Scared

Welcome and sorry you need to be here. I do understand what you are going through. I was having my lungs checked [scoped] and when I woke he said "I'm afread you have cancer" and he was on VACATION next week. What the heck. Well I went the next day and saw My GP. He told me, it's ok, things are going on right now in the background to care for me and not to worry. He was correct, they were already getting me set up with help. So please try not to stress to much until you do see him. There are several that have had BOT SCC and are doing fine. It is a rough road to go down but you will get through it. This group is here 24/7 for support.

Bill

Welcome to one of the best support groups on the net, sorry for the reason you are here.  First, check the Superthread, many helpful ideas for dealing with issues pre, during and post treatment.  You will need to see your dentist and get any troubled teeth taken care of before treatment begins.  We will be here to help you through. 

to the club nobody wants to join.....you did find the most supportive forum on the internet, tho.....so far so good .

Some people get a trach during the surgery part of oral cancer....I imagine it depends on where surgery is done, and how much swelling is there.  It's to help breathing (as they say, nothing else matters if you can't breath).  Most traches are removed when swelling is gone.  I believe that is the "tube" you are referring to.

I've been on this board for going on 3 years.....there have been a number muscians who have come and gone.  Seems their voices may change a little, but talent hangs in there....it just takes time to heal.

p

gypsy, I just want to say you beat cancer before and you CAN do it again.  you know it will be quite a bumpy road but you will get through it.  we will all be here to cheer you on and here to listen when you want us too.  I don't blame you for being scared.  I remember when my cancer came back, i was scared to death, not just kinda scared.  there are many of us here who have beat it 2 or 3 times!  we are survivors!  praying for tx to go well for you and to go quickly so you can be on the road to recovery and healing very soon.

God bless you,

dj

Gypsy1959 said:

Head Tripping

My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday  11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014.  I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.

My radiation was 35 sessions and I had small weekly doses of carboplatin chemo. My MO said based on the induction chemo I had earlier that I would not even feel the carbo which turned out to be true. I drove most days but once a week got a lift for company more than not being able to drive. Hang in there. Once you get past the first few sessions it becomes pretty easy. If you get anxiety from the mask, you can get something like Ativan to calm your nerves in which case you might need some help driving.

Gypsy1959 said:

Head Tripping

My results positive for HPV16. PET showed localized. Treatment is radiation 5 days a week for 7 weeks. Chemo will be every 3 weeks. I can lose my hearing from the chemo. My mask will be made tomorrow 11/11/2014 and port installed on Friday  11/14/2014 and if I don't chicken out treatment of both radiation and chemo start on Monday 11/17/2014.  I have refused the peg. I know everyone reacts differently to chemo and radiation. So no one knows what side effects I will have and what will be temp and what will be permanent. I guess that bugs me along with flying on a plane wondering if a "tweeker" worked on the plane I was on. I am head tripping. Going through this alone is a drag. I want to be able to drive to my own treatments as they are far away. So if anyone drove themselves to treatment/went without a peg/kept the hearing please please let me know. The first cancer having a colostomy was a blow to my feminitiy and then my husband wiped out all the remaining of my self esteem. So my face, my singing are all I have left. I have no idea why I just wrote that. I am just an honest gal. For those who took the time out to write me I truly thank you.

As to you not getting a PEG, I didn't get one. I had radiation for 6 weeks, and I got through the treatments without needing one. I lost weight, but had a few spare pounds hanging around, so it worked out. 

As far as any head games you’re playing with yourself, the mind can play terrible tricks on you, but it works both ways. Use your mind to convince yourself that you will get through this rough patch, and you will come out the end tougher than you ever thought you’d be. When the pain or anxiety becomes too great, use your mind to transport yourself to a better place.  

I'm doubly sorry that you're going through this alone. I had a lot of support, and it made a big difference. I did drive myself for the first four weeks of radiation, but then the pain became too much for me to tolerate without narcotic medication, so because of the narcotics, my doctor told me no driving. You should check with your cancer center or a local cancer support group, church group, etc. as you may be able to find a volunteer to assist you. Although I’ve always prided myself on self-reliance, this was a time I needed help, and trying to go it alone would have been a mistake for me. In fact, if nothing else, cancer taught me that seeking help is not a bad thing. Reach out to anyone or any organization you can. You'd be surprised how many people will be than happy to help.  

 I only had a few chemo sessions, no hearing problems, but terrible sores on my scalp. Now a bit over two years post treatment, some annoyances remain with respect to my mouth, (dryness, sensitivity, and some changes in taste) but other than that I'm as normal as I ever was, and do everything I did before cancer and treatment. I wish you all the best. 

Gypsy1959 said:

What Earth Angels

All of you are such Earth Angels. After reading I feel such a peace. I am ready to rock and roll on Monday. Thank you sincerely for making me feel special and helping me conquer the fear. xoxox

I also had base tounge cancer.I thought it was just a cyst or something until my ent looked and sent me for a pet scan.They removed part of tounge and replaced with tounge flap using muscle from my thigh.During the operation they also removed my teeth and put in a trach tube and also a peg tube.Both trac and peg tubes helped during radition and he took out trac after but waited on the peg until after the first pet scan.The peg really helped as I didn't really feel like eating and was able to keep my weight up.I go in Dec and he wants to see how strong my jaw and gums are as to he wants to send to a denist that customizes dentures to help me even more to eat and speak.Some of my words don't come out like I'd like because with tounge being tied down now it doesn't hir the roof of mouth on some words and with the dentures they will as the palte will be thicker then most dentures.But all and all feeling great gaining weight again back to work.My only regret is not going sooner and thinking it will go away.