#37149 04-02-2004 07:19 AM | Joined: Mar 2004 Posts: 38 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2004 Posts: 38 | Hello, My mom has been cleared to eat soft food/pureed food now, its been over a month, she is so happy. Her tounge in held in place and has a feeding tube. She wants to know how other people coped with eating while having a tounge that is immoble. Also what things can be pureed to eat, she is having dreams of tacos  I am wondering is there a cook book out there for care givers who cook for oral cancer paitents? I am a lousy cook and need all the help I can get. Hope everyone is doing well. Soon my mom will be home and able to talk to everyone for her self. thank you. annabel | | |
#37150 04-02-2004 08:10 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Annabel,
My tongue is immobile. I use a chopstick to move the food to the side I chew on tell her to keep moving the food back to the teeth to make sure the food is small enough to swallow and use water to wash it down or push it far enough back so she can swallow on her own. I've decided 3 glasses of water per meal and I'm done. I get water logged, but am still frightened of choking.
Try the Can't Chew Cook Book. I looked it up on Amazon.com and it looked pretty good. Although I can't bear the thought of purueed stroganoff so I didn't get it. My diet consists of yorgurt smoothies, yorgurt, pudding applesauce, scrambled eggs and ensure plus PEG tube feedings for now.
lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#37151 04-02-2004 12:30 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 | I used to eat so much yogurt, almost every day. For some reason, the yogurt burns my tongue and throat. I can drink pop but I am nervous about all the sugar feeding the beast. I have been fortunate in that I could eat two weeks after treatment. I didn't have any surgeries, though.
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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#37152 04-02-2004 01:38 PM | Joined: Jan 2004 Posts: 20 Member | | Member
Joined: Jan 2004 Posts: 20 | Hope this helps.....I lost over half of my tongue almost 5 yrs ago...lost a lot of weight but between the Ensure and puddings and anything I could get down, I have gained back quite a bit. Being tall ( 5'8") I didn't want to look too thin but right now I am holding at 148 and happy. I am 61 and doing good. After the feeding tube came out, I couldn't wait to get anything I could still "taste" into the blender and my first thing to get was a KFC meal. I peeled the chicken off the bone and put in my coleslaw and blended away. I love Hidden Valley Ranch dressing and add it to almost everything..or lots of gravies also do the trick. I recently bought a small cuisinart type blender and it doesn't pulverize everything as you control it. Most people do not realize that the less tongue you have, the more trouble you have pushing the food back to the throat to swallow. My Dr. told me to use my cheeks to squeeze it back there. I have chocked on rice or too much food so small bites are better with lots of milk or water to wash it all down. I have learned how to eat pizza out of the blender. Life doesn't stop for us unless we let it and I refuse. I am taking every new day that God gives me. If you need any ideas on eating, please feel free to email [email protected]. I have gotten real creative... Flo | | |
#37153 04-03-2004 05:32 AM | | Anonymous Unregistered | | Anonymous Unregistered
| You go Flo!!!!
What a truly inspiring message. Thank you.
Dinah | | |
#37154 04-03-2004 01:53 PM | Joined: Mar 2004 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2004 Posts: 38 | I agree with Dinah...your message put a smile on my face. I can't wait to show it to my mom. She cried so hard when the doctor said she wouldn't taste anything after radiation and that 75% of her tounge was taken. She does have a future with food, it will just be a pureed future The chop stick trick is very nice..I don't think I would have come up with that. Thank you for your responses. Annabel | | |
#37155 04-03-2004 02:20 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Annabel
My wife, and inovative cook, calls herself a domestic engineer, has come up with several tasty and high impact liquified meals.
She uses a blender set to liquify..
HERE IS ONE SMOOTHIE
1 8oz bottle of Boost energey drink (milk/ice cream)
10 chopped walnuts
1 banana
1/2 Cup apple sauce
1/2 cup Frozen Blueberries (Thawed)
2 packets sweet and low or sugar to taste
BLEND at LIQUIFY to desired consistency
Even I with TASTE BUDS FRIED can taste this.. and it is nutrient rich and goes down well without much effort.
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#37156 04-04-2004 05:42 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Flo, God Bless you on your positive outlook, very encouraging posting! LOVE hearing you are almost 5 years out.....Keep Looking Up!!!! Darrell, thanks so much for the smoothie recipe, sounds good!!! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37157 06-10-2004 12:51 AM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 26 | Flo, I am just beginning in the battle to help my sister get through losing 3/4 of her tongue (5/21/04). We are now in round II or radiation and round I of cysplatin chemo after surgery. Your thoughts and ideas are wonderful and I will keep them in mind when we get to the point where she can try to eat. Right now it is tube feedings only. She is trying to swallow water, but is having much difficulty. Thank you again for the positive outlook, it is inspiring ! -Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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