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#187085 12-08-2014 01:15 AM
Joined: Jun 2014
Posts: 86
ak123 Offline OP
Supporting Member (50+ posts)
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Posts: 86
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
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Posts: 236
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
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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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
Joined: May 2013
Posts: 134
Senior Member (100+ posts)
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Joined: May 2013
Posts: 134
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
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Joined: Apr 2014
Posts: 236
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
Joined: Oct 2006
Posts: 383
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
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
Joined: Jan 2013
Posts: 1,292
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,292
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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
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
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
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
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
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
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


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