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“Cancer Never Sleeps – How It Acts Out Through Our Subconscious”

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

You might think that the further you get down the road in the cancer journey, that you would be able to find some peace and contentment somewhere along the path.

 

I’m here to tell you that can be the furthest thing from the truth there is….it’s predicated on where you are standing right then, in your life journey.   

 

Oh, there are spells of time in which we convince ourselves that all is well…or will be well.  And then our emotions turn topsy turvy on us as quickly as the sun sets and the moon rises.

 

And then we recant in our mind what we told ourselves as we’re caught up in yet another cancer maelstrom that plays havoc with our emotions, while stealing away those precious moments that we don’t have to spare.

 

And that’s on a good day…

 

And as strange as it may seem to you right now, those moments can even come when you’re not even currently in the fight and you find yourself sitting on a clear status.

 

“How can that be?” 

 

“I’d be so happy if I was just NED and my life would just return to normal…nothing else would matter.”

 

Yes, I understand those sentiments very well…

 

 I think for a long, long time, I held those same beliefs and tried to adhere to that philosophy.  And perhaps, to some degree, I still do….or at least, I still WANT TO.

 

There is that part of me living inside of myself that wants to believe this could be true.  I suppose Doubt and Faith play their role into cajoling one another and the ongoing duel determines so much of how we manage our condition. 

 

Having fought this so many times over the years though, one’s perspective can often change.  And that’s a good thing.  Change usually comes when Awareness graduates to Enlightenment. 

 

Sometimes, the knowledge from that is good…and other times it is bad…bad in the sense that sometimes we don’t want to readily accept what we’re seeing and beginning to understand.  We’d rather go back to the time before that…and yet we cannot.

 

And then we find that we have no choice but to grow from what we’ve learned or come to realize.  And that is…”Enlightenment does not discriminate – it educates.”

 

One can never know the good – without understanding the bad, as well.

 

It would be sacrilege for anyone to come onto the board with those fighting so hard and say that NED is not always as advertised – or that once you get there, if you can get there, that it really is not all that it seems to be.

 

Of course, this varies from person to person….

 

But, before we become judgmental about that statement, let’s all take a step back and just try to look at it through another’s eyes besides your own…and your own circumstances. 

 

A lot of folks have riches in their lives beyond the realm with which we measure wealth….what I like to refer to as the Human Intrinsic Values…and it’s important from this perspective, because it drives us down certain lanes that others cannot merge into. 

 

What one sees as an Oasis – can be only a Mirage to another…

 

It really depends upon your life experiences…and the life you are leading….and who’s in your life with you. These things all derive in defining who you are and how you see things.

 

I want to talk about how cancer operates on the inside of us…we already know the outward effects of the disease all too well. 

 

So, here’s what I’m seeing now from my vantage point in the journey…mile marker = 103 months…remissive state…watching and waiting…

 

Let’s talk about where Cancer does its most insidious work…

 

Cancer lives in your subconscious…

 

He resides elsewhere too…our tissues, our organs, our lymph nodes…and he is ever-present in our waking hours, even when we try and confine him to a small room in the back of our heads.

 

Doesn’t work for long, does it?

 

One of his biggest weapons is that thin layer of cerebral activity that lies just beneath our conscious thoughts.  Most times, we’re not awake for any of that, but in the morning, we feel that nagging feeling of something just not quite right in your noggin that day.

 

That feeling then manifests itself into the Conscious Thought, that we are all familiar with. 

But, just because we may not think it…or think that we think it…doesn’t mean that we didn’t think. 

 

Because, there is a huge internal wrestling match going on in our heads everyday…we think we will find peace and tranquility somewhere in the day…and we fill the day with everything we can to divert our attention off that nagging thought that permeates our lives.

 

“Is This It?”

 

This is a 2-sided question.  We could look at it both ways here.

 

  1. Is This It? = is the cancer finally over?
  2. Is This It? = will these feelings of cancer having a hold of me truly ever diminish?

 

I cannot answer question #1…I’m waiting to find out just like the rest of you are.

 

As for #2, the answer is a definitive NO…at least for this post.  I hope a future post one day will show a change in how I feel, but for now, No….these feelings always seem to stay with you….103 months and counting now.

 

Part of it is actually worse than it was in all of the earlier years…and I’ll tell you why.

 

Back when you start fighting, you fight hard…you expect to win…but I think there is also a part of you that truly feels that you won’t make it.

 

Be honest…

 

One day you wake up and find you’ve outlived the prognosis that your doctors gave you…and you find out that you have gone longer than even you had predicted. 

 

And as strange as this sounds….that’s where part of the problem starts. 

 

It all begins to change when you find Recurrence Lane…that’s where the first Seeds of Doubt are planted in your subconscious. 

 

Where it gets worse, is if you begin to have multiple recurrences…that’s the game changer…for the physical fight…and equally important, the mental and emotional fight.

 

You can only know when you’ve reached that destination.  Look how scared and over it you are now….you walk into this room green…think you’ve got this whipped after the first lick…and then things change with Recurrence’s introduction.

 

And it should…

 

So, as far as physically reaching a remissive state, that is a huge accomplishment…even if your life all around you is less than what you want it to be.  No argument there.

 

But, now you see that you are going to live for awhile longer…and yet, you are still shackled to those emotional chains that cancer has you wrapped up tight in.

 

“How do we break free?”

 

I don’t know.  I’ve read stories up here about folks that told me they did.  I think to myself if what they are telling me is what they really believe – or is it more for the benefit of the patients here on the board? 

 

I know we all want to put our best foot forward and project the most positive image we can, because we feel that will be in the best interest of the group.

 

Still, we can’t always gloss over the hard topics of cancer on the board…

 

And this is a hard topic…because you ask yourself, “Why am I not feeling the way that I feel I should be feeling?”

 

Now, say that really fast 3x, LOL!

 

But, I always think that an honest examination of what we are truly feeling is very revealing…and quite cleansing...and that’s where I come in….at least for myself.

 

You would think that driving cancer back in the shadows on three separate occasions would be a big deal, wouldn’t you?

 

It was…and it IS…

 

When I came off this last fight and got clear again (3rd time), I just didn’t have the ‘feelings’ I thought I should be feeling.

 

I was waiting for the balloons to fall out of the ceiling…and for the band to start playing, For He’s a Jolly Good Fellow…..where was my cake…where was my ice cream for this party?

 

I even remarked “Where’s Jenny with my margarita?”  My friend has since passed.

 

But, I was waiting for the big moment…and it never came…even at the restaurant when I took my wife to ‘celebrate’, I turned to her and said hey 3x now, we did it…”Woot Woot.”  I just circled my finger like whoopdedo. 

 

She looked up from her phone (on FB) and said, “Yea” in a whisper that was barely audible. 

I felt like a failure…what this was all about, I thought.  “Is This It?”  

 

There was nobody else to physically share this news with me…so it landed with a resounding THUD in my heart (the board was kind however).

 

But, it all felt so empty…so hollow….like what was it all for? Is this all there is ever gonna’ be?  Even if I defeat cancer 20x?

 

I returned to work for the 5th time…and it was like I never left…just no big deal…after investing 25-years of my life with this organization….the silence was deafening. 

 

I went back to my same laboratory that I had built in a former life…a life before cancer…and still sitting there were the 2 dummies I had left before…they currently have me on the Cold Shoulder plan…and have not spoken to me now in 12-months for reasons unbeknownst to me.

 

I pretend it doesn’t bother me…and just go about my business as a pro.

 

It has taken me quite a bit of time to physically recover from this last fight…I’m seeing now that some of my ailments and impairments are never going to go away…and may grow exceedingly difficult as time passes…even if I never have to fight again.

 

Then, at the start of last year, Dad got sick…you know the rest. 

 

Through all of that, the one thought that kept me going was that I was in a remissive state and thus able to take on all of that responsibility…

 

But, the other part of living his life all of last year, was this URGENCY that my meter was running…and that I was going to run out of time again, before my next recurrence showed up to sideline us even further.

 

That’s where some of the anger has been stemming from…

 

I worked hard to defeat my cancer 3x…and yet, so far, there has been anything at the end of the rainbow. 

 

My main concern is that I “Chewed Up” all of my good days wallowing through that pig trough of a house and its contents, and straightening out his estate, with all of that extraneous drama, while my cancer free days died steadily on the vine.

 

I’m anxious in ways that I can’t fully put into words…

 

It’s sort of like this Drowning, Suffocating feeling that is trying to pull me down ….that panic feeling you get when you’re flailing trying to gasp air. 

 

I finally got the house to market…I’m trying to repair my life…and I’m trying to move forward…and I guess, I’m just impatient is what it probably boils down to.

 

I’ve flipped the light switch…I’m on…my candle is burning brightly….but I’m trapped…and can’t get out of this quicksand.  And I’m going to tell you why…

 

So, I want to say that I absolute 100% agree with Pete in the following paragraph on the work topic that plays directly to the trapped feeling I find myself in now.

 

Awhile back, Pete alluded to the fact that he was tired of working and no longer had interest in spending his days in that fashion. 

 

I absolute concur with his assessment. 

 

That’s where I find myself drowning right now. Many of you think that returning to your work will give you some normalcy back in your life and make you forget about cancer.

 

Many of those thinking that way have only experienced cancer for the first time.  And that’s a much different mindset than when you’ve fought recurrence many times over many years. 

 

Of course, many of you probably love your occupations.  And that plays a big role…so big in fact, that those feelings may never pertain to you.

 

But, they do for me…

 

Because, I’m mismatched for my position…and I don’t feel the joy that so many of you do with your careers.  I rose through the ranks to manage an IT department…it’s significant for two reasons.

 

One, everyone…and I mean everyone…told me I would never be a manager…I did.

 

Second, because it really goes against the grain of who I am.  I’m not a machine and IT is like a salmon swimming upstream.  I’m geared more for the creative side.  I like to write…and missed my calling…missed it for many reasons I’ve already talked about.

 

So, here I am…25-years invested in a career field….stricken with cancer 3x…company unsure about my future…me unsure about my future….with limited health and abilities, selling yourself somewhere else would be a tough sell. 

 

I need what I’ve earned…and I need the insurance…

 

But, the joy is gone…I work in fear…I live in fear…my livelihood is driven by fear….fear that I’m not going to be able to do Today – what I did Yesterday.

 

And being sacked…and losing everything as a result. 

 

It’s a terrible way to live…

 

So, when I whip cancer, I simply return back to work  (at the very least) and while it keeps a roof over our heads, it is simply not life fulfilling anymore.

 

I think most of you know what I would do with my life…if I had options. 

 

Every day, I watch another 24-hours bleed slowly out of my life…I trudge to work and home, creeping along slowly in those metal coffins with 4-wheels and try to get through it. 

 

Like most, I wait for the weekends, where I owe no time to The Man.  Only, we don’t get to enjoy…we simply have to work…last year at Dad’s…this year at our place, which has become a house of disarray over the past year.  We know why.

 

I keep trying to work on another life that I had high hopes for….but, it doesn’t seem to be in the cards for me to flourish or prosper…only to suffer and endure accordingly.

 

I think of the things I could do in the cancer world…but I don’t have the right stuff to garner anyone’s attention, I guess…all the doors and windows remain shut, despite my best huffing and puffing, I can barely crack more than a fart in the wind.

 

I caught a few minutes of American Idol that my wife had playing…this terrible girl was up there gyrating and butchering every note…it sounded like fingernails down a blackboard. 

 

But, there she was on a national tv show…in Prime Time…a complete embarrassment, but she got those few minutes. 

 

It reminded me of what we’re being told that makes good drama or a good story….a small group of people deciding that this girl would be good for a few quick, cheap laughs at her expense.

 

And it made me think of the other Do’ers out there who program show content…and what it must take to get a shot at their shows.

 

I’ve failed with Dr. Phil…and now with Jeff Probst…what was it about me that they rejected?

 

They all advertise they want real stories with real people….all of the book agents I sent manuscripts did too…I sent them in one by one.  I was lucky to receive a physical email rejection…most of the votes come through loud and clear – through Silence.  

 

But, they are deceptive in what they ask for…if you look closely, it’s always about the celebrity or spotlight figure…not much pickings for the real guy…every now and then you’ll get a dose…guess that kind of stuff doesn’t pay the light bill. 

 

And after a lifetime of searching, I finally know what I want to do…and I’m slowly discovering it’s probably what I’ll never get the chance to do.  And that’s been a great deal of frustration as I watch my cancer clocking winding down…Tick, Tick, Tick.

 

And this is where Cancer is trying to drive a wedge in me right now…

 

I’ve almost given up on the dream of ever being anything in this life…so, I thought how much of my life can I now put back together while I’ve got the chance?  

 

We’re just trying to get to the basics right now…after a year ‘off’ from our place, I see where the work needs to be done…and I’m mapping out the year of what we can get done. 

 

Unfortunately, work gets in the way…I need some type of sabbatical…I just need to be able to get up every morning, have $$$ put in the bank, so I don’t have to work…and have the freedom to think and pursue my endeavors.

 

Along those lines, I have another interesting idea that I wish could unfurl and become some kind of reality.

 

You know how when persons in the military are wounded in battle, in essence, they get RETIRED from active duty? 

 

I would like a program like that for cancer patients…a program where on your 3rd recurrence, you could retire from your work…and have a financial program in place that paid you for your service while you lived out the rest of your life doing whatever you wanted to do.

 

I said I was a dreamer…

 

But, that’s how I feel…I want to be doing something else…before it’s too late…while I still have opportunity to be viable…instead of dying slowly in a laboratory, with my spirit being slowly crushed.

 

“What brought all of these feelings to the surface, Craig?”

 

Well, my scans are due in March and I was having to rearrange the scan and the consult appt...and it got on my mind…I’m not a scananxiety guy…in recent years, I don’t think about it too much…until, I get my report online and begin to break down the scan report. 

 

There’s always that “Here We Go” when you click on the link to open the report…then you take a deep breath…and go looking for the words.

 

I’m not really scared of cancer anymore…at times I would have welcomed death, just to finally be done with it once and for all. 

 

There are two words though Brain Met(s) – that would unhinge me somewhat…okay, alot.

 

I find myself more TREPIDACIOUS at this fork in the road for me right now.

 

I see me getting to a remissive state 19 mos ago…then having to spend last year putting out dad’s fires…and now, my rocket is on the launching pad…and I’m ready to lift off and move on to What’s Next?…and yet, that nagging thought that cancer may just be around the corner to knock the wind back out of my sail and further dictate what my life will be….

 

I just want to get back to the “Illusion of Control” that I so often talk about…that would be pretty good about now. 

 

It’s just all so unsettling…to Want to move forward…but unable to completely break free from the grip that cancer holds over us. 

 

And I’m just saying all of this to you, because I wanted you to know that as a nearly 9-year fighter that these feelings NEVER truly will ever go away. 

 

We will manage them…some days we will do better than the next one…but it doesn’t get any easier….doesn’t look like it ever will.

 

You know why?

 

Because, you know what it is that we are really looking for?

 

ASSURANCE…we want that feeling that it is all behind us…and that we will never have to worry about it again….we paid our dues…now, we want to be free of it. 

 

That’s IT – in a nutshell…at least for me.

 

So, the point I was trying to make is that…Cancer Never Sleeps….he never takes a holiday….he hides….he waits…and he lulls each of us into that false sense of contentment…until it’s time to re-awaken those feelings. 

 

And then those feelings of Apprehension and Trepidation creep back in... 

 

It’s important to note that just because you get clear…does not mean you’re life will magically turn around on a dime and go back to what it was…and that you will be Happy Slappy with a worry free life.

 

I got free of cancer again this last time…and just thought I was miserable, until I walked into a firefight of a lifetime with dad’s life…and I’ve yet to harvest what I sowed from all of that hard cancer work. 

 

So much of our life is not our own…it’s taken me all of this time to understand that concept. 

 

I guess I’m just tired of conforming and having to fit my square peg ass into society’s round hole of what I should be doing….I want something else. 

 

Fighting and winning against cancer is nothing…if there is not something else to live for.

 

But, as I wrote in the book (haven’t changed my mind) is that if we are very fortunate…we simply return to the life we led prior to cancer…

 

Just about as simple as that…one of these days, I will learn to accept that.

 

-Craig

 

LivinginNH's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

Hi Craig,

This is a very introspective and honest post, and one that even I as a caregiver can wholeheartedly understand, just differently.  I think about Rick and his cancer every minute of my life.  I'm constantly anxious, as if I can still help him, but then I remember that he's no longer with me, and that makes me even more anxious and sad.  And you, you sadden my heart more with statements such as; "I’ve almost given up on the dream of ever being anything in this life..."  You ARE something my friend, but I really shouldn't have to tell you that.  What on earth would I have done without your friendship, support and guidance these past few years!?  You made it possible for Rick and I to have HOPE, and that in and of itself made a significant difference in our lives.  I for one, am very thankful that you are who you are, a friend.

Hugs (())

Cyn

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Craig and Cynthia,

Cynthia, a lot of your comments hit home for me. For example, what you said about always thinking about Rick and his cancer. Since Steve's diagnosis, he and his cancer are always on my mind. Literally. If I am awake, I am thinking about Steve's cancer. I no longer enjoy my job. I simply go through the motions and collect my pay. (Not good due to the nature of my work). I have no passion for it. Need the money and really need the benefits. My passion has become helping Steve. Probably not a healthy way to live.

Craig, I wish you found your job more fulfilling. I've always envied people who love their work. Some of us are just stuck and have to make the best of it. The reality is that once we are in our forties and fifties we can't just give up our jobs and expect to find something more suitable. As we get older, the
insurance becomes extremely important. Maybe you are stuck in your career and will just have to continue to stick it out for practical reasons. I hope that
someday soon an opportunity will come along. (Clearly Dr. Phil and Jeff
Probst are both dumb. The hell with them). In the meantime, don't think for
a minute that you do not have a huge platform to use to help others. If you
were to die tomorrow you will have accomplished something big. I'm sure the
hundreds of people from this board that you've supported throughout the
years would agree with me. Just want you realize the important role you play
here. Not only are very quick to share all the practical info you've learned
throughout your battle, but you also have a way with words and a gift for
creating interesting and insightful discussions which help people like myself
cope with the horror of this disease.

Chelsea

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I sure appreciate what you said...and so glad I can be a part of your journey...and thanks so much for listening to me. I truly appreciate your support and always so good to hear from you. Continued best for Steve. 

I'm stuck until I can dig myself out...perhaps that door will open for me...and the last phase of my life will bring me the meaning for which I've searched all my life. 

If I do, then you're coming with me:)

-c

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I sometimes forget that you might be roaming the halls:)

I don't mean to make you sad....just needed to talk:)

 

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

It is not often that I disagree with you, but the statement "if we are very fortunate...we simply return to the life we led prior to cancer", is one I can't embrace.

I beleive that if we are very fortunate, we learn:

we have much more inner strength than we ever thought

we can face the worst and still find the ability to hope

that no matter how we are feeling, we have the ability to lift someone else up by letting them know we understand

there are others who are waiting to lift us up

to see even the smallest things in life with clearer eyes and appreciation

Do I wish that cancer had never entered my life?  That goes without saying.  But I put it in the same category as my disastrous marriage of long ago.  While a most difficult time, I would not change it if given the chance.  Why?...because of the things I have gained from the experience which make me the person I am today.

I have no illusions about the impact of cancer on our lives.  It creates havoc, pain, dispair, anxiety in all aspects of our lives.  I just try to remember that with all that ,if we are fortunate, we can also find some things to put on the good side of the scale.

Dear Craig, you are a friend of many and loved by many.  Don't ever forget that.

Hugs,

Marie who loves kitties

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Its late but I read your honest and candid post.
You are not alone with your career path feelings. I agree with Chelsea71
about the healthcare insurance importance.

You have a special way of relating and giving us all hope.
TV is the vehicle for what looks like success and your story would be.
There is so much garbage out there from what I have viewed. Their loss....
You deserve credit and lots of hugs.

I wish. I could say more to tell you the value of your posts and writing.
Don't give up!!

Cancer never leaves my brain. I am so sick of treatment plan changes and I am a miracle girl but living each day or hour like it may be my last. I am living but is this? It penetrates the subconscious like you stated.

Thank you for letting me post -Barb

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

It's out there on the horizon, isn't it? 

Alot of us can see it clearly...

Can you imagine what I could do if I had "5-min of Prime Time?"

They'd either be cutting to commercial....or be mesmerized...either way, they'd know who I am:)

I appreciate everything that you told me....those kind of things keep gas in my tank...

I'm watching out over you now...you'll never be totally alone...

*** I've got another idea for Hope's Landing....well, you're the manager...you pick the name:)

I saw Cyn say we could have a basket of kittens...well, if we're going to have kit kats, then we're going to have GOLDENS:)

I volunteer my Harley (just turned 3 and really empathetic) to serve in the capacity as THERAPY DOG!

He sits...he shakes...I mean he shakes your hand...he twists his paw to "grip" your hand...too funny and clever.  He gives High 5's...and he loves to be rubbed and stroked...he loves people and sits right in on the action.  He's finally starting to grow up.

Guaranteed to be a fan favorite!  We'll have t-shirts and coffee mugs, bumper stickers and key chains! All proceeds going DIRECTLY helping a cancer patient and their family.

LOL!

And by the way...Golden Retrievers have moved up in ranking to the #3 favorite dog in America...but they will always be #1 for me.   The Labrador is in at #1...followed by the German Shepherd at #2.   

Goldens are really just people all wrapped up in fur...Harley sings now when we come home. 

And YES....you are a miracle!!!

And I don't throw that term around loosely...you've got my undying respect...anyone that stands up to brain mets, I've just got to pay attention:)

Love you!

-Craig

Did I ever tell you about my 1st Golden - Sundance?  He was a cancer detector and found my cancer twice before the doctors did...that's a true story.

 

 

 

 

Coppercent
Posts: 142
Joined: Jan 2012

Nicely said!

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

Marie i posted yesterday about how much i agree with craig but i also have to agree with you. cancer has made me a much better and stronger person. Cancer has made me do a complete turnaround for many of my faults. changes i would never have made if cancer didnt enter my life.And like you I certainly would rather have not gotten cancer. But I can say that I have received some real gifts because of cancer and will die a better person. to me that is the ultimate slap in  cancer's face.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Thank you, everyone!

I expected such backlash from this post.  I almost pulled the trigger and retracted it...but thought let it ride...I want to discuss this...and I want to see if folks are understanding the viewpoint I'm trying to bring.

Since the last fight wrapped, I've been desperately searching for the Meaning...in the Meaning of Life.

And Marie....thank you, darlin' for your brilliant insight...I couldn't agree more.  

When I said, we're fortunate to return to where we were....what I meant and did not say too well was....

That we would be fortunate if we could return to our livelihoods...and resume some type of normalcy that we remember.  We're fortunate that the people that interacted with us...would still do so.  And that life is not going to magically change just because you got cancer...or because you beat it either.

WE change...but sadly, the world does not change with us.

All of you what you said is true, Marie...it's just that I'm trying to overcome 51-years of non acceptance and not being able to find a place in the world (outside of here) that will have me...for what I am.  I just thought after all I've had to fight through from birth...that maybe, after cancer...there would just be something...and perhaps there will be.

Hugs, Marie!

Something like that is what I was trying to get at.....I like your version better:)

I just really wanted to make a difference in the world of cancer....to finally tap into one thing that I might could actually do...and be decent at. I'd give the rest of my life to cancer if I could...in a good way.  I guess it just hurts to reach for something that you cannot attain.

God is teasing me...He puts the desire in my heart that burns from the hottest coals of my soul.....and then extinguishes the flame with every breath I take. 

Looks like ya'll are stuck with me:)

Thank you for taking your time to respond and listen to The Lion's Roar!

-Craig

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear craig,

we are human, we are alive, we are built to suffer and love, we can put up with huge amounts of pain and experience wonderous joy.

so accepting what we cannot change, you know the serenity prayer and lord grant me the wisdom to know the difference.

you decided to keep your existing career, sounds like the best decision based on insurance stuff.

the point is you decided, that healthy, you exercised self determination.

we have to acknowledge the power of our environment over us, maybe then we can shape its impact on our emotions.

my mission is to live each day well, we are all gods children, inherently valuable.

my new career, is caring for pete. its a fun job, its fulltime and pays well. less stress and more joy essential parts of the healing plan.

you have grown so much beyond IT, your posts show care for others and yourself.

what value do you place on a terminally ill patients "smiling" we make each other smile each day. You have made me think pretty hard many times, i have been cursed, i have appreciated the feedback. maybe my faith in the immune, was strengthened by your old immune post. i do enjoy a good fight. i miss blake.

maybe i was on that plan to germany as a result of a seed you planted in my brain.

for so many others here your posts bring real thinking at often deep emotional levels, this is so healing. i believe our brains are the most essential healing organ.

i hope you smile while at work when you realise what high esteem all your friends here hold you in, in my opinion the contemplation that accompanies your  posts, this one a prime example is so beneficial for us all. you are living a life with so much meaning. sometimes we don't see it ourselves, sometimes a friend can point it out.

Its late, i'll reread this great post later. I just hope I wake up with a smile, the rest of the day can sort itself out. the rest of my life i'll leave to god.

My tip for me and others and you is to seek out real joy in small things when and whereever you can. its worked for me, being happy is healing. just my opinion though, no clinical studies on that. actually i think their are.

when i fill my life with joy, well not so much room left in the brain for fear and anxiety. we have to have strategies to out smart our cancers, they are pretty stupid, they don't have a brain, we do and its plastic.

hugs,

Pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

I typed out something, deleted it,  typed something again....deleted it.     I'm unable to put my words down so they make some kinda sense 'cause my brain is scrambling....I wanna come down there and hug you!!!  

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Leena?

Big hugs to you!!!

You come on down here and get some on you:) 

-c

 

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Looks like your Texas bro is working on you in ways you didn't see comin'...

Thanks for your reply, Pete...it was good.....there is some really deep, kind stuff in there...I freaked out...I thought is this Pete?

LOL!

Thanks again, mate...

-c

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

What a great post. You described all of my feelings about cancer. It seems to get harder the longer we fight. It is much harder after the third time as you described. It is harder to enjoy the gift of being NED this time around. I think about cancer more and seem to be almost obcessed by the whole subject. It gets harder to motivate myself to see the doctors and do scans than it used to be. You are so right about the mental and emotional aspect od the disease. I know that even if it never comes back physically it will always be with me mentally.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I just knew you would get it...and I've felt that you probably held similar feelings...which helps validate this post for me. 

You and I don't even want to know what #4 would do for either of us.....I'll be the one yelling loud:)

 

-c

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

i will be yelling even louder. lets hope we get to save our voices. LOL

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

dup-oops!

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

and think about it a bit before replying.  Really, it's like you read my mind.  My situation is different, as I was one of those lucky ones with a job I loved, and I miss it, but I share with you those emotions of feeling like I'm stuck in a no-man's land between the active fight against cancer and actual, cancer-free good health (which I doubt I will ever reach, despite being "NED for now").  Even though I know I shouldn't complain, given what others on this board are facing, it's a frustrating place to be.  I wish I was one of those, like Marie, who has been able to take away something positive from the cancer experience, but that hasn't been the case...I was in a pretty good place in many ways before cancer, and the disease has taken that away from me.  I would happily go back to my PC (pre-cancer) days in a heartbeat if I could wave a magic wand and do so.  So I get what you're saying...all I can add is that you do give meaning to this board, and have made a difference in the lives of others.  I hope that you can find some outlet for your kind and creative spirit IRL.   It would be a shame if we were the only ones to benefit from that!  I wonder if you've ever thought about taking up the profession of blogger?   You have so many things you could write about (not just cancer), and I have seen a number of bloggers get a book deal out of their sites.  It's a long term plan for getting published, but you have a story to tell, and an eloquent voice with which to tell it.  AA

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Seeing your faces...and hearing your voice through your thoughts...

Not a better salve on the market:)

Cancer is an ALL-Encompassing disease...and operates at more levels than we realize.  This is an important post, because the majority of the focus of this board...is for the Quick Fix.

We know it's not quick...but most of us are reticent to tell new folks that...and in a way, we have to let them discover things at their own pace.  Still, there are many of us in the latter years of the cancer fight...and while I aim the message that way, I'm hopeful that others read it and the other replies and file it away in case those perspectives ever need to be retrieved.   

While this topic may not relate to new folks, I still think it's good that they do hear it...it offers an invaluable perspective that has taken many years...and a couple million insurance dollars to tell them about.

Priceless in my opinion...

I'm glad I was able to open the lid on this one...Thank you all!

 

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

I like that comment you slipped in about the insurance dollars. I sometimes refer to myself as the million dollar man
Although I don't feel like a million bucks.

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

It has been my catch phrase from the beginning and remains so now. Surviving survival is not easy! I am 15 years clear of ca .Great! Never has it been so life threatening to me. I'm having an ultrasound done of my heart on Monday to see how much damage has been done to it.
I'm good at my job. That does not mean that after 50 years of working that I want to continue. I don't, my capabilities no longer keep pace with my desires. What I used to do in a day now takes three. People give me leeway on that ,they say that they understand how I feel. They are aware of how I feel because I no longer try to mask my emotions. If I'm tired I take rests.If i feel ill I take constant rests. When my hands cramp up so bad I can't hold the tools I take a break. They are aware but they DON"T understand. If a job is urgent the pressure is put on me just the same as it ever was.
It is no different at home. I live alone,the buck stops with me. We have just had a huge storm. It travelled two thousand miles down the east coast. It broke all time rainfall and flood leves on that trip. when you are alone the only salvation you have is yourself. For 36 hours I managed to bail and mop and keep my rented unit from damage. Only one person rang during that time to see if I needed help and storm wise they were in a far worse state than me.
It is morning here in Australia. When I get up everything creaks and groans,literally. When I flex my hands they make a noise like ice crushing. It takes around ten flexes beffore they work ok. The pain is bad which I don't fully understand. How can something be numb but still cause pain, I get up carefully,left leg first,my right leg ,well I can't trust it anymore. It let me down again last week and I hit the floor. Happens fairly often.
It hurts to eat . During chemo and subsequent treatment with immuno-suppressants I have had numerous teeth die. I get root canals done. The teeth often break up. Three have done so at the moment,all molars,I will get them fixed when i can afford it. Now ,well it just hurts to eat.
People who have had cancer often believe it makes you stronger. It does but not in ways you want to be. It makes you stronger to put up with the pain ,it makes you stronger to put up with the depression and uncertainty,it makes you stronger to put up with the loneliness and isolation and it makes you stronger in your indifference to death and dying.
Well it's time to go to work again.Oh Joy. This post comes with a disclaimer..This is my life. The only illusion that we can truly lay claim to is control over our own lives. That being the case I am in a plane ,on fire and all engines dead and not sure how far it is to the ground and i don't have a parachute. My hope for all of you is that your plane is flying straight and true with all engines purring. when all is dark and hopeless I fall back on the words of desiderata. Things are as they are meant to be. Hugs Craig ,,Ron.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Good to hear from you again...that's some unbelievable weather you've got in Aussie....it reminds me of the movie, "Point Break"...where the huge tides were coming in for the 50-year storm in Bells Beach, Australia.

I wish that we could be there to help you, Ron....cancer sux...but it sux worse alone...at times, when you really need the help...like now.

I'm seeing now what issues I'll be carrying around with me from here on...and I suspect that over time, they will worsen if I age....there are mornings when I feel I just can barely get dressed in the time that I have allotted.....lots of scar tissue and radiation damage to the hips, butt, and lungs...can make things challenging. 

Sometimes, just trying to tie my shoes feels like an Olympic event:) 

My hands have begun to cramp...neuropathy is more of an issue in my feet than it used to be too.

I loved your comments about what folks think cancer makes you....I agree with you....it makes us all of that...we can't cry or pity ourselves too long...few would really care...in a busy society, you either out there or not....it's harder to keep up at the pace.

And work.....yeah, I get it.

I will only add that cancer (for whatever reason) upped my Empathy meter and turned me towards folks like you and everyone that we've talked to...or will talk to in the future.  That's the sliver lining that I take from it...I use my pain and redirect it to try and support others...I feel that cancer doesn't win that way...instead of burying me emotionally, it had the opposite effect.

But, as you say....desires wane...and working for the man on his clock was always challenging...and even tougher when we're beat up.  Maybe next time, Cancer will retire me.

And I would close by saying, that things may not be as they are meant to be...we didn't deserve any of this....all we did was make the best out of a life threatening situation...and for those of long timers who have survived many years, we've learned to deal with some of the aftermath...not because we wanted to...but, because we had to.

How I wish that were not so at times...

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Call me "Swami." 

I see into the hearts of all you folks...I don't know all...just a little:)

Thank you for your wonderful suggestion to blog...I appreciate your insight always...cancer is a part of me...but not the whole me...and I think I could write about a great many things too.

Did I ever tell you the time when I was 20, that I wrote Tex Schramm, then GM of the Dallas Cowboys?  I wrote them a 27-page letter, LOL!!!!  I got a personal response with a real, personalized signature from him....they took my letter (hand written 27-pgs) and posted it at the practice field for all the players to read.

I'm bummed, Ann.....even though I had no direction in my life and was left rudderless....why couldn't I figure out on my own that I had 'something'...

After I wrote that letter at 20...I wrote another paper for a creative writing class in college...my skin was thin....he bashed it with no real constructive criticism...and it would be another 25-years before I put another pen to paper.

All of that time......

Thank you so much for your time and your kind words!

-c

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I'm really enjoying this thread...love the responses. 

Anybody else?

-c

maglets's picture
maglets
Posts: 2402
Joined: Jun 2006

after you meet NED a few times it seems euphoria is one of the first emotions....extreme euphoria but I think you are right Craig.....cancer takes its toll and that is never going away.  I seem to work out a lot of anxiety, fear, panic and threat in my sleep.....well so-called sleep....2 or 3 consecutive hours are the most I can rally.   General anxiety is never really far away.  During treatment we live in such a heightened state of threat for so long....it feels very very difficult to let it go.  Let's say I lose my car keys.....my anxiety level rises quickly and way out of proportion.....

After four years I do not think of cancer all the time.  I am retired and now run an ebay business selling stuff from home.....my financial needs are tight but not critical.  Sometimes it seems I am almost blase but I know if and when cancer returns, I will be just as nutty fruity terrified as I was the other 3 times.....scanxiety happens every 6 months but in between times  I get a little semi cancer free time.  Not in my dreams though.....the trauma of surgeries and chemoes does not recede easily.....hush now MaggieMay......I really really do not want to go upsetting any newbies....

hang in there dear LeoLion

mags

 

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Hey there!

No, you won't upset the new folks...I do enough of that for the both of us:)

Somehow, I feel in my heart (truly) that cancer is finally in your rear view mirror...there will always be the specter that stays with you...the post says we can never get away from it.

Truth be told...I don't think we ever really need to forget it...it keeps us sharp, it keeps us diligent.  Fear is a great motivator...and an even better teacher.

I hope that I never get so far removed from cancer, that I lose my edge...I've got to stay close to the people....for I hear their cries. 

-Donna's Lion

PatchAdams
Posts: 272
Joined: Nov 2011

No matter how well my day went, I know exactly what you meant when you said    I seem to work out a lot of anxiety, fear, panic and threat in my sleep...  Not in my dreams though.....the trauma of surgeries and chemoes does not recede easily...

I should be overwhelmed with relief that my solitary liver met at 38 months post dx is gone and my PET scans since then (8 months worth so far) have been all clear but a twinge throws me into panic.   I keep telling myself, 'It can't be cancer of the xyz because you just had a PET scan 5 1/2 weeks ago!'  I can fall asleep quickly yet wake shaking all over, heart pounding from some 'you've got cancer in your big toe' type dream.   I've had to stop watching some of my favorite shows because they kept showing 'rib spreaders'.  

You're my hero, Mags.  

Secondly,  I get bill collector calls several times a day because of co-pays for PET scans, surgery,  radiologist, anesthesia.  I'm thankful for good insurance but the $4,600 per year out of pocket maximum when we live off $1,200 a month social security is impossible.  I tell the same story to the same people every day.  Thinking about getting an unlisted number after having the same one forever.  Those calls throw me right into a funk because I know I have another PET mid April and here comes the new year co-pay.  

Patch

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for an outstanding post.

hugs

judy

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Short and Sweet:)

Wish I could do that...:)

You've known me long enough now to know that I couldn't sign my own name in just one page!

LOL!

-Craig

Trubrit's picture
Trubrit
Posts: 1397
Joined: Jan 2013

I don't get upset by these posts, though there are days when I cannot handle reading them. Funnily enough, I find I can read them during my chemo days. The days after infusion and when I'm on the pump, and the days I feel sick. When I'm having my good days, its as though I don't want anyone raining on my parade. 

I appreciate any post that is thoughtfully written and spoken from the heart. I appreciate your experiences and your emotions and insight. And of those who have replied. 

Its a cold hard fact that we are living a life with cancer, no matter how many years they tell you you are NED. I can see that already. I have every intention of kicking my cancer, whether or not I do remains to be seen, but thats how I face every day. Still, I don't have my head in the sand (I think its up my butt where all my attention seems to be focused) and realize already that every little niggle, every day I don't have a normal BM, every time I have an odd sensation, I will fear that it is cancer.

I do so hope for a day when its not all consuming though. I long to slip into my bath full of bubbles and be able to relax like in my pre-cancer days, and not have cancer consume my every thought. I work at it, but still it invades. 

Thank you for your posts. Your life has meaning to us, and it must have meaning to you. To help others is a skill and you have that. Thank you!

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Hi Trubit

It's nice to meet you and thank you for posting. 

It's great to feel needed....and even better when you feel wanted...I appreciate your sincere comments.  I see things now clearly after all of these years living with cancer...and I try and share that perspective with new and old alike...

I feel we must always listen to someone who has traveled the roads we've yet to discover...they've already been to where I'm trying to get to...

And I'm just trying to pay it forward to anyone who will talk with me.  Thanks so much for stopping by today - it was great running into you...and I want to wish you the best going forward. 

Let me know if I can be of any help.

-Craig

 

maglets's picture
maglets
Posts: 2402
Joined: Jun 2006

Dearest Leo: I like your predictions my friend.....if you see cancer in my rear-view mirror that is just ducky with me and I will take that as a firm predictionSmile.

well thank you Patch for those kind words.....maybe ladies of a "certain" age  just don't sleep well no matter what.

and Trubrit.....how nice of you to drop in.....wishing you all the very very best for speedy healing and continued health.  I am glad to meet you and also glad to hear that our continuing survivor stories do not disturb you.  I can identify with your choosing your days.....I remember on treatment days I wanted to talk to everyone here who was also in treatment.

 

sorry sorry Craigster.....will not interrupt again.....promise

 

mags

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

Steve, you're not alone.  I completely understand where you are coming from. I feel like I could cut and paste 90% of this article and feel as though the article was written specifically by or for me. I see a man who's both physically and mentally immersed in his disease and is trying his best to deal with it. Cancer doesn't come with manual, we have to figure it out for ourselves and in that process we learn. I learned quickly to compartmentalize my illness, visit it when I have to and put it away when I'm done. I will not let cancer was be the center of my universe. I do my best to distance myself from cancer and all things related. I get sad when I come to this site, that's why I do not frequent as often as I should. I understand that people want to know what I've been doing to beat this disease and I'll tell them, the same thing that Pete tells them, find happiness in something and love the ones your with, sounds corny, but i'm certain it's helped me beat this disease.

Things can get better, I'm living proof. I'm giving this disease all it can handle and have manage to push it back 3x.  Even though my cancer has given me a very bumpy ride, I'm happy to be around another day.  I love my life!  I work hard at my business (I do like your idea of not working after thwarting cancer for 3x, sign me up:)) ,  love my wife, 10 year old son, and family and friends. Even though I'm NED, I understand that there's a good chance that my cancer will return and ultimately win the war. In the meantime, I'm living for today and enjoying life as much as I can.

Buster

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Hey Buster

Glad you liked this post....

For folks who have had cancer many times...over many years, I thought this post would resonate with them. 

Congratulations on your success...another 8+ year guy...and 3x cancer...you sound like my kind of guy.

This post has some wonderful expressions in it...especially for long time fighters...and it's so validating to hear from so many, who feel like this post was written just for them.

I've got to let you in on a little secret...

It was:)

Thanks for joining in on the post...

-Craig

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