I know that doctor was an exception, based on experiences I've had anyway. But I decided that since we only have precious few minutes with our doctors, going forward I want them to see my stronger, positive, more determined side, and not risk getting an inferior care decision made because of a perceived weakness. I was fortunate not to need that surgery; if I had ended up "needing" it to prolong life, I honestly believe he wouldn't have done it. At the time I was 55 years old; the sudden Neuropathy came on 3 years before that, and I was fit/thin & athletic, a long distance runner and avid cyclist.
So, I didn't need him and was moving to another state anyway; but I sadly found out during the move that I had throat cancer. My new doctors in my new state, esp. the Thoracic Oncologist, of course were going to treat me, but with my Neuropathy warned me & coached me hard about the need for me to stay strong, exercise, and eat & drink despite the pain. It was a given that treatment causes Neuropathy in a lot of patients, and here I was already having an Idiopathic Neuropathy before cancer treatment. I could not get weak and slide. They said most patients lose 20-30 pounds. They implanted a feeding tube in advance of chemo-radiation to make sure I would maintain nutrition and hydration but begged me to not give up swallowing. I am proud to say I ate soft food, drank 1700 calories of Ensure per day & never even needed to use my feeding tube. After my last treatment, I recorded in at 5 pounds heavier than the process that started 4 months earlier! My Oncologist said he only had one other patient actually gain weight during throat cancer treatment. Even better, I am cancer free for 2+ years, and in some odd way, I feel like my Neuropathy got a tad bit better (I can't help but wonder if it was the Immunotherapy)
I think the cancer fight is what has added to my determination. As you know, it's quite a battle, and is very hard for us to get back up afterward. I don't want my healthcare providers to doubt my ability to endure what's needed for my optimal care if faced with uncertainty again. I feel so badly for you with the major setback you've had. Please don't give up trying. For your massage - have you tried Myofascial Release Therapy? One of our mentors is a huge advocate for it. She has provided lists of certified therapists, but none have been reasonably close to the places I've lived. If they did, I would be scheduling with them. Might that be an option where you live?