#53444 05-02-2004 12:26 PM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | OK, all you out there who have been on this Board for what seems like forever........lets talk about the importance of humor in our fight with this crap, case in point, never fails,I send a pic of Frank post 6 surgeries, with bunny ears, and people think I`m some kind of pervert. We have pics for all the holidays, we never stopped laughing about silly things, like me learning to duck when he coughed, of course he did manage to hit the cats on occasion. After his first surgery he weighed 118 and I was 90 lbs..........we tried to carry the kerosene heater in, and both got to laughing because it was too heavy for us. We never stopped finding something everyday to laugh about, even if it was Frank taking his own picture, truly scary ones! I remember the day after one surgery, that I pulled the drain out of his neck, looked like a snake.........kept thinking about Gone With The Wind, I don`t know nothing about birthing no baby ! And then there was the time he got obsessed with blue pepsi thru his peg tube, and I`m trying to figure out why his wound packing was blue and smelled like berries, I`m sure his docs thought I was bonkers with that story. And then the time came when we would be out someplace and he would use his sign language, and I`d use use it back, our own secret language. I know lots of us have funny stories to tell, and don`t we deserve to laugh........Hugs to All......Dee | | | 
#53445 05-02-2004 02:34 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Humor is always good, Dee. We were just about at the end of our energy trail one night and I had struggled to get down every last bite of Chinese food for the first time in six months. We both were reading the fortune and at exactly the same time we both blurted out, "This is supposed to be your fortune!" and we passed them over. When we looked down at the other fortune...it was EXACTLY the same. We laughed for 20-30 minutes hysterically. We really needed that, too!
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
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#53446 05-03-2004 01:15 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Having been married to a blind guy for 18 years you learn to laugh... a stray teabag caught in a cleaning cloth leaves 2 million tiny tea leaves over every tiled suface in the house... took me days to eradicate them all... so yea we need the humour in our lives...
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
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#53447 05-08-2004 03:50 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Getting a new jaw bone makes the mouth not work as well so I had some issues learning how to eat again after surgery. My grandaughter, Shelby, who was 3 at the time took it upon herself to be my little helper. When food would fall out of my mouth on to my numb lower lip (i was clueless) she would HOLLER out "Nana, you're leaking again!"
That was a kind of cutsie one, here is one on the far side of humor. My daughters and I share an odd sense of humor and we tend to find humor in ANY situation. Remember that my left lower jaw bone was taken out and replaced with the bone from my lower leg. My daughters will tease me that I "am putting my foot in my mouth again". Funny that humor can be found in cancer. Again, just another way to beat it.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#53448 05-08-2004 10:45 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Well Minnie.. Kids just tell it like it is.. for my part what ever scars I finish up with having a blind husband he ain't gonna worry at all...only he will if he thinks it bothers me.. take care 'don't put your foot in it to often'
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
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#53449 05-09-2004 01:09 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Frank and I shared a weird sense of humor too.....one of the tee shirts I bought him last summer said "Cemetery Dance, Let the Dance Begin".......and Minnie, the foot in the mouth is great,wish you`d told it before, since Frank also had leg bone for jaw bone...........Love and Hugs, Dee | | |
#53450 05-09-2004 10:59 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Have decided God has a warped sense of humour.. why else would he leave a blind man with a silent wife.. or maybe John's prayers were answered.. always said I talked to much.. still I can still annoy you all on this forum.. thank you god for that one...
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
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#53451 05-10-2004 04:27 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | When I first got the diagnosis all I could think about is how much trouble my tongue had already gotten me into all my life. I told the doc I may finally get the chance to have friends if I just keep my mouth shut. My father came with me and I could hear him in the background whispering an AMEN.
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
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#53452 05-10-2004 10:57 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | OK, Guys, what does it mean when your shrink gives You a going away present? I saw him for the last time today before my move, knew I was going to cry and hug him.He was always there for Frank and I during the bad PTSD times and was a great comfort to me after Frank`s death....he said "you know he`s with you" Anyhow, last time I was in, I commented on a beautiful Indian statue he had, told him Frank would have wanted it, doc said he would have given it to him. I took one of Frank`s crystals that Frank`s always carried with him in a little pouch that always went to hospitals with him, I knew Frank would have wanted him to have it, so long story short, I got the Indian, and bless his heart, my shrink`s email address too.I think I`m going to miss him more than anyone in Maine, he has truly gone the extra mile for both of us. I tried to convince him to come along, but we`ll be staying in touch.........so, was that a sorry to see you go gift or glad you`re going gift?.................Hugs to All........Dee | | |
#53453 05-10-2004 11:16 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Well Dee
Don't know what to tell you lady.. only you would have a shrink that gives you presents.. could be worse could have been a new broomstick..
love and hugs
W W of the E..
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
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