| Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Thanks everyone for your words of encouragment. Last week was for what ever reason extra tough for me. I was down and tired and I don't know what else. But I have been spending more time here, and I guess, it must be helping me feel less alone. I am still afraid, and I guess I always will be but at least I know that I am not alone and I am going to try to spend more time here where people that can relate to what I am going through will help me to deal with my fears and my stuggles. God bless each and everyone one of you.
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | 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 | Wendy, Im so happy you are feeling better!!!! OCF is a close knit group. We are like a big family. Thanks for posting that you are feeling better.
Last year when you joined, I was in the hospital without internet access. I was there for 2 months. Some of my OCF friends came to see me. One special friend would visit every couple days. My hospital had e-cards on their website. I must have gotten well over 100 of them from all over the world. I would have my son read them to me when he came to visit. At that time I was too sick and wasnt able to pay attention enough to read them myself. It made me feel so special knowing I had so many OCF members praying for me. I still have all the get well cards I received.
Keep coming back and posting. You will form some wonderful bonds with other members. Maybe you will even be lucky enough to have some people in your area. I have several OCF friends in my area. Never know, you could have someone in your same town.
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: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Wendy,
Glad to know you are feeling a little bit better. I was wondering about the burning? When I get that it is usually a sign of thrush. It makes your mouth burn. It is something we all get due to the dry mouth. You might want to talk to your Dr. about it.
I use the shower to help with the Neck being stiff. I would stretch and turn my neck to help loosen it up. I still do this to this day.
Yes, it is hard to find the work arounds we all need. Yes, the new normal is work. I think we all have days when our side effects get to us. Some days are better than others, just tackle one problem at a time.
Hope some of this will help. Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I second what Christine said. I was out of pocket for two weeks not because i was sick, but because I was busy getting through the end of the year at school and I had members find me and one even called cause everyone was worried. It meant the world to me.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Wendy, I'm sorry that you are having to deal with the fears, the unknowns, the "new normal", and all that goes with cancer. I don't dare claim to know how you feel b/c I haven't had oral cancer but I've watched my mom go through it several times over the last 5 years and I know how scary it can be. Please know that I will keep you in my prayers. Please stay on this website - people here give such great advice from their own experiences and I'm sure it will help you. Take one day at a time - you will be fine.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | 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 received many great cheer up letters and a few phone calls from the best support group in this small world. I am glad you feel better and hope you come here daily as I do, even if I just read others posts. Nothing makes my day until I come here for the 2nd and 3rd time just to read each day.
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 2010 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2010 Posts: 111 | im tired of constantly feeling heartbroken worried for my mother worried how she feels worried about her fistula opening up wider each day worried about how long its taking for surgery worried that MD Anderson will say 'theres nothing we can do' worried how long we'll have to wait to do surgery with her Dr at home if thats the case worried if shes had her medicine worried that shes fallen over while walking around the yard worried that everyone morning when i go to check on her that she wont be alive im sick of being away from home and sleeping on this crappy bed. sick of my stepfather keeping me up every night with the tv b/c he watches it with the volume on FULL BLAST sad that i planted a garden at home and now its all dead because i havent been home in a month sad that every time i look at my mom i wonder if its going to be one of the last times. or one of the last times we say goodnight. sick of calling ppl to make appointments and fax papers to prove she needs help. sick of WAITING ON EVERYONE IN THE MEDICAL FIELD TO HELP US. That extends to even the idiots at the pharmacy. I feel like all we do is hurry up and wait for others. sick of not having any help from family
sorry to hijack your thread wendy. it felt like it was good place to let it all out
Last edited by EmilyE; 06-22-2010 06:46 PM.
my mom, age 59.
12/08 surgery & 33x rad 4/09 recurrence 5/09 surgery & 35x rad 12/09 recurrence 1/10 surgery. peg tube, trach, fibula free flap 6/10 recurrence. double chemo treatments. 8/10/10 finally at peace in heaven | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Wendy and Emily I am hearing you. As a carer I can relate to you Emily but with watching Steve and what he is going through I can also understand what you mean Wendy. Don't you just get so sick of the entire thing. But what's the alternate? Give up. NO WAY. We'll all get there guys.
Yep I'm sick of it all and I hate cancer with a passion for all it's taken from us. But my boy is here with me everyday and when I have days where I am so over it I just have to think of him and how happy I am that he's still here with me.
Take care and keep fighting no matter how hard it gets some days. I have people say to me "I don't know how you two keep going". What choice do we have? We have to.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | Wendy I appreciate your post. I have a friend who each and everytime I speak with her it is a pity party. But she is healthy, her parents are alive, her kids are doing great, she has a successful business, huge amount of assets she has saved through the years. But her siblings are all retiring, her 6 figure income is down and things aren't great with her husband. Your post put into prospective how very lucky both of us are. And the Pity parties stop here.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Hi everyone, I began my journey last September. I found this site and posted a couple times. I am not sure why (I think it was the drugs) but I just couldn't follow the threads and remember what I posted or how to find it. So I have gone through most of the last 10 months alone. That is without the support of others that have had OC. I think when I posted this I was so lonely, scared and depressed I just couldn't get beyond it. But since I have started comming here and sharing this experiance with people who understand I am feeling much better. I hate this disease, but hopefully if I stick around here, I don't have to feel so alone.
Thank you for all your support and care, I hope I can repay it eventually. Is there a facebook page for this forum?
Last edited by wendys; 06-24-2010 06:46 AM.
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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