 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Robert,
Welcome to the club nobody wants to join. I feel safe answering for others to the question you are posing. ABSOLUTELY YES, we all have exactly the same problem as you. As time goes by, you will force yourself to look at your tongue in the mirror maybe once a week or every now and then versus 50 times a day at first. You will stop feeling all the aches and pains in your neck and thinking everything feels like a new lump. The days leading up to every doctor visit will be extremely stressful and most likely you will not sleep the night before.
The good news is, you have found a place where there are many, many just like you and the most caring bunch of folks you have ever run across!
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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