I'm not sure if the results so far were worth the effort?

But I can't. There is no guarantee. What I can say is it is worth all the effort you have been through. You will get better, I just can say you will get all of your tast back, you will most likely get most in time, long time. As of right now you are still cooking inside from the treatment. As for what your doctor said I would believe him, as that sounds about right.

I only had surgery and no chemo or radiation. The doctors say that Head & Neck is the second worse treatment you can go through. I had a tumor just above my left vocal cord and prassing on it. It was 3cm x2.5cm the size of a large grape or your thumb from tip to the first knuckle. I even saw the photos. My problem is I also have stage 3 emphysema and I would not survive the surgery and they won't do it. The anesthesiologist won't touch me and I can't survive radiation ether. The only choise was to be cut from ear to ear and remove my larynx and have a neck dissection on both sides and I will lose my vocal cords and breath through my neck. All I said was schedule it. Yes it is very life changing as I could not swallow even saliva for 9 days and I was not allowed to even have an ice chip if I promised not to swallow. I had to learn how to swallow and eat as well as speak all over again. I was licky and have a prosthesis in my neck that I can divert air and speak. Between this and my COPD and bone spirs in my neck I take 19 pills a day and three breathing sprays everyday and have to put 6" tweezers in my neck to clean it and I choak and gag and cough so hard I turn red all the way to the center of my chest every day. The left side of my face from my ear to the center of my chin is numb and always will be. It is worth every bit of it, becuse everyday I can open my eyes and still breathe. [I'm 65 in about 3 months]

The recovery in your case will take just some more time. Instead of days it is weeks and instead of what normaly be a week will be a month or two, it is on a different clock.  You just went through hell and back, and you made it. Please just give it some more time and you will slowley notice things comming back little by little. There is no gaurentees but you just take one day at a time, you will see it was worth it. If you have pain tell your doctor. He will give you something to help, not get rid of it but makes it liveable. I have to take pain pills and muscel relaxers to turn my neck like I used to. You can click on my picture and then go to expressions and can see how far I have come. You will get there as well.

As the saying goes, it feels like you were hit by a Mack truck after this treatment. Everyone heals at a different pace, but for me, mouth sores abated at about one month, sore throat lasted a good three months, and fatigue hung on for 8 months. At one year, there are still some minor swallowing issues and random aches and pains, but life is good. I'm about your age, so I do understand that whole "my life is almost over" feeling, but in a few months,  you'll join the "60 is the new 30" club again. Before you ask for antidepressants,  you might want to ask for your Vitamin D and thyroid levels to be checked as both can cause depression. Try to remember that you are on the upswing now.

I hear you. Yes, there were many nites I looked out on the backyard and said to my wife, " just grab a shovel and bury me back there". To be honest with you, she may have been tempted to. Glad she didn't though. Treatment is tough. Yes, you're probably  a little too impatient. So was I. I'm 3 months out. I've taken advice from others on this board. It just takes time. Taste did come back fairly quick for me. Saliva may take awhile. Hopefuly a year from now this will just be a bad memory for you. When you're 72 or 82 rather than 62, you'll say it was worth it. Hope you feel better. You will, with time. <><

I have been where you are, and from what others of the family have posted, they're saying the same thing I will, recovery is slow.  Things will come back, it will take some time, but they will come back.

I was diagnosed in March of 2012, put at stage IV-a, with a 30 mm primary and multiple nodes, the largest of which was 60mm, my medical oncologist (the voice of doom and gloom) told me that my 5 year survival was 30%, and that the dry mouth from rads would be permanent.  My radiation oncologist was much more positive - and at this point accurate- that my survival rate was more on the order of 70-80% and that my saliva would return.

It has, but it took a very long time.

I've had other health issues before, the most serious was an appendectomy but I was back to normal in a couple of weeks and back to full and unrestricted actitities in just about 6, so to be hit with the after affects of treatment and the horribly slow pace of recovery was more than just depressing. 

my last rad was July 5, I didn't return to work until Sept 4, and I wasn't able to eat any real food until almost the end of September.  It was several more months before I was able to eat what I consider a 'normal' meal, though I still need to make sure I have some form of liquid at hand, saliva came back but not all the way.  I can do the first bite of just about anything without that small sip of water, but anything more and I have to add a small amount of water.  Taste came back too but because of the reduction in saliva, sour is an extremely difficult taste to tolerate.

It is easy to be discouraged, the treatment for head and neck is the 2nd most arduous of them all, so you've been beaten on by the worst, that is over and now it is time to work on healing and recovery.

My 2 cents worth of advice...

Give yourself the time to heal, understand that it will not be magically transformed just because treatments are over.

Stay on the recovery path, this journey is long and you're still in the early part of the trek.

Remember, anything of great value is never attained without great struggle.

one last parting piece, our family of head and neck survivors will always be here for you.

luv_freedom said:

Thank you all for your great advise! I do feel better now. I did ask for an anitidepressant which I just started yesterday. They also set me up with a councelor to talk to on the 21st. They thanked me for reaching out to them so that they could have the chance to help. The lead nurse in radiation took care of it all. She said that so many people try to go through all of this on their own. She said that this is a very long recovery process and I will get better. I had to have a liver transplant last year and thought that I was in the clear and now this happens. That is partly why I'm so upset about it all maybe. Now that I have a better inderstanding of how recovery will come along I feel better.

 

Gary

for help Gary. I'm sure it will make a big difference in how you feel. Remember that we are all here for you, good days and bad days. 

Barbara

Your story is practicallty identical to mine, right down to wondering if the treatment was even worth the effort. Let me tell you from personal experience that things will gradually improve and at some point you will even feel fortunate to have had a treatable form of cancer. I completed surgery in January, and radiation and chemotherapy at the end of April /early May, then went through the difficult physcological and physical stretch you are describing. It lasted until the end of July but then began to turn-around. I still faithfilly carry my water bottle with me but the sore throat is just a dull ache these days. my taste and saliva have improved dramatically since May as has my outlook on life. I'm once again looking toward, and forward to the future. It's not easy for sure, but it's what we are, so when you're ready try to regroup, refocus ,and beat this thing! not only for yourself but for past and future posters of this site. You will be a true inspiration,

stay strong, you've got this!!

mmt

luv_freedom said:

Thanks for your reply. I've now lost nearly all of the sore throat. Very greatful for that! Now I want to focus on starting to eat again and get rid of the feeding tube. Trying to get back to work even though I'm pretty weak I feel that my strength will come back faster if I'm out and doing something rather than sitting here watching the rifleman on tv lol. I had a lot of trouble trying to take the pain pills and they finally had me try fentanyl pain patches this last 3 weeks. they helped some but not much and just made me want to sleep all of the time. I'm not in pain now so don't need them. I stopped a couple of days ago. I didn't use them steady anyway. Now I'm dealing with sweats and chills that come and go. I had to replace my tee shirt twice last night because of sweating. I'm sure it is withdrawals but my breathing isn't bothering me and blood pressure is all good so I'm going to keep going without and use tylenol and ibuprofen as needed. Actually it's getting better already. This feels like a bump in the road compared to what I just came out of.

Fentanyl is stronger than morophine and you need to be weened off of them or you can have major problems. Also it is to be used with other pain meds, very rare to be used alone.

Glad the pain is gone. If wou are sweeting that much you should make sure your main doctor knows. You will need to increase your water intake to compensate the sweating.

luv_freedom said:

bad idea

Bad idea! I learned very quickly last night what withdrawal really is. My whole body was jumping like I had tics  and I couldn't sit still for 10 seconds. I wish I could have video recorded it! LOL. After about 3 hrs of it, I finally did what my doctor's nurse ordered to begin with and took an oxycodone tablet. All the jumping went away finally after the pill kicked in. About an hour, maybe less. So my orders are to take 3 of those today and tomorrow, 2 the next two days, and 1 the next two days. Then I can go back to using tylenol and ibuprfen. I thought that the sore throat was gone but found that even though its much better, it was the fentanyl that was masking it. Finally kicked in I guess. Was so slow and easy that I didn't even realize that it may have been the patch working.

Dima use 100mg patches. The doc made us decrease the strength little by little. He said it was dangerous to decrease the strength too fast or all at once. Please be careful!  Once he was off the patches, Dima slept less and had more energy.  I know it is hard and you probably have heard it enough: It gets better. You just have to be patient. it took a while for taste to come back and to this day, he won't touch some food he used to love. He says it taste different. But he has found some new food to like! think about all the dishes you can try and of future favorite dishes you may discover.