Welcome Deb!

I'm so glad you found this site and you are getting everything in order so that you are more equipped once treatment begins.

I like the idea of printing out little posts here and there for Bob to read.

Make sure to take some time for yourself as well.

I would start the disability process right away!

Deb - When you and Bob go to your appointment, it might be helpful if you bring someone else with you. Often when we are under stress it's not easy to remember everything the doctors have said and having someone else with you will help you compare notes about what was said or recommended. It's good your appointment got moved up. Also write down all your questions so you can get them answered. When I went to my son's first appointment with the ENT, my daughter was with me and later appointments other people came, too. They can provide support and encouragement just being there. It helps to get names of people that you talk to so you can call them later if you have to. It's good that Bob has such a caring person as you by his side. You can get through this!

I think he needs to be unemployed due to illness for at least 6 months before he applies. I could be wrong but I know there is a timetable he must meet to be eligible. Please dont think of it as something he wont bounce back from. I returned to work every time I had OC. It just seemed to take me longer and longer to bounce back after each episode. Think positive, this is a temporary bump in the road and next year this time he will be wonderful

Here is a list of soft foods that might help.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Bob and I had a long talk last night, with many tears. He is ready to get this started. We made a list of a few questions that I know are on a personal level and that each person will handle a little different. With that being said a general idea of what to expect would be greatly appreciated.
First, What are the side effects of radiation? How long do they last? Are there any side effects that probably wont go away?
With that being asked, What can we do to manage these side effects?
As for a feeding tube I am sure he will need one, will it always be uncomfortable as it sounds?
I know ther is some type of mucosa (if I am spelling and saying it right), Will he have a hard time with this, and is it a lasting side effect , and if it is Bob said to ask how often will this mucosa will come out in a days time?
These are hard questions to ask but like Bob and I talked about last night better to be prepared then to scramble at the last minute. If there is anything elce you all can offer before next week starts please let me know. THANK YOU is not enough but it comes from my heart so THANK YOU

Deb,
Keep that list going and take it with you to the doctor. The effects of radiation are different for everyone. I had radiation before my surgery at a local hospital where they determined that my growth was compromising critical organs, ears, eyes,etc. I was referred to a CCC after radiation & chemo and both the PS & ENT are skeptical of that original decision to do radiation. They both wish I had seen them first because the damage from radiation has made their job more difficult than it should have been and the outcome would have been so much better. I was too scared and too uninformed to ask about a 2nd opinion. Side effects vary and can last for years. For me, trismus has become a big issue only recently after my last surgery. The inability to heal quickly is another side effect that many of us suffer from. I also lost a lot of weight from the combination of chemo & rad., but he will gain it back.
As with all your questions, everyone has a different experience. For me, the feeding tube wasn't so bad the first year. I had it replaced after more than a year and the 2nd time, it was botched. (The CCC insisted I go back to the local hospital that initially put it in...big mistake! I won't go back again to have it fixed.) More importantly is how much Bob is eating now and going forward. You mentioned giving him Ensure but I don't believe there are enough calories in Ensure alone. He should be getting a least 3000 calories a day. There are others in OCF who are more well versed on this than I am.
As for disability and any other services or benefits you might be entitled to, apply for them all now! It can't hurt and you might be surprised. The hospital might also be able to help you or suggest things you don't even know about.

Like so many others in the forum, I believe your best course would be to go to a CCC and I have to believe the VA will refer you if you ask. I didn't think I was "eligible" because I am a charity case. It was only after my local hospital couldn't help any further that they referred me to a CCC, my point being that if I had known, I would have asked for a 2nd opinion prior to radiation.

Best wishes and keep those questions coming!
Pat

Hi there,

The PEG tube hurt initially when I first got it in but it faded after a few days and once I got used to it - it wasn't so bad. You definitely lose your appetite during radiation and chme so it made me a feel so much better because I could get nutrition in. Eating was a chore because I was learning to eat again and it really hurt my throat- so it was pretty unappealing at that time.

Radiation to the head and neck area is very difficult. It was a slow decline for me and somewhere around 3-4 weeks in I felt the effects more strongly. The lining of your mouth and throat basicially sheds off creating a thick mucuous.
Its kind of like what happens in ghost busters when they kill a ghost... its just this sticky stringy mucous. Its kind of nuisance and uncomfortable. At one point it made me very sick to my stomach.. swallowing the mucous but it didn't last too too long. Like I said it was uncomfortable for several weeks. I was tired and worn down after the radiation finished for about 2 weeks and then things started getting better.

It wasn't fun but it wasn't as bad as I had anticipated. The doctors will be monitoring him closely. When I got too dehydrated and weak they would bring me in and just hydrate me which made me feel 1000 times better.

It is very very important to just power through the treatments and be strong. The first chance is the best chance you have to beat this disease once and for all.
When this cancer reoccurs it can be difficult to get rid of again. If you can iradicate it from the system completely the first time its much better.

Hang in there. I know this is a shock but it can be done. A year from now he will be doing lots better.

As for long term effects. i have some broken capilaries on my neck from the radiation and my neck was very very very stiff for a long long time. I've been working with a chiropractor and do yoga and get massages regularly. All of these things have all helped tremendously. This year (3.5 years later) I've really made major strides towards almost feeling like my old self again (accept for my speech- which is OK).
I have a lot better range of motion with my neck.

Life will be good again for you both soon.
Take care and be strong.

so radiation has side effects, but the affect everyone differently. Some people get all of them, some people get none of them and some people are in the middle. Also time wise of when they happen is different with everyone as well.

The side effects he will almost certainly experience is loss of hair in the area radiated, sores in mouth/throat, thick saliva, dry mouth, peeling/sunburnt looking skin in radiated area.

For these there isn't much you can do about hair loss. I lost it in the back of my head and i just got my hair trimmed so it stopped falling out so much. Sores in mouth/throat, well for sores in the mouth, they suggest you use water, salt, baking soda mix and it helps with relieving some of the pain from the sores, helps make your saliva not so acidic, and also helps thin out mucous for a little while. Thick saliva (sometimes referred to as mucous) starts when your salivary glands functioning starts to slow down. When they radiate your mouth, it almost always affects your salivary glands below your tongue, and they start to dry up and that's when you get the dry mouth, then thick saliva. Anyways for that they do sometimes say mucinex helps, it's a over the counter medication, but can also be prescribed, otherwise if he keeps drinking as much water as he can and rinsing with the rinse it helps too, but nothing clears it up completely. I was nauseated the last 4 weeks of radiation, but everyone is different.

He will also experience different levels and types of pain from radiation, but the doctors should be monitoring him and helping him manage the pain with medications. Common pain meds used during radiation are fetanyl patch, percoset, oxycodone, and dilated, but it depends on the doctor and what they prefer to use or think will work best.

As for disability. I had my surgery in april and in may as soon as I could get an appointment, I applied for social security disability and social security insurance. I found out around end of august that I was approved, but I had to fill out a bunch of paperwork before that and after I applied.

He should apply for both ssi and ssdi because ssi won't start for 5 months, they will start paying the 6th month but it will technically be 5th month payment. ssi will pay usually a lump sum of money to cover the months before ssdi paid for, but it's a lesser amount. I got my ssi end of august/early september and then started receiving disability october 1st.

Usually a social worker in the hospital can help you get the ball rolling on these and other applications, like for medical insurance programs if you don't have any and stuff like that. But if you are like me, and the social worker didn't even stop in to see you while you were in the hospital, then you can call the social security office near you and set up an appointment to do the application, or can do it over the phone sometimes.

I hope this helps a little bit at least. Hope the appointment today went smoothly and you and bob got more info and feel a little better about what will be happening here and soon. I know once I knew what was going to happen I felt better a little bit, it was better then waiting to find out.