CSN Login
Members Online: 23

Paralyzed by Fear - NO MORE = NED - UPDATED

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

When he told me it was NED it was almost like I couldn't hear him.  For some reason, like never before in my life, (my service in the Army, my years of racing sports cars, the CT just 6 weeks prior, asking my wife to marry me :I, this one test got the best of me and for the life of me I can't say why.

I'm very grateful to you all for your love and support.

Joe

 

 

 

I've been afraid lots of times in my life, probably the worst of which, up to this point, was when I was sitting on my couch telling my wife Jennifer I had cancer the day of the biopsy.  As I get closer and closer to this first PET scan, I can feel my fear ramping up to a level of where I am just basically functioning.  All without letting on to anyone around that I'm teetering on the edge.  Don't get me wrong, we communicate but I just don't think anyone that hasn't gone through it can understand the abject terror of the thought of having to have more treatment when you are just starting to get better after six months of torture.  So, while I love my caretaker wife deeply and amazed how supportive she has been every step of the way, and I respect my MedOnc (who is my lead Doc) who has never steered me wrong and is a fountain of positive vibes, I am paralyzed by what if its' not clear? I/we can pray, nothing but positive thoughts coming my way, everyone close (and far) being absolute in their conviction that all will be NED.  And still the small voice continues "what if it's not clear"........................

J.

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Your feelings are way too familiar. With my scans, I tend to look at it as "the hand writing is on the wall" and there is nothing at that point that I can do to change God's plan for me.  My prayers today include that you feel a sense of elation like you have never felt before when you meet N.E.D.

God bless,

Candi

CivilMatt's picture
CivilMatt
Posts: 2963
Joined: May 2012

Joe,

You are normal.

You have been treated (aggressively), you don’t have any obvious problems, you have a good team, you are going to scan clean and clear (except for the scanxiety gremlins in your brain)

I hear you brother, I was thrown for a loop when the ENT felt something at 1-year (turned out ok).  Enjoy your health, go outside, go for a drive, do something to occupy your time and mind.

Here’s to the first of many good scans and remember there is normal “hot spot” to be expected.

Matt

debbiejeanne's picture
debbiejeanne
Posts: 2436
Joined: Jan 2010

joe, ur fear is understandable.  i am due for 1 n june and i've already started doing the "what if", especially since it has already recurred once.  that is normal 4 a c patient and we ALL go thru it.  just try to hang in there and stay as positive as possible.  you'll c ned b4 u know it.

God bless,

dj

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

Why you ask?  Because I've never had the courage to say anything about how deep the fear ran on these frigging scans.  The first one was the worse, tho the second scan was better (not a whole lot better, but better).  I couldn't think, eat, sleep....I was cranky, and edgey....my hands would get numb, and my ears went from ringing to roaring....and of course I suddenly got "symptoms".....little sore thoat, ear aches would come and go....pain behind my breast bone...I told that little voice over and over to just shaddup but he was always lurking trying to sneak in.  When I got the call that said all was clear, my knees literally buckled with relief....

Now....you are having your 3 month scan....you JUST finished a hellacious treatment that I'm 99.9999999999999% sure killed every one of those little cancer bas*ards.  Take some deep breaths, and when that little voice trys to interrupt, mentally usher that thought into a garbage can (truly picture that thought being lifted by the arms and ushered out of your head by brain rangers) usher it out every time it trys to sneak in...humans cannot think two thoughts at one time.

When the Dr. calls and tells you that you are NED sit down so you don't fall....it is the closest you'll ever be to palatable relief.   

It's gonna be clear....It's gonna be clear....

It's gonna be clear....

It's gonna be clear....It's gonna be clear....

 

 

p

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Joe,

Many suffer fear and anxiety, I fortunately do not. Like HWT, my deep conviction is our destiny is defined and controlled beyond what we can influence., I.E. you can NOT influence that you got cancer, you can not control NED or recurrence. If these decisions are predestined then why spend any mental anguish and less than 100% QOL by spending useless cycles on them. One should rejoice in looking back on one's life and being able to smile and say you spent all your time living as happily as possible. What a shame if one has to count and declare all the hours, days, weeks spent worrying and fretting rather than celebrating and enjoying life. 

Probably easier said than done but I know this to be true for me. Just about when I started radiation, my RO was carefully feeling is way over my neck and mentioned a lump on my jaw. It had presented about 10 days before and was quite sore at the lower back of the jawbone. I brushed it off and really did not give it much worry. I suspect some here would just freak out thinking it was some cancer growth or whatever. The thought did cross my mind; I do not recollect the specific response it got from me beyond a typical what is is. Last week he asked if it was still hurting and I said no. He gave a slight shrug of the shoulders while making a notation and stating we will just keep an eye on it, mirroring my feeling precisely.

Go out play some golf, take a walk with the wife, go to dinner but don't spend precious cycles on things you can not control! Live life 110%, that you CAN control! don

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I'm somewhere in between....

I do believe, though a lighter version than DonFoo that worrying, and being in a constant state of fear is pretty much useless and not productive, not to mention not healthy for you.... doesn't mean I haven't been there too though.

But that being said, I can completely understand your fear, and could easily be sucked in myself, and occasionally still am, I'm a work in progress, LOL. Simple aches and pains that I get now concern me after a few days. Before cancer I wasn't concerned..., usually if I got something, waiting long enough it would get better..., until once it didn't.

So I too ask you to try and be more concerned on the things you can control, and less on those you don't have any control of.

More than likely, based on others here..., you're going to be fine. At most, residual will show initially...

But with some luck, a few prayers, and the wonders of modern medicine...you're going to be good to go.

John

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

I KNOW that I am not in control of getting the disease or, for the most part, getting rid of the disease.  I am a person that does not concern himself with what I can't control.  I don't know that I'd buy that everything is predestined.  But that's just me.  All my life I've lived the WTF philosophy, if it's something I can't control then it's just a WTF.

What I was trying to do was get out, to folks that would probably understand, the angst of the first PET scan after treatment.  To be honest, this one should be the best it will ever be.  If anything lived through 3 rounds of Induction Chemo and all the RADS then, that's one tough beast and again there's nothing I can do about it.

It's just the soft, hypnotic voice that comes out of nowhere that says - "what if it's not clear" and then, for an instant I try to answer that question.

Thanks for all the responses and the affection.  You guys mean more to me that I can express.

Joe

CivilMatt's picture
CivilMatt
Posts: 2963
Joined: May 2012

Joe,

Ding Dang you are not paralyzed by fear?  Instead, you hear a soft hypnotic voice?

Yep, your officially abi-normal, welcome to the clan.  I knew you had it in you.

Now, say goodnight to the voice and put on clean underwear you have a good scan waiting for you.

If I knew (predestined) I would be here talking to you and meeting all the other great H&N members I might have thought twice about a romp in the HPV.

I think you are alright,

Matt

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

You are sooo correct.  My first post tx scan, the night before, I had that "other" still small voice saying to me "what if".  As the parent of five young kids ages 2-13 waiting on that post tx scan my mind kept playing over and over the things my children asked me during the 3 months of treatment.  Let me share a couple:  "Dad, how old will I be when you die"?  "Dad, are you going to die soon"?  Dad, I need you to get well"? (that last one was said by my then 13 year old daughter in a tone that still haunts me in my head.  My children had to watch me lose 70lbs during tx, see me have several "weak spells" where I would shake uncontrollably, see their dad with a tube in his stomach, see there dad lying in a hospital room from a dehydration episode....the absolute last thing I ever wanted to do as a father was put them through that...and knowing that "if" the scan was not clare they would have to see it again...was in itself fear.

I share all that with you not to scare you or one up you, only so you will truly know we do understand (and of course you know that).  It took me five days to tell my wife my dx results...

This past Novembe when they found some nodes and granulated glass appearance in my lungs....it all started up a again for me then too...as well as my wife.

Joe, I have had several scares over the last 15 months, been afraid plenty...and I AM a praying man....so at times like this all we can do is simply pray we are NED and  ask for that grace / healing because we have truly been through it.  So tonight I whispered a prayer the fear eases up (it's so normal) and that you do get a great NED on your scan.  It's the only way I have of saying I'm standing with you in this...I only wish I could do more for all my head and neck friends .....fellow warriors...so tmorrow you just whisper that prayer as well and let's look for NED my friend.

Best,

Tim

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

<< It's just the soft, hypnotic voice that comes out of nowhere that says >>

<< - "what if it's not clear" and then, for an instant I try to answer that question.>>

That is as natural a sentiment as ocean and blue sky. Of course, everyone one of us asks this basic question as a scan is basically a test, more or less pass or fail. So it is only right and naturalk to think about both outcomes. But it seems to be passing over an old trail beaten wide and clear during all that waiting and freaking out during initial tests and pre-official diagnosis and before we got read up enough to understand just the implications of what the crafty doctor-speak words and phrases actually meant.

We each are unique individuals bringing a total set of unique life experiences that has prepared us for this war to varying degrees of coping, accepting, viewing, philosophising, hearing and desiring to dig in or go for the ride. "T" mentions his experience with previous heart attacks and lived through the questioning of why am I still here, twice. I have had several near-death experiences, some short some extended, which have colored my sunglasses differently than most -- I am still here. Additionally, I live within miles, straddling some, very active fault zones, all OVERDUE for a big rip. Anyday, anytime, nearly guaranteed bad things are going to happen to 6 million ppl, dwarfing an event like Sandy or even Katrina. So everyday for me has WTF in the back of my head too including everyday briefly pondering the existence of my life on earth -- it only strengthens my daily resolve to live life to the fullest and think the best of mankind and spend as little energy on negative thoughts or outcomes. don

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Joe,

I would imagine if you are anything like Dan, you might think you are hiding it. The cooler Mr. Cool as Cucumber got, the more I knew it was fear. No one can blame you.. but what if.. it's ok? My suggestion is to focus on the postitive side, your sub conscience will keep you from getting too positive or forgetting.. but what if it's ok?

And I bet that beautiful wife of yours has her own fear going on.. I told ya'll about my fear, but he didn't really see it much. Some times letting the cat out of the bag and sharing it - helps. Rather than working hard to ignore the elephant in the room. :)

The good part for Dan was he started putting his energy into spring clean up things outside.. which gave him a greater sense of being normal, and was good for all.. tune out that voice for a while with new things.. and wear head phones.. harder to listen to voices with a little bit of rock and roll :)

It's ok to fear.. it's more than normal.. just try to find ways to keep it in it's place..

We should all enjoy every moment we can..

Best to you and hope this time passes quickly for you.

Kari

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Joe,

Yours is an interesting post in that "scanxiety" is an oft mentioned word and subject around here. I've yet to reach that point in the journey but I've struggled with the question and emotion of fear since this whole thing started.

I ask... how many here have faced death once or more and are still here to write about it? This question and my answer to it are what influence my feelings about fear and cancer.

I have cardio vascular disease and have suffered two heart attacks. The first in 2007 resulted in a triple bypass. It involved the main coronary artery/widow maker (95+% blocked) and two others. When the surgeon went over the details of what happened and the surgery I asked him how I survived. He said by all means I shouldn't have. Most men would have felt a little woozy and that would have been the last thing they remembered. I pushed for an answer and he said "First, you're in great shape. Second, you took two aspirin. That saved your heart from major damage. And third?......" He just pointed up. The same goes for my second heart attack in October of 2012. Three different arteries affected. One of which was 99% blocked. The other two over 90%. I had cardiac stents placed. Again, I asked the question and in nearly the same words was told the same answer.

In both cases, when in the midst of a heart attack, all I could think of was making the pain stop. I knew I was in trouble but I wasn't afraid. I drove myself to the hospital with the first heart attack. I remember getting within a couple of miles from the hospital and getting tunnel vision. My left arm hurt so bad I couldn't use it and I was short of breath. I was more concerned about passing out and crashing my car and hurting someone else. And what was really funny in retrospect were thoughts like "I should have done the dishes and picked up that dirty laundry in my apartment" and "Hmmmm... did I empty the cache?" ~lol~

And now? I've had so many make the statement "It has to be really scary knowing you have cancer". I don't know if scary describes it for me. I definitely understand how it would be and is for many. I also understand how a followup exam would bring on that fear but again, for me it's not so much a fear as it is an inconvenience. I'll admit, despite having been told they think it's cancer and then hearing the definitive "You have cancer" after the biopsy still made my heart skip a beat. More than anything though, it's been a major PITA! Having gone through the aforementioned health issues, add to that financial woes etc. etc., I was finally in a good place in my life. Things were going pretty darn well and then BAM! So when I'm faced with "scanxiety" I'm sure there will be a very brief mental interchange of "What if?" but knowing me, it will be short lived.

"Eat, drink, enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless, like chasing the wind."  King Solomon

"T"

 

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

J

I know exactly whay you mean. Most of the time I laugh at the voices because most of the time they want to get me in trouble.

But the "what if" voice haunted me before the fist couple of scans, I basically told it to F--- Off. Like you said you can't control what it is but I treid to keep positive thoughts through out my treatment and I wanted to do so afterwards. But you can't help but think what if I have to do it all over again..............then you really get aggressive and yell it out loud  F---- Off. Not only will you feel better as you turn towards your positive attitude, but when people look at you with that strange glance you get to say just that voice again.

All kidding aside, nobody knows what we go through physically and psychologically but my wife was with me every step of the journey and she endured her role right beside me, but most importantly as you will soon experience, she was there to celebrate the all clear.

Life is good..........enjoy the day

      Jeff

katenorwood
Posts: 1829
Joined: May 2012

Joe,

Thank you for being you !  I don't care who tells us what or how we should be feeling.  We each have an individual walk on this planet earth.  And by God we each have our own way of dealing with what gets thrown at us in this crazy old life of our's.  Yes, these scans NEVER ever get just simple.  You hit the nail on the head wih this one my friend.  Take a deep breathe and get through it the best way you can.  And know that we all and I underscore all have been were you're at today.  I will be praying for a clean scan...and remember alot of us have had hot spots show up...don't let that freak you out too much either.  Best to you Joe !   Katie

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

I suffered from that terroriablly in the beginning and even now.  The way I described it was the o my good moment was when the doc said NED and the I would leave office and walk to front desk to make next appointment and the clock would start ticking.  It would keep ticking in my head and by the week of test I would shut downninsidenof myself and the day waiting to go in I couldn't hear anyone I just prayed rosary over and over again.  I waited till I reached the point where doc said my cancer was considered cured and then I stopped so I could have quality of life.  I don't know in the end if it was right choice considering new problem with dsypaghia but it was a decision I made at that time. The test isn't the fear it's the waiting for results!  

 

Hhang in there Joe all will be ok.  I'll say prayers for peace and NED

MarineE5
Posts: 754
Joined: Dec 2005

I can't add anything more to what has been posted here already. Just wanted to state, that your internet family is standing beside you day and night, you are not alone in your feelings.

Positive thoughts and Prayers headed your way.

My Best to You and Everyone Here

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

Makes your knees weak, doesn't it?  I'm SO happy to hear that your news was good (I knew it would be)....but having you describe how it felt to get that news was almost like being there.

p

debbiejeanne's picture
debbiejeanne
Posts: 2436
Joined: Jan 2010

wtg, joe!  dance a jig around the kitchen, u deserve it.  congrats on NED!

God bless,

dj

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Amen Joe! I knew it would be good.

Beautiful words that we love to hear. Hold onto them.....you will get a lot of them!

~C

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I remember when you first "moved in to our community" and now you've officially graduated! I'm so happy for you! Now you need to find some time to celebrate all your hard work. Breathe.....
Billie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I knew you had it in you...., now you don't.

Now keep it that way brother...

Welcome to Club NED...

JG

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Joe,

Great news! Boy I was getting nervous there for you! So glad it was the jitters and very happy everything "is OK!".

Hope you two are celebrating tonight!

Many, many more good years of the same for you!

Kari (and Dan!)

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Glad you got the great news and put this behind you. Enjoy. don

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

J,

That's what I like to see! Congrats on the NED report! Now... celebrate!

"T"

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Feeling pretty good today.  Just ate two small slices pepperoni pizza (except the crust).  It was a challenge but got it down.

The other thing I liked hearing from the doc was my new schedule.  I'll have 3 CT's (head to pelvis) at three month intervals then one more PET.  After that it's CT's at six month intervals and no PET's.  Office visits cut from every week to every other week until I gain some weight and the swelling goes down on my tongue and epiglottis.  Won't see the Doc very often (every couple of visits or so.  His NP and nutritionist are pretty amazing)  He told me he has sick people to treat.

If it's alright with you guys I'm going to hang around here and see if I can help people as much as you all helped me.

Thanks,

J.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Great news! Thanks for sharing!

Deb

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I for one would be delighted to have you hang around for as long as like offering support and sharing your experiences...

JG

HobbsDoggy
Posts: 165
Joined: Feb 2013

Having a great support team at home and in the medical communty means so much.  The scans and check ups are gut turning and for clear reasons.  It should be a good thing in some ways.  It gives us a feeliing that we are now free again to go forward to do normal things.  I pray for clear scans for all.  We deserve some for all we have goine though. 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

On NED !! I am so happy to hear your great news !

Peggy

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Very happy for you ....ahhh, the grass is sooo green and the sky sooo blue today after that news wasn't it?  :)

 

Tim

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network