| | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2010 Posts: 48 | I know I am brand new to this new lifestyle and I have a long road ahead of me. It's crazy you would think that the cancer dx alone would be life shattering; but what also sucks is I'm still single! I was suppose to get married last year May/2009; then fiance bailed. Maybe that's how I got the cancer I was doing a lot of weekend binge drinking getting over my ex; maybe that's what triggered the HPV to awaken! Who knows!!!. Now with being diagnosed with cancer; I feel that I will never get married and have kids! You people that are married and have kids are very lucky to have family that can support you and give you that extra incentive to fight!! 
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well good news is that you now have US on your side. We are far better than family that is close to you anyway. We understand your concerns, fears (rational and especially the irrational ones) and can offer help where spouses generally have no idea what to do or say. You are now part of the OCF Family. Your life will go on, you need to get through this next detour and who knows what lies ahead as far as finding your soul mate. Life is like a box of chocolates....
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)
| | | | | Joined: Apr 2010 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 38 | I can understand how discouraged you are. It sounds like you've been through some rough times in the past year or so. I am hoping that you find this forum comforting. I know I do! And Donna is right, people at the forum will understand your fears and concerns better than any family member could. Everyone here wants you to fight!
Ashley
Cancer found on left bottom portion of my tongue on March 9th. Non-smoker and light drinker. Tumor removed March 30th. Stage 1. No chemo. No radiation.
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | What if you had gotten married and you discovered that you had made a BIG mistake! It would have been terribly lonely to BE MARRIED and in a failing relationship. This way you get to focus on getting well. You will get through this and other doors will open for you. There are a lot of people here who will support you as you move forward. Keep posting.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi Irishgypsy -
Don't let those thoughts get the best of you - easier said than done, I know. You've dealt with a lot, but you are not alone. Everyone here is rooting for you.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Irishgypsy
You could be like me, 2 weeks out of tx hubby leaves you. Yep it sure sucks!
PJ xxx
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | pj,
I think it sounds like you are far far better off without him!
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Mine walked out when I was still in the Hospital. LOL Did her best to make out like I had been mean as an excuse, but all that know me know I just can't be mean to anyone. Good luck and welcome to OUR Real close understanding family. These people are the best to have with us in our new lives.
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have a question, Where in the world is WNY ??
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
| | | | | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2010 Posts: 48 | LOL! Rochester, NY upstste!
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL and just how do you get WNY out of that? Just being nosy Irish.
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
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Ha...lol...I thought WNY was another country!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | I'm from WNY (Lockport) before my move to FL. I lived in WNY for 42 years.  The people here will help you all the way they know what they're talking about. This forum is the first place I come to in the morning and the last place at night. The people here are very knowledgeable. Hang in there everything will be fine. Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | I just have to laugh...everyone is so honest here. We have each other...who needs therapy?!
Any way (I am also in Rochester NY) Yay, the sun is actually shining! I am also single (divorced) My last boyfiend left me while I was laying on the gurney w/an IV in my arm telling me his "needs" are not being met! Could you imagine that? !!! Shame on me for getting cancer & fighting for my life!
That was over 2 years ago. Is it easy being alone?..no. Even last night I cried myself to sleep. I am sooo in debt (paying off my 2 kids student loans) Mourning for my Dad (who was my most favorite person in the world) And my 26 year old son & his girlfriend who are living with me (3 mo. now) rent free-did not even give me a birthday or mother's day gift & my 22 year old daughter gave me a $20 gift f/both Mother's Day & birthday! So don't feel too bad for not having any of these (suck the life right out of you) offspring. Sorry, I seem to have gotton off the path here! Sometimes I just gotta wonder "WHEN" will life get easier? At least your still young. You have a great profession. Any day you may walk in to that patient's room...& Bingo- that might be your true love! Never give up!
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Charles, I am going to think real hard, who I know (for you) But really, for right now, lets just get you through your treatments. Do you have family, Good friends to help you? Let me know. Roch. is not that big & I would love to help!
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Dianne, I loved your post and we went thru the same thing with "Love buddys." When I think about those days and her, I just smile and think how lucky I was. She didn't even say goodbye so that shows her class. I wasn't on the gurney tho but in a coma and remember nothing about her even moving out.
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I do get hugs from the prettiest woman in church on Sundays. LOL This raised a question fron the one that moved out. I heard does she make you happy now ? LOL Too bad she is married or I would be on her like bees on honey. Just a thought even tho the other one was a knockout but strange at times.
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
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Ya'll are too funny  Hang in there Irishgypsie, they are right - if you're not with the right one, you can still feel alone. When the right man comes, it won't matter what your problems are - he will love you for you, no matter what. I am hoping that for you! In the meantime, hang in there and concentrate on getting better. Take care. Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2010 Posts: 48 | I am single and fighting this disease! My mother lives in Florida but she would be more stress than help. I have friends that are near by but there is nothing they can really do or say! All i get is how are you doing; don't be so negative. But it's difficult when you don't know what is in store for you after this treatment. Will I ever eat again and enjoy it? eating is such a big part of our social lives. Will I ever find love again? not sure if someone will want to be with a cancer survivor who hacks and spits up mucus all day long! Will I ever be happy again? I am so tired of people asking how are you doing? What am I suppose to say JUST GREAT; LIFE IS JUST GREAT CAN"T WAIT FOR MY NEXT STOMACH FEEDING!!! I don't even want to be out in social settings. I don't want to be around people who are laughing, eating, drinking, and having a good time!!! I feel like I'm 38 going on 58. I might as well get a Dog after this and sign up for AARP card! {No offense to to you older folks) But it is what it is..... this shouldn't be happening at this age....life is terribly ****ed uppp! Charles
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Maybe some antidepressants would help the negativity.
Of course you will move on past this. It may take a while but you will recover and get back your life. When someone offers their assistance, take it. Now is not the time to be stubborn and have so much pride. People want to help and will if you give them a chance. The feeding tube STINKS!!!! However, its not the worst thing that you will ever encounter in your life, its just a temporary inconvenience.
If you could take a minute and add a signature, it would be so much easier to answer your questions. Its under the 'My Stuff" tab, then click profile, its the box at the bottom.
ChristineSCC 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 | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Charles,
Where exactly are you in your Tx/recovery?
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.
| | | | | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2010 Posts: 48 | I will be starting dose 16 of 33 radiation treatments this week 57 gry to back of throat/65 gry to right side/ 56 gry to left side to be safe; using a TOMO machine. Already had 1 dose of cisplatin; will get 2nd dose this Wednesday. Had PEG tube placed this past Thursday; lost 13 lbs so far that's why I figured I needed the peg; tried to do it without it. Can still drink stuff by mouth but by the end of the day it was like poring concrete done my throat. My throat get's really dry during the night; only sleeping about 4 hours at a time; have sores on right side of tongue and some back of throat.
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
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