| Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | That is true Pete, if people did not pay the ridiculous price then they would lower it. I like the ideas that we have here and will give some of them a try. I am doing fairly well with the spoon and turning it upside down when I get it in the correct spot. If it is not far enough back then it is quite a trick to get the food to go down, but I am happy to say that I have been successful lately. I tried cottage cheese again last week and it went a lot better than the first time. My therapist loaned me a no chew cook book to look at and some of the recipes sound good. They only make 4 servings too so I could eat some and then freeze small potions for later. I am trying to get interested in making things to eat so that I will start taking in more by mouth now that I am a safer swallower. For now I still do mainly cream soups and things that I know I am safe with when I am home alone. I am training the dogs to call 911 if I choke. Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | My ex-wife is an RN and she sent this link to me: http://dysphagia.com/maillist/2002-February/msg00084.html This is what I was thinking of doing with a 20cc syringe.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Pete I like your ex-wife. I started to say that I can make anything with instructions, but that is not true. So many of the instructions assume that you have some mechanical knowledge and I truly do not. I seem to always do everything the hard way. My passenger side head light was burnt out. I have a book that diagnoses and tells me how to repair things on my truck. I got it out, and the instructions read to remove the battery, then replace the headlight. I did. The only problem was that my battery is on the driver's side of my truck. I will probably try a smaller syringe since one of my biggest issues seems to be taking too big of a bite at once. I keep telling myself "baby steps, baby steps". Much like your "patience, Pete, patience". Thank you for sharing this - I say again that you are a wonderful man. Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jim,
I know what you mean....My wife gave me a deluxe gas grill some 20 years ago for my BD. It had all the bells and whistles at that time including a side grill and a separate bun warmer but came in a box that probably weighed 300 lbs. When I opened it, it contained like 2000 parts and the instructions were written in Chinesenglish and the only picture was the one on the box of the completed grill. That was by far the toughest and most dangerous thing I ever had to put together. Even to this day I often thank my wife for that BD present. In fact I think another heartfelt thanks are in order today.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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