Larry's Update

LauraandLarry
LauraandLarry Member Posts: 184
in Esophageal Cancer #1

Larry has been home now for 10 days and I believe he has finally stabiized. What I mean by this is every morning he seemed to be a little worse than the day before unttil yesterday. It was the first morning that I didn't see a decline. He has lost 38 lbs since his surgery March 22nd. I can't believe that he has managed to avoid being readmitted. He is taking more fluid via jpeg now about 12 oz a day, and has started drinking the low calorie low sugar Gatorade, about 12 oz per day. At least he is making the effort to get a little more in. However he is eating less and less. He is having alot of problems with dumping, but is starting to pay more attention to the causes. Now only if old man winter would kindly exit Michigan he would be able to enjoy the outdoors a bit!

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    #2
    Hi, After surgery, I started

    Hi, After surgery, I started losing and lost 99 pds before I quit losing. To begin with, like Larry I had no appetite and only ate small amounts. I tried carnation breakfast, ice cream-anything for added calories and it just caused worst dumping.I grew extremely weak. I wasn't on a feeding tube. After joining a gym , I started eating better and regained strength. Even so, I kept losing. The doctors couldn't find the reasons why. Actually I was healthier, than I was before EC. This was over a five year period. I finally have gained a few pounds(13). I'm still thin,but for health reasons want to stay that way. I might add, I was overweight to begin with. Dumping can really be a problem. I still have the problem sometime.

    Stay warm. We had weather in the 70's and sunny in Georgia. I had surgery in May and loved to be out in the sunshine all spring and summer. It was wonderful to feel so alive.

    Praying for Larry, Sandra

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #3
    I'm glad Larry had a good
    I'm glad Larry had a good day. It gives us care takers hope. He was probably happy when he didnt get admitted, I pray he just keels hydrated. Im having problems with tube feeding too, dad says it upsets his stomach so I tpok it upon myself to slow the rate, hope thats ok to do until I can talk to doc on Monday. His lungs are my biggest concern. I read posts about the coughing, so I went and got the liquid stuff to help. Not much relief. I went and pirchased an adjustable bed so its being dwlivered today, maybe he will get some rest. Praying for you guys!!
  • LauraandLarry
    LauraandLarry Member Posts: 184
    #4
    Dad'sfight said:

    I'm glad Larry had a good
    I'm glad Larry had a good day. It gives us care takers hope. He was probably happy when he didnt get admitted, I pray he just keels hydrated. Im having problems with tube feeding too, dad says it upsets his stomach so I tpok it upon myself to slow the rate, hope thats ok to do until I can talk to doc on Monday. His lungs are my biggest concern. I read posts about the coughing, so I went and got the liquid stuff to help. Not much relief. I went and pirchased an adjustable bed so its being dwlivered today, maybe he will get some rest. Praying for you guys!!

    Hopeful

    I am hopeful that the tube feedings work for your dad. Slowing them down is good idea, I think. What a great daughter you are ordering an adjustable bed! We raised the head of our bed about 8 inches. It has helped Larry to sleep alot. Finding the right foods is the biggest challenge. It seems dumping just exhausts Larry. This whole process is very hard to watch as a caregiver. Take care of yourself!!! Everyone will tell you that, but listen. I wore myself down and I was so sick yesterday, in bed all day. I slept off and on for 15 hours! Back to the grind! Praying for you guys as well!

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #5
    sandy1943 said:

    Hi, After surgery, I started

    Hi, After surgery, I started losing and lost 99 pds before I quit losing. To begin with, like Larry I had no appetite and only ate small amounts. I tried carnation breakfast, ice cream-anything for added calories and it just caused worst dumping.I grew extremely weak. I wasn't on a feeding tube. After joining a gym , I started eating better and regained strength. Even so, I kept losing. The doctors couldn't find the reasons why. Actually I was healthier, than I was before EC. This was over a five year period. I finally have gained a few pounds(13). I'm still thin,but for health reasons want to stay that way. I might add, I was overweight to begin with. Dumping can really be a problem. I still have the problem sometime.

    Stay warm. We had weather in the 70's and sunny in Georgia. I had surgery in May and loved to be out in the sunshine all spring and summer. It was wonderful to feel so alive.

    Praying for Larry, Sandra

    Thank You!

    Larry has always been very active, doing physical labor and playing hockey. He has been back to the gym twice since surgery to walk. 1 mile divided into small segments. Then he is exhausted. I can't imagine losing as much weight as you did. That must have been very scary for you and your family! The challenge of what to eat is definitly the toughest. It is hard as well for the caregivers, I for one, feel terribly guilty when I am eating a normal diet. I tell myself that I have to maintain in order to assist him. Praying for you as well, thank you!

    Laura

  • paul61
    paul61 Member Posts: 1,392 Member
    #6
    LauraandLarry said:

    Hopeful

    I am hopeful that the tube feedings work for your dad. Slowing them down is good idea, I think. What a great daughter you are ordering an adjustable bed! We raised the head of our bed about 8 inches. It has helped Larry to sleep alot. Finding the right foods is the biggest challenge. It seems dumping just exhausts Larry. This whole process is very hard to watch as a caregiver. Take care of yourself!!! Everyone will tell you that, but listen. I wore myself down and I was so sick yesterday, in bed all day. I slept off and on for 15 hours! Back to the grind! Praying for you guys as well!

    Most of us who have had surgery and struggled with dumping

    Laura,

    I am sure Larry is frustrated that he works so hard to get food down only to have it gone in 30 minutes to an hour. I remember my first month after surgery I thought I would never get past the dumping syndrome.  Please tell Larry that it is frustrating but it does improve with time.

    Here are some suggestions that I found helpful for me:

    1. I am sure your surgeon’s staff has given you a recommended menu. But just in case here is the one that I used - http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx
    2. Avoid dairy products for the first month or so. I was gradually able to go back to dairy but for the first month they were problematic.
    3. Avoid all processed sugar and simple carbohydrates. Beware of sugar substitutes like sorbitol.
    4. Try to have protein be the major element in all meals and eat protein first before you eat carbohydrates.
    5. Drink very little with meals and don’t drink liquids for an hour prior to or after meals
    6. Chew food very thoroughly and eat slowly
    7. Stop eating before you feel full
    8. Sit and rest at least 30 minutes after eating a meal
    9. Avoid drinks that contain caffeine they stimulate the lower digestive system.
    10. Eat small amounts 7 or 8 times a day.
    11. Once a day I have a smoothie that contains bananas, strawberries, and chia seeds. Chia seeds absorb a lot of water and tend to slow things down digestively and are an excellent source of calories.

     I hope this helps.  

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #7
    LauraandLarry said:

    Hopeful

    I am hopeful that the tube feedings work for your dad. Slowing them down is good idea, I think. What a great daughter you are ordering an adjustable bed! We raised the head of our bed about 8 inches. It has helped Larry to sleep alot. Finding the right foods is the biggest challenge. It seems dumping just exhausts Larry. This whole process is very hard to watch as a caregiver. Take care of yourself!!! Everyone will tell you that, but listen. I wore myself down and I was so sick yesterday, in bed all day. I slept off and on for 15 hours! Back to the grind! Praying for you guys as well!

    Laura, you make sure you take
    Laura, you make sure you take care of yourself too!!! I hope you feel better today. Dad has the dumping too, his rear end has broken down and looks like an open wound, check Larry's.

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