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#15949 07-11-2004 06:34 PM
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
sll,

Sorry my original post didn't make it. I think it was the most inspirational and breathtaking one I have ever composed and absolutely the longest. I got an error message that my HTML flag was invalid and poof it was gone. That was Thursday and I just noticed it never was posted.

Anyway, I am 9 months post treatment without surgery and I still cough and hack when I eat. Sometimes food gets stuck in my throat and this wonderful human body created by God gets confused and generates a sneeze reflex to clear my throat. I warn people to not sit across from me when my throat feels a bit tight when I sit down to eat.

I had some bizarre behavior during and after treatment, too. I don't know if it was chemo or radiation or shock from getting cancer or worrying about the family or worrying about my role as father/husband of our family...or if I was like that before all this started. I just didn't really accept all I could do was all I could do. I paid the price several times. I still don't know if the two broken ribs I just found out about were from walking out of the bathroom with my PEG tube enteral feeding bag hooked under the door or my fall Thanksgiving weekend when I was passing out some. I still can't remember crap on a daily basis. I was an accountant in one industry for many years and I can still remember all the key numbers for several companies I worked for or consulted for but I just found out tonight from my 13 year old that my lifelong best friend visited me during treatment. He was going from Houston to Kansas for a funeral and was here overnight. I asked my wife about it and they both gave me a blow by blow of what we even talked about but I just don't remember seeing him. I forget people's names and even major street names, too. It actually has me a bit worried right now.

You have every right to be angry but you don't have to take abuse. Try to remember it is a combination of dealing with such a dreadful disease, disfiguring surgery, toxic chemo/radiation that is causing these reactions in your husband. We all know without our wives (or spouses) going through this with us, it would have been much more difficult. Hang in there and will be better before you know 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
#15950 07-16-2004 02:53 PM
Joined: Jul 2004
Posts: 4
sll Offline OP
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Joined: Jul 2004
Posts: 4
ed, thank you for the reply, it really helped me, tonight is our anniversary and i am still feeling bad and can't seem to shake it,,, but i laughed when i read your story about sitting across from you, every night we sit across from each other over candle light and i just want the candle to not flicker with the coughing etc. a light at the end of the tunnel ..., thanks again, you helped make me smile


s.l.
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