| | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I had a former colleague tell me how good I looked after losing weight, and she presented me to another colleague by saying, "This is the new Georgi!" as if I had been on some wonderful diet. I thought, "oh, yeah, I just love being the new Georgi who can't eat normally, and whose speech is slurred, etc."
I do think that most people are really trying to be supportive, and don't always realize how they sound to us.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | You're right, Georgi - most people do want to be supportive. They are just ignorant about what a cancer patient goes through and the "diet plan" forced upon them. At least you have confirmation that "the new Georgi" looks good! Maybe what we need is a list of snappy comebacks.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Twice this week, while doing my short walk in the park, using my cane, a passerby asked if I had my knees replaced, and another, if I had a bum knee. I told each no, it's from chemo for cancer treatment in the throat, and can see the look of fear in their faces, and probably sorry they asked, and neither could not believe it, repeating, from Chemo? I guees I don't have look of death anymore, when like when I was 130lbs, and pretty solid now at 200lbs, stil 40-50 lbs less that what I was, so figured if it could happen to me, imagine themselves lol. I told them should have seen me 4 years ago lol. I'm fine with talking about it, but most get uncomfortable when cancer is mentioned, and probably are more afraid for themselves.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]Twice this week...[/quote]Twice the past couple weeks, I start getting unsolicited "do you have a senior discount?" Say what? I thought getting the weight off me was a good thing, make me look younger; appears it has made me age some years; oh well, not complaining; alternatives could be much worse. lol don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Don - You do look younger since you lost weight. Just go with that. OC ages caregivers, too. Just put a little sign on your mirror that says "You look fine". 
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Aug 2013 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2013 Posts: 31 | I have already been offended and have not even had treatment yet! I had a friend, to be honest not a very good one, tell me everything will be fine " I just have to will it away and my cancer will be gone, and will it to God and he will perform a miracle and it will be gone" I don't know why I took such offense to this but I actually cried over it later 
DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Oh Jessica, I would have cried too <<<Hugs>>>. That person was totally dismissive of everything you're facing. She makes God sound like a stain remover.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Jessica,
There is a lot of positive in that comment. I firmly believe in the power of positive thought. I KNOW your mind can and does control the body and there is no reason to think the body can not work internally and assist the body to choke off cancers. Certainly, we all know stress is a factor in grooming cancer. We know we can control stress, so we can affect cancer to some degree.
There are many examples of cancer survivors who were sent down the palliative path and miraculously survive and even find their cancers have stopped growing or even shrunk. I attribute that to the power of God and miracles.
These are positive thoughts! don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | One of my current favorites, because at the moment it makes me laugh, but a few more reps and I will probably slug somebody. . . There is an older gentleman in my church family who has been thru two or three recurrences of oral cancer and has had just about every kind of treatment. Some fellow church members connected us over the phone (he can no longer attend because of caring for his mother) and he is a great, upbeat, helpful man. But the ladies who know him personally rave about how his smoothies are wonderful, curative, etc. No doubt they are, but I am in no hurry to try one. They all seemed to have missed the point that THE MAN HAS NO TASTE BUDS and admits it. If they want to try his smoothies, I would love to watch, but I am not there yet.  One man's cure/help/secret survival tactic is NOT necessarily another man's cure. Sigh.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Ok Kristen....that is really funny. It reminds me when I had no taste bids and the family still wanted me to cook I think just for some type of routine in life. I distinctly remember the look on their faces when I asked them how it was. They were way to kind so I gave them more the next night. I heard about it...for years.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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