I'm a newbie here and here is my story to date.

1. Been diagnosed (and confirmed) that I have Squamous Cell Carcinoma on the base of the tongue.

2. Have swelling on left side of throat up by the ear and quessing the cancer is there also

3. Looking like I'm going to have to go thru the following for sure
- radiology
- chemotherapy
- surgery (dissection on neck)

3. Have had the following pre-tests
- Catscans of chest and head (both were good according to doctors)
- Petscan (ditto)
- Radiology 'planning' session

4. Scheduled next week for
- Putting a 'port' by shoulder for vein access?
- Colonoscopy (guess to be sure of that area?)
- Dentist (will probably lose what teeth I have left on bottom)
- Radiogoly 'confirmation' session

WHEW.......that's a lot of doctors in just about 3 weeks of action. Having started ANY of acutal treatments YET.

I just wanted to introduce myself and explain where I'm starting out. My situation is I'm single and live alone and only have two living family members (two brothers that live 500 and 800 miles away). So, I'm kind of going to have to make a go of this by myself. I'm hoping I can make some good friends thru here that have gone thru this (or in whatever stage) to help me get thru it and answer the obvious questions I'm sure to have along the way.

I'll end this by saying I've always been a VERY positive person and hope to keep the eternal opptimisum I've always had.

Hi garyock,
and welcome to the forum. While you are still healthy I would develop a network of people who can can help you. Call the local chapter of the American Cancer Society and they help with rides to and from treatment and so forth. Are you with any neighbors or churches - maybe they can help with shopping and things like that. Many people out there consider it a gift to serve others - allow them. The Fed had a program called IHSS (in-home supportive services), usually administered by the county welfare people where they pay an hourly rate for certain caregiving tasks if you have to hire someone.

Have you had all of the blood chemistry, creatinine clearance, baseline TSH and hearing tests yet? I would get a baseline MRI and chest x-ray as well. You didn't mention a biopsy - did you have one?

Keep that positive attitude - that will carry you a long way. We're here for the bumps or for you you to vent,

Welcome friend:
It is tough row to hoe. But hang in there, bond with your nurses and enjoy the ride.
Darrell

Enjoy the ride? That is the most screwed up thing I have ever read here.

Welcome Garyock, I wish I lived near you and could be of some help, sorry you have to go through all of this but I like your positive attitude! And it is certainly good news about your PETscan and CATscan. Keep us posted! Carol

Garyock, please heed Gary's advice and get a support system in place. Now is not the time to be a loner![or superman]BEst wishes to you. Amy

Welcome to the forum.
This is one hell of a way to make new friends, but you will find the most informative and supportive group you've ever encountered.
If I read the map right, we're only about 15 miles apart. I'll send you a private message on how to get hold of me.
In the mean time, take some time to look over this website. It is an absolute goldmine of information which can help you formulate questions you'll want to be asking your doctors, and it will also answer a lot of the questions which must be racing through your head right now.

Keep us up on how you're doing.

Good Health,

Chuck

Gary, welcome. It is quite normal to feel like a ping pong ball in the weeks before treatment actually begins, at which time you will settle into a routine. I got a kick out of your thread title, as I referred to my treatment as the Great Adventure. Yes, some parts of it were significantly less than fun, but I met some terrific pepople along the way with whom I have become good friends. I, too, am very optimistic by nature and I know that made a whale of a difference when things got tough. If you can keep the finish line in clear sight mentally, you will do okay. Feel free to ask any question that comes to mind. Those of us who have finished treatment come back here to repay the invaluable info we received by helping those coming after us. I am glad you found the OCF.
Joanna

Gary
This is not something that is cool to go totally alone. Let us know how it is and there is lots of support here but if you can let us know how the treatment plan is set up and maybe we help target when you will really need somebody..If I broke it down to basics what Bob needed was some someone to provide food in a form he could consume or to bring him stuff when he couldn't muster the energy to get up. Someone to be on point when he was in pain to help tell the story to the Doc's and someone to see that the general environment was healthy for human habitation
You may need the social workers to help you find what we call a "may I help you person" a caregiver that can come in at least a few times a week to see that you are gettin bye...

Gary, Welcome to the forum. I must echo what has been said above about getting a support system in place right away. With luck, your treatment will not be too disabling, but you should plan for the worst. You may be UNABLE to drive home from treatment, or prepare food. This is not about being independent, or tough. This is a very real problem that many of us had to deal with. Your positive attitude and personal strength will be tested, but you can do it. Don't wait to look for help. Set it up now with lots of back-ups. It will serve you well. There are lots of people on this forum who will talk you through the details. Take full advantage. Best of luck to you. Please stay in touch, Tom

Thanks to EVERYBODY for their encouraging words.

It's not that I'm trying to be a 'superman' here by going it alone. I just flat don't know anybody where I live (only lived here a couple months now) and have no family anywhere close to me.

I do have a couple of co-workers that sort of live in the area. I'm hoping they can help me out with some of the days I may need a ride. The driving thing has me worried the most. I'm trying to plan this thing out (the best one can in this situation) and hoping I won't have to rely on someone getting me to and from treatments very often (if ever?). The Kellogg Cancer Care center I'm dealing with is close to work (5 miles at most)...but not close to home (about 30 miles). I'm hoping I can go into work early, leave early to go to treatment center and then go home as a routine.

I will find a 'niche' somewhere in one of the topics here other than the introduction page and keep everyone posted.

Thanks again for the help in advance

Garyock

Garyock --

Please contact the American Cancer Society -- they may be able to help you arrange a driver or other transport as it is highly probable that you will not be able to drive yourself to and from treatment after a few weeks. It will depend on the exact therapy, but chemoradiation is very fatiguing, you may have sedation for the radiation (which will affect your ability to drive) and when (note I said when, not if) you get into opiate pain relief then driving is also very problematic. Worse, you may not be able to make this judgement call yourself.

In any case, ACS helped my mother a great deal with transport when she was receiving therapy for leukemia and she told me that they were also helping others who did not have local caregivers. Also, many cancer centers have staff whose job is to facilitate transport, housing (when needed) and financial assistance for cancer patients -- after all, no one needs these worries when fighting this disease!

Ask your oncologists exactly what chemotherapy drug you will be receiving, what they will prescribe for nausea, pain and possible anxiety. You need to ask if you will receive a gastric feeding tube (PEG) as almost everyone getting chemoradiation has problems staying hydrated and getting adequate nutrition by mouth during and immediately after treatment. Will they be giving you Ethyol (amifostine)? This has its own (sometimes serious) issues but recent studies have shown it does help preserve salivary function. Not everyone gets a portacath, although this does allow easier delivery of some of the chemo drugs (my mother had one). Also, not everyone has post-treatment neck dissection -- this is a bit controversial in the HNC medical community and seems to vary from institution to institution -- for example, none of my husband's doctors at Hopkins (ENT, RO and MO) recommended it for him although he had stage IV SCC.

This is a very difficult and hard road you will be travelling,and you will definitely need some help along the way, both mental and physical. Is there any possibility of one of your brothers coming to stay with you, for at least the last 3-4 weeks when you will be feeling the worst and need the most assistance with things?

Gail

Garyock,
Ethyol helps in some situations, not in all. It is not an absolute that it will help you preserve salivary function. Some people simply cannot tolerate it though. I did not have it and still retained some salivary function.
Also, a neck disection is not as horrible a procedure as it sounds to be. I had one, as have many on this board. You must make sure that the basis for you to have or not to have one is based on your doctors opinion of your set of circumstances, and not based on what treatment others have had.
Gail makes a good point about the PEG, see if and when they are giving you one. Some people get through without it, some don't. It seems to be a very individual type situation with no set of rules or guidelines to follow.
Good luck with it,
Minnie

welcome gary, we will all support you along the way its a hard road but you being so postiive with a little help along the way you will get there.... take care ...god bless... maz

Welcome to the Oral Cancer Foundation Gary! Glad you found us but sorry you had to.
As long as your a member of this forum you are not alone. Ask any question you can think of and someone with similier treatment will respond. It's a tight "Band of Brothers" that make up this site.
Please keep us posted as you start this diffucult journey to recovery. Many members have traveled this path and survived and you can to.

All my Best, Danny Boy