#50895 08-31-2004 06:12 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Hello to all, well I cried and cried wanting to get into speech. I am there. However it has been so long since I have moved the muscles around my mouth that it hurts so bad I just cry!! Let us not forget that I can still hardly open my mouth! Dammit I as so damm mad, how did this all happen! I sat in the thearpists office and cried. I didn't get a thing done. I have to use a passy muir value to talk, however I cannot hardly breathe with it on. I feel like just saying to hell with this and sit in the house until it is my time to go. I have been fighting this shit for so long now that I just feel that all my juice is gone. My mouth hurts so bad and I cannot take anymore than I already do of morphine. But hey, I am doing GREAT, Bull you know what!!!. I just had to talk to someone, I am about to bust!. I hate the way everyone acts like this is going to be okay soon. It isn't, why do they act like it is. What am I stupid now? That it is going to take a lot of effort on mu part! Duh! Do they not have any idea how much I give everyday just to get up out of bed! That is the biggest effort of all. For what to set here in this misery for another day. The trache that needs to be cleaned an hundred times today. The tube feedings every three hours. All the medicines that I have to take. Oh yes that is fun. I don't even want to hear that at least I am alive to do these things, please do not say this to me. This is not living, this is HELL. Living is going out and enjoying your friends and family. Living is sleeping with you husband and loving him. Living is being able to talk and eat. Just because a heart beats does not mean you are alive. God please help me thru this, please.....miss vicki | | |
#50896 08-31-2004 10:24 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Miss Vicki
Well I wont say it will all be OK tomorrow, because it wont, I would like to say that with your strengh it will be better one day. OK not soon and not without a lot more grit and determination on your part. Now before you say you cannot do this, just stop and think WHAT you have done, you have took more over the last five years than most people ever deal with in an entire lifetime, it's not fair I know that, but life aint fair, but to me you are a hero, when my treatment path gets hard, I think of what you have dealt with and I grit my teeth and get on with it, so for all your new family and friends here at OCF you HAVE to keep going. I need you here and I know I'm not alone in that thought. I wish I was able to get to Vegas and meet with you but that is not to be this year, so NEXT year had better be the target for BOTH of us. I am saying a special prayer for you that you may see some light at the end of a very long tunnel..
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50897 09-01-2004 01:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Vicki, my heart goes out to you. There are no words that I could say to help you. I wish I lived near you, I am praying that God helps you get thru this horrible time and things get better each day. You are a beautiful person inside and out and it will get better I am sure. You are so strong. Could you pick up a book called "There's No Place like HOPE", it is a good read. I will mail it to you if you can't get it. Just email me...Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#50898 09-01-2004 04:40 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Miss Vicki,
I know exactly how you feel! If this bastard of a diaease is going to kill me , make it quick!!!
I know I will not survive this diaease. That is reality! I'm alive but the quality of life issues are huge. Can't eat much, most liquid runs out my nose, Depressed, waiting for the hammer to drop after the last scan showed improvement. When will it happen???? Not a fun time for me right now.
Keep venting Miss Vicki, Scream, Yell , Kick the dog, Let that anger out.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#50899 09-01-2004 07:23 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Miss Vicki-
It is hard to keep going and fighting when the pain is so great. It's a rough road and you have certainly had your share of battles. Scream, vent then keep taking those small steps and know that you have a team behind you praying for you!! I'm looking forward to meeting you in a few weeks and want to hear the word "hi!" Keep hanging in there!!!! Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#50900 09-01-2004 08:11 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | Hey Vicki I have no words to help,but to say this really sucks, and that no one knows what you are going through. Do what ever you can if it is venting here with us that's just fine. Those who say things will get better, or at least you are alive have no idea and like me don't know what to say to help. I say a prayer for all of us daily, and that is all I know to do. I'm sending lots of love your way.
JOAN
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#50901 09-01-2004 10:32 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Miss Vicki,
I am so sorry you are in so much pain and this battle is so huge! I can just say that I mention your name in my prayers everyday that God heals your body and gives you strength for all that is ahead to your healing. I admire your strength and all you have done so far...keep the faith and the fight!
God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#50902 09-01-2004 03:01 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Miss Vicki,
Please don't give up. Danny, you too! I've read the survivors stories, and I just know YOU will write a great one, too.
For all that it is worth, Tom and I are doing what we can for you, and it is easy to see that you are truly loved here - no one will forsake you!
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#50903 09-01-2004 05:37 PM | 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 | Miss Vickie,
I can't help but feel like your doctor is of little help to you. There are things they can do to help you regain your mouth opening gradually yet they did nothing. You had to battle so hard to even start speech therapy.
I should probably keep my mouth shut (or my hands from typing) while you are venting but it seems like you could use a bit more assistance through this.
I am praying daily for God to comfort you and always be with you through all of this.
Ed
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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