Hello everyone, If you haven't met me my name is Squamous cell c-----Ha Ha! But all attempts at humor aside. Shawn, Shawn is my name. And I was just sitting here wondering how I can get the most out of this, the most welcoming place that I would never wish on my worst enemy. I found out yesterday that surgery was a bust. still have cancer. And I think there was something inside me telling me, that if I had to have the surgery again just to gain more knowledge about where the cancer was, in what stage I would. So no regrets there, I regret that I put my life in some ones hands that had In the past make me go back to the pharmacy twice with my triplicate, In a fair amount of pain. Seems he could not write a script correctly to save his life! First time Ok it happens he forgot to put the number of RXs in the box that read void if number of RXs was not indicated. Second time he put my Birthdate in a date slot,.just not the correct one. See the second time he put my birthdate in the TODAYS DATE slot, and you can guess where he put the actual date. And I am sure that even then some would balk, He must have had a long time in surgery yesterday, or perhaps he had something very distracting going on in his personal life. Yes some would balk, I would balk. And did, in my mind I was making excuses for his behavior. I asked in the beginning, I mean waaay back in 2012 when cancer first reared its ugly head and neck. Never got an answer. Knowing in my mind that this HPV isn't just some antidotal finding. Then treatment was set on track. And before I even got to know the people who were bolting my head down to a table and giving me the business. (RRRGGTTTT- MMMMMMMMMMMMMMMM RRRGGGTT-) Well that's what it sounded like to me anyhow. seven weeks had passed. Everything was pointing in the right direction. As a matter of fact the office was so surprised how long it took for any ill effects to hit me. It was week four before I even started having issues with food and drink. And I was even letting myself imagine that I would not need it and they could just whip it out and give it to the next guy/gal. Heck I didn't use it. Not quite the case. I used it for about two months. So I never found out the first time around if it was indeed HPV. Fact is I didn't find out until yesterday that it was. So I regret my choice in doctors. No I regret letting that doctor put his knife in me. So anyone have regrets regarding treatment choices. Regrets maybe that you have not told anyone about that might be something to get off you chest. (like I just unwittingly did right here). And it does make me feel better that you great folks know. because I would have been guarded about some info if I keep my bad choices close to my chest. Sorry for the Rant. Regrets? And you cant say reading this novel either.-shawn U.

Shawn, I'm saddened by your turn of events and especially that you are being so hard on yourself. All of us went into this maybe a little blind than we are now. You could have done many things different and still be right where you are. Cancer is a strange bird. Take a little time and relax a bit as you choose your next steps.

My only regret is that I wish I would have stopped the radiation and asked more questions first, when the mask got loose from weight loss and second, when they moved the radiation center to a new facility. Also, I wish I would have demanded more kidney testing before any MRI contrast was given. I believe that is one of the contributing factors to my fibrosis that appears will kill me at some time. That is another real irony, to be cancer-free for 10 years and end up dead from the treatment. I won't go quietly and I will be researching and attempting to figure out how to reverse radiation induced fibrosis till the day I stop breathing. Or at least stop breathing for extended periods. I already stop often enough throughout the day and night!

I hope you know you can PM me any time for any reason. I'm just a click or two away. Even if you don't see me around here I will get an email notification.

Hang on there, Shawn, and clear your mind of all the trauma so you can do a bit of research and help formulate your plan of attack. It ain't over till it's over!


Ed

Thank you Uptown, I will take your advise to heart. And I too had lost weight and I didn't really speak up about it until one day I knew they had to be at least the slightest bit off. When I lose weight it comes off my face first.


And thank you for the open invitation, I just might take you up on that one day.-----Shawn U.

(((Shawn)))

It maddens me that your doc was so inattentive that he couldn't execute a script. And it maddens me that it all does happen so fast, when we are so ridiculously scared and vulnerable. Please don't kick yourself for sticking with that goofball. Try to remember how far more frightening it would have been at that moment to fire him, find a replacement and start over.

DonFoo once posted that he revisits choices only to look at what was good and bad, not to second-guess the decision made. That stuck with me.

You are definitely not the only with regrets; I wouldn't have surgery if I'd known I couldn't avoid chemo anyway. But there was no way for me to know that. And the benefit is that we got the tumor out of my airway.

You have a beautiful spirit, Shawn. Don't dampen it with regret, keep it aimed at the present moment and your future.

(((HUGS)))

Mama

Mamacita, Hope the evening finds you well.(or whatever time it is where you are). Gonna go with evening. Thank you for letting me know that I was not alone in my go with the flow way of doing things. I now know that I deserve nothing but my complete knowledge of what will be done and possible repercussions. and I was like you said, quite scared. Thank you so much for you kind words. And as they say." don't count your pills until your doctor gets a clue" So I have a whole new chance to get it right. Eyes on the prize.-----Shawn U

Oh now I know the difference between, reply and quick reply. I forgot to ask you how are you doing with your current TR. Mama? I was not a candidate for cisplatin My first go around with this beast. Due to my dual diagnosis. HIV can really interfere with standard treatments. They have to balance my health relative to both deceases. Oh Hubby has made dinner, lets see how much I can get down before im all full of liquids. have a good nite mamacita! ----Shawn U.

Shawn, I regret not pushing my GP when I knew something was wrong, and she said (twice) it was nothing, and the 3rd time told me my tumor was a canker sore and tried to burn it off with silver nitrate. This of course allowed it to spread and grow.

I also regret not eating a big, fat bacon cheeseburger for dinner (with my hands- no fork and knife)and a warm brownie with vanilla ice cream before my surgery. Sigh...I miss chocolate.

tina77, I hope you are having a good day.

I had to read it twice, She might have just as well injected you with the cancer of her choice.


I am so sorry that such a horrible turn of events took you here.

But why don't we just "get 'r done" and kick cancer's butt!

Shawn,

It's stories like this that validate getting second and even third opinions. I'm so sorry this happened but as they say, hindsight is 20/20.

I'm fortunate that I listened to my gut when my journey started. I went to the local doctors and hospital and while I liked my ENT, I was not feeling it with the RO or MO. It wasn't a team approach and one hand didn't seem like it knew what the other was doing. There were some other issues as well but I won't go into it.

I sought a second opinion at Johns Hopkins and it was a no brainer. I'm convinced had I stayed local, I wouldn't be here writing this.

Trust your gut, research and have confidence in your team.

I can't say I have any real regrets concerning my decisions about cancer treatment. Now my second wife? That's a whole 'nother story! ~lol~ But then I've found in life that I regret more the things I didn't do (What If's) as opposed to the things I did.

Positive thoughts and prayers

"T"

Yep, life's a bitch sometimes, but then again, so am I sometimes!

The point is, I'm still here, and not pushing up daisies!

T - you made the divorce lawyer laugh...I always say, it's cheaper to buy her/him a house...

Hey Shawn. Just new to the site and since you vented below, I do hope you are feeling ready for the next battle, I went to 3 specialist and numerous GP visits before they stopped treating me for swimmers ear and sore throat , one guy was convinced I has sinus problems. After 5 months and knowing something was not right "constant pain, not eating, living on pain killers. I found a specialist who listened actually looked,and who said to me mate I think you may have a problem here, 2 weeks later surgery and the the following week more surgery to getting all.
Now radiation treatment which scares me, I chose not to have chemo and asked that they remove 1/2 my tongue. My wife when she had breast cancer went the other way keep her breast did chemo / radiation and is now powering along 3 years later.
Hope all gets better after the storm mate. Pedro.

Welcome to the site Pedro, I hope that you feel better after radiation. which for me was the easiest part of treatment thus far. But we are all different animals and will have different amounts of radiation and or drugs. for me I think radiation was easiest because they could not give me the usual dose due to my HIV+ status.