is first day of chemo. Then on to rad tx 2.

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Well I guess you can officially call me a cancer patient in full treatment now. As I mentioned earlier, my first rad was last Tuesday, Wednesday's was cancelled due to a machine failure. Today I had my first chemo treatment followed by my second rad. Things weren't as bad as I had imagined they would be during the chemo. I had no reactions to the Taxol and skated through the entire 4 hour treatment. I did have an bit of a reaction to the steroids they put me on the counteract the taxol. But they weren't bad, just a little jitteryness. I elected to forgo the feeding tube for the time being, my doctors told me that if I loose 20% of my starting body weight they will insist on me getting the tube. Not a fan of the idea, but willing to do what is necessary. My wife and I are in this battle to win it and with the support of all our friends (and the new ones being made here) I believe we will. I have lots of prayer going on for me on a daily basis. I do have one question....Generally what are the first symptoms you start to notice and about when do they start? Thank you all for being on this board and for all the great information and uplifting conversation you all share. Here's all my hopes and prayers that you all have success in your battles and continue winning for years to come.

PapaPaul and Grammy

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

a bonifide cancer patient!! Laughing  Depending on how often you have chemo, what you're looking at is nausea the first 2 to 5 days after you get it....just take your meds no matter how you're feeling at the moment (you don't have to feel sick to take anti-nausea meds)...

On the rads, taste will fail within the first couple weeks....and so will your saliva glands.  Those are the two things that are for sure...everything else depends on where exactly the rads are hitting....I started getting mouth sores the first week, but hopped on the MuGard train, and avoided them. (the first sign that you might be getting them is a sandpaper like roughness inside your mouth).  You can pretty much count on being pretty much ok the first couple of weeks.

Glad to know that even tho you don't want a feeding tube, you won't make it a mission to avoid it....I've seen more people on here with them than without.  I didn't need it during rads, and was upset when they refused to take it out after radiaiton was over...I'm glad they were wiser than me!  I ended up needing it from July till September.

p

Skiffin16's picture
Skiffin16
Posts: 8284
Joined: Sep 2009

I didn't have a PEG and did fine, everyone is different... I'm a big guy and lost a total of 42# which wasn't 20% of my body weight... But if I had been prescribed the PEG I would have gotten it. Not missing the fact that I didn't get one for sure though...

As for first symptoms from rads, pretty much as P described...

I lost taste early though as I was concurrently doing Carboplatin, so taste was pretty much gone within the first few days of rads.

The thing that I always noticed was a dry through feeling several hours after rads, and that started fairly early, even before losing saliva... Other than that the first few weeks are pretty uneventful.

JG

 

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

My CSN friends stole my thunder, and they could not have given better advice. Nice to know your wife is in battle mode also. Prayers and positive MOJO from my family tto yours.

Best

Mike

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Well I guess it's starting, I knew it would but I was hoping it would be later on. After rad today, my throat was sore and raspy, at dinner I could hardly taste anything (bummer, my wife just finished making lasagana) This eveining, there is a thickness to my saliva and it is very diffuclt to swallow. But I will gladly take this over the absence of any treatment. Thanks to you all, I know this is temporary!

Paul

CivilMatt's picture
CivilMatt
Posts: 3597
Joined: May 2012

Paul,

 

Keep swallowing and stay well hydrated.

 

Get use to no taste soon, it is part of the deal.  It just is the way it is.  Don’t be mad don’t be sad, you have bigger battles ahead of you.

 

As P51 said watch out for nausea, take your meds, stay ahead of it.

 

If you have pain, take meds, don’t be a tough guy, it is not worth it.

 

More good luck,

 

Matt

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

I don't leave the house without a bottle of water, it goes everywhere I go. My physical therapist gave me some swallowing exercises that I am required to do twice daily. They are rough but doable.

 

Paul

jcortney's picture
jcortney
Posts: 500
Joined: Sep 2012

Paul.

I'm repeating myself, and everyone else here, but it's so important that it's worth doing:

 

1.  STAY HYDRATED

2.  Stay ahead of symptoms (take nausea medicine, pain meds, constipation meds ahead of need).

3.  Talk to your team.  Make sure they know how you REALLY feel.  They have most of the fixes but aren't mind readers.

 

Good luck to you, 

 

Joe Cortney

Dallas, TX

Kent Cass
Posts: 1898
Joined: Nov 2009

Welcome to where you are, and where we have been- H&N C. I echo all of what has been said above on this thread- lotta good advice. Thing is, though there are similarities we all pretty much share, keep in mind that everybody is a little different in what they experience. My mouth condition went south fast, and my Onco started me on the strong stuff at the start of week #2, but I seemed to recover easier than many, and returned to work at a factory a month after my last rad. And some have been able to keep working thru it all. Play it as it lays, Papa, to borrow a golf saying.

And, yes, come what may. This is the big C you have, but we can all say the same. John and I go back to about the same time of treatment, and some others a lot farther back. None of us enjoyed it, but this is serious business- don't get any more serious than being in the ring with C. Keep your Drs informed on how you are physically doing, so they know when this or that extra is needed. And do keep it in the Positive- you are gonna survive this thing, so get used to it! We all survive the first round of tx, Papa, and right now the fight is on and ol' C is taking some serious punishment. You are moving forward, because you and your Drs are in the process of punching C's lights out. For me, even in  the worst of times, I was able to keep it in that Positive, and feel it did me a world of good. Just one little thought got me thru it without letting the negatives in- that little thought was "I am gonna survive this." You will-

Believe

kcass 

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

As all ways, the advice and incouragement is appreciated! The weekend was a good one, on Saturday I was able to spend some time outside working in the yard. Not a lot, just enough to stay occupied. Sunday I got to go to church and be around friends. Sometimes, it's good to be able to just forget all that is going on and act normal. My rad onc referred me to a physical therapist to help me retain my swallowing capabilities. The exercises are brutal, but with my wife coaching and pushing me, we get through them. Both the med onc and the rad onc are watching my weight closley, they insist and I agree that with to much weight loss I will get the feeding tube. I am open to anything that will get me through this and to the other side. Here's sending out good wishes and prayers for all of you. For you just starting out as I am, hang in there (if I can you can), for those who are nearing the completion of treatment Congratulations. As I have said before, this is not a journey we chose, but one that we are on, I want to be able to share what I learn along the way and be an incouragement to those that come after me.

 

PapaPaul & Grammy

Ft Worth

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Well I am almost at 25% completion. I have my 8th rad tx tomorrow and that leaves 25 more to go. It sounds worse to say 25 more, so I perefer the 25% done! I had a bout with the side effects of chemo this past weekend with things not wanting to work and all, however the over the counter remedies broke things loose in no time. Enough of that nonsence! My throat is really starting to feel odd. Hard to explane it, just kind of like I tried to swallow a mouth full of sand and it didn't go down. Then there is the sores on the inside of my lips and the sides of my tongue as well as on the roof of my mouth. I have heard that Muguard works well for preventing these issues, however when I questioned my rad onc he advised against using it because it contains an aclohol base which could cause additional pain. Please if any of you have had any experience with Muguard, let me know how it worked for you and the best way to get ahold of some if my doc won't prescribe it. My thoughts and prayers are with each and everyone of you as we trod along this journey and all that it has in store for us. I know there will be times of learning more about our selves, more about those we love and love us, and more about what strengths we all have. Remembere ISH 41;13/ our Lord is in full control, and is holding our right hand throght this detour in life.

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

and did not have ANY sores during radiation.  They started after the 3rd rad (I could feel the sandpaper like texture on the insides of my lips)...and I started MuGard immediately....all the starting sores disappeared, and I never got another.  Granted MuGard stings like crazy when you first put it in your mouth....however, within seconds you can feel it numbing your mouth...soothing the sores....If they aren't too far advanced it will get rid of them.  I would have been miserable for the first part of treatment without it. 

It just ticks me off when the Dr.'s who have NEVER had to go thru their own treatment make these off the wall assumptions....Maybe tell Dr. Radiation that since he is just assuming the alcohol in MuGard causes additional pain....since he has probably never had a reason or the opportunity to use it....that you'd like to try it anyway.  The small sting of the intial swish is a far cry from the continual, never ending pain of mouth sores.  You're getting your information on MuGard from those who have had reason and opportunity to use it.  I'm not the only one here who benefitted greatly from having it.  I didn't get mouth sores until I was on adjuvant chemo with 5FU....MuGard couldn't keep up with the mouth sores created by 5FU.....or I would have used it all thru treatment.

p

NJShore's picture
NJShore
Posts: 423
Joined: Nov 2012

It works! We asked our dentist to help us get it when the oncologist was skeptical. The following week our radiation oncologist was asking if he needed it! Fortunately he had it on day two, but it helps recover too, so it will get better once you could start using it and if you get it, try to swallow it too.. My husbands mouth was in great shape.. He couldn't swallow it - it would have helped.

Good luck,

Kari

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Hello All! The side affects are really starting to set in. The nausea, dry mouth, mouth sores and burned skin! For the skin I use large amounts of Aloe Vera 100%. For the nausea, nausea pills (not sure of what it's called, my wife handles that for me). Dry mouth, a fresh bottle of water with me 24X7. For the mouth sores magic mouthwash, however this only lasts a few short minutes. The rad nurse gave me some pain patches that work wonders for controlling the pain, but also increases my nausea to the point where the nausea pills don't work. On the bright side, I am now 1/3 the way through tx. Things are going ok, and I seem to be handling things well. My wife continues to be a constant encouragement and source of many blessings. Thanks for the advice on MuGard. I pushed my rad onc a little and he agreed to prescribe it for me. Even my insurance co agreed to pay for it. So things are progressing along. I will let you'all know how it works for me! I wish you all a Happy Valentine's Day and continued success with your's or your loved ones progress!

PapaPaul and Groovy Grammy

NJShore's picture
NJShore
Posts: 423
Joined: Nov 2012

Paul,

Glad to here you are doing pretty well considering you are under treatments.. And 1/3 of the way! Step by step you'll be done soon!

my husband is on 4 nausea meds (zofran, reglan, scopolamine patches, and pepcid), 5 weeks out of treatment. Still, I think mostly due to the pain patches, but whatever works, it's all temporary. Hopefully in the next few weeks he'll be able to start backing off.

keep drinking and eat whenever possible, you'll need those calories later..

glad to hear you are doing so well.

Kari

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

It's more of a preventative than a cure, but there's the possibility that the ones you have will heal, the Mugard will keep more from forming.  Also, for your neck...try some Calendula cream....I used the kind for babies, you can find it in the health food store....it's very healing.  I used to put Aloe 99 on my neck, let it dry, the coat it with the Calendula...only once during radiation was my neck actually painful.

Congrats on being 1/3 done....it's all in the count down, isn't it? Smile

p

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Went to take my chemo tx today, after labs were done, and I explained some symptoms I was experiencing to my med onc, was told I was dehydrated and would be receiving re-hydrating txtoday instead of chemo. Needless to say, I was feeling pretty lousy when I first arrived! After a thurough examination by the dr and about 3 hours in the infusion chair, I left feeling really good. In fact probably the best since all this started. The doc said the dehydration was a result of the pain patch I just started using, it was causing some fairly strong nausea. I thought I was drinking plenty of water (and I was except I threw most of it up within minutes).I think I will pay much more attention when I hear the words "Hydration ! Hydration! Hydration" I think each of you have mentioned that to me at least twice, and my wife at least 3 or 4 times daily. Thanks P for the tip on  Calendula for my neck. I will get a hold of some and make sure I use it (I'm allergic to pain).  Again my prayers for and well wishes to each of you as we journey on together!

 

PapaPaul and Groovy Grammy

Skiffin16's picture
Skiffin16
Posts: 8284
Joined: Sep 2009

Hydration tip...

Have your wife or you... slightly pull the loose skin on the back of your hand...

If it goes back to normal fairly quickly, like almost instantly you are probably good on fluids...

If it tents up, staying pulled and tented looking..., ummm Hydration, Hydration, Hydration...

Amazing how fast you can feel better once they run fluids through you isn't it...

But lack of for very long will put you down for the count and a few days in the hospital....

JG

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

I will do that next time I start feeling a bit poorly. Thanks for the suggestion!

 

PapaPaul

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

Half way through rads today!!!! Side effects have been rough, mouth and throat have been really sore. I was able to get ahold of some mugard and it has helped greatly! Thanks to all who so highly recommended it! The big problem now is the skin on my neck. It has begun to split and peal. Needless to say, it's quite uncomfortable. My rad onc gave me some Radia Gel to put on the burns. This has helped some. I also have a fentanyl patch for the mouth and throat pain that seems to help quite a bit as well. I've Been able to keep my weight up (only lost 1 pound over the last week) this keeps my doctors happy. That's about it for updates on me. I hope each of you are progressing well on your journeys and this finds you all in good spirits. My thoughts and prayers are with you all!

Skiffin16's picture
Skiffin16
Posts: 8284
Joined: Sep 2009

My burns never got much worse than sever sun burn and dark pealing skin....and hot showers helped slough off old skin.

But if yours gets bad, you can see about getting a script for Silvadene..., it's for burn victims and works wonders.

JG

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

That was a huge marker for me!  Day by day, step by step you're getting closer to the light at the end of the tunnel Laughing  I'm delighted to hear too, that the Mugard is working for you.....it sure helped me.....stings tho, huh, when you first put it in your mouth.

You might want to try Calendula cream on your neck, too....you can get it at the health food store.....I bought the kind for babies butts....it's very healing.  There's a presciption cream too, if your neck gets really bad.....Silver-something....John, Matt, and Tim know the name of it.....but it's used for burn victims, and I know Matt and Tim swear by it.

Thanks for the update....we needs those around here...

p

fishmanpa's picture
fishmanpa
Posts: 1197
Joined: Jan 2013

Hey there Papa P,

It's great to hear you've hit and now passed the halfway mark. As one who's about to start the journey, it's encouraging to hear you're soing Ok despite the usual side effects. Stay strong!

"T" 

groovygrammy
Posts: 6
Joined: Feb 2013

10 more days, hon, 10 more days.....I love you and I'm proud of you for your courage and perseverance. 

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

the next most exciting day was hitting the single digits....that will start on Tues, right?  Then another big WHOO HOO.....the countdown begins.....Oh, how I loved knowing each day was bringing me closer to not having to get dressed and dragged out the door every damn day....

p

jcortney's picture
jcortney
Posts: 500
Joined: Sep 2012

Papa,

Silverdene worked really well for me.  I had really bad burns completely around my neck.  The silverdene took the pain away immediately and now, after 20 days it's almost completely healed.  The challange with this med is getting the old application off so you can apply the new.  Hope this helps some.

 

Joe Cortney

Dallas, TX

PapaPaul's picture
PapaPaul
Posts: 32
Joined: Jan 2013

I am officially in the single digits. In the Air Force, when we were counting down to a move or return from deployment and we went under 10 days we were considered "single digit midgits" I know...not really a politically correct term, and if I offended anyone, please accept my sincerest appologies! But I am extremely anxious to get this finished and not have to drag myself down to the cancer center everyday. I am experiencing all the side effects everyone warned me about. Some of them worse than I thought and some not quite so bad. Guess you could say that things are as expected. The only down side was the news I got from my onc team....I've been told I need the feeding tube. The procedure will either be later this week or early next week. Imagine that, only 9 days to go to finish and I have to get the tube. Oh Well, I almost made it, however it is getting harder and harder to swallow anything now. I am barely getting 500 cals per day when I need 2000 +. And... we all know the recovery period lasts well beyond the end of treatment. I trust all is well with each you and appreciate the opportunity to learn the tricks to dealing with this thing and the treatments for cure! Take care and God Bless you all. My prayers go out for each of you daily!

phrannie51's picture
phrannie51
Posts: 4410
Joined: Mar 2012

Politically correct or not, you are now officially a single-digit-midget......YEAHHH!!  I like the name, myself...

I finished rads on June 15th, and asked that my tube be removed because I had never really used it.  They said no, not yet.  On the 3rd of July, I started using my tube, and used it almost exclusively until Sept 15th.....just saying, you're going to appreciate it once it's in.  It's a love hate relationship, however.....but so worth having.

Congrats!!

p

jcortney's picture
jcortney
Posts: 500
Joined: Sep 2012

Congrats at being almost done.  You'll be glad you have the tube as the next few weeks are possibly the most difficult.  Also, please remember that your tube can be used to hydrate.  You MUST make sure you have enough fluids.  Calories are important, fluids are critical.

Again, congrats at almost being done.  Even though I didn't feel any better, just the landmark of no more treatments (4 weeks ago for me) was a great milestone.

 

Joe Cortney

Dallas, TX

Ingrid K's picture
Ingrid K
Posts: 813
Joined: Mar 2011

PapaPaul

Do NOT consider getting a feeding tube as a failure.... I became best friends with my feeding tube, and I think I would have starved to  death without it..... what a stupid thing it would be to survive the cancer and the treatments and then to die of starvation..... that was what my doctor told me and it sure made sense.

Only 9 more and then you can concentrate on getting on with your recovery.  The tube will allow you to get the needed calories....and don't forget about protein powder.  You need protein to heal and you can mix the powder in with just water and put it thru the feeding tube.

Even though you will have the tube to use, don't stop trying to swallow....even tiny sips of water will keep the swallowing muscles strong....it's like when you don't want your engine to sieze up....same basic priniciple.  So try small sips of water, ice chips, crushed ice...whatever works.

KEEP UP THE GOOD WORK... you are almost done !!

 

Skiffin16's picture
Skiffin16
Posts: 8284
Joined: Sep 2009

Well if you are a single digit midget, you surely must be a short timer also....

As for the PEG, you do what you have to do to get through...

As for swallowing though, is that inclusive of liquids only with liquid meds before hand...?

That's pretty much all I was on for 7 - 8 weeks... Ensure Plus, water and a few sliced peaches to keep the muscles working... Of course that was bewteen a dose of liquid pain meds, and fllowed with a crushed percost in a little water for any pain to follow.

Again, congrats....

You'll be done before you know it... ~John (Jar Head)

 

hwt's picture
hwt
Posts: 2330
Joined: Jun 2012

The feeding tube is not all that bad and can be a life line but continue to keep swallowing. Like everyone else, I was warned about the weeks following tx and mine were not nearly as bad as I had anticipated. I sincerely hope the same for you. You will be looking at the roughest part of this journey in your rearview mirror within a matter of days.

Candi

STL, MO. 

NJShore's picture
NJShore
Posts: 423
Joined: Nov 2012

I know it sounds strange to hear you are doing great... when you feel so lousy, but you really have done so well this far. Doesn't hurt to have a little help with that PEG to make sure you keep doing so well. Nice to know you are so close to the end. It's really nice to wake up and know you aren't going anywhere the next day.

You are almost ready to make plans for what to do with that mask in a few short days.. :)

Did they show you how to do soaks with your neck? If not ask... they really help take the steam out of things. We had two nurses who were insistant, and it gave my husband a lot of relief.

Saying a prayer you slide right into home plate with out any more excitement than you need. :)

Kari

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