Our New Journey
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
Comments
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There are a number of caregivers on this site
who will be able to offer advice to your loving wife. Your job is to be a good patient...
...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!!
p
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Hi Papaphrannie51 said:There are a number of caregivers on this site
who will be able to offer advice to your loving wife. Your job is to be a good patient...
...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!!
p
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
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You found a good board
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
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self direct your journey
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
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The Journey...
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
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Seems Impossible, but you get there.
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
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grab hold
"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
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The race is on
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
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Welcome
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
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Yup....you're on the road now!!PapaPaul said:The race is on
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
a bonifide cancer patient!!
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
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On the Road Again...PapaPaul said:The race is on
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
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
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Its begun
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
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more MattismsPapaPaul said:Its begun
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
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
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Papa
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
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I'll say it againPapaPaul said:Its begun
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
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
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ThanksCivilMatt said:more Mattisms
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
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
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All ways appreciated
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
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25 % Done
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.
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I had great luck with Mugard...PapaPaul said:25 % Done
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.
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
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