John, IT WILL GET BETTER! I know it doesn't feel like it will right now but it will. When my husband was having the same issues as you are with not being able to talk I searched on these message boards and I couldn't find anyone who had the same issue. John's issue wasn't the pain it was that the mucus would make him gag and throw up if he tried to talk. John always had a cup next to him to spit the nasty mucus crap out of his mouth. As a caregiver it was a very lonely time for me because I am used to sharing my day with him after work. John has his own business and couldn't work for around 3 months because he couldn't talk to his clients. We used to send each other e-mails during the day to communicate.

I think it would be very helpful if you kept a timeline and a journal. I kept one on my computer in a word document. I go back and look at it and refer to it when people like yourself are looking for help and a timeline reference. When you are healed and over the immediate issues you will be able to help others who are just beginning their journey.

The feelings you are feeling are totally normal. Cancer and it's treatments are depressing. I'm sure my husband had days where he felt exactly like you do. Sit outside and enjoy some sunshine and warm breezes. Wanda

You can write... Its all about adapting and making do at this point - did I suggest a water pik to you? If not try to get one... put some luke warm water in it and a bit of mouthwash (preferably ALL NATURAL - and definitely alcohol free) a capful, and on the lowest setting possible use it to clean out your mouth. It really helped me with the saliva and helped me feel fresher... plus keeping your mouth clean helps stave off infection, and heal. (they have different heads... one for along your gums and one you can use to clean your tongue and all those little areas inside your mouth. Mine was invaluable and I still use it. I also used to carry around a rag to spit into. I used to walk my dog and spit on the way... anything to get it out. Buy club soda, flatten it and drink it... it cuts up the saliva and helps hydrate you - plus it helps you heal (the sodium bicarb in it is a healer)

I understand your frustration and that you feel down because you can't talk right now.. but the you're alive card is a valid one. You haven't met Nate - he's a musician- and a great guy and 25 years old. He's had two recurrences - numerous surgeries - and he was told just two days ago, that there's nothing more they can do for him. His family is devastated, as I am sure he is. It's heart breaking. Last year - a 22 year old woman - Samantha, with an 18 month old daughter faced 3 recurrences in 2 years. She went into a hospice, 6 mos ago and died shortly thereafter. Then there was MTLisa who was also in her twenties had to have a FULL GLOSSECTOMY (in other words no tongue, longer recovery period, and a speech impediment for the rest of her life) and she just passed away a few months ago. Even with all you are going through I would bet that any of them would rather be in your shoes now as opposed to facing no future at all. What you're experiencing now is temporary. It will improve. It may never again be 100% but it will get better - 80%? 90%? Sometimes people up to 3 years out note improvements. Usually it takes one month for every week of radiation... so that puts you at 7 mos to feel a lot more like yourself so you have to have patience.

At this point you are suffering - we've ALL been there... the thick saliva - the pain- difficulty eating, sleeping, talking, trismus, swallowing issues, dental problems, disinegrating jaws (yes... if you don't take care of your oral health, and do some kind of therapy to help return circulation to the radiated areas - you can suffer from osteonecrosis, jaw replacement etc. and fibrosis) the drooling when you speak... ALL OF IT. Nausea, gagging, hair loss - on and on.. my advice is read up here on the fallout of radiation... there is a lot of information. Educate yourself on what you can do to NOW minimize the future damage that can be caused by it... that may include acupuncture, lymphatic massage (which you can learn to do yourself) Physiotherapy, and maybe adjust your diet to help you heal faster (high protein etc..) focus on getting better. Getting back to your old life is your ultimate goal, but it's going to take time. And never say the "you're alive" card isn't enough because you might just get what you ask for.

I know that all seems rather harsh but I'm just trying to get you to see that despite everything, you are lucky. You have a chance to heal and walk away from all this at some point. what you've been through is traumatic, and it will take time to get better. Instead of dwelling on the things you can't do, try focusing on doing the things you can. As for a support group... it's not all about talking.. it's about just beig there and to know that others have been there and come out the other side. take care.

Cheryl,
You said it so well! You, too, Wanda. Yes. It will get better. You probably won't ever be exactly the same, but think of positive things coming up in your life...the show tickets, just to name one thing, for example. I am nearly 67 years old, had stage IV when I was diagnosed, and had surgery, radiation, and chemo. Was it awful? Yes it was but I am still glad to be alive. I retired a little over a year ago and I volunteer for my church, my Kiwanis club, and just became President of our local Friends of the Library, which I actually started. Three years ago I was just beginning radiation and it was the worst summer of my life. I'm not 100% and I don't know if I ever will be, but for the most part, life is good. You have received some very good advice here, please listen to it! You are young, and that really is in your favor.

John of Arc

[quote]I guess it just isn't comforting when I hear people are a year out, 3 years out, 6 months out and still feel this way. It's not encouraging.,,,,And it's even more frustrating that no one else seems to have experienced this problem. [/quote]
First, you probably don't realize this, but posts with anguish like the quote above, really help many other readers on OCF. Most of the OCF members just read not post yet almost all of the newer members have feeling like you express. So thanks for being willing to spill out your heart here, saying what many others think but don't say for many reasons (fear of being seen as self-pitying, naturally stoic, etc etc.)
While I have no easy solution (or actually any solution) to the existential issues you raise, I did want to address your frustration about the mucous and speech. There have been literally hundreds if not a thousand posts complaining about the thick mucous or not being able to speak so on that point you need a major reality check. Its extremely common not some unique burden placed upon you. But I know that from being on the OCF forum so long and reading not only the threads that were there when I joined, but searching through the archived threads.
It's your first sentence that explains why the mucous and speech thing is not a continued subject. I worry all the time that I would be discouraging a new patient or scaring them to death if I went into detail about these type of issues that I experienced. And I am not even remotely as sensitive and caring as all the other posters here when it comes to telling the truth. I try to focus on what got me through them and share that.
Trust me that we know just how bad it is not to be able to talk without choking on mucous. But it did get better for almost all of us.
Last but not least, [quote]It's days like these I wish I had made a different choice[/quote]. Let's explore that: you could have chosen no radiation. Then your cancer would have come back and you would need extensive surgery or else just die. If you chose to fight and survive, then you could have these devastating mucous & speech issues not just for 2 months but for the rest of your life. You could wake up 4 to 5 times a night, unable to breathe, run to the bathroom to gargle and spit out the mucous that is literally choking you to death. You could be unable to use the telephone most of the time since no voice recognition unit nor the majority of people understand anything you say. That's my life. (and I used to be a spellbinding orator)
The odds are very very good that the above will not be your life. Don't give up Hope. Of course you are impatient and angry. Now understand me, I don't want you to stop posting your fears, your concerns. As I started up above, you are helping other OCF members who feel just like that but can't or won't express it. I just want you to know that you are not alone in your suffering and that we have been there and done that and are still having good lives. So hang on to HOPE
Charm

Thank you ladies. I needed your support. Today was one of my darker days. I'm just so worried that as time clicks away I'll run out of fmla and lose my job. If I use up all fmla it give me until about the middle of July.

John you really will get there. In another month you will be amazed at the progress you make. Bottom line is your nutrition. Yep thats me with my broke record again. Nutrition and hydration play an integral part in your recovery. Keep doing the 2500 calories and 48 oz of water every single day and get extra protein to help speed your healing.

It really will get better. By now you should be seeing some improvement if you compare how you feel now to how it was when you first finished rads.

Lastly, please take the survey I have been posting about. This will give the right ears a chance to hear all that you have to say. It will not go unnoticed. Every single survey counts and is important to how future oral cancer patients are treated. By doing the survey you will be helping others which can help you to deal with your health problems. By volunteering and giving others a hand, it will help you to feel useful.

Wishing you all the very best with your continued recovery.

Jon its true you will feel better and I understand your financial concerns I really do, it sucks.. But you will get by -

Jon its true you will feel better and I understand your financial concerns I really do, it sucks.. But you will get by - money is important to us all.l
But even if you have to get another job - it will happen. Healing first

Hey John,

Like I said - I just went to my first support group and you'd be surprised who is there. They have all walked in your shoes, if not worse.

At the group I met a guy who had cancer in his larynx and had to have his voice box removed. He cannot talk for the rest of his life and was still there.

I also met another guy who they told me was on a feeding tube for so long that he thought he would be on it permanently. Well, I guess the group decided to have a "soup night" and the feeding tube guy finally was able to eat for the first time at that special event.

Support groups aren't for everyone - but I learned something new when I went. And Im all about putting faces to names so I really liked it. The guys there never heard about the OCF - so it may help you connect on a different level. They may be able to offer some job advice - or possibly lead to networking opportunities - you never know.

Funny thing is I used to be a very negative person. Would always say "no" to the point where friends and family were like "you need to watch that movie Yes Man" Now I choose to be open about things.

What do you have to lose by trying? Do you have any type of smartphone or iPad that allows apps? There are apps called "type to talk." Get creative buddy!

Hey John,

Just wanted to give you something positive to think about. I am only a few months ahead of you - I finished radiation on 1/13/12, plus I had a little over half of my tongue removed and reconstructed (so my recovery time was even longer), and I have been back at work full time since April 30. In fact, I could have easily gone back at least a month earlier, but I wanted to take advantage of my short term disability and heal completely. Also, I have to travel every week to a different city for my job - which is tiring for anyone - and I am doing great! My fatigue isn't bad, no pain... my only complaints really are my speech and dry mouth. And you shouldn't have much problems with your speech, so you should bounce back in no time! I really do feel like my old self again... physically at least. As soon as you start thinking positively, it will get better. The first few weeks after radiation are the worst. Just take your pain meds, sleep, and relax until you start feeling better! You have your whole life ahead of you, a few months is nothing. Don't forget that age is on your side here, being 25 you recover a lot more quickly than the normal person!