You know, when my radiation and chemo was over I was very tired but was happy that it was over. Then I had my neck disection and it just slammed me on my back harder than anything ever has. I have come a long way since then but things still arent the way I was hoping they would be. I did go back to work and Im not so sure that was a good idea but I had no choice but to do so or lose everything. Then I went in to have my trach tube taken out and they found scar tissue caused by the trach tube that had to be removed. I was like, ok, I will have this done and wake up without the tube. Wrong !!!!! There was swelling and they thought it best that the tube stay in until the swelling went down which I agree with.My neck is as tight as a drum and some days it is so hard to even lean my head back. My swallowing does seem to be getting much better.

The point Im trying to make is that everything just keeps going wrong. I am so down in the dumps that I cant stand it. Some days I ask myself if it is still worth going forward.

I have an appointment with a psychiatrist and counselor this Wednesday and I am hoping that something will start to change for the better after seeing them.

The main question I have here is like the thread title says...DOES IT EVER END????

Billy

Billy, Yes, it will get better. Will it end? tough question because I feel we all will have to live with this always. I'm not meaning the cancer, just the journey we have been on. I'm one year and about 4mos. post treatment, and I feel great. It took me about 8 mos. to get back to work, and I honestly wasn't as healthy as I am now. So maybe you need to give yourself some time to heal. You do have a good bit of obstacles to overcome, but you'll get through them. Don't give up, you've shown such strength getting through the treatment and surgery, try to get through this. Talking to someone will definetly help. Take care of yourself, and keep telling yourself it will get better. Linda

Billy, I have to say NO it will never end. But the "minor" problems we will have is far better than your chilren not having you or you never seeing them grow up.
I am 3 years out and yes it was worth. My baby is 3 and she has me. I too have the stiffness but mine is due to the extensive amount of radiation. Have the docs considered P/T? I have no saliva and yes I can't eat normal but I have eat normal for me now. I had a bout of depression but I did not see a doctor so I glad you are. You will get through this.

Billy---you'd been so upbeat and positive and sorry you feel so down now.
Glad you are getting counselling and possibly medication.
For me, yes it will end---in death---for lots of others here giving support---they'll tell you and you can read how many years they've survived and how much better it CAN/DOES get.
Just tell yourself every day,you've survived the treatment, you're still here, you've people who love you---how much luckier than that do we need to be????
And we're all here Billy,

Brenda x

Billy, dear friend.....I can't even imagine what you, personally, have gone through these past few months, but I DO know that whatever you have suffered beats the hell out of the ALTERNATIVE!
Buzz is going through similiar depression symptoms, to which I can relate. All I can do is encourage BOTH of you to try to imagine your lives a year from now, not tomorrow or next week.
I believe, with all my heart, that these trials will strengthen you both. Just know that you are in our prayers...and keep us posted, as we DO care about you and yours...

Lois & Buzz in NC

Billy

I think in some ways it ends or we become used to it !! LOL I dunno , The fact that you are gettting counseling is such a big plus !! I know it has helped and does help me. I feel the same was as you sometimes. I had finally went back to work for like 3-4 weeks only to be out for 8 weeks with a total abdominal hysterctomy ...ughhh then I get an infection 2 weeks outta surgery and need a new biopsy .. OHh well enough about me ..JUst seems like it is always somthing...
I think I am trying to figure if life was always that way and I am just more sensetive !! BUt As I said SOO SOO happy you are gettin the counseling . And we are always here for each other ... TO me that is worth more then alot of others things !!

Shar

Hey Billy,

It doesn't end. It just gets lighter and less of a load if you are lucky enough to stay cancer free. I spent four years cancer free and while I was thrilled that I didn't have anymore cancer, I still spend a part of my day feeling sad and wishing for my "old self" back. This type of cancer and it's side effects won't allow us to forget that we had cancer. If I had been through breast cancer, I think I could spend good chunks of time forgetting about it, I'd wear the scars and effects of it under my shirt. But we with oral cance wear our scars on our face and the after affects of treatment affect our mouths, a part of our body that we take for granted.

Go talk to someone, get on some anti depressants, and I CAN promise you that things will get better, so much better thaty you will want to cry with joy about it. But it won't ever end.
Minnie

Does it ever end Billy? no i dont think it does,but like a man with a glass eye,you refocus and adjust your perspective to encompass the new passenger you are carrying on your journey through life.Somedays it will be a quiet companion and then some days it will be a monstrous pain in the butt that makes you wish you stop your journey and kick it out once and for all.

dont lose heart sweetheart.

lobve liz

Just echoing what others have said. For me, it is adjusting to the new normal. That includes a really tight neck, muscle spasms in the shoulders, some lymphedema, need to dring water with lots of foods, reduced taste. Oh yeah, add in the repeated visits to the 3 oncologists (surgeon, medical, radiation), the anxiety over scans and results and some skin issues that need to be addressed.

Would I trade these for the alternative, which is not being here at all? Nope!! I can do pretty much anything I want to, and just have to be aware of different things and work a few more things into the schedule.

I deal with depression from time to time, but it is getting better. You will get there, just be patient!

Billy,

I have been through two and 1/2 years of it not ending, although I am so far (knock on wood, ENT checkup tomorrow) cancer-free. I have had espohageal strictures, a stent in my throat, dilations, recurrence scares and have severe trismus and swallowing problmes and will probably eventually have severe dental problems if I live long enough to have them. I have had a lot worse stuff to deal with than most people, on top of it I have a husband who keeps emotionally abandoning me whenever I'm at my most vulnerable and recently my father died.

All I can say is the alternative to it not ending is death, and even though all this stuff just sucks lots of the time, I'd rather be on this side of the grass.

I know if you are depressed this can be hard to hear but the secret to getting through things for me has been gratitude for the things I have--and a willingness to accept that grief, sadness and loss are a part of life and I love life even with all those things in it. I had a very good counselor for a couple of years, who I stoppped seeing simply because things seemed to have stabilized a little this summer, but I know she's always there if I need her and her support has been invaluable to me.

Nelie