 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Nicki,
It seems like yesterday...I remember well everything as you describe it. A year later, my butt still hurts when I sit for very long. I already had the Asian no-butt and now it is worse.
Hang in there, it gets tough but it will improve soon. I remember when the Jevity or whatever I had started tasting so bad, I gave it away to the home health care agency (5 cases). A month later I was buying Boost and regretting the extra cost. I never could get up to much more than 5 cans a day without barfing it all out. As someone else said, if it won't stay in, look at feeding through the port (TPN). The portt was a live saver for me and especially on the fluids.
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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