Update from Linda and Jim in Idaho
I am also a cancer survivor and have had lots of complications and surgeries so understand the dynamics after a cancer diagnosis. He and I handle things very differently and I encourage him to be positive, after all he has gone through the toughest part, chemo, radiation, surgery, pneumonia, and is CANCER FREE!!!!!!! As you all know, I "talk" about it, he retreats. I am not really sure what to do. I have been getting out more for myself as it brings me down. I will do anything I can to help, but don't know what else to do.
I do have to give Jim an additional break, he saw his cardiologist and his aortic valve stenosis is severe. He needs surgery, but he is in no shape to go through that anywhere in the near future. This causes him to become short of breath very easily and the doctor said this is normal for his condition. I am sure he is having a hard time seeing the light at the end of the tunnel. The cardiologist told him he thinks he is doing very well for what all he has been through. He told me there are a lot worse things than being on a feeding tube. I got the message loud and clear! :-)
Please keep us both in your prayers and know I am not complaining, we are both very grateful he is in remission.
Linda
Comments
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some thoughts
HI Linda,
I am in no way an expert on this---but wanted to share that my dad had that
retching thing in the beginning after his surgery, and it did gradually get better. He also, mentally had a hard time letting go off the tube feeding because he had lost weight & was already thin--again, it was a gradual process. If he is getting the full feedings--he won't have a sensation of hunger. My dad eventually was able to let go some of the feeding while makeing himself take very small amounts of food every 2 hours - like clock work. He had to get in the mindset, that the food was his "medicine". If he had foods that had too much sugar, he got the dumping and sometimes that set him back because he would be afraid to touch that food again. Usually it was because he had too much of something or ate to too fast.
My seemed to start to get depressed too--he just thought after the surgery, he'd be able to get back to normal---and as we all know it takes awhile. I think the things that turned things around for him were #1-weather got warmer & he could get outside to walk #2 having visitors (before that they were afraid he'd get sick--flu was going around) #3 he got back to doing things he enjoyed, fixing things around the house and helping out others.
Gradually his stamina, appetite, digestion improved. I think it is hard to see the light at the end of the tunnel when there seems to be so many problems at once. Is there anything he used to enjoy that he may be able (even if partially) be able to do now??? It seems that it just a series of baby steps---for caregiver & patient! My mom got frustrated with my dad---it was months before she could leave him and she got frustrated with some of the issues-honestly, I don't know how they did it. Being able to vent helps! Hang in there Linda--continue to be patient and supportive--you are doing a good job!!! Tell him "it'll get better"... I wish I had more specifics...
God Bless!
Kim0 -
just some ideas for you and JimK_ann1015 said:some thoughts
HI Linda,
I am in no way an expert on this---but wanted to share that my dad had that
retching thing in the beginning after his surgery, and it did gradually get better. He also, mentally had a hard time letting go off the tube feeding because he had lost weight & was already thin--again, it was a gradual process. If he is getting the full feedings--he won't have a sensation of hunger. My dad eventually was able to let go some of the feeding while makeing himself take very small amounts of food every 2 hours - like clock work. He had to get in the mindset, that the food was his "medicine". If he had foods that had too much sugar, he got the dumping and sometimes that set him back because he would be afraid to touch that food again. Usually it was because he had too much of something or ate to too fast.
My seemed to start to get depressed too--he just thought after the surgery, he'd be able to get back to normal---and as we all know it takes awhile. I think the things that turned things around for him were #1-weather got warmer & he could get outside to walk #2 having visitors (before that they were afraid he'd get sick--flu was going around) #3 he got back to doing things he enjoyed, fixing things around the house and helping out others.
Gradually his stamina, appetite, digestion improved. I think it is hard to see the light at the end of the tunnel when there seems to be so many problems at once. Is there anything he used to enjoy that he may be able (even if partially) be able to do now??? It seems that it just a series of baby steps---for caregiver & patient! My mom got frustrated with my dad---it was months before she could leave him and she got frustrated with some of the issues-honestly, I don't know how they did it. Being able to vent helps! Hang in there Linda--continue to be patient and supportive--you are doing a good job!!! Tell him "it'll get better"... I wish I had more specifics...
God Bless!
Kim
Hi Linda,
Glad to see your update. I was thinking after reading about Jim's trouble eating that just being short of breath interferes with eating. Before they found out what was wrong with my lungs, complication of surgery and radiation, I actually started losing more weight post surgery. So being breathless makes you lose weight and then you don't have the energy to eat much. I only had night tube feedings so I tried to eat during the day. I would open Ensure or a more high calorie drink the Nestle brand and keep a cup open in the fridge and drink sips all during the day. I could not drink much at once because it made me sick to my stomach also can cause dumping syndrome but the little bit all day long worked for me. I hope the drs can find a solution for his heart issues, that must complicate his whole scenario. Sometimes, I would lose a whole meal at first even with not eating much. It took me 7 months to feel like myself but I did have the longer Ivor Lewis surgery. I have heard there are appetite stimulants out there, I think Sherrie said that her beloved Jim had some. I know prednisone also makes you hungry. And my constant companion was creamy peanut butter, got a lot of protein by eating teaspoonfuls all during the day. HOpe some of this helps. You are a great caregiver and you have had so much to deal with yourself. Jim is so very lucky to have you. About the depression, I know other cancer patients who were given Ativan to calm them down maybe that was for anxiety and worry. It would not hurt to ask his drs. take care, prayers for you and Jim,
Donna700 -
I feel like your sister....
U and I seem to be walking down the same road right now. You are a few weeks ahead of me, so I guess you are the big sister...........lol. Steve is three weeks out now and he is progressing although he doesnt feel like it. Its very hard to get him to even take a bite of food and doubt it will happen anytime soon. I wish I could offer some advice, but i'm on that learning curve too.
I do think some is a confidence thing and only time can change that. I keep telling him baby steps and have to remind myself that too. After all the treatments and surgery you just want them to get better and try to find some normal in your life again. I guess this is when caregivers can lean on each other and learn from each other. I know I thank God for all of you and pray for all of you everyday. I wish you both all the best.
Nancy0 -
So Glad to Hear from You!
Thank you Linda for the update on you and Jim. You've both been on my mind often.
Sorry to hear things are going a bit rough for you. Not sure what to say about that except you just have to try to stay positive and work your way through it. Easier said than done, I know!
I'm glad you are getting out a bit. It's so important to take a break every know and then, for your own sanity and well being. I'm sure it's not easy or "fun", but it's healthy for your mind to take a step back and refuel your soul so you can be the best caregiver to Jim that you can.
As for the emotional healing/dealing, men and women are very different in how they handle things. I guess I'd just try to keep encouraging him, but not to be too pushy. It's a fine line I know. But ultimately, he's gonna respond and do what is comfortable for him. That might not be how you or I would handle it, but we have to respect it and just "let him be."
I'm praying for you both. Hang in there! God will see you through!
Blessings,
Sally0 -
So Glad to Hear from You!
Thank you Linda for the update on you and Jim. You've both been on my mind often.
Sorry to hear things are going a bit rough for you. Not sure what to say about that except you just have to try to stay positive and work your way through it. Easier said than done, I know!
I'm glad you are getting out a bit. It's so important to take a break every now and then, for your own sanity and well being. I'm sure it's not easy or "fun", but it's healthy for your mind to take a step back and refuel your soul so you can be the best caregiver to Jim that you can.
As for the emotional healing/dealing, men and women are very different in how they handle things. I guess I'd just try to keep encouraging him, but not to be too pushy. It's a fine line I know. But ultimately, he's gonna respond and do what is comfortable for him. That might not be how you or I would handle it, but we have to respect it and just "let him be."
I'm praying for you both. Hang in there! God will see you through!
Blessings,
Sally0 -
Hi Linda
Glad to hear from you. Dale had a terrible time with nausea, and not being able to throw up. It was just wrenching and absolutely having to force himself to take in any food. His surgery was April 2nd and it wasn't until November that he actually started eating again. He has had trouble gaining any weight, but at least he is eating. Don't give up. I think I probably drove him crazy trying to find stuff that he could eat. I too threw away lots of food. he was drinking ensure plus, but that gave him dumping syndrome. He is scheduled for rotator cuff surgery next week and they are not starting the surgery until 3:30 PM. I thought I would whoop and holler when he told the scheduler that the didn't think he could go without food for that long........those were words that I never thought I would hear. He seems, at this point in recovery to do better with eggs, cheese, and beans. High protein, low carb stuff.......fish, some red meat and a little chicken. Hang in there....it will get better. The magic word is.......remission. Yay! Dale got so weak for awhile that he could barely make it from his chair to the bathroom, and with that came major depression and anger at the world.
Take some time to go to lunch with friends, get a pedicure, go shopping. Caregivers need a break once in awhile and everyone will support you in that. Good luck! Our prayers are with you both!0 -
Thank you all!mlbrooks852 said:Hi Linda
Glad to hear from you. Dale had a terrible time with nausea, and not being able to throw up. It was just wrenching and absolutely having to force himself to take in any food. His surgery was April 2nd and it wasn't until November that he actually started eating again. He has had trouble gaining any weight, but at least he is eating. Don't give up. I think I probably drove him crazy trying to find stuff that he could eat. I too threw away lots of food. he was drinking ensure plus, but that gave him dumping syndrome. He is scheduled for rotator cuff surgery next week and they are not starting the surgery until 3:30 PM. I thought I would whoop and holler when he told the scheduler that the didn't think he could go without food for that long........those were words that I never thought I would hear. He seems, at this point in recovery to do better with eggs, cheese, and beans. High protein, low carb stuff.......fish, some red meat and a little chicken. Hang in there....it will get better. The magic word is.......remission. Yay! Dale got so weak for awhile that he could barely make it from his chair to the bathroom, and with that came major depression and anger at the world.
Take some time to go to lunch with friends, get a pedicure, go shopping. Caregivers need a break once in awhile and everyone will support you in that. Good luck! Our prayers are with you both!
Hey friends! Thank you all for the suggestions and encouragement. It truly is a fine line not to be a nag, yet we have to push a bit!
I think it will be helpful for me to share some of the ideas with Jim, and to let him know he is not alone in this, especially the retching part. He is having to find the right balance when he does eat. What he thinks isn't too much is still too much for his new stomach. I guess he will figure that out in time.
I think a pedicure is in my near future! :-)
Linda0
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