Hello to you all. I am so delighted to find this forum. The general cancer chat rooms don't have much for me to connect with, and I was really getting lonely for some company with people who understand my experience. I've read post after post from you all, and wow, have I ever come home by coming here!

My story is like yours. Recurring ear ache and swollen neck glands, led to CT, which led to surgical biopsy. Pet scan, a hit parade of docs and a very solemn oncologist. SCC, very large tumor in the base of the tongue, mets to the left neck lymph glands, and left carotid artery.

After several opinions from different 'camps' about tx, I chose a non-surgical plan. Buckets and buckets of chemo every day for 12 weeks, one week off, then radiation twice per day plus very heavy chemo. One week, tx every day, next week off, third week tx every day, etc. for 12 weeks.

Tx ended 11/03 and I'm doing great. Lots of post tx fallout, no teeth, can't swallow much, peg tube for nutrition, no sense of taste or smell, feet and hands still pretty numb, very poor balance, and some charming sinus issues. (Other than that Mrs. Lincoln, how was the play??)

My speech is fine, I am back teaching in the classroom again (college sociology) and enjoying that. Energy continues to improve, hair came back without the gray and my beard is gone. Really gone. I shave a few wisps every few days.

Please, talk to me about HOPE. Until quite recently, I did not hope - even a little. Now that my strength is returning, I catch myself looking forward to things. It scares me. Is this chemo brain, or do others feel this too? Is this depression?? Tom Jackson in Colorado.

Tom,
Welcome to the site. It is great that you are 2 years out! Congratulations!!
I totally understand about not wanting to hope. After my surgeries, I didnt want to think about life. I was sure that I would never grow old, or see my daughter grow up. These feelings are getting better. I have tried to put the whole cancer thing behind me.
I think it is depression. You should talk to your doctor about getting on anti-depression meds. They helped me.

Tom,

This is the place I explained in my e-mail to you. Lots of hope here. Tons of it as the matter of fact.

And, why shouldnt you look forward to things?????

YOU ARE A SURVIVOR DAMN IT!

You have made it a lot longer than some out here believe me.

You are alive and have the rest of your life ahead of you.

Screw the side effects man. No teeth, hey I got cousins that didnt have cancer and dont have any.

Seriously, life is for living. Cherish every second.

One of the best things I got out of all of this bullshit is this. It sounds simple but its true.

I dont have to feel good to be in a good mood. Sound wierd? Only cancer survivors can understand that.

You my friend, are a survivor.

Enjoy.
Peace and love,
Robert, Christine, Alison, Robby, Billy, Tommy, and Scotty Hamilton

Welcome, Tom.

There is ALWAYS hope! Every morning that we wake up is a good day if only for that reason. I have consciously chosen to believe I am cured. I finished treatment for a srage IV tumor with mets in 2002 and although I go for recommended checkups, I am much more a regular person than a former cancer patient. Although I will be more surprised than anyone if I have a recurrence, I will not regret the fact that I wasted not one minute worrying about it. During treatment and recovery is a great time to focus on oneself, but afterward the world awaits! There are treatments and side effect remedies available now that were not heard of when I was treated. The longer we enjoy life, the better the chances of there being something new if we have a recurrence. If you cannot see the wide open possibilities available to those of us who have slain the dragon, it is very advisable to be screened for depression, which seems to be a very common after effect. I have recently seen a good friend, who has never been sick, stuggle with every day, until being put on a very low dose antidepressant. The difference is amazing and she is enjoying life again. There are times when being a drug user is a good thing (grin).

Joanna

WELL SAID (as usual!) Joanna!!

I second everything Joanna said. Life is too precious to waste time worrying about a reoccurrence. It's time to get back to doing the things we enjoy doing.

Eileen

Thanks to all of you for your responses. I agree with all that was said about hope, and I do all I can to consciously, deliberately have it. The question I was trying to ask was more about having flashes of doubt.

A friend and I were talking about our retirement plans the other day - the usual banter about golf and hobbies and travel. After that coversation was over, and I was driving back to campus, a question flashed into my head: "Will I be alive long enough to retire?" Its a question about mortality.

Before cancer, like a teenager, I think I imagined living forever. Post cancer I have considerably more respect for mortality and the fact that life is not infinite. It is less about being afraid of a relapse, and more about being aware that we don't live forever. People die from all kinds of things.

I didn't need to have hope pre-cancer, my future was assured. I didn't hope for things, I pursued them. Being alive ten or thiry years from now never even came up before. Now it does.

Has your cancer made you MORE aware of your mortality? Are you feeling / acting / living differently now than you did before you got so sick? Mine has. I don't fear death, but I don't want to die - I have way too much to do. My plans for my future are now based largely on hope that I'll be here to carry them out. It surprises me - scares me a little - suddenly feeling so mortal. This happen to anyone else??
Tom

Tom,

I think many (if not most) of us have felt something of what you expressed -- being reminded of our own mortality, wondering if we'd ever get to retirement, etc. I definitely found that going through cancer treatment changed a number of things about the way I viewed life and how I spent my time -- and most of those changes turned out to be for the better! Like you, I had certain goals as to what I was going to do in retirement, but once I realized that I might not get to 60 or 65 (I was 39 when I had cancer), I started refocusing on what I thought was most important to do now in whatever time I do have. For me, that meant scaling back from a 60-70 hour workweek to a more manageable one so that I could begin to make room for other things that really matter to me -- and the end result is that each day has become more enjoyable. The list of "other things" filled up over time to include volunteer work, singing in a choir, playing the organ (a skill I learned post-cancer), gardening and growing orchids, and traveling with my husband to parts of the world I thought I'd never see. One day I woke up and realized I had turned 55 and was eligible to start taking early retirement benefits, but I'm not ready to consider myself a retiree quite yet.

I'm glad to hear you've been able to get back to teaching (and enjoying it). Even though you're now a couple of years out from the end of your treatment, I suspect you'll continue to see further recovery as you go along -- I was amazed at how much improvement I saw well past that point.

Stay strong and please keep in touch.

Cathy

I learned something in the military (actually, I learned a LOT of things in the military but I don't think this is the proper place to discuss them <g>) and it's that while you are going thru any life event where you'd rather be somewhere else, you tend to have dreams and make plans about what you will do when the whatever is over and you are free.

Then you become free, you wind up for one reason or another not following thru on your plan and feel like you've failed -- The true failure here is that you failed to recognize that dreaming and making a bunch of detailed plans are NOT committments, just mental devices to keep you focused away from the unpleasant stuf.

And even if they WERE committments, they are committments to yourownself, and you have the power to release yourself from those committments -- Use that power!

Kinda like sticking a thumbtack in your finger to keep your attention off whatever -- You have no obligation to keep sticking the thumbtack in your finger for the rest of your life.

Once the problem is past, any effort spent thinking about thumbtacks or plans not accomplished or places not seen is wasted effort -- You have the choice of wallowing in past committments made to yourself under duress or doing the stuf you want to do and can do.

Time spent thinking about things you have control over is not wasted, it's research towards a decision (but once the decision is made, don't look back and secondguess yourself, just get on with it), however, time spent thinking about things over which you have no control is indeed a waste!

In re: anti-depressents, each of us may have different reactions, but I personally found that altho I am the kind of person who seems to have several "thought channels" running at any one time, ranging from right up on top down to almost subconcious (I'd guess the subconcious ones are there also, but by definition I can't tell <g>)

Once I started taking antidepressants and they finally started working (took many weeks for me), I found that most of the lower channels went away -- In other words, while I was doing something, I wasn't worrying about whether I'd make it to retirement or what the weather would be like next week or who would win the next election; those things didn't matter in the sense that there wasn't anything I could do about them beyond what I had already made plans to do. And the big point is, they were no longer squandering my time nor depressing me by my helplessness.

And wondering whether that evil thing is going to come back out of the shadows again is one of those things over which we have little control -- We can follow the current guidelines about diet and hydration, we can quit using the more obvious stuf like smoke and booze, we can keep a watchful eye on likely recurrent spots (but not to the point of Every Five Minutes Paranoia!) and we can keep current with the literature and visits to the Docs, but any worry after that is likely to be a waste.

It would be a real shame to fail to enjoy our grandkids or RV travel or even the current series of our favorite soap opera in favor of wondering if and when the evil thing was going to return only to be walking outside and be killed by a buzzard with a heart attack falling out of the sky on our head!

There're just too many variables in life to be wasting time on intricate plans for only a few of them.

Pete

PS If falling buzzards are already one of your worries, I highly recommend a good brand of DOT-approved helmet, the kind that are prewired for stuf like IPod -- Darker colors are easier to clean up after a buzzard-strike -- I gave this a lot of thought before starting my anti-depressants <big grinz>.

Pete

Love this thread! Janet

Tom,
Of course we cancer survivors are all expected by others to feel and live the cliche that since our diagnosis and survival, we cherish each moment that we have left, always smell the flowers, etc., etc. I have found, for better or worse, that life, although somewhat altered, goes on. As I have gotten better and especially since my swallowing has finally improved and life is more normal, I think less about cancer and dying than I used to and consequently, I live life a little more like I did before cancer. My ex-wife now has the freedom to get pissed off at me again and although well-meaning people often ask in very sincere tones, "how are you feeling?", in general noone has to treat me as a precious entity, perceived to soon be leaving this world, as they did 3 years ago.

I used to say that I knew that I had recovered when I started insulting people in the elevators at the courthouse in the morning once again. I had regained my edge. Hey, I get pissed off in traffic and at surly clerks just like in the old days!

I am, of course, not suggesting that we should for a minute forget that mortality lurks over our shoulders. It lurks for everyone but we are certainly more aware of it than most people and odds are that it might be more immediate for us. I often joked, after my diagnosis, "heck, at least this way I won't outlive my money!"
The awareness of our mortality, I believe is a good thing. Zen moments of awareness are always a good thing. However, I also feel that it is inevitable, natural, and probably good, that for those of us lucky enough to recover, life will return to a kind of normalcy where, although we are aware of our mortality, we still at times get caught up in daily life, along with its highs, lows, frustrations and shining moments, just like everyone else. I certainly don't care to work as hard as I used to and if I play hooky from work for a golf game, I can easily rationalize that hey, I might not have that much time left or might not feel this good in the future, so go for it. I too wonder, " will I ever make it to retirement?" I guess that the only answer to all of this for me is that life goes on, and just like I always have done, I will put myself somewhere between the ant and the grasshopper, and try to enjoy life for the moment, while being prepared for the future in case I have one.

There are no real answers to these questions, and everyone reacts differently to diagnosis and recovery, physically and emotionally. As you can probably tell I am not one who has been known for having the most sunny outlook,(although a lot of my cynicism is just my sense of humor), but I was always very stoic about getting cancer, never asking "why me?", because even though I was not a smoker or drinker, "why not me?" made just as much sense. Fortunately,the only time that I was really down was in the period following radiation when I felt so bad and the future looked so bleak.That is when I discovered this wonderful forum. From my viewpoint today the future does not look half bad....or should I say that the glass is half full?!

I agree with Janet...this is a fun and thought provoking thread.

All the best,
Danny G.

Tom,

No reason for getting depressed... my hair is just starting to come back and I have some gray. Lucky you!

I finished my tx at the end of August and think that at that time and a few months after I was too sick to be depressed. My days of depression have been very few and as I regain my strength and energy level the depression will be even less.

I do agree with some of the statements above re mortality. Having cancer and being a survivor sure puts things in perspective.

Live each day to its fullest and be happy!

Susan

Hello Tom

Your post has attracted very thoughtful replies showing the calibre of people who contribute to this board.

I was surprised to find myself very edgey after treatment. Anti-depressants fixed that but until recently I didn't seem to want to think in terms of retirement or long-term planning. I was only after my 2 1/2 yr all clear that I suddenly felt FREEEEE!

Because I am a single person I have thought through how I would manage a recurrence but I now believe it is unlikely - even though I continue to check my neck for changes every day.

I understand your feelings and thankyou for voicing them. Great to see you contributing so positively to other threads.

Love and light from Helen

Fantastic responses! Its wonderful to get so many perspectives on this one. For the sake of the thread, I'll take issue with the "just cheer up" line of thinking. Depression is not a choice. In much the same way you don't tell an alcoholic to "just sober up", or tell a homeless person to "just buy a house", or tell a cancer patient to "just be healthy", you cannot tell a depressed person to "just cheer up". Too many of the features of depression are not under our direct control.

To be sure, we have choices about our attitude and we can hold our heads up even when our necks hurt. Smiling costs so little. Be strong, be positive, get involved, be in the now, live every day, etc., to be sure. Though great advice, these are NOT at issue here.

To me, this is not a "rah, rah, sis boom bah", pep-rally issue at all. Its more unconscious, it arrives in my world unsolicited, unbidden, unexpected. It pops up even when I'm having a great time - hope/doubt. It is now clear to me that these two travel together. Hoping for a thing is an admission that it might not occur. This is not some huge cartoon ship's-anchor that I am forced to drag about with me, its more like a bird that occasionally crosses my view.

Mortality is sobering at its least. It makes me aware that I have lived 50+ years without any concern at all about how many chances I will get to do a thing. This is no longer true. When my barber shaved off the rest of my falling hair during chemo, he asked what my odds were. I told him, he frowned and said "well, is there any place you really want to go?" Utterly practical. His comment may the genesis of this discussion for me. I am now forced to make better choices with my time - no matter how much of it I have.

Does any of that make any sense? Tom

Tom, I'll begin with apologies to the "whether or not alcohol is evil" folks, because I've enjoyed a couple[2] glasses of wine since getting my grandchildren to bed and settling in to read the OCF posts. I'm not a cancer survivor as of yet-I'm a stroke survivor-totally unexpected at age 63-left me blind in 1 eye and with screwed up thought processes-. And, as with alot of the treatment for cancer- my post stroke treatment meds were and are almost worse than the stroke. But then my husband was diagnosed with SCC and shortly thereafter my daughter in law got called to Active Duty and left me a 19 mo. old and a 14 yr. old to care for. I don't have time to worry about my own mortality now, And it has occured to me that might be be real secret to living. The "woe is me" feelings I had for the year following the stroke are gone. Instead its "do I have enough diapers in the house, and what time does Alex need to be at band practice and what can I fix that John can eat tonite" that are on my mind each day. I have said goodbye to 4 grandparents, my Father, Mother, 3 close Aunts and Uncles,a niece, and several friends over the past few years. Dieing is the result of living. Hope is what you define for yourself for the life you have to live.I believe that we can only HOPE that we use our alloted time wisely. Aren't there some wonderful people in this group?
Amy