#69826 02-13-2008 09:32 AM | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I know this is a strange feeling but I'm almost afraid to hope. My husband seems to be so much better all of a sudden even with the second round of Erbitux on board. I feel like I'm being foolish to believe that things might be turning around. God knows my husband deserves a break. He has been so strong through the surgeries, treatment and knowledge of mets to the lung. Has anyone else been afraid to be happy-if only for a little while? Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Never be afraid to be happy , but at the same time try to make the best of the setbacks. I wish you hubby well and hope he is kicking this.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Sue- Hope and a positive outlook will only bring you happiness and will make your husband stronger and be able to keep the cancer at bay for longer. Never ever give up hope. You NEVER know - miracles happen every day. The likeliness of it I cannot predict but I know that being positive will get you through each day with grace. Glad it is making him feel better  xoxoxo misskate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Sue,if you don't have hope,and some glimmer of possible better things to come ,what do you have?
Never be afraid to feel happy,even if it is just for a moment.and with this disease dont the silliest little things make you happy?
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Liz, It's amazing that the silliest things can make me feel better. Even just a smile on my husband's face does it. I think that it was so bad for so long that it's difficult to trust that it won't always be that way. Like he said, our family is closer and more tolerant of each other -which is a hard feat to accomplish with teenagers. Thanks so much for your kind thoughts. I just love this website. Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Yes! Yes! you gotta have hope! Hang on to the silly moments, the happy moments and enjoy them to the fullest! I remember lots of them with my son's recovery. . . even the ones where he got upset with me for not understanding what he was saying with his raspy almost inaudible radiation ridden voice! Just the fact that he had the energy to get upset gave me hope that he was recovering! (he was and he did!) I ended up telling him that I was really sorry I couldn't understand him but that he needed to be patient with me because I was old and decrepit and probably going deaf and I still loved him!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | Sue,
Never miss an opportunity to experience the joys of life, especially now. Take the precious moments and celebrate. If you look hard enough even the darkest of times will still shed a glimmer of light...and hope. You don't have to go overboard and think even one brief joy means everything has turned in your favor but you still have to enjoy each thing good. Soon, you will be looking more towards the positive and seeking them out instead of the doom and gloom that fear allows.
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
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I felt like you at one point. I was just so scared to hope I might be ok. It's a scary time because if you can't hope, what can you do but think the worst? That's no good for anyone. Take it a day at a time. If it's a good day, let the hope carry you high, if it's a bad day, ride it out and keep in mind that hope will be back soon!
Take care,
Minnie
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.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Minnie-Thanks for your thoughts. Your profile seems alot like my husband's. He is struggling to eat also. He has just started with the Carnation VHC and really likes it-as much as one can like liquid nutrition. I noticed you were having trouble with the eating as well and thought this might help. Have you had any prothesis to help you with the eating yet? Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have found out, one can live without a close love, but we sure need to keep the hope, even when things look hopeless. I've been running on hope like a race car does on extra high test gasoline. You just have to keep it and refueling. Can't run out of fuel halfway thru the race.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | |
| Forums23 Topics18,241 Posts197,124 Members13,309 | | Most Online1,788
Jan 23rd, 2025 | | |
|
