| | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Just want to vent a bit. I completed my treatments 3 years ago this coming August. I am basically doing well, and have it so much better than some of you guys do. So far, I remain cancer free. Went to a pot luck yesterday for our bell choir at a beautiful log cabin in the woods. There was wonderful food there...all kinds of salads, desserts, and other side dishes. I could eat a couple of bites of potatoes, a bite or two of pasta salad, some applesauce, part of a brat, and spoonful of dessert. I am sort of depressed at being so far out of treatment and still not being to eat normally. Part of it is because of the mess my teeth are in, and part of it is due to dry mouth. I know that I shouldn't whine about it, but I felt stupid sitting there with little spoonfuls on my plate, and this is the only place I could come where people might understand. Sorry for venting, and I know that I should just suck it up but while I am OK most of the time, it
does get me down sometimes.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Hey, Vent away. In some ways I have it easier not being able to eat or drink at all. This thread on depression is worth reading again IMO -if only for my song parodies  Depression Seriously, the impact of not being able to participate fully in the social ritual of "breaking bread" is not appreciated by those who can. We do understand how much this sucks Keep the Faith Charm
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Thanks, Charm, you always help us keep things in perspective.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Venting in a safe environment, for whatever the reason, is an important part of healing. Think about how awful it is when we keep our fears and worries bottled up inside. Not venting is psychological self-mutilation.
We all have expectations of where one should be following the OC experience. But we also know that there isn't one way. Four years out and my husband still deals with many issues, eating being a BIG one. I completely understand your sadness. So many social situations are centered around a meal. I encourage my husband to attend gatherings but I don't push it. He is reluctant to eat in front of others--it is a messy and slow process.
And remember, that other people who are not familiar with OC, have ridiculously high expectations, too. "Gosh, I though he'd be over that by now." How many of us have heard that one?
I love this forum. It is safe, friendly, and supportive. And there are no limits to that. We get you!
Take care-
Anita
Last edited by AnitaFrances; 05-21-2012 11:18 AM.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Sorry you didnt do better with eating at the pot luck dinner. I know it can be very frustrating not to immediately bounce back to how you used to be, even a year later. Sometimes you just have to take a deep breath and realize how far you have come. You still will notice more improvements during the next year and the more practice you have eating, the easier it will become. I know its difficult but you really will get there and at next years pot luck, you will be doing so much better!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Vent away...it's very freeing!! ;o)
The real world doesn't understand, but we sure all do. We are only 7 months out, so we still expect to be having issues, but then again, we don't, ya know? You just want your life back but that's not reality. The reality sucks! But...we have each other and that helps soooo much!
Hang in there and thanks for venting. I think it helps everyone else too, when one of us lets loose!! =)
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | This is really the only place I can come where people understand. Anita, I totally identify with your husband about not liking to eat in front of people. As you said, those not familiar with OC do think that I should be "over it by now". Christine, you have been through so much more than I have and you and those who have had recurrences are my heroes. Thanks for letting me vent. You guys are the best!
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | You really will get even better than you are now. It just takes such a darn long time! This site is a place where its ok to vent, we all understand!!!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | We're here and all have been there on some level. It was my birthday weekend, and I made some great vegetarian food, but could only have a little as some of it was quite acidic and upset my tongues- but being a veg head this doesn't upset me as much as most because Im used to having to pick my way through my dinner... Hugs it will improve!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 | VENTING ALLOWED AND EVEN ENCOURAGED ON THIS SITE
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.
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
