Dad - 5 week post surgery - caretaker question

lauralon

My father had partial re-section on 2/20 - after some minor complications came home and is recovering. He is 82 years old and was in very good health prior to surgery and living on his own. My sister and I both live far away - i am a plane ride away and she is 2 1/2 hours drive. He is not having a ton of symptoms but the following are most troublesome

1). He really cant stand to eat - nothing tastes good, he is full after 3 bites and has no hunger whatsoever. He was 155 lbs before surgery and now down to 135. He is not on a feeding tube as he has had several surgeries for vascular issues and doctor said it would have been too challenging to insert the feeding tube given scar tissue.
2). His energy level is really low and I think he is battling depression
3). He had to go back in the hospital today as he has anemia and he will likely need a blood transfusion tomorrow.

After reading several of the messages here - i would say we should be happy with his progress. However, my main concern is if he should really be living on his own at this point. My sister and i have been alternating 2 week shifts taking care of him. He hates to "burden" my sister and I and refuses to come live with either of us as a result.

So my question based on all of your experience - do you think he needs a care taker or should we be forcing him to consider moving in with us or seeking alternative care - or do you think he can manage recovery being independent?

Unknown

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lauralon

unknown said:

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Thanks for response and questions William
Here's some additional background based on your questions.

Dad was diagnosed with Esophgeal cancer in October 2011 after have 2 choking incidents. He is lucky in that it is Stage II. After a 2nd opinion and many doctor visits he opted for only doing the Esophogectomy - it was not the Minimally Invasive type. No radiation or chemo. They removed about 25% of his esophagus and some of his stomach as well.

Prior to this diagnosis he has had a lot of vascular issues - several surgeries on his legs, carotid artery and a triple by-pass. We say he is like a cat because he seems to have 9 lives!

Regarding his eating - when he came home from the hospital - he seemed to have more of an appetite and was able to eat without any pain, choking, etc. after a week or so at home he has since gotten to a point where he is not hungry and is forcing himself to eat Ensure or small bites of something. Nothing tastes good and the thought of food makes him want to gag - though he is trying to get something in.

When they did the surgery (University of Chicago) - the doctor said that they were going to put in a feeding tube. But when he came out of surgery - the doctor said it would have taken another 2 hours of surgery due to scaring from previous vascular surgeries. I am not really sure if they would consider it now as a separate surgery or not.

I am frustrated as I dont think the oncologist or surgeon have prepared him (or my sister & I) with a realistic view of how challenging the recovery is going to be. We were led to believe that after 6-8 weeks he would be weaker, lose weight but that he would likely be able to return to his fairly normal lifestyle. after reading a lot of the posts here from real patients - it now feels like we need to re-group on a longer term recovery process.

Unknown

lauralon said:

Thanks for response and questions William
Here's some additional background based on your questions.

Dad was diagnosed with Esophgeal cancer in October 2011 after have 2 choking incidents. He is lucky in that it is Stage II. After a 2nd opinion and many doctor visits he opted for only doing the Esophogectomy - it was not the Minimally Invasive type. No radiation or chemo. They removed about 25% of his esophagus and some of his stomach as well.

Prior to this diagnosis he has had a lot of vascular issues - several surgeries on his legs, carotid artery and a triple by-pass. We say he is like a cat because he seems to have 9 lives!

Regarding his eating - when he came home from the hospital - he seemed to have more of an appetite and was able to eat without any pain, choking, etc. after a week or so at home he has since gotten to a point where he is not hungry and is forcing himself to eat Ensure or small bites of something. Nothing tastes good and the thought of food makes him want to gag - though he is trying to get something in.

When they did the surgery (University of Chicago) - the doctor said that they were going to put in a feeding tube. But when he came out of surgery - the doctor said it would have taken another 2 hours of surgery due to scaring from previous vascular surgeries. I am not really sure if they would consider it now as a separate surgery or not.

I am frustrated as I dont think the oncologist or surgeon have prepared him (or my sister & I) with a realistic view of how challenging the recovery is going to be. We were led to believe that after 6-8 weeks he would be weaker, lose weight but that he would likely be able to return to his fairly normal lifestyle. after reading a lot of the posts here from real patients - it now feels like we need to re-group on a longer term recovery process.

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casp42

unknown said:

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Who was the surgeon @ Univ. of Chgo?
Laura,

I agree with William, PRESS the DR! My dad had chemo and radiation at Univ. of Chgo.. Who is your dad's oncologist and surgeon? but being on the board...talking with William and Loretta on the phone, we choose Univ. of Pittsburgh w/Dr. Luketich for surgery.

Dad had issue after surg. with pulmonary embolism to both lungs, chlor. leakage (had another surgery to stop the leakage (was hospitalized for 1 month) He had 36 lymph nodes removed and all were benign! God was listening to our prayers.....

The first 8-10 weeks were rough, but I'm happy to report, dad had his 4 month check-up in Feb. with No evidence of Disease.

Life is getting better, we go back in June!

Hang in there, press the dr.!

Carolyn

captdave

lauralon said:

Thanks for response and questions William
Here's some additional background based on your questions.

Dad was diagnosed with Esophgeal cancer in October 2011 after have 2 choking incidents. He is lucky in that it is Stage II. After a 2nd opinion and many doctor visits he opted for only doing the Esophogectomy - it was not the Minimally Invasive type. No radiation or chemo. They removed about 25% of his esophagus and some of his stomach as well.

Prior to this diagnosis he has had a lot of vascular issues - several surgeries on his legs, carotid artery and a triple by-pass. We say he is like a cat because he seems to have 9 lives!

Regarding his eating - when he came home from the hospital - he seemed to have more of an appetite and was able to eat without any pain, choking, etc. after a week or so at home he has since gotten to a point where he is not hungry and is forcing himself to eat Ensure or small bites of something. Nothing tastes good and the thought of food makes him want to gag - though he is trying to get something in.

When they did the surgery (University of Chicago) - the doctor said that they were going to put in a feeding tube. But when he came out of surgery - the doctor said it would have taken another 2 hours of surgery due to scaring from previous vascular surgeries. I am not really sure if they would consider it now as a separate surgery or not.

I am frustrated as I dont think the oncologist or surgeon have prepared him (or my sister & I) with a realistic view of how challenging the recovery is going to be. We were led to believe that after 6-8 weeks he would be weaker, lose weight but that he would likely be able to return to his fairly normal lifestyle. after reading a lot of the posts here from real patients - it now feels like we need to re-group on a longer term recovery process.

Laura, Not to say that
Laura, Not to say that William dosen't have s wealth of knowledge but, it isn't always necessary to place a feeding tube. I don't trust a surgeon that does something just because "its the way its always done". I had a THE and had no feeding tube and am thriving. I also returned to work exactly eight weeks after my surgery. I also had no chemo or RAD. and am relatively young. So i know I am the exception to the rule but it is possible to have a very positive outcome from the surgery and recovery can be as your dad's surgeon presented it. One question that I might ask is your father exercising? Exercise could help stimulate diet as well as help battle any depression. Just a thought.

Best wishes to you and your father and I hope you keep asking questions until you get the answers you need.

Dave

Tina Blondek

lauralon said:

Thanks for response and questions William
Here's some additional background based on your questions.

Dad was diagnosed with Esophgeal cancer in October 2011 after have 2 choking incidents. He is lucky in that it is Stage II. After a 2nd opinion and many doctor visits he opted for only doing the Esophogectomy - it was not the Minimally Invasive type. No radiation or chemo. They removed about 25% of his esophagus and some of his stomach as well.

Prior to this diagnosis he has had a lot of vascular issues - several surgeries on his legs, carotid artery and a triple by-pass. We say he is like a cat because he seems to have 9 lives!

Regarding his eating - when he came home from the hospital - he seemed to have more of an appetite and was able to eat without any pain, choking, etc. after a week or so at home he has since gotten to a point where he is not hungry and is forcing himself to eat Ensure or small bites of something. Nothing tastes good and the thought of food makes him want to gag - though he is trying to get something in.

When they did the surgery (University of Chicago) - the doctor said that they were going to put in a feeding tube. But when he came out of surgery - the doctor said it would have taken another 2 hours of surgery due to scaring from previous vascular surgeries. I am not really sure if they would consider it now as a separate surgery or not.

I am frustrated as I dont think the oncologist or surgeon have prepared him (or my sister & I) with a realistic view of how challenging the recovery is going to be. We were led to believe that after 6-8 weeks he would be weaker, lose weight but that he would likely be able to return to his fairly normal lifestyle. after reading a lot of the posts here from real patients - it now feels like we need to re-group on a longer term recovery process.

Welcome
Hello and welcome to you your dad and sister to our family. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. Your dad is fortunate to be able to have had the surgery. Recovery is a long process. I would suggest that either you or you sister plan on moving in with him for the long haul, if at all possible. He would be in his own surroundings, and feel better about that. If you were to move him in with either one of you, he would be devastated. I also agree that you have to be on top of these drs. Be that squeaky wheel. Demand answers. There are also medications to help increase the appetite. You might want to find out about that. Keep keepin on my friend. You and your sister have been doing a great job! We are always here to lend and ear or a shoulder to cry on. Keep in touch.
Tina in Va

Ginny_B

I brought mom to live with
I brought mom to live with me. for the last several months. It was hard for her to leave her home - she was quite independent at 84. It was the best thing she and I did. Maybe you can suggest he go with you for a month or two - I always told mom that she'd go back home once she got her strength back.

If he won't budge and you can't manage to move in, then see about getting him a live-in caregiver.

Hugs.