Holidays and not eating depressing

Hey Dean,

Six weeks is like your first eighth mile in a marathon, which is recovery.  I know all too well the feelings of dejection and discouragement during the recovery journey, about not being able to fully engage in life the way I did pre Beast war, and I am here to tell you that life will get better, much better, but it does take time - a long, long time.  Yes, there are experiences, like your Florida vacation, and the other usual activities, and events that you have to put on hold until the time is right, but you will gradually get back to having a full life again.  Right now, and I do mean right now, I encourage you to focus on those things that you enjoy that you can still engage in, even if it is only viewing movies, playing board games, watching snow fall, etc.  Bye the bye, you would be surprised at what, with a little problem solving, you can do with a PEG tube; I had one for 12 years.  I surfed, gym ratted, hiked, camped, biked, ran (including the Miami Half Marathon), and just had my usual helpings of life fun with my tube.  After a lot of trial and error, I found that Duck tape and Under Armour compression shirts held my tube securely in place during those activities, so a feeding tube does not have to prevent you from doing what you want to do, once you are ready to re-engage in those activities.  I will also add that, if you are going to be depending on a tube for an extended period of time you might want to consider investing in a Vitamix blender so that you can enjoy and benefit nutritionally from a diet of regular food.   I heartily encourage you to, as they (and exactly who are they) say, hang in there, and let me introduce you to one of my best friends Patience:  Patience, this is Dean; Dean this is Patience.  Alight, a handshake, and hug it out.  Patience will help you to get through the most challenging times, and the glacial movement of recovery.  Always remember that You Can Do This, and oh yeah, Keep It Mov'in Forward.  Lastly, Happy New Year!         

Hang in there. I didn't have a feeding tube and I was still on liquids until about my 7th week post treatment. I did a swallow study and that gave me the confidence to simply suck it up and start eating. So glad I did. I'm 3-months post treatment now and I can eat anything I want.

You'll have plently of future holiday meals to enjoy with family!

Dean54 said:

Thanks for all the encourging

Thanks for all the encourging words and maybe it wouldn't be so bad if I wasn't stuck inside the house like a prisoner and watching the wife fix all this glorious looking food that I know I can't eat.

They won't take the feeding tube out until after the PET scan so that eliminates the gym for me at least. I have exercise equipment at home but it's not the same.

I know patience is a virtue and it's the one I've always had the least of unfortunately but need to find some but it won't be easy with my two least favorite months approaching.

Don't mean to be whinning but the depression is getting to me.

Hi Dean,

I am not sure I can say much about being six weeks out as I’m only five weeks in. I miss the gym too and look forward to a day where it’s part of my routine again.

What I can tell you is that like any great test of strength, its so much easier if you focus on the day-to-day rather than the big picture. That isn’t to say that planning is a bad thing to do either. You just have to find something pleasurable and distracting for the immediate future. For me right now that’s watching movies and tv shows with my wife and reading. If I dwell too long on it I get pretty depressed as well. My advice is to keep as much of your psyche in the immediate present and on what you ARE capable of doing.

Similar to Matt proverb 2017, an elderly man once told me: “I’m almost give-out, but I ain’t give-up.” Hang on - it will get better.. bill

Dean,

It is really not that you can’t eat, but you choose not to.  I was constantly trying EVERYTHING, but found very few that were good-to-go. As a guide  I would try a spoon full of sugar, or salt, or juice or peanut butter, try everything. When you start to feel like it is turning around, go to a buffet.  Most things are completely awful, but you might have a few surprises.

Now about the PEG, you need to prove to the doctors you can do without it.  They may want to see some weight gain.  Remember, this is winter and some heavy clothing with some emergency tools in your pockets, or extra keys and clunky boots might be the sway you need.  Of course you need to be getting the required nutrition and hydration, so that the field is level.

It never felt bothered by others eating, but they would often think I was.  I was out of sorts for  7 months, there  were major successes along the way and an accidental turkey sandwich when I was away from home with nothing to drink was the turn-a-round I needed to start my new normal.

Matt

patricke said:

PATIENCE

Hey Dean,

Six weeks is like your first eighth mile in a marathon, which is recovery.  I know all too well the feelings of dejection and discouragement during the recovery journey, about not being able to fully engage in life the way I did pre Beast war, and I am here to tell you that life will get better, much better, but it does take time - a long, long time.  Yes, there are experiences, like your Florida vacation, and the other usual activities, and events that you have to put on hold until the time is right, but you will gradually get back to having a full life again.  Right now, and I do mean right now, I encourage you to focus on those things that you enjoy that you can still engage in, even if it is only viewing movies, playing board games, watching snow fall, etc.  Bye the bye, you would be surprised at what, with a little problem solving, you can do with a PEG tube; I had one for 12 years.  I surfed, gym ratted, hiked, camped, biked, ran (including the Miami Half Marathon), and just had my usual helpings of life fun with my tube.  After a lot of trial and error, I found that Duck tape and Under Armour compression shirts held my tube securely in place during those activities, so a feeding tube does not have to prevent you from doing what you want to do, once you are ready to re-engage in those activities.  I will also add that, if you are going to be depending on a tube for an extended period of time you might want to consider investing in a Vitamix blender so that you can enjoy and benefit nutritionally from a diet of regular food.   I heartily encourage you to, as they (and exactly who are they) say, hang in there, and let me introduce you to one of my best friends Patience:  Patience, this is Dean; Dean this is Patience.  Alight, a handshake, and hug it out.  Patience will help you to get through the most challenging times, and the glacial movement of recovery.  Always remember that You Can Do This, and oh yeah, Keep It Mov'in Forward.  Lastly, Happy New Year!         

Hi Patricke, I read your write up and it is inspiring beyond words. Sometimes if I am having doubts, and read what others have endured and overcome, it gives me a needed kick in the right direction. You are a master of words- though the subject matter is grim, you convey humor and tenancity. Thank you ( don't mean to hijack this thread but we could all draw strength from the mountains that others have conquered!)