| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Have you checked out the recipies under Eating/speech/swallowing. There is a special subcatagory of food/menu ideas where there are many different things that are easy to eat.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Christine, I've got lots of things that are easy to eat. It's all those crispy & chewy things that sound so good and I miss so much. I only get to smell them now when my friends & family are eating them. If I get my teeth, well that's one more challenge met. Then Pizza, french fries, toasted Italian subs...........here I come! I'll deal with the dryness thing one way or the other, and that "shelf" in my throat, etc. At least I've gotten my tongue-stub pretty well tamed. When I talked to my Mom about someday having the surgery so I can get teeth, she said that after so much time, it will feel like I've got a house and lot in my mouth! That was a year ago, right before she passed away. She had a great, sort of wry, sense of humor, God love her. Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Lani, Im sorry for your loss. Its never easy losing a parent. Both of mine have been gone for many years.
Its also not easy not being able to eat. Do you use a feeding tube? Im pretty much a soup, yogurt and cream of wheat eater. It stinks!!!!! Dont know about you, but Im always so hungry. At least I have managed to keep a steady weight without relying on the peg tube. Hang in there, your day will come when you can eat.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Christine,
Thank you. I was surprised to find my eyes tearing up when I wrote that. I do miss her so much. She did live a long, happy, and healthy life, to just a few weeks short of her 87th birthday. She was still vibrant and energetic until just a few years ago, when her mind and body both began to fail.
October 12th this year is the 2-year anniversary of my last rad treatment. It's also my 59th (ouch) birthday. The tubes and I didn't get along very well and my rad treatments were stopped just a bit early because I had to have emergency surgery that day. My colon had twisted (probably because it had nothing to process) and was gangrenous. I was in the hospital for a month that time. I went through 5 tubes in 5 months - due to infection, med clogs, one fell out, one got sucked into my abdomen and my body was trying to digest it. I was very glad when they said we could take that last one out.
But I still recommend to people in treatment that they get one. They just need to actually USE it. If I had, maybe I wouldn't have gotten into so much trouble.
My troubles with eating have changed over these past almost 3 years. At first it was the cancer that hurt. Then it was the surgery. Then it was the 2nd surgery, which added the problems of an even smaller tongue-stub and no teeth. Then there was the burning from radiation which got progressively worse during treatment and took several months to heal. Still with no teeth, then the dryness started. Then, about 10 months ago, I started having trouble swallowing.
Now, after having my throat dilated 3 times, the remaining problems are that "shelf" in my throat, the dryness (which I think is improving), and no teeth. I'm going to Shands Oct 14th to meet with the surgeons, so maybe we can fix that teeth thing, too.
Yup, it sure IS a long and winding road we travel! At least I'm still traveling that road, though, and I have no intentions of stopping any time soon.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | One of my clients, a violinist is called Retaw - his mother wanted a water birth so named him water backwards!
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Tizz, And another goes out for the creative parents of the world! Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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