#78448 08-09-2008 06:09 PM | Joined: Aug 2008 Posts: 5 Member | OP Member Joined: Aug 2008 Posts: 5 | My name is anne and I'm new here.
Diagnosed with tongue cancer (no one has ever said what stage)in late May/early June of 2008. Still have not had treatment. Doctors have said it will be three rounds of chemo and six weeks of radiation.
So far the worst is my PEG tube. Even after three weeks, it hurts and I still can't bend over.
I live alone with no family. The friends I have, while well-meaning, have lives of their own and can't devote the time I need to this.
I've also had to give up most of my pets as it is too hard to take care of them by myself.
So here I sit, alone, in the dark. Unable to really eat, no one to talk to.
I refuse to read much about this because it scares me more than I already am. I really don't need to hear or read the confirmation that life as I knew it is over.
I have already decided that if it gets any worse, I will just kill myself.
anne (feeling hateful, and mean, and scared, and lonely) | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Anne,
I am so, so sorry you've had to come to this site and even more sorry that you are despairing. I think my first question for you though, is why hasn't your treatment started? And second question, have you mentioned the PEG pain to the doctor that put it in? My PEG was also painful and it turned out it wasn't in my stomach anymore, but was lodged in my abdominal wall and it had to be removed. Please, do have it checked out!
Also, please do find out if your hospital or treatment center has a social worker or coordinator who can help arrange for home care if you need it, or find a volunteer network who can help you with some of your needs.
And mostly, I am so sorry you had to give up your animals. I don't know what I would do if I were faced with that choice.
Please know that you are not alone. There are many oral cancer patients here, and many survivors, who can help you get through this.
All my good thoughts are with you, Anne.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 | Anne:
Welcome to OCF. I know its difficult when you are first diagnosed with cancer. All of us here on OCF have been right where you are.
I will try to give you some pointers to make this easier for you. First have you called the American Cancer Society? They can help with transportantion to and from treatments. They also can help out with medication costs. Even with good insurance they meds are very expensive, some pills are $100 each. There are wonderful people there who understand what its like and you can talk with them.
Life as you know it soent have to be over. Life is just different now. So many people here have taken anti depressants to help them thru this. Its nothing to be ashamed of, cancer can be a devastating illness mentally. Please talk with someone, your family doctor or a social worker at the hospital, or a therapist.
Your situation is a difficult one, but it is something you can do. Hospitals have visiting nurses who will come help you. Its really hard going thru treatment without a caregiver. I know because I did it. I had my teenaged children who drove me to treatment, but other than that I fended for myself. So I do know from experience what you are feeling and going thru right now.
As far as your PEG tube goes. Have you gotten it checked since it was placed? Its probably too tight. Mine hurt like heck til the doctor loosened it.
Please feel free to ask questions, or just to vent your frustrations here. There are so many that have walked in your shoes and will help you.
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: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Hi Anne,
Sorry you are here but glad you have found us...I too was diagnosed with tongue cancer and the time between the diagnosis by my local physician, getting into a comprehensive cancer center, MDAnderson and getting a treatment plan up and running seemed like a lifetime. It was a scary and anxiety provoking time. But know there are many positive stories and many, many survivors, me being one.
I'm with Margaret on this one. Contact your hospital social worker and get some support. No one should have to deal with this alone. You will find many folks here who will gladly listen and share their experiences, knowledge and advice. Sending positive thoughts your way as well. Hang in there!
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | 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 | Anne,
Like all of us our lives changed (even someways for the good, believe it or not) but it's not as bad as we feared. You will adjust to a new you and like most things, time cures all. Please talk to your doctors and let them know you are angry and depressed. They can help and you certainly don't need to battle these feelings on top of the cancer.
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.
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Anne --
Depression often accompanies the fear that grips us after our initial diagnosis. See your doctor about this, pronto!
Have you had any surgery (other than PEG insertion)? As others have said, this is not inevitably a horrible experience. Don't get me wrong, there are about a thousand things any of us would rather do, but this is very doable.
Talk to your doctor or CCC about local support groups that can provide some companionship and assistance while you go through treatment.
Keep posting here -- we are here to help!
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
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