Anyone else mad as hell about what the docs didn’t tell us??

Josephwc said:

My informative surgeon in India

Dear Susan, I shopped around quite a bit before I decided on the surgeon who performed my dissection and free flap reconstruction. If anything she has offered too much information. I live and work in India so my emotional stress has been increased just because I feel so far away from my family and closest friends. My surgeon has become a close friend and I trust her so much. 

 

The only thing that I was not told initially was to have all the metal taken out of my mouth prior to rad treatments. I watched a YouTube video and luckily asked I'm time to have two caps amd five fillings replaced just two days before treatment started.  I have two weeks to go. Wish me luck!

Josephwc,

No one told me to have my metal removed prior to rads.  My surgeon sent me to an Oral Surgeon and he didn't say anything about having my old silver filings removed and or my two gold crowns.  What did they say was the issue?  This is the first I've heard of that.

Tom

As a prequel to my answer, I am about 4 years out from my treatment for tongue cancer (surgery for hemigolssectomy, neck dissection, radiation, and a bit of chemo for good luck), and I'm deeply grateful for some very fine care. Despite what follows, I’m  happy to be around to gripe about it.  Now that the disclaimer is out of the way, yes, I'm mad as hell. 

In particular, just about all of my problems are the result of radiation. My radiation oncologist glossed over the side effects as if they were inconsequential, was very dismissive of my complaints, and just kept telling me in time I will heal. Well after four years, I figure whatever I have is here to stay, and if anything, some of things are getting worse.

 Some of the things I was "half-told" about. For example I remember being told that I would likely have dry mouth. I thought dry mouth was just some minor annoyance like the sensation you might get when you're a bit thirsty. Surprise, Surprise, Surprise, it's a whole lot worse than that. 24/7 my mouth feels like a bad hangover and at night I wake up several times a night because the pain from the dryness wakes me up forcing me to sip some liquid before I can fall back asleep. I can't recall the last time I got more than two consecutive hours of sleep.

I was told me some foods might taste different. What I wasn't told was that there would be way too many foods I will never be able to eat again, or if I eat them, I'll never enjoy them again. Fresh pineapple along with any tart or acidic fruits are on my no eat list. A margarita by the pool in the summer is totally out of the question as is just about anything alcoholic with the partial exception of some mild wines. 

Crunchy things such as a granola bar or corn chips, have the same texture as broken glass. 

Dental work on the lower rear portion of my mouth involves going to an expensive specialist dentist who needs to give me general anesthesia because the surgery disrupted the path of the normal Novocain injection rendering it ineffective.

I could go on about my issues, and even though I doubt I would have done anything different if I knew what my new normal would be, I still feel I should have been told. Yes, I could have asked more questions and done more homework, but the bottom line is the doctors should have taken more time to detail the consequences. For that, under the surface of my eternal gratitude for my doctors, there will remain a healthy dose of resentment, bitterness, and a feeling that they had no regard for the consequences of the treatment they rendered.