Hi from Crow71
The 12 hour surgery really beat me down, physically and emotionally. I'm having a hard time getting my fighting spirit back, and staying focussed and positive. I cry all the time - and I've never been a crier. My emotions turn on a dime. I often avoid the kids, even though I miss them. I think I feel a little better everyday. For me, the physical and emotional go hand in hand.
I had a feeding tube in my nose for a few weeks. I asked for it to come out the other day even though I'm still losing weight. It was getting in the way of regular eating. The Anti-Cancer Diet is out the window for now. I spend most of the day eating protein and calories and drinking water. Also drinking a glass of fresh juice almost every day. If anyone has any suggestions on high calorie, high protein foods, I'd love to hear about them.
One final thought - I have the most amazing wife/caregiver. She's really good at changing the dressing. She's learned quickly fromthe nurses and Dr. Shen what to look for. She takes good care of me emotionally. She has held the family together through all of this. The kids are doing really well. I feel very fortunate to have her.
Take Care. I hope everyone is good today. Roger
Comments
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So nice to see your post
Well you made my morning!!!!!!!! Glad to see you posting again and I hope the good news continues. I know you are hurting now physically and emotionally but hang in there as you know better days to come, and if your posting again you have obviously made great progress already! Give your wife a hug for me and tell her it is in appreciation for all that she does for you and yours from someone who knows how important a role she plays in this! God bless our wonderful caregivers!!!!!!!!!!!!
I wish for you continued progress/healing and again its SO nice to see your posts again!!
chris0 -
Roger
It is good to hear from you! It certainly sounds like you are on a slow road to recovery but that you are in such great hands. I think of you often.
Reading your post this morning sent a flashback memory of my sister when she had the liver surgery in Feb. That beat her down too and looking back she was depressed. Not so much crying, but just lost her fighting spirit and zest for life. I encourage you to speak to a therapist, even your doctor about your mental well being. It could be a chemical imbalance that you may need medication for in the short term.
I also know how difficult it was for my sister to put on weight (quite the opposite for most of us, I just look at food and gain weight
But I am sure if it sounds good to you, eat it. We would make mashed potatoes with cream and butter. I do not know any super high calorie foods but you could try those high calorie protein powders you can buy in some health food stores. I know after awhile, the smoothie thing got old.
I am rooting for you Roger! Keep the fighting spirit and take small baby steps. I know you can do it.
I'm here for you if you need some encouragement.
Take care,
Marie0 -
Great to see you Roger!
I'm so glad you're up and about. Whew! You'll be right as rain soon.
Diane0 -
Hi Roger,
Congratulations on
Hi Roger,
Congratulations on getting this far on the recovery! I know you have further to go, but you have made immense steps. I can tell from Kim's posts how caring she is + how dedicated to your welfare. What a great team you two are! I have been thinking of you often + am glad to hear things are coming along, albeit more slowly that you would like. Take good care, it is wonderful to see your post.0 -
Roger -
Wonderful to see you posting. I have been following your recovery on your site. You bet Kim is the best, you hit the jackpot when you married that girl. I especially enjoyed her post about putting beer in the feeding tube. I was imagining the look on the doctor's face where he couldn't condone that. I really, really needed a laugh that day so thanks.
Continued success in your recovery.
Tina0 -
It won't be soon enough, but life will get better ,Roger....Jaylo969 said:Good morning Roger!
I am so happy to see that you feel up to updating us because we REALLY miss you Roger
Sparks are flying from down here in the Deep South to you and your family.
Take care of yourself....
-Pat
Tho your route different than mine, hopefully,even with setbacks, ultimately you will get your life back.....The pain will slowly but eventually subside and you'll get your strength back and start doing things you enjoy again....You'll see....NEVER GIVE UP!!!!!!!!steve0 -
glad to see you on!
I understand the huge healing process, I am celebrating 1 year from my great adventure with this same process. I imagine the crying has more to do with the tremendous energy your body is expending in healing; you're tired, it makes you cry (it certainly does me). You will find that as you heal you are less prone to cry. As far as calories, make sure you use the real stuff, milk, cream, butter, etc. In place of milk you can use the vanilla protein drinks. I used to keep a bottle of ensure next to me at all times and even drank them in the middle of the night until the healing slowed down. You are well on the road to recovery, and I am sure you will be feeling better every day. I am wondering why they aren't using a vacuum on your wound; it speeds recovery as well as decreases chances of infection and is just plain EASIER to manage. I know I had to get admitted to the hospital 2 times before they finally put a vac on my wound.
mary0 -
Hey Mary - Thanks for themsccolon said:glad to see you on!
I understand the huge healing process, I am celebrating 1 year from my great adventure with this same process. I imagine the crying has more to do with the tremendous energy your body is expending in healing; you're tired, it makes you cry (it certainly does me). You will find that as you heal you are less prone to cry. As far as calories, make sure you use the real stuff, milk, cream, butter, etc. In place of milk you can use the vanilla protein drinks. I used to keep a bottle of ensure next to me at all times and even drank them in the middle of the night until the healing slowed down. You are well on the road to recovery, and I am sure you will be feeling better every day. I am wondering why they aren't using a vacuum on your wound; it speeds recovery as well as decreases chances of infection and is just plain EASIER to manage. I know I had to get admitted to the hospital 2 times before they finally put a vac on my wound.
mary
Hey Mary - Thanks for the encouragement. It's all butter and whole milk for me.
About the wound vac. I had one after surgery with the incision all sewed up. The first one did not work and had to be replaced as soon as I got to the ICU. I have vague recolections of that process. Kim said it was very painful. I remember my pubic hair being pulled out by tape. That's crazy isn't it. They can shave whatever they need too!! Anyway - the wound vac was removed during morning rounds after 5 days. It looked okay at first, but then it started to run a little fluid. By that night is was obvious that there was an infection. Another Dr. came in and opened up the whole wound right there in my room. After cleaning out all the "stuff," he packed the wound with wet gauze and covered that with a bandage. That process has been repeated about every 8 hours ever since. It's an open wound that is slowly healing from the bottom up instead of the top down. As far as I know the wound vac is no longer an option.
Did you have any problems with infections?0 -
Great to hear from you Crow 71Crow71 said:Hey Mary - Thanks for the
Hey Mary - Thanks for the encouragement. It's all butter and whole milk for me.
About the wound vac. I had one after surgery with the incision all sewed up. The first one did not work and had to be replaced as soon as I got to the ICU. I have vague recolections of that process. Kim said it was very painful. I remember my pubic hair being pulled out by tape. That's crazy isn't it. They can shave whatever they need too!! Anyway - the wound vac was removed during morning rounds after 5 days. It looked okay at first, but then it started to run a little fluid. By that night is was obvious that there was an infection. Another Dr. came in and opened up the whole wound right there in my room. After cleaning out all the "stuff," he packed the wound with wet gauze and covered that with a bandage. That process has been repeated about every 8 hours ever since. It's an open wound that is slowly healing from the bottom up instead of the top down. As far as I know the wound vac is no longer an option.
Did you have any problems with infections?
Great to hear from you, been thinking of you and your family. Sounds like you have a great caregiver! We were at Chapel Hill yesterday and my husband's liver resection has been delayed a couple weeks. So glad you're recovering and hope things get a little easier each day!
Thinking of you and sending healing sparks!0 -
Hello Roger!!!Devasted said:Great to hear from you Crow 71
Great to hear from you, been thinking of you and your family. Sounds like you have a great caregiver! We were at Chapel Hill yesterday and my husband's liver resection has been delayed a couple weeks. So glad you're recovering and hope things get a little easier each day!
Thinking of you and sending healing sparks!
It's so wonderful to see you back. But, so sorry to hear about the pain you been going through. I dealt with the wound vac for 5 weeks when I had my open wound during my colostomy. I know that painful feeling. They gave me percocets for it, till my onc took me off those because they aren't good for the liver.
I didn't have any trouble with the wound vac at all. I had 3 home health nurses who came to my house every 3 days to change the sponge-like dressing, which hurt like heck, I had to keep my pillow over my face to keep me from screaming! but as each day went by, it did get better, and it will for you too! I was soon able to take the dressings off myself before the nurses got there, where all they had to do was pack it. They did a great job, it's a huge scar cut from my belly down to almost my private area, but no infection ever got me. Within 5 weeks, the vac was off, and it has healed pretty well. I wish it had the same effect for you, because it was alot quicker healing then the wet/dry dressing.
And it's ok to cry! I cried all the time, it made me feel better....it's healing, and you'll get over that, I promise it does get better, incisions are the worse, and I dread any kind of them, but here's a good sign of you sitting here and typing to us, where we can talk now, because you're getting better
It's great seeing you back hun!
Hugsss!
~Donna0 -
Roger...
Dude.. You sure had us all worried about you. I too just got home from the hospital with a blockage. I wonder if our stoma's are taking revenge!!!
Brooks0 -
I too was wondering
I too was wondering where/how you were. Good to see you back here. Hope thing pick-up for you. The nice weather coming up should improve your recovery. Try to get out and soak up some sunshine. Forget about the sunscreen though you'll need the vitamin D.........
Chris0 -
Up and about
I like Diane's post, "so glad you're up and about," even if up is only feeling UP enough to let us know ABOUT your current situation. We will take what we can get, we are an easy bunch that way.
Grace and peace to you and yours,0 -
infectionCrow71 said:Hey Mary - Thanks for the
Hey Mary - Thanks for the encouragement. It's all butter and whole milk for me.
About the wound vac. I had one after surgery with the incision all sewed up. The first one did not work and had to be replaced as soon as I got to the ICU. I have vague recolections of that process. Kim said it was very painful. I remember my pubic hair being pulled out by tape. That's crazy isn't it. They can shave whatever they need too!! Anyway - the wound vac was removed during morning rounds after 5 days. It looked okay at first, but then it started to run a little fluid. By that night is was obvious that there was an infection. Another Dr. came in and opened up the whole wound right there in my room. After cleaning out all the "stuff," he packed the wound with wet gauze and covered that with a bandage. That process has been repeated about every 8 hours ever since. It's an open wound that is slowly healing from the bottom up instead of the top down. As far as I know the wound vac is no longer an option.
Did you have any problems with infections?
Yes, I had quite a bit of infection. I have been holding my breath and awaiting posts on how you are doing ever since I found out you had the open wound. I was initially sent home the day after staples were removed, but as he was removing the staples, the wound began to open. They closed those sections with steri-strips but it only got worse when I was at home. They then did the wet to dry and sent me home again. That went from bad to worse and I was back in the hospital. They had to do multiple surgeries, with the wound vac between, until they could cut away all the infection. This left me with a ventral hernia, but they were finally able to close fascia and skin for the largest part of my incisional area. The bottom 6 inches or so continued to bleed and wound up with another very deep infection. Back in the hospital and they wound up having to open that wound to get it to heal. This time I went home with the wound vac and it closed slowly but surely. I had multiple drains for abcesses and am a mess now internally, but like I said it's now been a year since my initial procedure and I'm feeling relatively good! I will always have the ventral hernia, as there is way too much adhesions to even consider surgery to fix it, at least for the short term. It's managed well enough with abdominal binders and the like, but my intestines don't move properly without the assistance of Reglan. I think the only reason I was sent home with a wound vac the last time was I insisted on it and refused to be sent home without it. I felt we had proven without a doubt that we weren't able to manage an open wound by then. It was a time I definitely missed my mother, as she was an RN by trade and helped tremendously when I began this journey. You are greatly blessed that your wife is so capable and I am sure you will be healed before you know it.
mary0 -
Infections....yes.RickMurtagh said:Up and about
I like Diane's post, "so glad you're up and about," even if up is only feeling UP enough to let us know ABOUT your current situation. We will take what we can get, we are an easy bunch that way.
Grace and peace to you and yours,
Have had a hard time with them, pneumonia ect. so be very careful.0
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