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Newly diagnosed - need advice

KitKat3
Posts: 17
Joined: Nov 2019

Hi I was diagnosed few weeks ago 7cm in cecum with extended local nodes and possibly lynch syndrone. Surgery for right hemicolectomy and hysterectomy scheduled for Dec 3rd - waiting for genetic Lynch testing results to see how much to take. Looking for advice on how to deal with surgery recovery what should take for nausea, what to eat, how to cope at home after any advice welcome. Taking one step at a time ?

Trubrit's picture
Trubrit
Posts: 5120
Joined: Jan 2013

It sounds like you are halfway there, knowing that you have to just take it one step at a time.  

As you know, surgery affects each of differently, so you will get allot of different advice, all of which will be good, some of which you will use. 

I had my Bowel Resection seven years ago yestreday.  Things are getting foggy - a wonderful place to be - but I do remember a few things post surgery.  FOLLOW ORDERS!  I have had many surgeries across the years, and I have always had problems following post surgery orders, and I can tell you now, I have suffered because of it.  The biggist is weight restrictions, sitting in baths, long walks, if you are told six weeks before you can do.....   then six weeks it is.  I feel every single day the results of doing too much after my liver surgery. EVERY DAY. If I could turn back the clock, but I can't.  

So that would be my best advice. 

You only have a full week before surgery, so look into what supplements you are NOT supposed to take before surgery, if you take supplements.  

Be sure and take a nice comfortable pair of sweat pants - or a dress if you are a lady, so that nothing rubs away at your incisoin. 

Once you are in your room after surgery, and they get you up for that first walk, you won't want to move because it hurts, but once you are up, and moving, it is so much better. After you have the all clear, then get yourself up and walking just as much as possible. The more you walk, the quicker the recovery, the better you feel. Walking is your friend.

Once home, Eat a healthy diet but don't put off the occasioal - which for me is once daily - treats.  Lots of water to keep hydrated, keep the bladder moving and if you don't come home with 'the bag' then water keeps those bowels moving as well - for the most part. Some patients suffer from constipation no matter what. 

 I liked to air out my incision as much as I could. 

I wish I had purchased my Bidet allot sooner than I did. I got one fairly cheap on Amazon ($26) and seven years later it is used many times a day.  

Right, lets see what other folks have to say.

I wish you the best on the 3rd.  And I look forward to getting to know you here on the forum. 

Tru

KitKat3
Posts: 17
Joined: Nov 2019

Thanks Tru. Some sound advice. Yes I am a 49 year old female so a dress will be in my hospital bag.

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

A few thoughts of my own to add to Tru's wonderful advice:

Bring a bathrobe and slippers to the hospital (they want to keep you in a gown, and walking in one is not too comfortable and dignified).

Get up and exercise as soon as possible.  I was walking the hall when the doctor came to talk to the day of the surgery, although perhaps my situation was unusual.

Even though surgery is imminent, train for it like a sports competition.  Exercise as much as humanly possible.  Eat heartily (they will drain you literally and figuratively in the surgery prep, so a few extra calories are helpful).  Sleep as well as possible.  Look into some elementary meditation.

Enjoy every minute of every day.  Take time to watch the sun rise and set and watch the children play.

Best of luck in the upcoming challenges.

KitKat3
Posts: 17
Joined: Nov 2019

Thank you

Lovekitties's picture
Lovekitties
Posts: 3341
Joined: Jan 2010

For any hospital stay, I suggest a nice soft warm blanket.  The ones hospitals have are not very warm and I personally get cold after having anisthesia.

Check out the height of your furniture at home...chairs, sofa, bed...to make sure you don't have to stress abdomin muscles to get up and down.  If a bit low, for chairs or sofa you could at one or more pillows.

The staff will want you up and walking as soon after surgery as possible, so take a robe to avoid that draft from the rear of the hospital gown.  

They will also want to make sure the plumbing left is working.  I have been told chewing gum will help get things moving...why I don't know but folks say it works.

At home have a pillow nearby in case you have to cough...holding it tight to your abdomen will help.

It was recommended that I eat lots of protein foods to help with healing.  Eating small meals multiple times a day may be easier than just the regular 3.

What to eat depends on what your doc says is ok and what you feel you can eat...I had a terrible time with the hospital food, but do your best.

wishing you an easy time and quick recovery.

Marie who loves kitties

KitKat3
Posts: 17
Joined: Nov 2019

Thanks yes bit worried about the food. Thanks for the advice.

Annabelle41415's picture
Annabelle41415
Posts: 6446
Joined: Feb 2009

Welcome to the board, but I'm sorry you have to be here.  You received a lot of good advice above.  My advice is walk, walk, walk, even though you don't feel like it.  It will help you heal more than you think and will give you some exercise without being too physical.  If you have loose bowels, get a barrier for your rectum like Calmoseptine (behind the counter but not prescription).  Make sure you are on your side before getting out of bed using your arms to prop you up while in bed. If you try to sit up from a laying position you will be in a lot of pain.  It's easier to be on your side and swing your legs over the bed using your arms to get you out.

Most important - don't be afraid to ask for help.  You will have had major surgery and there is no reason to be a hero by trying to do to much.  If someone wants to help you when you physically are unable, just let them.

Wishing you a very speedy recovery and let us know how you are doing.

Kim

KitKat3
Posts: 17
Joined: Nov 2019

Thanks yes my husband will be at home with me for 2 weeks after which will be a great help. Not much fun for him though. I will let you all know how I do and then will be asking advice for next steps. Trying to keep smiling and enjoying the holiday with family.

 

KitKat3
Posts: 17
Joined: Nov 2019

After surgery how long did it take to get back to normal food and drink?

 

shu273's picture
shu273
Posts: 43
Joined: Apr 2019

My Husband had a right hemi also. It was about one week from the day of surgery. He was out of the hospital in 2 days and that was due to the fact that he was in very good shape physically when he went in and was up and walking the next day. He had trouble getting a good nights sleep the first night due to the fact that they come in and out it seems like every 15 minutes and since he was hooked up to the oxygen monitor and was not breathing deeply enough the alarm kept going off. We asked them to set the limit a little lower and that did the trick. Once they un hook you its much easier. Ask questions always, we had great nurses and doctors but sometimes just asking them to try something different like getting the machine to stop alarming or how to handle you when getting up to walk can make a huge difference. And as everyone has said DRINK, DRINK, DRINK!!! Stay in touch....

Trubrit's picture
Trubrit
Posts: 5120
Joined: Jan 2013

I had the same problem with that stupid oxygen alarm.  I am notorious for not breathing at night, and it went off constantly.  After what seemed like two months, probobly about 2 - 3 days - I was so exhauseted and I asked for them to turn it off.   They couldn't without a Doctor's order, so I told them to go find a night shift Doctor - I know they are around, albeit in a little room sleeping when they can - which they did. I slept like a baby after that. 

So lets segway that into another bit of advice. Remember Doctor's and nurses, as special as they are, are not Gods. If you feel you need something, or don't need something, tell them. It is hard enough just being diagnosed with Cancer, having half your innards removed, that emotions are delicate and the last thing you need is a bully for a Doctor or Nurse - they are out they, and you nip it in the bud. 

Tru

KitKat3
Posts: 17
Joined: Nov 2019

Thanks I’m would not say I’m the fittest person out there due to asthma but I walk every day. So expect a bit longer but hopefully not too long.

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

The first day I was supposed to have ice only, the next day a soft diet, after that a normal diet.  But everyone is different.  I forgot about the hugging the pillow advice, it is a life-saver for sneezes and coughs.  Also, try not to laugh, it hurts like heck at first.

KitKat3
Posts: 17
Joined: Nov 2019

SandiaBuddy - maybe laughing while holding a pillow? I hope to be able to stay on the bright side - appreciate all insights thanks

abita's picture
abita
Posts: 777
Joined: Dec 2017

They had me wear a binder after both my surgeries, and it definitely lessened the pain from sneezes and coughs. I hated that thing, but I did need it

KitKat3
Posts: 17
Joined: Nov 2019

Good idea I have one but it’s too large may need to invest in smaller one

abita's picture
abita
Posts: 777
Joined: Dec 2017

Mine was on me when I woke up from the surgery.

AnneO1965's picture
AnneO1965
Posts: 147
Joined: May 2019

Welcome to the forum, we have a great bunch of people here.

I'm adding to the list a pillow for your drive home. It helps to keep your tummy from jiggling and hurting. The first 2 days after surgery, they had me on liquids and jello. After that, it was normal stuff. I didn't eat it because I was constantly sleeping from the morphine, but it was there if I wanted it.

Good luck with your surgery, and keep us posted!

Anne

Canadian Sandy's picture
Canadian Sandy
Posts: 596
Joined: Jul 2016

Lots of good advice above. Let us know how your doing. 

KitKat3
Posts: 17
Joined: Nov 2019

thanks for all the great advice it served me well. I am home post surgery and on my way to recovery. Was in hospital for a week due to low blood pressure but all ok now. Results are in and margins are clear and 22 lymph nodes taken also clear - what a great Christmas present. Waiting now for next steps. 

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

It sounds like you got great results.  Here's to hoping for a future without chemo!

KitKat3
Posts: 17
Joined: Nov 2019

Yes I’m reading lot of trial data and not seeing benefit to OS or DFS for chemo with my results from surgery. Any thoughts? I know people don’t like giving advice just experiences.

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

That's a bit of a hot topic here lately.  I can only speak for myself.  As a 3b, chemo gave me a 10% increase in survival chances.  It almost killed me and caused what seems to be permanent heart damage, among other things.  I wish I had not done it.  Hopefully it is not an issue you will need to address. But I would encourage you to be educated on the issues when you talk to your oncologist 

KitKat3
Posts: 17
Joined: Nov 2019

thanks yes I have been doing a lot of research. Sorry to hear of your heart troubles.

Trubrit's picture
Trubrit
Posts: 5120
Joined: Jan 2013

Heal well, and I wish you luck as you make your chemo or no chemo decision. 

Tru

KitKat3
Posts: 17
Joined: Nov 2019

Thanks

Kazenmax's picture
Kazenmax
Posts: 413
Joined: Feb 2016

Take your time to heal. Walk when you can. We will be with you all the way.

k

KitKat3
Posts: 17
Joined: Nov 2019

Thanks

Annabelle41415's picture
Annabelle41415
Posts: 6446
Joined: Feb 2009

Glad the surgery went well and you are home recovering.  You had awesome news with your pathology report too.  Just remember to get rest and walk, walk, walk.  Hope your recovery is quick.

Kim

KitKat3
Posts: 17
Joined: Nov 2019

Thanks

myAZmountain's picture
myAZmountain
Posts: 326
Joined: Apr 2018

And that you are home and recuperating--I am a right hemi-colectomy myself--just a "semi-colon" now.  Ver good news that the margins/lymphnodes were clean, have you had any other scans done to check liver/lungs etc.? 

KitKat3
Posts: 17
Joined: Nov 2019

Hi and thanks. I had CTs and did not show anything scary. Surgeon did mention she took some of my stomach lining will find out more Friday.

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