 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | What are you two doing about that nagging feeling in the back of your mind that is keeping you up at night? The caregivers and loved ones along with us on this journey have the roughest role. There is no attention from the medical team or anyone else around you unless you are making that happen. Some will see you as too busy; others will feel awkward in what to do or say so they sit back and wait.
Find some things to fill your life back with joy. Even if only for brief respites, don't minimize the toll this has all taken on you, too.
Recharge often. We can't do this without you by our sides!
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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