Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Didier,
I only wished you lived a little closer, my friend. I remember how often the nurses use to tell me I needed respite care. No shit! There just wasn't anyone willing or able to just sit with my mom for a few hours while we just got away. My lawn and landscaping flourished because it became my refuge. I had my cell phone on speed dial just in case and just worked my butt off in the hot Texas sun. I swore I would punch the next person who told me I needed a break. Unfortunately, life was not on my schedule. You are a very special person to keep at it no matter what. Even though this is so tough, your rewards will be great and you will never wonder if you did enough to help those who brought you into this world.
Vent whenver you want and let me know if you need anything that I may be able to do from so far away.
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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