 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Do you have anyone to help you at all? It sounds like you are on your own.
Yes, it's hard to get nutrition and hydration through the tube. Many of us have and many will for the rest of their lives. It is just something you work into your routine. It sounds overwhelming because everything coming your way is so intense. It will get better and nutrition/hydration is actually one of the few things you can do that will make things much more comfortable.
In the past 11 years and 2 months I have gone through periods of no swallow twice. It isn't much fun and the second time I didn't have a PEG even. It took almost 100 days to get the swallow and digestion to start working but I did. The first time towards the end of treatment, it only lasted 37 days. You just get through it.
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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