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#54752 04-30-2004 05:29 PM
Joined: Mar 2003
Posts: 189
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Posts: 189
Dear Sabrina,

Your post gave me goosebumps! When I was about 21 years old, I also had trouble sleeping. I began focusing on a bare, white wall of my bedroom and repeated "love" until I would fall asleep.

I continue to use this technique 15 years later. Is this something we read about somewhere?????....or did we "happen" on the same type of meditation?

Love,
Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#54753 05-03-2004 02:24 PM
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Erik, two more weeks have gone by. the roller coaster attacks on your cancer are taking it's toll on you too. My wife used to tell me "dying ain't this easy". She's nuts. But I digress. You will make it and it really is the hardest thing you will go through unless you get stranded in the jungle in Sumatra in which case the dysentary is worse. Be that as it may (this is my attempt to make you smile even though I know a smile is probably not possible), take lots of great drugs, even the expensive ones for the gut. I took Roxecett by the gallon and $35 gut pills so I could spend some time with dignity outside the bathroom. You are or should be at the end of the treatments near as one can tell. The week after the end, it still gets a little worse. Then, it gets better, and better, and fantastic.
My daughter had me watch the Return of the Pink Panther or Revenge of or whatever. When Inspector Clueseau (sp?) tried and failed to get across the moat, I laughed for the first time in weeks. The pain in my mouth hurt from the laughter and caused tears but the laughter speeded up my recovery, of this I am sure.
We are with you Erik. Life really does get better. Flyboy


Tumor in tonsil pillar and soft tissue. 11/01 surgery & 7wks rad.
#54754 05-05-2004 02:08 PM
Joined: Jul 2003
Posts: 1,163
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Patient Advocate (1000+ posts)

Joined: Jul 2003
Posts: 1,163
Hi Erik,

We have all felt the way you do at sometime during the treatment and healing phase of this journey. It is normal. I am 6 months post treatment and I still am pissed at the quality of my life. I can't eat alot of foods that i used to love. I sure miss biting into a good BLT sandwich. Milk runs through my nose every time I drink it. Each swallow is a thought out process.
I am still on anti-depressents and my wife says keep taking them because I am a lousy companion
without them. BUT, I am alive and kicking. Back to work and the hardest thing to me is realizing this is my new life. You will feel better!!! It takes time. I thank God I have this time.

I can't wait to meet my new friends from this forum when the reunion happens in the fall. I know I will shed alot of tears when I meet the people who have helped me so much as I travel this journey. It makes me feel so good to help others who are just starting the journey. I can offer my experiences with my treatment and offer support to anyone I can. I was a loner before I was DX with cancer. I never knew how many friends I had until the cards started arriving. It humbled me. Please know you are not alone as you go through your treatment. You will get better. My contribution pales in comparision to some of the reguler posters. Gary, Mark, Mandi, KCDC, Judy, Debbie, Dee, Brian and so many others have helped me. I will be foreever grateful to the support from so many I now call friends. This is a pretty tight group. You to one day will be the one helping others who follow. I wish I could win a lottery and donate a million dollors to the foundation. Money is what the foundation needs. Brian has donated his life to this cause. He humbles me. So I am done rambling but remember one thing, You are not alone!!!

Best wishes, Your friend, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#54755 05-05-2004 11:41 PM
Joined: Apr 2004
Posts: 143
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Posts: 143
Great, Danny Boy, I never gave tears at the reunion a thought.....so now I have to buy waterproof mascara! But, you are certainly right, tears will flow. You were so very special to Frank, another Packer`s fan. I remember the first note he sent you, he wrote it and I typed it. And, yeh, wish I could win the lottery too for the Board..............and to Erik, hang on and we`ll hang onto you.....Hugs, Dee

#54756 05-06-2004 02:12 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
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Danny Boy,

It is so good to have you back. I was beginning to shy away, feeling a bit too philosphical at times and then you have jarred me back to reality. This entire process is truly a time of reflection; a time to remember; a time reach out; a time to love one another against life's plethora of turmoils throughout the world. Oh, I forgot to mention the sucky gasoline companies making record profits while we struggle to make the myriad of appointments looking for work and healing!

I'm ahead of you on the tears flowing thing. I've already shed a lifetime worth through sharing all the moments with everybody.

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
#54757 05-06-2004 02:41 AM
Joined: Apr 2004
Posts: 143
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Posts: 143
Ed, your post gave me chills, how true your words are, even with all the crap we handle, there is the opportunity to grow, realize what`s important in life, find great new friends. And yeh, Ed, truth be told, I`ve many a tear myself......Hugs, Dee

#54758 05-06-2004 07:11 AM
Joined: Sep 2003
Posts: 1,244
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Posts: 1,244
Ed, I have learnt a lot about myself on my travels of this illness.. I have had to learn to share my private emotions with you guys.. with complete trust that no one here will abuse that trust.. and I have learnt to stand up to the medics and say.. NO you are not God.. you need to listen to my input.. most have been fine.. but not all.. not my problem... I don't have problems..
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
#54759 05-06-2004 10:37 AM
Joined: Oct 2016
Posts: 284
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Posts: 284
Ed,

In case I haven't told you lately. You are incredible! You are so quick to respond to everybodys posts and always say just the right thing.......

Dani laugh


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#54760 05-06-2004 03:54 PM
Joined: Jul 2003
Posts: 1,163
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Thank You Ed,

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#54761 05-06-2004 04:00 PM
Joined: Sep 2003
Posts: 139
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Posts: 139
And thank YOU, Danny! You were the first one to welcome me here and I will never forget it. I was sooooo scared and you made me feel cared for and welcomed. This is really an awesome panel of "friends". So eager to meet many of you face to face! Especially you, Dan........
Judy U


Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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