 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Shawn, I'm with Paul. No need to direct any anger towards them. You need all the strength, energy and positive attitude so you can decide what you want to do. If you want fresh eyes to look at it you should seek out more opinions. You know how you feel and have enough information to develop a plan of attack. That plan could include hospice if you feel other options still point in that direction. The main reason they are around is preparation of end of life planning. They are better equipped with a shifting perspective from curing you to making sure you have other things ready. The only thing different is that you can't pursue treatment other than for palliative reasons.
You could keep proceeding to buy more time also. I am truly sorry you received the news that you did. The word "incurable" is pretty powerful. Whatever you decide to do please address your comfort first. You deserve that. If there is anything I might be able to do please let me know.
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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