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#187085 12-08-2014 01:15 AM
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ak123 Offline OP
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It's 3:00 a.m and I just can't sleep. I haven't been sleeping much lately. I have the constant fear of my brothers Cancer returning. I have the fear of hearing bad news at any of his appointments. I am so scared and I just don't know what to do. I believe he will be okay. The doctors say he will be okay too. I am so sad that he had to deal with all of this. I am sad that he is only 22 and has had the hardest time ever.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
ak123 #187086 12-08-2014 05:17 AM
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ak123

I know the feeling as I dont sleep much anymore either. My mothers cancer is always on my mind. Your brother is so young to have to battle this. My heart goes out to your family.

I know all cancer is bad but Oral cancer is just horrible. What I have noticed in people is when different friends and relatives ask "What type of cancer does your mother have" and I say Oral Cancer I get the impression people dont think its that bad. If they only knew the pain and suffering of Oral cancer Geeeez.

Prayers to you and your brother.
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


ak123 #187087 12-08-2014 07:59 AM
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What are you two doing about that nagging feeling in the back of your mind that is keeping you up at night? The caregivers and loved ones along with us on this journey have the roughest role. There is no attention from the medical team or anyone else around you unless you are making that happen. Some will see you as too busy; others will feel awkward in what to do or say so they sit back and wait.

Find some things to fill your life back with joy. Even if only for brief respites, don't minimize the toll this has all taken on you, too.

Recharge often. We can't do this without you by our sides!


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
ak123 #187095 12-08-2014 05:02 PM
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Very close to 100% of the things I worried about never happened.
I worried about freaking out in the mask. Never did. I worried about not finishing treatment. I finished. I worried about treatment not working. I'm clean 3 years. Now I want all that time I wasted worrying back.

I learned about midway through that the more time I thought and worried about myself the worse I got. The more I tried to help others the better I got. One day (and it was not a good day) I pasted a fake smile on my face and went to treatment. Someone told me I looked like I had gained a pound or two. Everyone starts asking what I did to get so much energy. It was a FAKE smile! I realized none of the patients were smiling. I certainly understand why but the impact it had was incredible. I started smiling every time I went in. Most times they were fake but every now and then it was real and sometimes I laughed. Worry is absolutely normal but I had to find something to chase it away or it might consume me. I pray you find something to chase it with too.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
ak123 #187097 12-09-2014 05:48 AM
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I try not to let my worry consume me day in and day out. I'm trying to enjoy decorating the house for the holidays and finding things to side track the thoughts and worry I have. It's really hard though. It's like the fake smile you mention. Somehow you pretend to be happy but the hidden truth is I'm worried as heck of what's going to be the next blow of bad news .

Hopefully with the scan that's being taken this week it will show some good news and then my worries will lighten up .

Happy Holidays
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


ak123 #187114 12-10-2014 01:05 AM
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Posts: 383
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Stay in and savor every moment. Stay positive and deny your mind that moment of giving in. Believe me, I know it's tough but even saying it out loud; that you won't allow the thought, or you disagree with the thought you just had can help. ChrisN is correct, kind of the "Fake it till you make it" syndrome. And you will find every now and then there's a connect (Or a disconnect) and that smile or laugh is real. Every moment like that helps!
Prayers and Best Wishes for you and your Mother (And Family).

Last edited by Steve F.; 12-10-2014 01:07 AM.

SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

ak123 #187128 12-10-2014 10:10 PM
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Here is how I dealt and deal with any negative thoughts. For every single minute spent worrying on such thoughts is one less minute enjoying and celebrating and taking in all the incredible wonderfulness that minute offers.

Stop right now and add up those lost minutes. Would you rather be able to count them and feel great knowing they were spent on wonderful rather than negative things.

The moment negativity enters your mind. Fight like hell and demand yourself to think about something fun to make you laugh, look at the incredible blue sky, or a beautiful flower, or call a friend and ask how they are doing, or .....

Life is far too short to dwell on the negative.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
ak123 #187132 12-11-2014 03:15 AM
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Posts: 236
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donfoo

you are rite life is to short to dwell on negative and believe me when I say I'm more a positive person than anything. Its just times when you find yourself in deep thought and wonder what is the next move.

I guess at this point and time things are not good . Its just been one bad news after another . Im beginning to just think ,wonder and worry about whats next. Treatment that is.

It's 4am and another sleepless night

Happy Holidays to All
Heidi

Last edited by sweetpe1; 12-11-2014 03:18 AM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


ak123 #187135 12-11-2014 06:20 AM
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Heidi, no matter how hard you try to guess what's ahead, the possibilities are overwhelming. Out of the huge pool of "things" that might happen, only a handful will. It's been easier for me to just shut it out and deal with it as it happens.

I know I keep saying this, but deep restorative sleep is very critical for your well being. If you aren't sleeping often, it's time to get aggressive. One sleepless night a week is too many.


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
ak123 #187138 12-11-2014 01:10 PM
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Posts: 236
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Uptown

I have told myself this is it. The worrying stops now. Hopefully most of my worries are for nothing .

AK123
I hope you read this thread and find some peace also.

Thank You For The Support.
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


ak123 #187141 12-11-2014 03:21 PM
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Posts: 134
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If it's just impossible to not go through the myriad of possibilities, make sure that you also consider the chance that the treatment works properly, The recovery goes better than expected, and the side effects are minimal. That has at least as good a chance if not a better chance of happening than all of the bad stuff.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
ak123 #187142 12-11-2014 05:34 PM
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Posts: 1,024
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My motto
"Don't borrow sorrow from tomorrow"

Enjoy today and each and every day,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
ak123 #187154 12-13-2014 04:21 AM
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Posts: 2,671
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Try to hang on to all the positive news and positive possibilities you see and hear . . . like the doctors saying he will be ok. That in itself has got to be something concrete to make you feel better. I still worry about my son and every minor thing that I see him experiencing. I've learned to give those 3am worry attacks of "What Ifs" a time limit and then make myself go on to something positive or I get up and do something physical. Instead of stressing over the long list of things that could go wrong (and most likely will never happen), get yourself a list ready of all the positives that could go Right. My son was a lot older than your brother when he got SCC and he's been cancer-free for over 8 years now! Your brother has youth on his side and has every reason to believe in the excellent doctors who are treating him and so should you. So start making your "happy" list for the next time the "what ifs" attack. And come back here often, no matter the time of day or night. It helped me and will help you.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



ak123 #187155 12-13-2014 04:39 AM
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Posts: 2,671
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PS - I have to agree with the "Fake it till you make it" theory. Especially when you are with your brother or your Mom. It will help them, and you, too.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



ak123 #187156 12-13-2014 07:12 AM
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Posts: 286
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ak how much help are you getting yourself? Is this 3am business common? We all have bad days, dark days, when its harder than usual, but you shouldn't be taking this all on yourself.

Everyone is saying "stay positive" which is true, but it has its limits. I would consider seeing your doctor if you haven't already. I saw 4 psychs this year. One to help cope with the diagnosis, one to cope with the treatment, one to cope with the recovery, and one to help the transition back to work. Add to that a combination of sleeping and anti-depressant meds. I'm not saying you need all that, but thats what I needed. All that was in addition to the physical stuff, the pain meds etc.

I'm sure I've mentioned this to you before, because I say it to all the caregivers. Your brother needs you happy and healthy, so you're in a good position to support him. Some caregivers (like Mrs OzMojo) grind themselves to exhaustion which does us no good at all. Eventually I was able to get her to see her doctor, get her blood pressure checked and all that.

If you haven't already, please see your doctor and take care of yourself.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
ak123 #187178 12-14-2014 06:00 AM
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It will be what it will be -- wise words from Bart, a previous forum member, who survived more recurrences than I have fingers to count with. During all his recurrences he maintained a positive attitude and helped a lot of people get through their cancers. He helped me tremendously. Here's a summary of what he taught me.

Worrying about anything won't change the outcome. If it turns into cancer, worrying about it won't have prevented it, it also won't cure it. So, why do it. If it turns out we do have cancer, we will face it at that time, why face it now when it may not even happen. If it turns out we don't have cancer, we can be happy THEN that we dodged a bullet.

All of us have plenty of enjoyable things we can keep our minds occupied with. Why waste our time with worry, it accomplishes nothing positive.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

ak123 #187208 12-15-2014 02:11 PM
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A psychologist once told me to reserve 1/2 hour everyday for my "worry time". If I worried outside of that 1/2 hour I had to push it out to my "time". It gave me a sense of control and worked for me. My cancer was a horrible time for me, but I am a better person for it. With the negative comes some positives. Put your energy into helping other people that are going thru it and focus on the good stuff for 23 1/2 hours.
All the best,
Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
ak123 #187217 12-15-2014 11:24 PM
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Worrying is like a rocking chair: it gives you something to do, but it doesn't take you anywhere.

I really like the idea of making an appointment to worry for half an hour a day.

I make it a point to not hold my breath.

Yoga, meditation, qigong, tai chi, Zumba, journaling, cooking, gym, phone calls to trusted friends and helping others are all activities that keep my mind occupied and away from worries even if it is temporarily.

I almost forgot, I take vitamin B under my tongue for insomnia.

I hope I can read my own posts in the near future when I need them, but then again 'don't borrow sorrow from tomorrow'.

I wish you all a Serena and restful night.



Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment

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