Why can't I just accept the fact I'm sick and need to get well.
I feel like I'm pushing myself everyday to get better at an unrealistic rate because I'm afraid everything is passing me by.
Before cancer I lead a really active life and never thought about it, never even looked at it that way. I work Monday thru Friday as a preschool teacher and did community theater almost year round and now it's like my life is on pause. And it's driving me crazy.
I read people's responses to things I've posted saying "9 months out" "a year out" a part of me would rather die than me trapped that long.
A part of me feels cheated. Like every possibility wasn't presented to me about radiation. And I know if I had known it would have done this to my body and taken away any kind of quality of life I wouldn't have even considered it.
Yes. I know I'm alive...but Somedays that's all I am. Functioning.

John...you sound like me. You just have to be patient. Remember youre only 6 months in. Give your body and mind time to heal. I remember feeling like that about radiation too. Ive been through 2 heavy duty surgeries radiation and 2 series of Chemo and I think the radiation was the worst. Some of us breeze right through it and some of us have a horrible time of it. sending hugs your way.

I feeL that way, too, sometimes, and I'm three years out! This is probably one of the worst kinds of cancers you can get, and even some of my friends who have had breast cancer have no idea what my situation is. I find myself almost jealous of those who have had breast cancer, because "our" cancer doesn't get nearly the publicity that breast cancer does. Usually, I can remain pretty upbeat, when I am with my friends and family, but at least I can vent here. Brian's quote about our mouths is really on the money. John, I know that nothing I can say can possibly make it "all better" but please feel free to vent here as much as you like. Everyone here has been where you are, and there are so many others who have had it so much worse. I try to take my inspiration from Christine, Charm and Eric. They make me feel very humble!

So normal Jon. If you think of the grieving process of which a large part is anger, you reaction is perfectly understandable. Add to that, your life has changed, and you feel cheated because your expectations weren't managed. Even if you were told, you could not have been able to imagine the reality.

It all feels so overwhelming right now - not only because you were not prepared but your body is putting all it's energy into healing which makes if very difficult for you to be grateful or positive to be alive. But it will come.

I suggest you continue to vent, but also write down what you are feeling every day and slowly you will come to realise that your "bad" days are not coming as often and soon your good days will outnumber them. One day you will realise you can't remember when your last "bad" day was.

Lastly, consider some chemical help. Antidepressants smoothed Alex's path during recovery as he found it exceedingly difficult to come to grips with the sheer enormity and shock of what had happened to him. And who wouldn't?

John the reality is this... This will always be with you - diligence is your new best friend. you have to be on your guard with regards to oral care, what's normal etc for the rest of your life. It sucks, but that's the way it is, eventually things will heal, you may have some residual damage from the rads etc... The extent of which is up to you - I went for physio, go for acupuncture, and learned lymphatic massage. To try and get back to where I was before all this. I'm at about 85 % but you adapt. All this may not solve any future problems I have but I'm certain it's helped get me to this point. You may feel ripped off by rads and the fall out etc... But the other reality is... Despite all you've been through and all you may go through... You're here to experience it. There are a lot of people who aren't. The radiation may very well have saved your life by preventing a possible recurrence... Ive been told by a radiation dr that it cuts the odds of a recurrence in half. Since this cancer can be very aggressive - Radiation was a good choice... And the drs suggested it for a reason... There had to have been a reason... Possibly the aggressiveness of the cancer, involvement I don't know, but they don't take decisions like that lightly. Chances are you've lost a few more months of your life to this... But you will eventually crawl out of the hole your in and thngs will get better. I was insanely grateful that it only ate up 6 mos of my life, I know people who have to do chemo for the rest of their lives (I have a friend wit incurable peritoneal cancer who spends two days of her life at the local ccc - every week. And once a month she has to go have 3 liters of fluid drained from her abdomen), and there are others who as one of the other posters here said, are getting treatment just to live another day. I am super busy and super active and am final back functioning at s normal level and it's been 13 mos since radiation. So it takes time. Patience. give yourself a break.

John, ditto all the good advice you have gotten from other surivors/caregivers. I am EXACTLY one year ahead of you, and am living proof that it does get better. Someday this will all be just a memory for you, and you will remember how far you have come and how truly blessed you are. As zenga...said, there are others who have suffered more and are back here every day inspiring others. One day YOU will be one of the survivors giving hope to others.

I have just spent the last 2-1/2 days with Eric Statler, who is about the most amazing unselfish person I have ever met. He was dealt a horrible hand, and chose to keep on going and work with what he has left, not dwell on what he once had.

Eric, Charm, Christine, Chuck Feeney and others are all my heroes.... they stories kept me going when I was feeling like you feel now.

Please consider some short-term anti-depressant assistance as klo says. Talk to your docs...you need to heal your body and use whatever is at your disposal to do that.
Wishing you the best.

Cheryl - youre always so positive. I love it!

John - I'm not sure exactly where you are up in NY, but have you heard of SPOHNC? They have local chapters all over. Im going to my first meeting on Wednesday - and will undoubtably be the youngest there and I know its not fair that we didnt "earn" our cancer but personally for me it was a wake up call - to live a more meaningful life. http://www.spohnc.org/local_chapters.php#ny

Hang in there buddy. Stay strong and trust that there are better days ahead!

Johm, you have been given some good advice. I am three years out, and still feel the same way.

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. I only have until the beginning of next month to go back to work and I still can't talk without being in pain or being uncomfortable. I can talk fine when the thick excessive saliva is out of my mouth but that only lasts about 2 minutes if i'm lucky. And it's even more frustrating that no one else seems to have expirenced this problem. It's days like these I wish I had made a different choice. The "but you're living" card isn't enough. I'm alive but every minute of everyday is a fight. I don't want this. They might as well have taken my tongue for all the good its doing me now.
Its completely unfair.

[quote=glocita]Cheryl - youre always so positive. I love it!

John - I'm not sure exactly where you are up in NY, but have you heard of SPOHNC? They have local chapters all over. Im going to my first meeting on Wednesday - and will undoubtably be the youngest there and I know its not fair that we didnt "earn" our cancer but personally for me it was a wake up call - to live a more meaningful life. http://www.spohnc.org/local_chapters.php#ny

Hang in there buddy. Stay strong and trust that there are better days ahead! [/quote]
It wouldn't matter if there was a support group. I can't talk. I can't tell anyone anything. I'm trapped inside my body

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!

I concur with what everyone has already said, it will get better. Since I have nothing to add, I wil just give you a big ole' cyber ((hug))!!!!

Jon,
Just want to add that a woman two years older than I am was, who is from my town originally, was diagnosed shortly after I was. She has had a much rougher time than I have had and has a trache and a feeding tube. She actually had a recurrance so is still having chemo. She can't eat or talk (she uses a computer to communicate) but she doesn't let it get her down. She goes out, attended her high school reunion, and keeps very busy. Her emails to me are very upbeat and positive. She is really an inspiration. She is living her life to the fullest and certainly hasn't given up.

Hi John, I wasn't the patient, my brother was. I was good at being a support person, but I KNOW I couldn't have withstood the radiation treatment if it had been me.

From my perspective he had a terrible time, but probably no worse than most on the forum. I spoke to him 2-3 times a day, and he would often say he felt he had been massively assaulted,and that he was separated from everyone else, that no-one could truly understand the brutality of the treatment (on top of the normal distress of a cancer diagnosis). I certainly agreed with that, and tried to get him onto the forum where people DID understand, to no avail. He truly felt "struck down".

And now he's seven months out and doing great, with only the lingering annoyance of a dry mouth.

I'd concur with Christine's suggestion about hydration and drink at least 2 litres of water a day - this was critical to my brother's recovery as he also had a kidney condition; try to go for a walk everyday, and consider klo's suggestion seeing about some medication.

John, dear, you will get there. Make your reference point for improvement what you were like yesterday or last week not what you were like before treatment.

John,

I hear what your saying. I'm only a month ahead of you in this nightmere. I have had the same issues with mucus and not being able to talk. I used Siri on my phone to talk to my family and Dr.'s. Everybody says it will stop but I also wondered what if it doesn't? Well two weeks ago the mucus stopped. I can now talk! Now I'm dealing with dry mouth. I'm still using the PEG but have cut down on the amount I put in there. I am now eating some food but it is a real challenge trying to find something that tastes ok. I have even been doing some yard work. I get tired very easilly but my energy is getting better also. If I look back I can see how much I have improved. Hang in there.

Doug, not to change this thread but I found sweets and anything with gravy or sauces satisfied me the most in my early recovery stage. I also drank a can of VHC with milk (half anf half) with each meal to boost my calories and essentials. I tried for 3000+ calories a day.

[quote=Doug G]John,

I hear what your saying. I'm only a month ahead of you in this nightmere. I have had the same issues with mucus and not being able to talk. I used Siri on my phone to talk to my family and Dr.'s. Everybody says it will stop but I also wondered what if it doesn't? Well two weeks ago the mucus stopped. I can now talk! Now I'm dealing with dry mouth. I'm still using the PEG but have cut down on the amount I put in there. I am now eating some food but it is a real challenge trying to find something that tastes ok. I have even been doing some yard work. I get tired very easilly but my energy is getting better also. If I look back I can see how much I have improved. Hang in there. [/quote]
Thank you. This is exactly the kind of hope I needed. Still struggling with the idea that it will ever get better. :0/

I'm having one of those days where I just don't think it will get better. That this is it.

Hi, John
referring back to my email updates that I sent out last year for my husband, I find that he was still pretty miserable and frustrated three-four weeks out, but was noticably better at five-six weeks out. Don't lose faith - it takes time to heal.
Best wishes,
Maria

[quote=Maria]Hi, John
referring back to my email updates that I sent out last year for my husband, I find that he was still pretty miserable and frustrated three-four weeks out, but was noticably better at five-six weeks out. Don't lose faith - it takes time to heal.
Best wishes,
Maria [/quote]
What got better for him?

Everything gets better slowly it just takes time.. Everyone heals at their own speed. I remember I had the mucousy post nasal drip - it would hit the back of my throat and feel like acid. Then one day I cringed knowing what to expect and it didn't hurt. It does get better - hugs!

Hi, John -
Let's see, for starters, his energy level improved: he was able start riding his horse again. The increased physical activity helped his brain chemistry and let him feel better emotionally. When he started, I would tack up his horse, he would ride for aabout 20 minutes, and then get off - exhausted. He would rest and I would put up his horse. Basically, he would push himself a bit, and then rest to recover.

His eating slowly improved - we started adding baby cereals to his protein shakes little by little to add something that would stick to his ribs and be sustaining. We also began to add whey powder for extra protein, which I would highly recommend.

Slow but steady wins the race!

John,

Trust me when I say, you are among people that understand in a way that no one else can. It almost killed me laying in a bed for 2 years being dragged down by massive amounts of opiates, side effects, and my own self pity. I'm thankful for the beautiful souls on these forums that helped me through that time to the other side of it.

Now don't get it twisted, I will never be the person to say that survivorship is easy, I don't shovel bullish!t for a living, but I'll tell you that I enjoy life today more than I ever did before cancer. My advice to you is to keep plugging into the survivors and caregivers of this disease for advice and inspiration, build relationships here to help you until you get your feet back under you. I'm a huge believer in hope, and live by a quote from Nietzche, "He who has a "why" to live can bear with almost any "how"." Find your why John.

My biggest "why" was my family, I have a wife and two young boys that made me straighten up, broaden my shoulders, lower my head and push through this sh!t anyway possible. I used nutrition, exercise, and daily motivations of reading, these forums, music, movies, chemical assistance etc to build up my spirit and keep me from succumbing to the darkness of the situation. When you're ready to do that, remember that it's a choice. The few choices we have on this path really.

My question to you John, is are you going to let this bullish!t beat you or are you going to fight back by making the choices I've described above? I've used these forums to express my feelings of vulnerability, fear, and anger...but also those of triumph, joy, and happiness. Lay it out brother it's what we are here for. When you are ready to fight back to get to the optimum new you, let me know player as I'm here to help with advice on nutrition, exercise, books, movies, and music.

3 years ago today I was on an insane amount of fentanyl (strongest opiate available to humans, roughly 100x stronger than heroin) and had to use a walker to get from my bedroom to my living room down the hall. Tonight I was asked to go down and help train some local amateur mixed martial arts fighters preparing for their upcoming cage fights....on top of all of the other cools sh!t I'm blessed to do, many of my exploits I share on Facebook.

Keep your chin up John, hope is all we have my friend.


Eric

I feel for you so much, so much. I also felt like I was not told how horrific treatment is, how it would bring me to my knees, and how hard recovery would be. Were they protecting me? I don't know. I ended treatment on 3/21/2011 and it took one month before I could talk and two months before I could eat by mouth - even a little - and three before I could make it through the day without pain meds. Just the other day I told a friend that when I was in the middle of treatment I said to myself that I wouldn't put myself through this again if the cancer came back. Of course, now I would because I know that healing happens. It is slow but it happens. YOU WILL HEAL. You will. I promise you. You will get your life back and it will be a deeper life because of all you endured and survived. -Michelle