Jamie,

I am glad to hear you are busy, provided it is some time for you to catch up on things that were pushed aside for a while now. A real paradox of the treatment is that in order to eat and swallow you have to eat and swallow but you can't. It really makes it difficult to get back into the swallowing thing because the body has to learn to swallow in spite of the damage to all the muscles used for swallowing. Practice will make it better. It hurts at first but the more you swallow the easier it gets. I could not swallow ice and still after over a year it seems to stop at some ledge about 1/3 of the way down and then the cold just burns. I can drink milk shakes but eating ice cream gets painful. I can feel the lump where it stops but can't do much about it. I have just eaten my 3rd meal today without water. I had blueberry pancakes and bacon with water afterwards. It is hard for me to believe that 13 months after the end of radiation this is the progress that has been made.

Get your mother to try and swallow something. I started with milk and moved up to spaghetti noodles and then with sauce. Water was actually more difficult for me than anything else. Work the muscles. There is a great cookbook for people with swallowing issues and it explains all the muscles involved. It makes sense after the damage from radiation one would struggle with swallowing.

I hope your mom turns the corner soon.

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