Today is just one of those days where I have a lot to say… but can’t say anything at all… tomorrow may be different… but no guarantee… this time of the year is always difficult… not just for me… but for my wife too…
My mind is being out of control and all over the place…. Has been for a few days now…. In a way it’s not unusual especially around the time of my shot… and also with all of what’s going on around here…. Like I said…. Just “one of those days”…. However I know it doesn’t give me the right to be a crazy ass hole ….which is kind of how I feel I’ve been lately… if I’m not grumpy… I’m overly emotional…. And probably way too self centered and or feeling sorry for myself…
I had a doc appt this morning… not really news as there’s always something…. Some may know that I have a surgery planned in the beginning of October as I may have mentioned it on my page…. This surgery was originally planned last year but getting a cancer diagnosis kind of put that plan on hold for a while….
Because of an “event” in 2006 I have had multiple problems with my mouth and throat…. especially with eating and swallowing and food going down the wrong pipe…. My esophagus and stomach were also affected but as you might know they are out of the picture since my esophagectomy….
Now with this upcoming surgery they are mostly going to be cutting away lots of scar tissue and/or doing reconstructional work… I can’t really explain how or what but it involves my epiglottis, my vocal cords among other things… as well as possibly using tissue from my left leg/thigh to build up where needed… Sounds all good and dandy… maybe…. but the surgeon says they cannot “promise anything” until they do this… and that to me is sort of what makes me want to skip the whole thing…. Not to mention having to go through a recovery… possible complications….
Not sure where I’m going with this though…. In a way I need some reassurance or mental support… and maybe… although It’s probably different when cancer is involved… which it isn’t really in my case…. to know if there is anyone out there who has gone through something like this… the surgery… the recovery ugh anything ….
For now I’ll just send good vibes out there to anyone that may need it…
I keep repeating to myself…. This is going to be OK…. This is just one of those days…. But I know I need to be there for my wife as well… August is a month where both of us struggle with… We could use some too but I ask since my mind is not in a good place… please leave religion out of it for now….
<3
I think it’s normal for surgery and recovery to throw us off our game. It does me. You have a lot of insight which will help you. When I got out the ICU then rehab for the flu and double pneumonia I had a ‘minor’ meltdown … it had come on so fast and hit me so hard I couldn’t remember how I got to the hospital or the first week+ there so I was horribly disoriented. Spring had really sprung, I had only been in this house for about 6 months, I had physical and occupational therapy. Didn’t know until 2 days before I left rehab if they’d be sending me home with an oxygen tank .. which they didn’t have to thankfully. I ended up staying with my son and his family for a few weeks as I didn’t want to be alone. I knew though, that it would pass though I had my moments of doubt. You’ll get through this. Sending positive energy your way! Rooting for ya!
Sending good thought vibrations back to you this morning. ????
I’ve had several vocal cord surgeries due to vocal cord paralysis. I initially wasn’t able to breathe or speak. I had to make a choice so I ended up with a tracheotomy. Against the odds I taught myself to speak again, but how does the surgery involve your vocal cords? There very sensitive lil things that don’t like being played with.
They have to remove the scar tissue if it’s obstructing your ability to eat and drink. But I’m concerned with aspiration. Will this lesson the chances of aspiration for you?
I’m here to support you in anyway you need.
What kind of specialists are the surgeons. Ortholaryngology?
I don’t know for sure the right word for what doctor specialize in… but he has done similar surgeries here before but mostly on children with similar injures as mine and some on adults… including me a few times…
The talk of tracheotomy has come up…. you know I had one but thankfully not for long… I did tell him I don’t want to have one again…. The main reason for this op is in fact to help with my swallowing and including with aspiration … There are just so many “ifs” in there and that’s what’s getting to me right now…. I want to be able to swallow without the danger of aspiration…. I want to be able to eat more through mouth…. but none the less…because of my anatomy… I will probably still need the tube…. I will still have to have extra IV fluids… this wont help with my sense of taste… but with that said… If I don’t go through with this surgery now… I will probably need some sort of surgery anyway… just to keep my “pipes” open if that make sense :/
It does & I understand. After EVERYTHING you’ve been through a tracheotomy’s nothing! I’ve lived with mine 16 yrs now & I talk very well. But it’s the aspiration I’m concerned about with you. Yes, it’d be nice to eat and drink more but not if there’s any chance of aspiration.
I wish I was closer. I wish I could do anything to help. I feel helpless, but I’m sure you do too. Xxx Just know I’m here for you. Xxx
When i had my trach i couldnt speak but i couldnt for a while after i didnt need it anymore… i never even tried to… i really hope i wont need one… at least not this time at least… as for my ability to speak… you’ve heard that… ugh… :'(
You help plenty Gail… just so you know ?
I’m here if you ever need to chat.
Sending you huge hugs
I Love you & Sunna dearly, my Brother from another…sending you both extra ginormous huggles & massive love & peaceful, positive vibes. My heart hurts for you & I wish I could do something to help <3 <3
You are the strongest person that I ever met. Everything will be ok, I am sure !
Maestro, you know my situation with my cancer. We went thru the throat surgeries at the same time. Between the tumors and radiation my throat and vocal cords were shredded. I had a great surgeon. An otolaryngologist. He operated 3 times. With the help of speech therapy I am able to whisper. I refused to have a trach. Anyway, I know what this does to us mentally. Sometimes it helps to have a tweak in meds or extra sessions in therapy. I love you and wish I was able to do more for you. As long as I’m around, I’m sending you and Sunna positive vibes. If I haven’t said it before, let me say it now. You in your own special way, have helped get me through this last year. So I thank you from the bottom of my heart. If you need an ear for support, I am here for you 24/7.
You have helped me as well my friend… ?
There is a chance of me losing my voice in that surgery…. or at least it may change…. though i admit that’s way down the list of my worries… its not as if like my current voice very much…. i also know i will have to have more speech therapy and help with swallowing
I know i need to go easy on the over thinking… especially the bad thoughts…. they have always been much easier for me to get stuck in… at least for a while… I do trust that doc…i think… yeah… but i also know he’s not a magician.. He has told me that himself even… and made me aware of the things that might go wrong just as he has with the things that might go well…
So yes….. I know i’m overthinking per usual… but i just feel it’s better to be safe than sorry on this one…if that makes sense
I’ve been on a break from therapy for 5 weeks now… but i will be meeting my therapist on Monday as well as going back to my routine
Sometimes i wish it was easy for me to reach out to people when i need to…. im more likely to send out a public (sort of) message…. like this… so people can chose if they want to respond or not if that makes sense…. has something to do with my “not being a bother” thinking brain… i guess…. but i also often send a random message to people I see are hurting and need some encouragement or just to know that there is someone out there who cares.
Thinking of you! ??
You are an incredible person & such an inspiration.. I love reading your post & your music is fabulous… Stay strong my friend! Wishing you only the best! Hugs from Texas!