DEJAVU

ditto1

Its been over a year now back in April 2012 that I introduced myself with a post "Is the Fight Worth It" and got so many uplifting responses.  I did fight it and thought I had won back in Oct when I posted NED per the Doctor reviews of the CT scan.  Since then however things have changed, my left ear started to bother me and I posted and got good replies, likely RADs, soar thoart and neck the same Rads?.  Well I then had my PET scan and it came back with a Hot Spot that cannot be determined to be cancer or not so they are planning to do a biopsy in a few weeks under anestesia.  I posted about neck dissection should that need to be and got nice replies from Marine 5, Longtime Survivor, Pam, and others which I appreciated.  So why am I posting this, because I feel I right back to "Is the Fight Worth It" i feel sad, I thought I by the Grace of God had made it thru the Chemo/Rads and although it took its toll I survived and even seem to be feeling better although had a bad bought with depression, think Im still dealing with it.   Im just not sure my body and mind could handle the neck dissection and even then Im confused, is that where the cure would come from they would remove the last bit of cancer and move on?  Im down to 130 lbs so does that mean Peg Tube?  something I was lucky not to have previously.   I do not mean to have wasted the earlier responses on previous post plus a few PM I received.  I guess Im just so SCARED AND DISAPPOINTED that my biggest fear the surgery is looming out there.  I know the saying its not cancer tell they say it is but I just have a gut feeling with the symptoms Im having and the ONC Doc said 50/50  the ENT just not great bed side manner so not sure.  I guess I just really needed to reach out to my online family for HOPE, I having a hard time manufacturing my own.    

Skiffin16

Negative Thoughts...

Get rid of them, or at least push them behind the positive...

Like you said, it's not cancer until they tell you it is.

All of the symptoms you are having are also typical of resdiual, so that's what I'm shooting for.

I know it's very hard, and I myself have went through these sames fears... Everytime I have something that persists for more than a few days makes you start doubting, letting those negative thoughts in.

It's only natural between the Dx you received and the battle of Tx that you fought....

You fought, keep fighting, keep believing that you won the battle...

BELIEVE ~ John

Vikeman10

Skiffin16 said:

Negative Thoughts...

Get rid of them, or at least push them behind the positive...

Like you said, it's not cancer until they tell you it is.

All of the symptoms you are having are also typical of resdiual, so that's what I'm shooting for.

I know it's very hard, and I myself have went through these sames fears... Everytime I have something that persists for more than a few days makes you start doubting, letting those negative thoughts in.

It's only natural between the Dx you received and the battle of Tx that you fought....

You fought, keep fighting, keep believing that you won the battle...

BELIEVE ~ John

Stay Positive

I agree with John in you got to believe. Half the battle is in the mind & those who choose to be defeated usually will be defeated. I have cancer but still believe in miracles my faith has not diminished  & I hope for the best possible outcome. You must never give up or think the worst it serves no purpose.

Randy

ditto1

Vikeman10 said:

Stay Positive

I agree with John in you got to believe. Half the battle is in the mind & those who choose to be defeated usually will be defeated. I have cancer but still believe in miracles my faith has not diminished  & I hope for the best possible outcome. You must never give up or think the worst it serves no purpose.

Randy

Thanks

Diane reminds me the same thing, I hate being negative, just seems to be part of my personality which really sucks I go round and round in my head, from positive to negitive.  I think maybe its more the potential of the surgery but will hold off on any more comments about that until its determined its necessary. 

phrannie51

Is the fight worth it??

Yup.....is a dissection worth it?....Yup.  Can your mind and body handle a dissection?...Most assuredly.  Most everyone here who has had a dissection says that was the easy part....rads and chemo was the hard part.  Now....when I was first diagnosed, I was told right off the top, that after rads and chemo....IF I happened to show a hot spot in the neck, I would be getting a dissection....it was handed over to me as "part of" the whole.....if necessary.  This is part of your original fight, it isn't a new war, just the last battle of the old one.  You've got the hard parts done.  Having said all that....there is still just AS BIG a chance that it is residual effects from rads....both the pain and the hot spot...they can't tell anything till they do the biopsy....50/50 works both ways...with even odds.  If you're going to entertain the negative 50% in your head....it's only fair that you give the positive 50% some rent free space, too.

p

  

hwt

ditto1 said:

Thanks

Diane reminds me the same thing, I hate being negative, just seems to be part of my personality which really sucks I go round and round in my head, from positive to negitive.  I think maybe its more the potential of the surgery but will hold off on any more comments about that until its determined its necessary. 

Good thoughts

Holding good thoughts for you. I think this time of year is traditionally peak for depression in many people. I know I feel like if I crack the door an inch the flood gates are going to open and the depression is going to flow in. It's hard to contain all of these feelings but also good to have a place where you can talk about them. Trying to keep up a strong front with worry on your mind is difficult. If you start to feel unusually sad, tell your doctor.  I am soon to be a year since dx, completed tx 05/2012 and of late have just begun to worry about the "what ifs" and think "will this never end"? Not sure why it's just beginning to haunt me and wear me down now. This has to be the 1st holiday in my 60 years that I actually lost another 3 pounds. There was a time that would have thrilled me. Somedays I find that I don't want to turn down the driveway because I just don't feel like being happy and I don't want to upset those that have been so good to me. Gosh darn it, sometimes we just need a good "pity party" and then let it go.  Keeping you in my prayers.

ditto1

phrannie51 said:

Is the fight worth it??

Yup.....is a dissection worth it?....Yup.  Can your mind and body handle a dissection?...Most assuredly.  Most everyone here who has had a dissection says that was the easy part....rads and chemo was the hard part.  Now....when I was first diagnosed, I was told right off the top, that after rads and chemo....IF I happened to show a hot spot in the neck, I would be getting a dissection....it was handed over to me as "part of" the whole.....if necessary.  This is part of your original fight, it isn't a new war, just the last battle of the old one.  You've got the hard parts done.  Having said all that....there is still just AS BIG a chance that it is residual effects from rads....both the pain and the hot spot...they can't tell anything till they do the biopsy....50/50 works both ways...with even odds.  If you're going to entertain the negative 50% in your head....it's only fair that you give the positive 50% some rent free space, too.

p

  

You hit it on the head

P and I appreciate your way of describing the issue and yes it may be the end of the old battle but not the beginning of a new one, I will try to take that to heart.  HWT I appreciate your comments as well I hope no one ever feels bad or sad / depressed etc. but I know others if not all of us at one time other the other have.  So as I told Diane even though Im down lately and was hoping this thing was behind me, I fought the good fight thru RADS and Chemos (with lots of support from Diane and Family) so I will fight this one to if necessary.  Again thats why I posted, I think we all know the answers and the todos and nottodos but sometimes its nice to have a little hand holding and butt kicking from those that have been there done that.  So again thankyou all.

Skiffin16

ditto1 said:

You hit it on the head

P and I appreciate your way of describing the issue and yes it may be the end of the old battle but not the beginning of a new one, I will try to take that to heart.  HWT I appreciate your comments as well I hope no one ever feels bad or sad / depressed etc. but I know others if not all of us at one time other the other have.  So as I told Diane even though Im down lately and was hoping this thing was behind me, I fought the good fight thru RADS and Chemos (with lots of support from Diane and Family) so I will fight this one to if necessary.  Again thats why I posted, I think we all know the answers and the todos and nottodos but sometimes its nice to have a little hand holding and butt kicking from those that have been there done that.  So again thankyou all.

And Another Thing...Head Slap
My comments weren't to pursuade you or encourage you not to post your feelings whether negative or positive...

Definitely post your feelings and don't keep those negative thoughts in... That is definitely not good...

So vent when needed, everyone here will lift you up and give you a slap on the back of the head when needed, or better yet, we'll let Diane do it...LOL

Head Slap

Shelley definitely knows that I need one on occasion...

Best
John

osmotar

Ditto Ditto

You ask if the fight is worth it...hmmmm you have all the right to be scared and disappointed...if not the fight you my dear Are Worth It!!!! Ditto you write about thoughts of your body being not able to handle more treatment, as before its a day at at a time , one foot in front of the other...Your H&N family is here to support you that will never change... I wear a bracelet with the word Hope on it, it was given to me , I would like to pay it forward and send it to you...if you don't mind PMing your info I'll do that..it's not much but a reminder we all have hope. 

 

Linda

VivianLee5689

osmotar said:

Ditto Ditto

You ask if the fight is worth it...hmmmm you have all the right to be scared and disappointed...if not the fight you my dear Are Worth It!!!! Ditto you write about thoughts of your body being not able to handle more treatment, as before its a day at at a time , one foot in front of the other...Your H&N family is here to support you that will never change... I wear a bracelet with the word Hope on it, it was given to me , I would like to pay it forward and send it to you...if you don't mind PMing your info I'll do that..it's not much but a reminder we all have hope. 

 

Linda

Fight

I know how you are feeling, but your life is valuable.  Your posts to me have many times helped me over the hump when I was wanting to just throw in the towel.  You are a very caring person and I would hate for you not to be here for that January 1, 2014 post.  I will pray for you for peace and resolve to fight the fight.  We really care for you.

Ingrid K

phrannie51 said:

Is the fight worth it??

Yup.....is a dissection worth it?....Yup.  Can your mind and body handle a dissection?...Most assuredly.  Most everyone here who has had a dissection says that was the easy part....rads and chemo was the hard part.  Now....when I was first diagnosed, I was told right off the top, that after rads and chemo....IF I happened to show a hot spot in the neck, I would be getting a dissection....it was handed over to me as "part of" the whole.....if necessary.  This is part of your original fight, it isn't a new war, just the last battle of the old one.  You've got the hard parts done.  Having said all that....there is still just AS BIG a chance that it is residual effects from rads....both the pain and the hot spot...they can't tell anything till they do the biopsy....50/50 works both ways...with even odds.  If you're going to entertain the negative 50% in your head....it's only fair that you give the positive 50% some rent free space, too.

p

  

Doug (Ditto)
as Phrannie says

Doug (Ditto)

as Phrannie says above, the neck dissection surgery was way way easier on me than the radiation treatments, so if I had to do it over again, I would not hesitate.  The recovery from the surgery was okay....I was talking within 48 hours and swallowing ice chips within several weeks.....I also had the partial glossectomy at the same time...so my surgery was a bit more severe. 

They did put in a PEG at the same time, and I was glad I had it.  If they offer you one, do it.  You may never use it, but if you have to it will be there.  It is good insurance.

You have been thru much worse when you went thru the radiation and chemo.  It is still major surgery, but it is doable.

As John said, put the negative thoughts aside but if you must concentrate on the negative......wish for negative biopsy results.

Praying for a good outcome.

 

CivilMatt

take a breath

Ditto 1,

 

You’ve got people holding your hand, kicking your butt and slapping you.  Tell you what if you cheer up I’ll rub your shoulders.

 

I did not have the popular neck dissection, but did have its cousin the Jugular Vein dissection to remove one cancerous lymph node that was setting up house.  The neck surgery along with tongue surgery was on par with scary compared to the rads, but with fewer side effects.  A year ago the left side of my neck and cheek were all numb, today it almost feels normal.  The surgery was fast and I always make a point in telling the anesthesiologist just how I like to go to sleep, but not too deep and I like to wake right up (works for me every time).

 

As for negative thoughts, I’ll not have them, to depressing.  When I first had cancer my mind would race  at night full to the brim with negative thoughts.  One Lorazapam later and sound asleep.  I only had to do this a few times (until “calm Matt” took over).

 

I hope you find “calm Ditto 1”.

 

Best,

 

Matt

MarineE5

Echo

Ditto,

I echo the words typed by all above. Only thing I can say is that "You Can Do This". Besides, you mentioned your weight. Remember- It's not the size of the dog in the fight, it's the size of the fight in the dog that matters.....

My Best to You and Everyone Here 

katenorwood

I get it and it's very much a rollercoaster ride !

Hey Ditto !

I went with a clinic who are very pro-active and determined to kick butt on this demon.  I went ahead with a H/N biopsy and lung re-sect to keep this in check.  Yes it is very frustrating and I'm not gonna lie (it's painful).  But at the end of the day I promised myself a year ago that there was more to living than the fear factor of my dx.  Know my thoughts are with you guys throughout this....and if you have to you'll muster the strenghth to make the right decissions.   Katie

ditto1

katenorwood said:

I get it and it's very much a rollercoaster ride !

Hey Ditto !

I went with a clinic who are very pro-active and determined to kick butt on this demon.  I went ahead with a H/N biopsy and lung re-sect to keep this in check.  Yes it is very frustrating and I'm not gonna lie (it's painful).  But at the end of the day I promised myself a year ago that there was more to living than the fear factor of my dx.  Know my thoughts are with you guys throughout this....and if you have to you'll muster the strenghth to make the right decissions.   Katie

Thanks to all of you

I will do as you say and take it one day at a time and keep on fighting, Praying no surgery but will get in that ring if it comes. 

Skiffin16

ditto1 said:

Thanks to all of you

I will do as you say and take it one day at a time and keep on fighting, Praying no surgery but will get in that ring if it comes. 

NS4D
I think we need to start a campaigne and collection for a T-Shirt...

NS4D

No Surgery 4 Doug

~John

luv4lacrosse

YOU DID IT ONCE, YOU CAN DO IT AGAIN

I unfortunateley can be placed in the re currance column. You are not in this column yet. It is not C until the pathology says it is C. If you do end up in the column with me, remember, you did this once before. I really thought for me, the neck disection, and I was cut from adams apple to ear lobe with 34 nodes removed, was much easier to recover from VS the 3 Cisplatins and 35 Rads. I will be honest, I say this as it is no big deal, but it is. This time around I am seeing a Psychiatrist who only sees H&N Patients and immediate family, and it has helped. If you are struggling with your emotions, I highly suggest you seek some professional help. I also know what it is like to wait for results, and that for me was the hardest part.

You have a family here that you can share anything you wish. Whatever it takes to help another fellow warrior through tough times.

 

Mike

ditto1

luv4lacrosse said:

YOU DID IT ONCE, YOU CAN DO IT AGAIN

I unfortunateley can be placed in the re currance column. You are not in this column yet. It is not C until the pathology says it is C. If you do end up in the column with me, remember, you did this once before. I really thought for me, the neck disection, and I was cut from adams apple to ear lobe with 34 nodes removed, was much easier to recover from VS the 3 Cisplatins and 35 Rads. I will be honest, I say this as it is no big deal, but it is. This time around I am seeing a Psychiatrist who only sees H&N Patients and immediate family, and it has helped. If you are struggling with your emotions, I highly suggest you seek some professional help. I also know what it is like to wait for results, and that for me was the hardest part.

You have a family here that you can share anything you wish. Whatever it takes to help another fellow warrior through tough times.

 

Mike

Thanks Mike

Im sure Ill be fine a little better everday, waiting on biopsy before trying to give anymore thought to surgery/cancer.  I thank all my CSN friends for being there as you all have been since back in April when I first Posted.   So God Bless you all.   Skiffin I will take a dozen in large lets assume I will be gaining weight, oops one small for Diane.

ToBeGolden

Big Surgery

Well. You might say I had a BIG NECK DISECTION. The doctors took out my vocal cords. Was it worth it? YEP.

First: I must tell you that my week stay in the ICU was virtually pain free. Love that Diluadid. (If I could only learn how to spell.)

Second: I learned all three methods of restoring speech. Never thought that would happen. I now burp to talk. I remember when burping was socially unacceptable. Now everyone thinks I'm so clever to burp words.

Third: You and I can always throw in the towel. And there really might be a time when throwing in the towel is the right choice. But once you give up, you don't get a chance to change your mind.

Finally: Mood comes from the deepest parts of our brains. No one has good conscious control over their moods. Those who think they control their moods are only fooling themselves. They have just been blessed with good moods. I just wish those who are blessed with good moods would have a little more understanding for those of us who are challenged by our moods. There is no magic solution for a bad mood. We (I mean you and I) just have learned to put up with them.

I never dreamed I would be where I am today. Not in my most wild imagination. So, I must profess that I cannot guess what next year, or next month, or next week will bring. I'm clueless.

 

Tim6003

ToBeGolden said:

Big Surgery

Well. You might say I had a BIG NECK DISECTION. The doctors took out my vocal cords. Was it worth it? YEP.

First: I must tell you that my week stay in the ICU was virtually pain free. Love that Diluadid. (If I could only learn how to spell.)

Second: I learned all three methods of restoring speech. Never thought that would happen. I now burp to talk. I remember when burping was socially unacceptable. Now everyone thinks I'm so clever to burp words.

Third: You and I can always throw in the towel. And there really might be a time when throwing in the towel is the right choice. But once you give up, you don't get a chance to change your mind.

Finally: Mood comes from the deepest parts of our brains. No one has good conscious control over their moods. Those who think they control their moods are only fooling themselves. They have just been blessed with good moods. I just wish those who are blessed with good moods would have a little more understanding for those of us who are challenged by our moods. There is no magic solution for a bad mood. We (I mean you and I) just have learned to put up with them.

I never dreamed I would be where I am today. Not in my most wild imagination. So, I must profess that I cannot guess what next year, or next month, or next week will bring. I'm clueless.

 

So many things to say, but everyone here covered them well...

..and so many on here have had it worse than you and I (I know you know that already) ...how you feel is how you feel...you are as human as the rest of us...so always share the moment ....even if it means you get slapped around, kicked in the butt or a should massage

 

I remember one day telling my ENT and my onco doc "I worry by not having the neck dissection did I get the best treatment possible" ...my ENT has nill bedside manners but my onco said "that's really becoming the new norm, we do rads and chemo and mop up with dissection if needed" ......and (correct me here somebody if I am wrong) ...yes, you can have the neck dissection IF it is even cancer and they can do the surgery and get clear margins (I used to not know what that meant, but now I know it means they clean out "stuff" from around the suspected cancer to get clear tissues, otherwise known as clear margins" ...so this is just another tool in their fight to make you well, again IF it is even cancer.

Again, somebody correct me if I am giving bad info...I'm no doctor.

My post treatmet scan showed a hot spot on the vocal cords...the onco said it was not as hot as the original dx pet scan (for staging) but that we would have to keep a watch on it ....he seemed happy and satisfied it would just be residual ...maybe your team is just more conservative or mindful of NOT pumping you with happy thoughts in case ....my onco seems to be a pretty happy guy ...the ENT, not so much...

So hang in there .....no doubt there is a reason for all of this ....I have found many reasons now why I went through what I did ...

As for being worth it ....as I have said before...this past Father's day when I was in church and I looked down that pew at my wife and those lovely five faces of my children...I remember thinking to myself if all I went through only gave me one day, one week more with them, it would be worth it....

..and boy have I learned sooooo much about me, my faith, my family....whom I have always loved so much ...and I have always cared about others...but it's WAY different now ....it's almost like I have a "burden" for others ....I want to do more and by golly I'm determined to do so in the near future....

..and I will add, many times your posts, your faith and your encouragement have helped me ...especially your pm ....so hang in there and know I for one (and I am sure many others) have you in our thoughts and prayers.

Best,

Tim

Pam M

Understandable

Like I've said before - I was dejected when I found out that everything I'd gone through didn't wipe out all the cancer (hey, they say two outta three ain't bad, but when treatment only wipes out two outta three tumors . . . ).  I knew going in that there was a chance I'd need the dissection on the back end, I just really thought it wouldn't be needed, since I was going through an aggressive treatment plan.  I was concerned that if part of my cancer could withstand treatment, it could probably have done some travelling, as well.  I was scared about what would be next.  My doc fully expected my "hot spot" to be gone at the next scans session - when that turned out to not be the case, I felt horrible.  I am, however, very glad to have had the surgery I'd so hoped wouldn't be necessary. 

Hoping that you're in the majority - those with temporary hot spots. 

For what it's worth - my "Hitler salute" is a little higher (thanks again for motivating me to get back with the program).  seems I'm taking my own sweet time, but I'm still getting there.