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#91191 03-05-2009 02:58 PM
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It's really tough to talk to anyone about the things that I'm afraid of. I get really awkward and hear a voice in the back of my mind saying "quit your whining" so I just keep quiet about it. But life is a scary place after cancer, knowing that it CAN happen to me. I'm afraid that I may never be able to enjoy food again and can't imagine life like that. I'm afraid that I may have to have massive dental work done and I can't afford it. I'm afraid of so many things but most of all a recurrence and I can not even imagine going through radiation again. I sometimes think that I just won't do it. I've never been a quitter but that might change if I have to face that again. At least I know I can come here and whine if I want to.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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David:

Your fears and unspoken words are something I think most of us have. Just try taking it day by day. Maybe go back and read some of your old posts so you can see how far you have come. We are all terrified of a recurrance. Ive had one and am living proof that it can be overcome. Ive also just had all my teeth removed yesterday due to the after effects of radiation. I sometimes feel badly like what you explained. Its a horrible feeling to feel alone and scared of this new life and all the changes that come with it. One thing to remember is that you are seeing doctors who are looking for cancer, if it would come back it would be found very quickly.

Celebrate your milestones. Your 1 year post tx is coming up very soon. Even if you can eat something new, take it as an improvement. Eating will take a long time to return, but it will get better. The support from OCF is what helps us all pull together and move on. Please check in from time to time. It will help you to feel better.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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It's good to have a place to whine, kick, cry and just generally bitch about all of this. My husband and I have also had the same fears....not enough money to get through this, having his taste return, possibly having to face it again. Believe me, I'm not expecting those fears to go away when treatment ends. Sometimes just putting it out there in writing and acknowledging it helps. I seriously don't know what I would have done if I hadn't found this forum. Some days it's all that keeps me sane to read the posts and know we aren't alone in what we're going thru.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Thanks Christine and Cheryl. I was thinking about it after I wrote that post and thought that was kind of a stupid thing to say. Yes there have been times when I thought I just won't do that again but I know that if I have to I will. And everybody here knows how scary that prospect is. But I don't want anyone to think that I'm going to give up. I won't.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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David

It is a scary world. I try to think of the good things as much as possible and try very hard not to think of recurrence or the other scary things. Do you have family or friends to support you?

I do not know what I would do without this forum and a couple of very good friends that take the time to give me a pat on the back every now and then. My family is not very supportive. They don't know how to be.

You will learn to eat food again in your own time. I was coughing and sputtering water not too long ago and today had the first bites of anything that resembles solid food - a pancake. I'm thrilled and I still have a long way to go. It will get better.

Please post the things that you feel here anytime you need to. That's what this is for. Support, encouragment, to have somewhere to fall apart if you need to. We are all here to hold your hand.

Patty

Last edited by Good1; 03-05-2009 04:34 PM.

48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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David

Dont worry about posting your feelings here. We have all thoguht those things too. I had always been so afraid of a recurrance that I would not ever dare read anythign about it. It didnt stop me from having one. We are all in this together and understand better than anyone how you feel. Dispair can get to you sometimes when you think too much. Keep your chin up, you have come a long long way and have lots to be proud of. Vent all you want, we are here to listen and support each other.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 5,260
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You are a real man if you can admit to fears and not a phony. WE all have a certain amount of fears. My biggest was being alone when I couldn't even walk or stand. I fell on the floor one day and had to call someone to come and help me back up. I am still self sufficient and trying my beat. Some people just walk away and tell themselves they are right and the world is wrong. See, I am whing right now but it makes me feel better. Go for it all you want and we'll listen to each and every word.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Not only do we listen, we know where you are coming from, in a way that those have have not been touched by this cancer do not. Feel free to post your feelings, and remember that your feelings are entirely natural and normal.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Yep, all of those fears are valid. But eventually you find that it is just too much work to walk around scared. I could get killed by anything at any time -- worrying about it is pointless

Sitting here at work, we just watched President Obama's motorcade drive by (he is speaking at Police Academy graduation about 6 blocks away), and as often as I have seen it, I am always impressed by the magnitude of the security. Then I thought, "What must it be like to have to live every moment with massive security?" In many ways, our fear of recurrence, side effects, etc. has the same "imprisoning effect".

No "wrong" feeling or fears. We all have them and deal with them as our own circumstances and personalities dictate. That's what makes this group of people really special.

Hang in there!!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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As for the President, He will have security like that the rest of his life. Not my type of job. I like the freedom too much.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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True, Jim, can you imagine trying to go on a nice relaxing backpacking trip in the Sierra wilderness or somewhere with helicopters circling overhead and secret service behind every tree?
Anyway, my wife and step son have been pretty good through all this but I don't tell them much of anything negative because my wife had a knee replacement surgery that went wrong and so lives in constant pain with that and her son is juvenile diabetic (he's now 40 and has lived with that disease for 33 years) so there's enough negative stuff around here without me adding to it so I just say I'm fine and listen to their problems. So, really, thank you all for letting me whine a little. I'll keep it to a tolerable level.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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David,

Cancer is very scary. We all feel that way, it's so hard. I think talking about it is the best medicine. I remember one day talking to my fiancee..I finally said it. I said "I'm scared I'm going to die" just speaking those words made it so much better. We are all here for each other which is awesome. We all have multiple shoulders to lean on. So whine away!!! Scream, yell...whatever you need to do.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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David:

I agree! It is really tough talking about fears of recurrence. I have found that you have to talk about what you are feeling, otherwise those same thoughts continue to go round and round inside your brain. The more times those thoughts go around, the more intense they become. I think it is normal to question whether or not you would go through treatment again. There is something to say about ignorance being bliss. These treatments are horrible aren't they? As for solutions, they probably vary as much as each of our treatments. I am currently going to group counseling and that seems to help. I have also found great relief just by reading the various posts on this site. Thanks everyone for saying it like it is.


Dx SCC 1/07, Partial glossectomy, Rt neck disection (extra-capsular spread), trach, peg, RT x30, Chemo, TX:1-07 thru 6/07, HBOT x30 1/09
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Friends:
Time does change things. During and soon after my treatment, I just assumed that I would probably die in the not too distant future. Then, for a couple of years, everytime I experienced anything unusual...an eye that kept tearing, a little white spot in my mouth, dizziness when I got out of bed too quickly...I got very concerned that it was a sign of a reoccurance and went to the doctor. Fortunately all of these were false alarms, and now, approaching 7 years from my original diagnosis and treatment, I don't really think much about reoccurance, and live my life just like other healthy folks. I plan for old age by saving for my future, thinking about retirement one day, deciding when I should start taking my social security,etc.
Of course I am aware that the other shoe could drop at any time. When I tried to buy some life insurance last year, I was turned down, but heck, at 61 I am older than most of the people that I read about in the obituaries each morning. (I love to read the obits!) I try not to work too hard and to play as much golf as I can...just like a lot of guys my age.

Life goes on, and I think that most of you will find, as I have, that as time passes, things will get better for you, and other thoughts will occupy your mind than just cancer and mortality. It is natural to worry,and we are a population at risk, but life is risky anyway.

Best of luck to you all.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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Danny thank you for coming back and not forgetting us. You always had strong posts, valuable insights and compassion. I appreciate you dropping by occasionally to tell us life is good, (it's good for others to hear it) and to offer your perspectives. Don't be such a stranger. This is mostly a board of newbies since you were here, and many of the old timers have been lost to the disease or moved on. Your knowledge and strengths really help.

I also heard from Karen Ng in Hong Kong for the first time in ages and she is well, happy, and made a nice donation to OFC. You old timers are the backbone of our reservoir of important experience based knowledge, and I appreciate your occasional return.

I get that some have to move on emotionally, or that "LIVING" your new life after cancer has to take precedent. But you were always a good example that any quality life is spent partly in service to others. Good to see you back.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Yes, wonderful to hear from you Danny. I haven't been on as much since my second diagnosis November 2007, have had a few scares since then, currently getting double checked for something in my mouth.
I sometimes feel like my head is in a guillotine (sp?) and get down, but then have to kick myself in the butt and realize I am still here 7 years after first diagnosis, have seen my kids graduate high school and now almost finishing up with college. I have lots to be thankful for. I am always here if anyone wants to write. I was terribly torn up over Minnie's passing and it was hard to get back on. Still am. She was a true fighter! As was Danny Boy, Petey, etc..
I would like to mention that Eva Grayzel is working very hard on her Lehigh Valley Walk for OC May 2nd, if anyone could attend or donate to OCF it would be awesome! Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Brian and Carol...
So nice to hear from you both. Carol, I am so out of touch that I did not even realize that you had a second diagnosis. I am glad that you are doing well. I also got to see my three kids graduate from high school,and the second daughter graduates from college this year, and my baby boy (in Puerto Vallarta for spring break!)is a college sophmore.
You guys humble me. I contribute so little to OCF these days and yet recieve kind words and praise from you who do so much for others.
Okay, I feel the guilt and just made a donation!

Take care,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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The donation was not expected, and I wish to personally thank you for your continued financial support. We live on the benevolence of others from month to month. Having said that, you already have done so much to help other people, it was really not necessary.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I have been monitored for a year and a half by an oral surgeon for dysplasia on the right side of my tongue and gums. My
most recent biopsy showed that I have squamous cell carcinoma on my tongue. I was also told that the doctor did not get all of the cancer and I am going to see the head and neck surgeon tomorrow. I hope that I have early stage tongue cancer that can be treated with surgery and radiation because I am not a candidate for chemotherapy. This is my third kind of cancer and I am angry about the diagnosis and terrified about the side effects of radiation treatment


mermaid forever
new tongue cancer patient
stage unknown at this time
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Why are you not a candidate for chemo?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi, Nebbias, and welcome. You should post your story on the "Introduce Yourself" page and get the full on welcome and support from the whole family. Hoping for the best for you;


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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