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What to expect 3-6 weeks after surgery - getting through it.

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

My 64 year old father just had robotic surgery to remove a tumor. He has been strong and positive since he was diagnosed with stage 3 cancer the weekend of father's day. He went through the radiation and chemo with minimal issues. (Not easy, scary moments, but we got through that.) The expected 6-8 hour surgery lasted 8 1/2 hours and he did not come out of it well. Took them three hours to get him to breath on his own. Thank the Lord, he was out of the hospital a week after the surgery. (Had a tough first weekend with fevers and infection, but we got through that.) Now, its two weeks after he has been home. He an eat anything, as long as it is soft and can slide down his throat, but in little amounts. We are trying to get him to have 2000 calories a day, but he is only averaging 1500. No energy to get out an walk probably as much as he should. What is normal? Do we push for him to take walks? do we push him to eat more food? (Egg nog and boost gets old fast...) We see improvements every day, but when there isn't such a good day, we don't know what went wrong. Not enough exercise or not enough food? Or is he not resting enough? Or too much? We think he is doing great, but we are not sure...
Any guidance or food/meal suggestions would be much appreciated.

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

I am almost 7 months since the chemo/radiation/surgery and I feel just a bit better everyday. Sounds like your father has a great caregiver(you). So just a bit better everyday adds up FAST and even that compounds like money in the bank over time.
I also had the robotic surgery but my only complication was I needed 4 throat dialations since then to stretch things out. I am also 9 years younger than your father. My wife and grown kids and young grandchildren kept me moving around the house. The only walking that I did was going the one block to the mailbox and back. Eventually I fired up the lawn tractor and did some mowing. The gardening season is over here in Minnesota but I did tend the garden all summer. Bad days I sat out on the deck and sipped water. Healing takes time and also food and sleep.

I have found that sleeping with my head and upper body raised is absolutely needed even now. Also, no eating within 3-4 hours before bedtime.

Over time I began to hate food from the slow cooker and soup but early on it was good because the food was tender. Chew it good and go slow. 1/2 of a normal portion was about right for me. Mash potatoes and stovetop stuffing with gravy and some tender small pieces of chicken mixed in. Meat loaf with gravy. Soft and flavorful but remember 1/2 portions. A person can always go back and reheat some in a couple of hours if hungry. Salmon or walleye was great and easy to eat.
Going out to supper I would order ribs or fish and baked potatoe. The best and most tender beef seems to be in the 6-8oz size so just chew it good. Know where the restrooms are just in case something got stuck. No carbonated beverages. I wish you and your father the best.
Jim

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

He just had salmon last night for the first time and said it was GOOD! We are always happy for that reaction. (My mom will be retiring at the end of May, so she had to go back to work.) My sister was with them through the surgery and hospital stay and I came down (both from nh - mom and dad in Fl) and will be here until the 17th.

We have been learning so much about portions and calories and his limitations. Sometimes he can have things like an english muffin with lots of butter and peanut butter and eat it just fine, other mornings, he struggles just to have a bite. So I think that is very frustrating for him.

Do you remember what you were eating/doing in the first few weeks after surgery?

I didn't think of the slow cooker, but he has had difficulty with trying meat, so what a great thought. Variety is what we are looking for. As you know things do get old fast.

Thank you Jim for your comments. We are blessed (as it sounds like you are) with a strong and united family.

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

10 years ago my mother had EC and died from the complications of surgery. When I was diag with the same thing I was a total basket case. I even sold my car!
Leakage was what I was mostly concerned about with my surgery. I took things really really slow to let the connection heal good.
First few weeks I had back pain and no real food cravings. My weight ranged from 165-170lbs down from 230lbs and now I am at a healthy 180-185. I did some treadmill walking and 5lbs weights at first. Watched alot of TV. My daughterinlaw came over to pick me up and we did errands. So not a whole lot to be honest. When I went to the store I would have to find a place to sit and rest. Walking around and did some real light gardening and kept the bird feeders full. I didn't drive because of the pain meds. Now I drive and pick her up to do errands!
I love sausage and eggs and of course bacon goes without saying. lol. Walmart has some breakfast sausage patties and with english muffins and eggs are pretty good. Sometimes that is a bit much to handle. Breakfast is hard to figure what to have that isn't boring. I just had a "Smart Ones" for lunch. Easy and lots of different meals with high protein but not many calories. Peanut butter is great for calories, protein and level blood sugar but its good to have it with butter and all melty. Does that make sense? Shakes and smoothies are cool and go down easy.
My wife is off to work and supplies the medical insurance for us so I feel that making a nice supper for her to come home to is the least I can do.
I also do cleaning around the house to stay busy.
I got the latest PET/CT Scan bill today. $5850.00!!. Co-Pay for me is $50.00. Medica paid $5800.00. OMG! I can only imagine what the surgery and hospital cost.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I just went through the insurance papers regarding Nick's surgery.

Surgeon's fees $5000 and change
Room & Board $8700 and change
Hospital charges $47000 and a bit more

Our expense - $0 :)

I believe insurance paid only $15,000 for hospital charges and the room & board. They were able to reduce the expense because of some agreed upon rate.

From diagnosis through surgery, the total expense for Nick is around $103,000. Thank goodness for Insurance!

Terry

apologies for the thread hijack, Luvs!

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

You can hijack any thread. It got a discussion going with my parents too, so its all good. The money involved is just unbelievable. I am glad your expense was minimal...um, I mean nothing! :)

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

did that include chemo and rads ?

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Yes, the total 103,000 and change is all inclusive from date of diagnosis through the release from surgery. I had, of course, a deductable to meet, but we met that early on in the journey. All expenses were covered after that.

Terry

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I hate to say Welcome when saying hello to someone new joining us here, but Welcome it is. You will find a wealth of information at your finger tips from those living with this awful disease.

Does your dad have a Jtube? Would he consider supplementing his daily intake using the Jtube?

My 48 y.o. husband had the THE surgery on 09/08/11 and moved fairly quickly to eating durn near anything. In the early days, he found oatmeal and puddings worked really well. Sandwichs without crust were okay also, but in very small bites.

Fatigue has been a big thing for my husband. He's very much an outdoors kind of guy with great leg muscles. All the down time this past summer has caused him to lose that muscle tone so getting out is that much harder.

It all comes back. It just take time.

I'll let others jump in from here. I'm not able to get my thoughts together here at work.

Prayers and best wishes to you all,

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

He does not have a Jtube anymore.

It looks like Nick had the surgery a month before my dad, Roy. Was there a morning or a day that Nick said, wow, I can eat more? or do more?

Did he have to have Reglan? If so for how long? (We just got the okay tonight that he doesn't have to take that anymore. It started making him dizzy.)

Now it is just prilosec.

I am so grateful that I decided to come on this site. I have learned a lot, and do feel welcomed and supported through this ordeal.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I know that coffee cups were his meal size for at least the 1st two weeks home, and then sometime in the 3rd or 4th week home following surgery, it was just BAM! and he started eating. and I mean EATING. He isn't able to put it away like he could before, but his portions aren't coffee cup sizes any longer either.

Nick's Jtube was removed 20 days after surgery. He never used it once released from the hospital. It was odd though.... He was eating well while he had it but once removed, he lost his confidence. Once the Jtube was gone, he found it difficult to get food into his throat. It would almost choke him. We are certain it was a mental dependency on the Jtube being there to for additional support if needed. Dexamethazone (Emend) got us through those days. It helped quell the nausea that still creeps in sometimes, and has the added benefit of creating hunger. A win/win for us. He has never had Reglan. Just an FYI about Reglan - there have a few here that had negative experiences with Reglan. It can increase anxiety and create depression or a sense of uncertainty. My sister was on it for a short time and found that she became unable to leave her home. Driving too far from home was nerve racking for her. Others take it without issue. Just mentioning so you might notice if things start to become "a bit much" for your dad. It could be the Reglan.

Doing more took a bit longer. Nick stayed pretty close to the couch until about 3 weeks ago. He has now made a goal of a major house rearranging / painting / carpet cleaning. Once he started on that he regained enthusiasm as well as the determination to keep moving. Maybe your dad needs a goal?

CSN is a wonderful learning experience. The Internet without CSN would be a big, bad, scary place for quality EC information. Thanks for joining in here. You will find great comfort, shared sorrows, and good friends here. All who understand and are willing to help carry your burden.

With love, hugs, and prayers for continued improvement.

Terry

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Shortly after surgery there were good days and bad days. My husband had to have four dilations too. So right before the dilations things were pretty hard for him to eat. Some days he would only take in 500 to 1000 calories. He did like carnation instant breakfast mix with milk and ice cream and fruit blended like a smoothie. We would add whey protein to boost the calories. Some people don't tolerate milk or sweets so try it slowly and see how he does. I also make a Apple Cinnamon Shake ( 1 scoop vanilla protein powder, 1 cup applesauce, 1 tsp cinnamon, 2 tbls toasted wheat germ, 1 tbls honey, ½ cup water, 1 cup ice) blend all ingredients together.
I recall my husband had Gatorade or Vitamin water with him all the time trying to stay hydrated. It took him a good 3 months before he could go back to work and then he was bushed at the end of the day. But no longer, he works a full day and has more energy than he did before the surgery. Every once in a while he will have an unexplained bad day again….but don’t we all.

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

How long ago was his surgery? Dad will be very happy when he can have more food than to drink his calories. He has been doing well with Boost and Eggnog but looks forward to having real food. (Grilled cheese, salmon last night and spaghetti tonight!) But unfortunately he still can only have about a cup of anything before he gets too full. So getting the calorie count up is very difficult. But we are getting there.

And yes, it has been rainy/cloudy for the last three days, so yes, even I feel a little blah.

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011
sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Your dad definately needs exercise. It is the best way to regain strength.
I still have problems with ny esophagus closing up and have to have dilations when it gets bad.Because of this I sometimes grate my meat in a processor. The taste is still good, but of course the texture is different.I still enjoy it. It would help him to get that needed protein calories.
I had a lot of eating issues to begin with, but now I enjoy food. I just had to learn a different way of eating.
So glad to have you join us, Sandra

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

It has been amazing that I just happened to find this site to give some guidance and hope to my dad.

It is interesting about the meat comment Sandy. He can have a lot, but chicken and meat is just giving him a difficult time. He keeps trying though and we don't push it. We are going to try a pot roast this week and see how that goes.

A couple of you have mentioned the dilations. What is that process and how do you know you need to have it done? Is it a gradual process that makes you say "Oh I need to go have that done in a week or so..."?

That makes a lot of sense about the Reglan - anxiety and uncertainty. My dad isn't normally anxious but he said something this week that made me think of anxiety. But he just passed it off and said it just felt jittery. And the uncertainty...I think today that was showing. Which is what led me to this site.

Tomorrow is a new day and we will see how he is off the Reglan. :)

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

It has been amazing that I just happened to find this site to give some guidance and hope to my dad.

It is interesting about the meat comment Sandy. He can have a lot, but chicken and meat is just giving him a difficult time. He keeps trying though and we don't push it. We are going to try a pot roast this week and see how that goes.

A couple of you have mentioned the dilations. What is that process and how do you know you need to have it done? Is it a gradual process that makes you say "Oh I need to go have that done in a week or so..."?

That makes a lot of sense about the Reglan - anxiety and uncertainty. My dad isn't normally anxious but he said something this week that made me think of anxiety. But he just passed it off and said it just felt jittery. And the uncertainty...I think today that was showing. Which is what led me to this site.

Tomorrow is a new day and we will see how he is off the Reglan. :)

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

Some never need it and some have had a dozen of them. I figure that a person is going to have some problem swallowing after that surgery but I think that when I knew that I needed dilation was when even a large pill got stuck. It comes on gradually.
Chicken still gives me minor problems but not really a big deal. It must be the texture of the white meat vs. the dark meat. I am going to slowly roast some chicken drummy's till they fall off the bone today for supper and see how that goes.
Last week, I was seriously considering going in for my 5th but I had a cough and cold so I put it off. Now the cough is gone and I am swallowing great. So a little throat issue and the swelling brought on problems. I feel that I learned something. That catching a cold or the flu now could be a more serious thing than in the past.
I am going to schedule a flu and pneumonia shot for this week and not take any chances.
Jim

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

With me, It comes on gradually. Your food will get stuck and have a hard time going down.It can be painful at times, but I don't think it's ever life threatning. The procedure is done with sedation as an outpatient procedure--At least thats the way my doctor does it. My doctor has told me it might be a permanent occurence with me, and when I feel like I need a dilation, call the office and they'll schuedule it. This is not common with all Ec patients. My only other option is surgery,but NO THANKS.
I know not to eat steak ( I would be asking for trouble). Chicken can also be a problem, but I do eat it--small bites and chew, chew, chew. Barbecue chicken is one of the foods good when grated. I have to pay attention to what I'm doing or I will have problems. But you know , it's all worth it--Food is good and I'm so glad to be able to eat. It's a small thing to put up with, because I have LIFE!
Sandra

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

That is so interesting that chicken has been an issue as we were thinking that wouldn't be bad. But dad has tried it a couple of times and said, "nope, that isn't working..."

It sounds like variety is the key and just trying to see what works.

Luckily I was wrong when I said it was stage IV, at one point during the chemo there was a cancerous cell outside the esophagus, but it was removed.

He is starting physical therapy tomorrow to get his muscles moving again. I think that will help.

Beth
Daughter of Roy
DX 06/17/11 T3N1M0 stage III
!0/07/11 Robotic Esohagectomy

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

My MIE was 5 1/2 weeks ago and overall I'm doing well. 6 days in the hospital, and J tube out after 18 days. My wife made most of my diet decisions for the 1st couple of weeks, and stuck closely to the UPMC diet: 1 week of clear liquids, 1 week of full liquids, 1 week of soft solids, then (almost) whatever you want. It worked well for me, and since then I've had meatloaf, salmon, chicken, white fish...lots of variety. The only food problem I've had is that I seem to now be lactose intolerant, which I never was before. Lactaid seems to work OK, but not regular milk. Last week I thought I had a stomach virus with all of the lovely symptoms, but it seems to have turned out to just be the milk. I lost 20 lbs after surgery and have been maintaining fairly well, but it's a struggle even though I am much less active than before. We just got some Benecalorie and I'll try that later today. I used to eat 3 good size meals a day, and it's proving to be a somewhat difficult adjustment to have 6 or more small meals.

My wife also had me out on 1/2 mile walks in the neighborhood a couple of times a day after the 2nd week home, and now I'm up to 1/2 mile walks morning and noon, then 1 or 2 miles in a park when she gets home from work. All my doctors say that has been huge in my recovery, and I really notice it when weather keeps me in doors.

My only nagging problem is persistent pain in my right front rib cage. It feels like they put a 4 lb. lead weight right on the corner where the rib cage turns toward my back, which is painful when I forget and move a certain way, plus the skin all along that part of my rib cage is ultra sensitive, even just from moving my arm, which causes the muscles in that area to move the skin. Does that sound at all familiar to anyone? The surgeon said it's probably just nerve damage from the surgery that hasn't healed yet, but it's been there for something like 3 weeks now and is getting old and is limiting my activity significantly (other than walking). On the other hand, as my Gastroenterologist said about the surgery, "It may have beem "minimally invasive" on the outside, but it sure as hell wasn't on the inside!"

Bob
T1aN0M0

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Bob,

Good to hear you are doing well. I had an Ivor Lewis surgery so I clearly had a different approach on the outside, but as your Gastroenterologist said the re-arrangement on the inside is basically the same. My right rib cage area was sensitive to touch and movement for a good six months after my surgery. It does seem to take a while for the tissues and muscles in that area to move back to their new positions and settle.

I found that the more I used those muscles (even with some discomfort) the faster they seemed to get better. I even had my PCP refer me to a few weeks of physical therapy and they gave me some stretching exercises that helped a lot.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Paul:

Thanks very much for your post, which reminded me that I'm not alone and there are almost always answers and support on this board. I was starting to feel sorry for myself again from this nagging pain and discomfort, even though my surgeon and my PCP both said to be patient and wait for the nerves to mend themselves. Your experience validated that advice and I feel much better about it now - not more comfortable, but better lol.

I think I'll wait a couple more weeks, then ask my PCP for referral to either a neurologist or physical therapy. And I'll follow your advice and try to use those muscles more, and hope that stimulates faster recovery.

Thanks again.

Bob
Cape Cod, MA
T1aN0M0
9/23/11 MIE at Mass General Hospital

Hennings419
Posts: 4
Joined: Nov 2011

Hi Bob,
I just discovered this site today, so this is my first post. I had my MIE on 2/15/2011. I was 59 and had been very active ((Bowflex workouts, martal arts, bike riding) when I was diagnosed with squamous cell carcinoma in January. Fortunately it was stage 1 and I didn't need chemo or radiation. However, I did also have a thickening of the mucosa, and ultimately had over 80% of my esophagus removed. I seemed to share most of the post op problems that others have mentioned, including pain and numbness in my right rib age.

As soon as the doctors cleared me to resume regular exercising, I resumed the Bowflew and dumbbells, and after several months of regular workouts, I am stronger than before the surgery.But the rib area was the last to improve. I had installed a pull-up bar in my barn a few years ago, and before the surgery I could do about 6-7 overhanded pull- ups, and about 10 with an underhand grip. After I had already been working out for a few months, I couldn't even hang from the bar without pain, let alone pull myself up. One day in frustration and anger, I climbed up a small ladder so that I could be in the pulled up position, and I slowly let myself down. There was a bit of pain, but not as bad as expected. I kept at it until I could start pulling up. Today I am nearly back to pre-surgery level. Sorry for being so long-winded, but it was more like 5 months before things returned to normal. I still experience some numbness, but no pain.

Hope this helps. Hang in there, there are better days ahead.

Regards,
Pete hennings

Hennings419
Posts: 4
Joined: Nov 2011

My surgery was performed at Shands in Gainesville, Florida ( a teaching hospital associated with the University of Florida). Dr. Steven Hochwald was the surgeon. While I am fine now, the first two months after the surgery were pretty rough. I had bleeding after the initial 6 hour surgery, so they had to go back in the next day for about 3 more hours of surgery. I was in ICU for 2 days, and in the hospital for 8. We had purchased an adjustable bed a few years ago, and had prepared for coming home by, for instance, getting a shower bench and hand-held shower. Even with the bed, I found that I had to sleep in a recliner for about a week. I also developed fluid in the lungs, which would cause me to wake up out of breath. A few days on lasix seemed to fix the problem. My main complaint was weakness, fatigue, and loss of strength. I had been encouraged to exercise, and it would totally wear me out just to walk to my front gate and back. And while I had a pretty positive and stubborn attitude, I must admit I had a few down days when I wondered if I would EVER get back to good health. It took about two months until I felt pretty normal. And the turning point came in May, when my wife and I went on a transatlantic cruise. We were at sea for nearly two weeks, and I decided to put that time to good use by working out in the fitness facility every day, as well as pampering myself with the sauna, Turkish bath, and several massages. We ended up in Switzerland, where I spent a week hiking at least a mile a day at 5000 ft. It seemed to really improve my stamina.

Today I feel great (other than some issues with my voice). I have come to see my cancer as a gift, if that makes any sense. I was blessed to have so many people praying and pulling for me. And my wife was my special blessing.

Thanks for your warm welcome to the group.
Regards,
Pete H.

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