#57300 11-09-2005 02:21 PM | Joined: Jan 2005 Posts: 17 Member | OP Member Joined: Jan 2005 Posts: 17 | Hello all. I have not posted in months. I will be honest, this place scared me. After reading things I would just get so depressed and I would be down for days after. My wife(primary caregiver) and I decided to take a break from here for awhile. I have been feeling great. I lost 35 pounds and have little energy..but it is coming back. I have had my peg in for a year now and I still can't swallow foods. Liquids are alright but not like it used to. The speech pathologist figures with the exercises I am doing I should be back to solid food soon enough. I was not ready for the mental problems of the post treatment that some of you months ago warned me about. I have been seeing a psychologist for a few months now and that helps...A LOT:) The not eating is really frustrating, the not working is frustrating...I am only 26 and should be making a living not getting a disability check. I can say the one good thing of all this oral Cancer was that I am home with my son. We found out my wife was pregnant 3 days before my surgery...he has been my light at the end of the tunnel. Hope I can help people around here because I have just done some reading and got some ideas on recipes to try(soups) so thank you and take care!!!
Craig | | |
#57301 11-09-2005 02:44 PM | Joined: Aug 2005 Posts: 129 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Aug 2005 Posts: 129 | HI Cragi I hope that the exercises help you get your eating back. Just keep plugging away. How nice it was to hear about your son coming into your life at such a critical time. Enjoy him! Wishes for many healthy years! Tami
Tami Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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#57302 11-09-2005 03:38 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Craig,
I'm glad to hear you're seeing some improvement. Sometimes it seems very slow -- I know I was still healing (both physically and emotionally) well beyond the 1-year mark.
You have a lot to look forward to with your son. Please keep us posted as you continue to recover.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#57303 11-09-2005 04:04 PM | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2003 Posts: 136 | hi Craig,
i also had a long time getting back to eating right... after about 18 months i got my esophagus stretched and that did the trick.
clues that is the problem? when you burp, does the air come out easily or does it sound a bit like donal duck? i could drink, but it was real slow because the opening was the size of a paper clip wire... it's supposed to be about the size of a quarter.. after 2 stretches,, it's now about the size of a dime...
that was the big fix for me.
if you can't belch like a sailor, you might need a stretch.
we should be able to belch proudly!
cu, larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
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#57304 11-09-2005 04:12 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Craig,
I'm sure the intent of what you originaly read was not meant to scare you. This diaease is enough to scare anyone. Glad to hear you are turning the corner and starting to feel better. There are no shortcuts to healing from this treatment. It's a long and bumpy ride. Not working is one of the most frustating things along with the inability to eat well for me also. I have to get over that myself.
Keep your chin up and enjoy that new son of yours.
All my best, 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
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#57305 11-09-2005 04:39 PM | Joined: Jan 2005 Posts: 17 Member | OP Member Joined: Jan 2005 Posts: 17 | I know the intent was not to scare me. I was just not ready to hear some things. Reoccurence being one of them. After the 1 year Oct 8th I feel like a big weight has been lifted. I am injecting Resource 2.0 like it is going out of style. I do 6 drink boxes a day through the tube. It works out to about a pound a week.
I can burp like a sailor so I and the Dr's don't think that a small throat is the problem. They figure it is muscle damage. Exercise is the answer they say.
Thanks again folks. I think I will better appreciate this site more. Take Care!!!
Craig | | |
#57306 11-10-2005 04:10 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hey, Craig-Just wanted to share a thought with you. There are some really happy men who have decided to stay at home and become the primary caregiver to their children. Their wives had good or "more secure" jobs and they did not want their child in someone else's care. Some of them have opened an in home daycare for 3 or 4 kids besides their own to suppliment income. Many child raising studies show that kids benefit greatly from a strong and loving male influence, and if a man truly enjoys children, he is every bit as capable of being the primary caregiver. If you have the strength and energy to care for your son-then think of this as new career with lots of possibilities Hope you find more things you can eat soon. Have fun with that baby boy! Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#57307 11-10-2005 06:19 PM | Joined: Jan 2005 Posts: 17 Member | OP Member Joined: Jan 2005 Posts: 17 | My wife and I have "joked" about the idea of me being a stay at home dad. I love it but she somehow feels it is her job. She is a teacher and has a great job...she also does PartyLite on the side. I know she would rather do PartyLite and not teach and that is a problem area for us. Thanks for the suggestion. Take Care Craig | | |
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