Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jeff,
First of all as a member of the Club Nobody Wants to Join you have earned the right at any and all times to express exactly how you feel and summarize any groups of those feelings any way you choose. It will never be miscontrued as "whining". Just because we express what we are going through does not mean we want someone to fix it but sometimes we just have to say what others know EXACTLY what are going through.
I did not have the neck dissection and honestly, my neck spasms and pain are an everyday occurence and worsens by the week. I have hundreds of spasms a minute on the side that received the most radiation and when I look down I have L'Hermittes even 4 years later and now my neck locks up and I can't look back up when I look down sometimes without great pain and effort. My poor little dog wonders why I don't meet him "face-to-face" like I used to but he is so small I have to bend my head down to do it and it hurts like hell. I spent the first few minutes every day going through a ritual I call "teaching myself to swallow". Changes in temperature and cold just sucks.
I earned the right to express that and I wish chocolate would taste like it used to but I will eat it anyway!
Then again, today when my eyes opened, I smiled...
To paraphrase our old buddy Tom Hanks in one of his infamous lines...normal is as normal does.
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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