 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gita,
I re-read my post today and I just feel like it was so insensitive to say things the way I did. I hope you don't feel I was in any way saying you should give up hope and stop pursuing any other avenues. The truth is, my heart cries for your sister, you and the entire circle of family and friends. To get news like this at a time she is already so debilitated has got to be overwhelming for her and all of you.
I honestly don't have any suggestions in terms of medical care but I do have some general suggestions. I was curious if your sister is a US citizen. If so, there are a few things she could be doing now in terms of financial assistance, etc. I just wasn't sure so I thought I would ask.
I apologize for being tired last night and not saying things quite like I wanted to. I am thinking of all of you quite a bit and I hope for comfort and healing for all of you.
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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