 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Anita and Lottie,
It is difficult I know but please understand a couple of things. Without treatment death is imminent. With treatment these after effects are still only a possibility and many don't suffer from them.
Lottie, your comment about PTSD is right on! Very insightful of you. The recurring cycle of clearing the oxidative stress and having it resurface is one theory of how "this" all becomes chronic. I guarantee having things go along very smoothly and hitting a speed bump like osteoradionecrosis or dental issues or neuromuscular issues is exactly what makes the recovery seem like there never was one. Enjoy the good days especially because of this.
I am truly sorry for what you are dealing with and hoping and praying for many good times through it all. Never lose focus of the great intervals of life! Never give up.
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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