| Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Angelina...Please listen to Christine. She has been through a lot and has wonderful insight. I understand the fear you are going through to a certain point. I would freak out about every doctor appointment and biopsy and it took over my life. This is a rather large bump in your road but you will be ok.
Christine, you really amaze me. Is there anything you can't 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:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Suzanne, I am listening to each and everyone on hear. Most importantly, my God is helping me through this and slowly changing the way I feel about all this.
Let me just add, I hate it when a certain person in my life makes comments about not being needed because so many others are helping me out.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Eeekk..you don't need people making you feel guilty about others helping you, that's for sure.
I'm happy your listening to everyone here:) You are a strong lady and you will get through this.
Good luck tomorrow and I'll be checking to see how you did.
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:)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Since this has become the most viewed thread on the forum, I guess it has struck a responsive chord with OCF. Now many of us have complained about the insensitive remarks that other make, while others have risen to their defense. As a Libra, I have to balance out my sarcasm and disdain for the dolts with the understanding set forth in this excerpt from today's Washington Post relationship columnist: I love the phrase: "DUHSTRUCK" [quote]I'd say your boyfriend was dumbstruck by your news, but instead of "made speechless by shock," we really need, "rendered moronic by shock." Duhstruck. Is this normal? Sure. Most people struggle to form the right responses to "I have cancer," and some take the extra step of blurting out the wrong ones. His fumbles are even less surprising when you factor in both his social awkwardness and his abrupt emotional promotion: Yesterday, "Thai or Chinese?"; today, "How can I support you as you fight for your life [even though I have yet to determine how I feel about you]?" His isn't the only predictable reaction. You, too, are responding to your cancer in a normal way. Life-and-death news is a tornado that picks up your life, shakes it and drops it on a hill a few hundred feet away. Things you thought would break are intact, things you thought were permanent are shattered, and the light hits virtually everything in a new and surprising way. [/quote][quote][/quote] For those who want to read the whole thing, question and answer in context, here is the link Cancer or Boyfriend? 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I like the description of the tornado...very well put.
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:)
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Up until April 2007, when I had nearly all of my tongue cut off, as far as I was concerned the movie theatre and popcorn always went hand in hand.
Going to a movie recently with a friend who is very aware of my situation, I commented on how delicious the popcorn smelt, and wondered whether I would ever be able to eat popcorn again.
My friend said, "don't worry about it, you'll be right Kaz, just walk faster and block your nose so as you can't smell it".
My response can't be repeated on this forum..... it was very colorful. If only it was that easy. Some people just don't get it!
Karen
Last edited by Karen Rose; 11-20-2009 05:52 PM. Reason: forgot somethin
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | Give it a try - take lots of water with you. Since my 1st surgery 5 years ago and my 2nd 2 years ago, I too avoided popcorn, but last week I went and got a popcorn with EXTRA EXTRA butter. I ate one kernel at a time - washed down with water, and YES - it was delicious. I have approx 1/8 of my tongue so hopefully you too will find a way to enjoy this treat. At one kernel at a time you don't tend to overeat so I didn't feel badly about the butter. It was delicious!
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2009 Posts: 90 | Nice to see you back, Christine. Hope all is going well Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have another one for you. I was at church today and the same lady that told me to read Suzanne Summer came up to me, and I thought "Oh no what is she going to say now." Well she did it again. She asked me if I was glad to be off work for three months? What? I told her I love my job and I miss it very much. She then said that lots of people would be glad to get off for three months. HELLO,I just wanted to slap her in the face. Why would anyone want to be off for three months going through this stuff? I just don;t think she understands what is going on. Anyway maybe i am going overboard, but I am tired of people coming up to me and telling me that I am lucky tog et to be off work for three months.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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