Very long story, almost twenty years since the first diagnosis. I'm one of the 5 to 7% that fall into the "genetic" category. (Non smoker / non drinker / non HPV.) Not really the lottery I wanted to win, but here I am.

I'm two years out, (plus a few months) from my second go 'round with oral cancer. This last bout left me unable to swallow / and a fairly severe speech impediment.

I'm lucky enough to still be able to work full time, around 50 hours per week, but lately I'm really feel like the limited energy I have on reserve is reduced with every passing week.

I never complain about anything. I feel grateful for each day. My wife and kids are supportive. My faith is strong. I have everything I could have hoped for in life..........

Why do I feel like a shell of my former self?

Is this common?

Brief history - I was very active before my first diagnosis of SC. Skiing / White water rafting / weightlifting / mountain biking / etc. I was "that guy" going through the initial radical neck dissection / chemo / radiation / etc. it was tough, but I was in my early thirties, just married, and physically and mentally strong. After completion of the radiation, I was back to work and within a year I returned to the gym and was leading an active life again. Fast forward 17 years, two kids, coaching youth sports, renovating an old house.....happy life when the second diagnosis happened. This time it was much harder and the long term impacts are a great deal more adverse.

Again - I'm not sure what I'm dealing with emotionally. What bothers me the most is that I'm just not myself. There's just not much left.......

I just realized that I started out by saying I never complain......three paragraphs later, I've done nothing but complain!!!

I probably should talk with a professional (Psychologist) about these feelings, but I'm an engineer, so I have to try something on my own and arrive at my own conclusions before I take that step.

I guess I'm curious - Does anyone else feel emotionally "less than normal" after treatment?

Hi bjmpittsburgh,

Welcome to the forum. I am sorry that after seventeen years you are back. That's really disappointing. Here you can complain all you want, we have all been through the experience in one way or another and we truly understand what you are feeling.

Having to see a therapist is not a last ditch effort -- in fact, having someone to whom you can unburden may well help you to put things in perspective and help you to figure out how you can cope with the present situation. At least, that's the experience I have. I don't see it as weak, it's just help I need like I may need a crutch if I break my leg.

There are quite a number of members who are on permanent feeding tubes; maybe they will pop in and give you their perspective.

The treatment is for the body but as far as my experience goes, I find it requires a huge adjustment emotionally and mentally as well. Maybe you are in the process of working that through.

If you need to ask questions or simply to voice your frustrations, you are welcome to do it here. We will listen.

Welcome to OCF! Im glad you're here, its always nice having fellow survivors join our ranks. You're family now

I dont consider your post to be even close to complaining. Its explaining everything you have been thru. OC isnt an easy cancer to bounce back from. You have done it successfully twice which is no small feat. There arent many who have been thru it twice especially after such a long gap of being cancer free. You are very fortunate to have caught the second round while it was able to be managed.

Psychologically, cancer is a tough pill to swallow (please pardon to pun). It impacts so many of life's daily basic functions. Its just not possible for others to have the level of understanding a fellow survivor has. I could talk to hundreds of people (who all had a basic understanding of OC) for hours and they still couldnt completely get it. It takes walking a day in your shoes to really understand what being an OC patient/survivor is about. You are not alone with your feelings! Ive been part of this group for over 9 years reading every single new post. Over the years, Ive seen hundreds express the same feelings you wrote about. There have been studies done that prove a link between OC and depression and also suicide. After what you have gone thru who could honestly say it didnt affect them mentally? Being forced to face your own mortality not once but twice is bound to have some kind of impact on you.

I advise finding a therapist who counsels cancer patients/survivors. Ask your physicians at your treatment center if they have someone on staff that can help you. A therapist or even a psychologist is just another tool to help you make it thru the day. Many here have found antidepressants to be very helpful. Maybe this would be beneficial for you as well? If you would go that route, remember those types of medications take a few weeks to kick in and begin to work so give it at least a month to see a difference.

Post as often as you like. Its ok to express the good, the bad and the ugly here. Our site is safe and completely anonymous. Your identity is kept as private as you want it to be. Posting all your bottled up emotions here can help you to feel better. We get you!


PS... GREAT job with your signature!!!! Thank you

Thank for the kind words Christine. Your response is very well written and thoughtful.

The physical issues / constraints, pain, pump feeds, can be dealt with.

The emotional swamp I'm working through is not so much based in the mortality issues, but more so in my overall expectations associated with quality of life.

I have started to look for a Therapist to provide some guidance. Perhaps, with some time and effort I can arrive at some level of acceptance / better understanding of who I am now.

Gloria,

Thanks.....I agree that seeing a Therapist is not a last ditch effort. It's just my nature to try to work through / figure out things on my own before taking the next step.

The feeding tube / pump is cumbersome, but not terrible. (Although I do miss how a good meal used to make me feel!)

While 17 years was a long time between diagnosis, it just drives home the fact that my struggles with OC is / will remain a lifelong endeavor

I have been using a feeding tube for over a year. Some days it is a blessing and some days it is not for sure. I struggle every day to keep my nutrition and water needs met. Always wondering if there is something better out there to put through the tube. I do try every day to drink soup or nibble on a little something just to keep the swallowing muscles working. Perhaps we can exchange feeding tube tips. I do have up days and down days, sometimes even weeks of each and can so understand what you are saying. Some days it is the littlest of things that set me in a funk but my strong loving family is always there for hugs and encouragement. Your family and faith are so important and I am happy to see you are blessed with both. Please continue to check in here. You will never meet a more informative and supportive group.

Jo -

Sorry for the delayed response. Busy time of year with the kids starting back to school and the late season construction crunch all hitting at the same time.

Two years plus with the tube and pump for me. Sometimes I can get away with a quick push for a box or two if I'm in a rush, but not often.

Not able to really swallow anything other than.....Dr Pepper or orange juice, really cold with small sized crushed ice. Not a standard swallow, just more or less dumping it down and relying on the ice to cause a reactive swallow. 16 oz can deliver around 200 calories. It's not for everyone. My doctors laugh about it now, but they were not happy when I first told them what I was trying. (High potential for aspiration.)

I would love some soup - French Onion, without the cheese of course, but it's a little on the thin side. Between the two of us, French Onion served with crushed ice just wouldn't be the same!

Usually, (all the time), I rely on the standard IsoSource - Non Flavored. Between 8 and 10 boxes per day. The steady diet, supplemented with help from Dr Pepper, has kept my weight consistent +/- 3 lbs for the last 18 months or so. Started with vanilla flavor, but that tastes terrible when / if it comes back up. I have found that if I remain on the same feeding schedule every day, things are not so bad. It's when I miss a feed or sleep in, that's when problems can start. (Also, if I'm on a schedule, I stick to it if at all possible.) Although its regimented, it seems to work for me.

Do you have any reflux issues? After the recurrence, I have to keep my head elevated or risk heavy regurgitation with potential to aspirate.

I've tried pushing watermelon juice through. Not bad. Same with cranberry juice.

I get what your saying about getting into a funk. I used to cook all the meals for my family. (Can't beat family time around the table.) Now.......once in a while I'll cook, but I can't stay while they eat. Miss those times. I've found that during "my feeds", I enjoy reading. My daughter and / or wife will join me from time to time. I really enjoy the quiet time with them.

No matter what though, the energy level and reserve strength, is just not there and I'm fairly certain that it will not be back. That is what rubs me the wrong way more than anything else.

Now it is my turn to apologize for not getting back to you sooner. Seems as though I spend days here reading then have to back away for awhile. Not that all postings here are not in my thoughts all the time, quite the opposite is the case.

I was surprised after reading my post to you back in July that not a whole heck of a lot has changed as far as eating/drinking goes. I guess the funny part is I get some food or drink item in my head saying "hey that will work!" I run to the store, buy it, then after a bite or two so disappointed that it did not go down. I constantly fill the refrigerator with the voluminous containers of leftovers and funk out once again because I don't want to try it again.
Funny how I loved to cook and bake and in the true "southern way" was always at a sick friends door with meals and goodies first but now I only find myself in the kitchen to pour yet more sinking liquid formula to feed myself. (But don't get me wrong I am glad to have it). Quite an eye opener to see how eating drives so much of our existence with our family and friends. Everything seems to boil down to come over for dinner or let's meet at a restaurant. We have a very large house where everyone would come all the time for any party or get together excuse, eat and enjoy the evening because the joke was I always "cooked for an army".

Now I dislike walking through the grocery store. I find myself almost filling the cart with "used to be" great food items only to say to myself oh, you can't do that ! I even dream about potato chips or holding a big fat cheeseburger in my hand....wake up with hand in position at my mouth but it is an empty hand ! Now THAT is a nightmare, lol.

Shoot, when I first got the feeding tube I would hide in the bathroom to feed myself when our youngest son was visiting so he would not see the feeding tube but I gave up on that silly exercise. I again say I am so lucky to have a hubby of 44 years and grown children that are so caring and supportive. That is so incredibly important. I know your family is the same way with you so we are truly blessed.

Dr Pepper you think ? My crutch was Pepsi but now it is a burning volcano in my mouth, never thought I would say that. I do take sips of orange or apple juice and like you mountains of small crushed ice. I am never more than six feet away from my glass of ice water. My hubby has the sound of the overworked ice maker imbedded in his ears ! In fact, in the south we so often lose our lights for a few hours even when it just rains. So, I keep containers of ice in the freezer for back up.

Ahhhh, yes French Onion Soup sounds SO good..... might be another store run in near future.

Have you tried some thickening power ? I don't know much about it but they say it has no taste and you can use it in any liquid. I can swallow, sips not gulps, but my problem is that anything that is more than water, I can't get it to go back since the inside of my mouth is so extremely dry. And by the way, ALWAYS feels like an inferno.

True, I do also worry that the energy level and reserve strength will never be what it was but we can't dwell on that or it will drive us crazy. It is unbelievable how little I get done here on a daily basis but I have learned to shrug my shoulders and say oh well and whatever a LOT. I refuse to push myself but just take each day to enjoy what I do have. We have a new focus now. I see mine as enjoying family, delighting in the grandkids and stopping to "Smell the Roses".

Reflux issues you ask ? Oh yes, With 3 recliners in the house that stand you up if you want it to I have choices LOL. My poor hubby never knows where he is going to find me in the mornings. I am down to 86 pounds, a true skeleton here but I refuse to lose any more weight and working hard each day to get as much down the tube as I can handle. Christine is so right when she preaches on this site to push water, I really got myself in trouble not heeding that advise.

I am afraid the admins are going to kick me out of here due to this long winded post, I really did not mean for it to be THIS long. Hang in there buddy, you have been through the wringer but you have a family that loves you so much and they are counting on you to love them back. Take care and hope to hear from you soon !

Jo -

It does seem like we have a lot of similarities with our current situation.

It can be a lonely struggle at times, but, with family, friends, and work, I'm able to focus on other issues rather than my day to day issues.

I bet your southern meals were fantastic!

I also have the thought of trying different things with the same result sitting in the fridge

I understand about wanting to "hide" feedings from family. I still catch myself quietly going to another room to take care of that. Yet at the same time at work I just toss the bag and pump in my desk drawer and work through lunch while the pump grinds through a couple of boxes.

Is it the volume of the feed that bothers you? or something else?

I found the Dr Pepper was easier to "drink" than Coke / Pepsi. I used to be a Coke guy but can't take the heavy syrup "taste".

My wife has always said that I'll need a little extra weight to fight the next battle. I hate the pump and liquid diet, but no other options exist. So, I watch the food commercials and remember what things tasted like and try to convince myself that I'm not starving.

Even though I've had two separate radiation treatments to the neck / jaw, (both sides), my saliva production is lower, but not terrible. (Very Lucky)

Stay positive, we have been given this path in life for a reason.

bjimpittsburgh

I am 14 years since diagnosis, start having difficulty to swallow about two years ago, and lately found my speech became unclear too....doctor has warned many times not to eat from mouth, put in tube... While I have not put in peg yet, I did just drink liquid nutrition for lunch because if I eat, I cough badly and make real mess....
I take 4 boxes of Fiber Source HN with me every day and finish them in 8 to 10 hours while I am in office and cook myself for dinner, usually it is soft Tofu and some well cooked vegetable.