 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Heidi, you really need a sit down with the care team, including a social worker or Oncology Psychiatrist. With all that is going on you must not accept a "communication problem". This usually means someone is communicating from one side or another and the other side isn't engaging in the discussion. I hate what,you and your mother are going through. I cannot imagine how difficult this must be for you and your mother, but not resolving this communication is only postponing things that need clarification. Demand a conference call with the care team if you can't make it to MDA.
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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