 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | DAUGHTERS3,
I'm sorry to see what you and your family are going through. No doubt it is very difficult and unfortunately it will get much worse before it gets better. I don't remember any of the journey being easy but I found great people that were with me through it all. Make sure your husband keeps the pain under control and stays hydrated with lots of liquids. There's no reason to "tough it out" but there are many benefits to being as comfortable as possible.
Many have traveled the road ahead and can give you glimpses of what's around the corner. Many things are the same although each case is somewhat unique. Ask and you will get the answer.
Best Wishes,
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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