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#178652 03-24-2014 08:31 PM
Joined: Mar 2014
Posts: 1
kfcdunn Offline OP
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Joined: Mar 2014
Posts: 1
From the little I have read, this forum seems to be filled with so much information. I am so happy this is available for patients and families. I look forward to learning from those of you who have walked through this journey before me to be the best support for my husband. I know I'm still in the denial stage and it hasn't really hit me yet. I'm overwhelmed and look forward to hearing from you.


Kimberly R.N.
kfcdunn #178654 03-24-2014 09:25 PM
Joined: Jan 2013
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
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Kimberly,

Welcome to OCF. There is a tremendous amount of practical experiences here, all available for you to research and ask questions when not clear. Virtually all of us here are cancer survivors or caretakers so we have been there/seen that for sure.

Please fill out your signature with the details you have so we can understand and help you better.

Don


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
kfcdunn #178657 03-25-2014 02:32 AM
Joined: Oct 2013
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"Above & Beyond" Member (500+ posts)
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Joined: Oct 2013
Posts: 559
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Hi Kimberly - Welcome to the family. It's a big one with lots of very supportive brothers and sisters to help you and your loved one on this journey. We have all been in your shoes and stood where you stand, so we know what you are going through. Even being an RN, I'm sure you are still terrified right now. Saying that it's normal for you to feel this way I'm sure doesn't help in the least.

It's really your lack of knowledge that has you the most terrified. That's where we come in. The personal side, the information about other people who share your same diagnosis you will find here on the forum. The technical or medical knowledge side you will learn from reading the pages on the OCF website. It's a steep learning curve for new members, but it will get you out of that terrified phase better than anything else. Ending the terrified phase is what will allow you to start sleeping again. So, get busy reading. The next few weeks will be busy for you and your husband. You have a lot to learn in a short period of time.

Last piece of advice for today, try to get your husband to join the forum also. That person to person contact will help him along his journey just as much as it will help you.

take care, write when you need information or just need to talk.

Tony


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

kfcdunn #178668 03-25-2014 08:34 AM
Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Posts: 5,260
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Hi there.... welcome... if you have questions feel free to ask. Everyone here has been there... either as a patient or caregiver. So there is a mass of experience and information available. hugs...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
kfcdunn #178670 03-25-2014 09:16 AM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Hi Kimberly,

Welcome here, I hope you read what Tony (n74tg) said about fear, he's absolutely correct, both in his analysis and his recommendations. Tony "get's it!"

He's also speaking truth when he says how good an idea it would be for your husband to join himself, you two are a team and both players need to be up to date on the current game-plan.

Also, seeing others who have walked the same path before you, and reading what they have to say will go a long way to helping your husband keep things in perspective.

Learning that you have cancer is not a happy thing, but it's not the end of the world either. Life extracts a toll for each of us for our passage through it, no one escapes the toll, we all just pay in different currencies. Cancer is just one of those tolls, and from that perspective, really just another day...


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
kfcdunn #178675 03-25-2014 11:48 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Kimberly, welcome to OCF. You have found the very best place for info and support. As a caregiver you have a difficult job. Dont worry, we will help you with everything. Just remember, always make some time for yourself too.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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