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#35522 09-17-2007 01:53 PM
Joined: Aug 2007
Posts: 580
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Jeff,

Fear is normal. Ditto to all who have occasional moments of impending bad news. I have always got wound up prior to every follow-up. You will never not think about this again. The frequency, time and recovery from fear will decrease overtime.
Prior to your treatment you were preoccupied with absorbing sooo much information you didn't have time to focus on fear. Now, you have time to focus on what everything you went through was for. Accept your fear. Learn from it. It is a normal part of the whole process.

If you can figure out how to eliminate it, I too, would like to know.

Live, Laugh, Love & Learn!

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#35523 09-17-2007 02:31 PM
Joined: Apr 2005
Posts: 2,676
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Patient Advocate (old timer, 2000 posts)
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The lessons this 67 yr. old have learned are quite simple [to say-not to do] and they are that we need to be preoccupied with each day as it comes and try to enjoy it to the fullest, as if it might be our last. "corney-trite"-maybe- but if we could poll those we have lost- I'll bet they would agree. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#35524 09-17-2007 03:16 PM
Joined: Apr 2006
Posts: 378
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Hi Jeff, I don't think you ever get over the fear of recurrence, but eventually you get some perspective and it doesn't consume every waking moment. It was the worst right after treatment ended because it was the first time we could come up for air and think about it. It felt weird not to have the daily appointments, unsettling.

In the past year we've calmed down a lot and learned to go with the flow. Jack's had 3 biopsies and an endoscopy, things that lit up on his PET scans, unidentified "areas of concern" and more doctors appointments than I can count. Living with cancer is very different than being treated for it and we each have to find our own way of making sense of that one.

You'll find your balance at some point. Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#35525 09-19-2007 01:39 AM
Joined: Jul 2007
Posts: 44
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Posts: 44
I'm not sure I have anything to add, but ...

Shortly after my son's surgery, when his surgeon and the RO were sparring about whether he needed radiation or not, we had a lengthy visit with the RO. He gave us all kinds of facts and numbers -- and even used the "D" word (death, die, died) a few times.

At the end of our time with him, I asked, "So, what do we do now?"

He smiled and said, "You go out and enjoy the day."

Ultimately, my son decided against radiation. He goes for monthly checks with The Surgeon We Kind Of Think Of As a God and his first post-surgery CT scan is this Friday. Do I worry? Does He? Yes and YES!

But each time I ask myself 'What If?' I find myself answering, "You go out and enjoy the day."

And, somehow, that makes it a little better.

Best of luck to you,
Darcy (Matt's mom)

#35526 09-19-2007 08:01 AM
Joined: Feb 2007
Posts: 77
ccw Offline
Supporting Member (50+ posts)
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Joined: Feb 2007
Posts: 77
I look at it this way:

I'm a tough guy, I'm cured for now, and I can take whatever comes.

When I noticed a lump in my neck a short while back, I wept for a short period of time, then I saw my RO and he said it was fine (just a shriveled up salivary gland) but to keep my eye on it. That was about 6 weeks ago, and all is well.....

So now I'm back to being a tough guy.

Best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
#35527 09-19-2007 10:21 AM
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Jeff (etal),

Since I haven't hung out with y'all as much as I used to I will jump on the soapbox for a bit. Life is never a guarentee so take the time to MAKE THE MEMORIES!! Get your family portrait on the Great Wall, stand on the tip of a volcano in the Andes Mountains, trout fish on Chiloe Island, look at Mount Fuji from an airplane and the active volcano on an island in the Pacific Ocean, visit your best friend from grade school through high school, attend family reunions, go, go, go.

You never will live life as it was but live the life you have to the FULLEST. I just saw a man last week that is in his upper 80's and he rode the Tour de France route immediately after Lance won the last one. He fell and broke his hip but that's another story. He rode the Ideterod a few years ago.

As my wife always points out FEAR means False Events Appearing Real. Don't worry about what something isn't. There are trained professionals that will tell you when and what it is.

Check out Leroy Sievers daily blog. Go to NPR.org and search for him. It is great reading every day and not very long.

Wayne, please reserve an extra Christmas card for my family. I don't know that I will make it to the Great Wall ever but I would certainly enjoy seeing you on it.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#35528 09-19-2007 10:45 AM
Joined: May 2007
Posts: 632
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Hmmmm---yup! Decision just made. I feel okay enough, may never get this chance again---no, that's wrong, I WON'T get this chance again---so off to California next month, WITHOUT insurance, because it's 'ungettable' at my stage and the 1 out of 23 companies (specialist ONES!) QUOTED


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#35529 09-19-2007 12:00 PM
Joined: Sep 2003
Posts: 1,244
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Posts: 1,244
I can't get cover for my husband, so I've told him if he dies in Spain I will have him cremated and bring his ashes home. ( otherwise think of the excess baggage) eek
Sunshine (California sunshine) love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#35530 09-19-2007 12:12 PM
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
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Helen,

I planned a similar trip right after my surgery 10 years ago. My wife was concerned about the same issue, she was scared. I in my off sense of humor only booked one way tickets and said I'd book the return tickets if I was still alive and if not, I told her to book a return ticket for herself (first class) and give them my death certificate so it would only cost half and book me to fly cargo. I ended the conversation with, "Think of the money you'll save!"

Fear is fear. We all have to deal with it at some time.

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#35531 09-19-2007 12:27 PM
Joined: Jul 2006
Posts: 446
"OCF Canuck"
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Posts: 446
O.K.

I have a new goal. Chinese Christmas cards for my OCF family...

This one's gonna be EASY :^)

Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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