Holidays and not eating depressing

Dean54

I am about six weeks out and still basically only consuming liquids with the ocassional can of pureed Campbell's soup but beweteen the crappy winter weather and not being able to enjoy eating a good meal life is getting very depressing right now.

Had to give up my annual FL Christmas vaction this year and the euphoria of getting the treatments over with gone and still can't go to the gym becuase of the feeding tube so feel like time is moving too slowly with nothing to look forward to.

Anybody esle having that problem?

patricke

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!         

CivilMatt

Try everything, try often, don't give up. (matt proverb 2017)

Deah54,

I understand your feelings of depression, but chose a different path for my recovery.

I did have a PEG (had two of them) and I got rid of them two weeks post.  I hated the awful feel and taste, no taste which lasted for 7 months.  I was determined to recover and to eat again and my taste buds were determined I would not recover.  I traveled around with an Igloo Cooler full of drinks and I bought lots of drinks from stores.  I had some successes and maybe that is why I did not let it get me down.

I once put a can of Crisco on my parent’s dining room table and said “this is what eating is like for me”, but I still had Sunday dinners with them, even though it was only a few bites of whatever they were having.
By not getting mad I was able to endure life going on around me (you go through post side effects ALONE).  Try to steer your life in a good direction.  Chances are, you will be ok, most H&N members reach a very livable new normal.

Matt

OKCnative

Hang in there. I didn't have

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

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.

JAL23

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,

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.

christine2080

Hang in there

I’m so sorry to hear how tough it is. My husband completed 35 radiation & 7 chemo on November 21. He is almost at week 6 of recovery (no peg). Even though he can’t taste much ( he says 20%), we are enjoying the rituals of eating together again. Until he started eating again I was very careful not to eat in front of him Or even prepare food in the house. I missed his company at meal time. We are attempting to eat together- whatever he thinks might work, even if it doesn’t. I pretty much stick to whatever he orders or says he would like for me to cook for dinner. He does still drink 4 Ensures per day, but since I have always had at least one high protein shake a day anyway we even drink a shake together. He says most foods are bitter, but he can taste the first few bites of some things, anise, bourbon (never drank it pre cancer), ginger. He is back to weekly acupuncture and currently has acupuncture seeds on each ear lobe. He is also taking daily zinc supplements per recommendations on this site. He is sick of water & has been enjoying ginger ale sweetened with agave. I know it’s tough to stay positive, especially considering everything you have already been through.

bebo12249

Similar to Matt proverb 2017,

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

Dean54

I'm trying to stay positive

I'm trying to stay positive and it helps to let off a little steam on this site and the postive comments from you kind people. Need to get back on the exercise and trying to force down some food instead of the liquids only but everything tastes so bad. Like Patricke said...Patience! I need a lot of that.

CivilMatt

normal just a bite away

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

Curlyn

Hi dean, Only a couple of

Hi dean, Only a couple of weeks ahead of you and I understand your impatience. It's hell. But like civilmatt I just made myself eat. Started c liquid and softs, and this was a feat because I had swallowing problems from the prior surgery. Its not easy but holding my own, I try and re-try everything (and try not to gag in company!). The last couple of days has even seen me swallow bread and minced meat- a milestone for me. As for the gym, my shoulder (sa nerve sacrifice) is making me mad as heck, pulling my neck, other shoulder and lower back out of alignment. But I intend to get back this week and continue c exercises. Grrrr. At this point, which is ahead of you, I am realizing that there is no rushing anything, I might only get 10 minutes out of a two hour gym routine but I have no muscle after 5 months of restriction and tough treatment, so that is okay. I have also found that getting out among people, my biggest source of support, beside my husband, who I feel deserves to see me succeed as he has put so much energy in trying to help me get back to a good place, helps tremendously. Hugs and best of luck. Happy New Year, everyone, hoping 2018 is an improvement for many.

Curlyn

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

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!)

patricke

Curlyn said:

Hi Patricke, I read your

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!)

ENCOURAGEMENT

Hi Curlyn, you are welcome, thank you for sharing your very kind thoughts.  I'm happy to hear that knowing about my experiences have and will help you, and hopefully others, push through the gauntlets that we all have to deal with.  Hearing about what others in our group have gone through and how they have solved problems, as well as the abundant  encouragemeant that I have found on this site have helped me get through, sometimes one nanosecond at a time, the very dark challenging times to the light outside of the other end of the tunnel.  I heartily agree with you that we are a community of mountain climbers helping each other to reach the summits of our mountains.  I wish you, and everyone the best in getting to celebrate on top of your mountain.  Let's Keep It Mov'in Forward! 

Dean54

It's so easy to just continue

It's so easy to just continue to drink the Ensures and such that I just don't want to hassle with gagging down the other stuff even tho I know I need to.

I will get back in the gym as soon as I get the tube out but am dreading having to "talk" to everybody about what went on. Maybe I'll go a different time when I know the regulars I associated with will be gone. Definitely need to get out of the house.

Hugs to you to Curlyn and thanks to everybody that wrote.

Curlyn

Dean54 said:

It's so easy to just continue

It's so easy to just continue to drink the Ensures and such that I just don't want to hassle with gagging down the other stuff even tho I know I need to.

I will get back in the gym as soon as I get the tube out but am dreading having to "talk" to everybody about what went on. Maybe I'll go a different time when I know the regulars I associated with will be gone. Definitely need to get out of the house.

Hugs to you to Curlyn and thanks to everybody that wrote.

Just do what you need to do

Just do what you need to do for you, dean. It is probably just too early for you, Just be open to tasting. Also, the gym is great but don't force it...I have waited so I wouldnt pick up a simple cold and thus kill myself...I was just trying to give you encouragement. At this point, I am feeling better in leaps and bounds, 4 weeks ago they said I was aspirating...so time heals.