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Jim (airborne72) and Grace (lizard44)

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

I think you both have surgeries tomorrow, I wanted to wish you both well and let you know I will be thinking about you both. Here is to a successful, uneventful surgery, with a quick recovery for you both!

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Yes I'm also thinking both surgeries were today.  Wishing you both the best and when you get a chance to post, please let us know how you are doing.  Praying that the surgeries are successful.  Speedy recovery on ever level.

Kim

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Thanks Ladies:

As you can see by the date/time of my post it is very early on the day of my surgery.  I can't sleep.  I am suppose to report to the hospital at 9:30 for an 11:30 surgery, but I have awakened from a fitful sleep with nausea and the hiccups.

I just completed two days of the clear liquid diet and yesterday I swallowed the prescribed antibiotics.  Those guys were not nice to my empty stomach.  If I could only get something of substance into my stomach then this feeling would dissipate.  But I follow orders!

When I awoke I checked my email and this forum and was welcomed with this post.  It is so encouraging to know that others whom I have never even met are thinking about me.  Thank you again Ladies, and good luck to Grace.  She is on the table before me.

Jim

Canadian Sandy's picture
Canadian Sandy
Posts: 630
Joined: Jul 2016

Thinking of you both. I couldn’t sleep night before surgery either. Had to have 2 showers and then be at the hospital for 5:30am so no time to sleep. On the iPad to help keep my mind busy, it sure helped. 

NHMike
Posts: 214
Joined: Jul 2017

Also just woke up and headed to Brigham and Womens this morning to meet with the surgeon and was thinking of you, Beth and Grace and hoping for the best for all three of you.

Ruthmomto4's picture
Ruthmomto4
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Joined: May 2013

i hope they are able to get your surgery date set and answer all your questions! I hope it all goes very well!!

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Thinking of all having, planning and recovering from surgery.  Sending healing energy your way... Cindy

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Thinking of and praying for the Tuesday Rectal Surgery club.  Wonder if Mike's will be a Tuesday?  Can't wait for these major procedures to be behind all of us and to hear all about your experiences.  Sure hope they go well.  The pain management is the toughest thing for me so far.  Guess to be expected.

NHMike
Posts: 214
Joined: Jul 2017

The surgeon said that the MRI looked good and predicts a 10% of a permanent though she had an Anal option if there were more problems when she goes in. I had the option of Oct 16 and Oct 30. I wasn't prepared for the 16 so went with the 30th. They have a one-wekk pre-op examination which I will have to schedule. It appears that they want to check you out to see if there will be any potential problems during the surgery. There's a two-day prep, probably similar to a colonoscopy prep. And there's a two-week post-op meeting. So surgery is 8 weeks from end of chemorad, probably longer than I wanted but the surgeon said that both dates would be fine.

I asked when I could drive and she said - when I'm off pain meds. So that's a known. I asked about staying nearby as opposed to staying at home and she said that staying locally would be easier if there were complications. So I guess the meeting went as well as could be expected. Mine's on a Monday so no Tuesday club for me.

She mentioned that they will install a urinary tract stent so I guess that there may be some residual pain in there for a while.

She also marked up a diagram to see what the options were.

I'm going to talk with my manager on Monday about handing off work and when I'll return. She was expecting six weeks. I'm hoping for 2-3. I won't know until I know.

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

The urinary stents at least in my husband's case come out when the catheter is removed. I think it's just so they don't accidentally cut the ureter.  My husband was told he could drive when he could stomp his feet on the fooor without pain,  since he stopped meds before he even came home.  

You seem to be keeping in good physical shape so I think you will sail through. I am sure you are happy to have an end to this in sight. 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

So good to hear from you, jim. You can go off to sleep knowing that you have not only your loved ones and friends praying/routing for you, but a whole heap of stranges here on the forum. 

And Grace. You sweet, sweet thing. You know I'm thinking of you. 

Tru

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

October 30.  I also had urinary stents with just a little pain after removal.  In Japan they wait 10 weeks between treatment and surgery.  Praying for a temporary for you, but regardless of outcome you'll maintain that active lifestyle!  You and Jim seem so strong.  

NHMike
Posts: 214
Joined: Jul 2017

I'm waiting for Jim and Grace to come back online but I realize it can take a while to get a device that can post while dealing with post-op stuff.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Anxious to hear from them as well.  

desnee2029's picture
desnee2029
Posts: 28
Joined: Aug 2017

PRAYERS for uneventful surgeries and quick recoverys.

 

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Prayers and wishing you both well through your surgeries today.  You are past the worst part - the surgery.  Now it's time for healing.  Couple things you should do after surgery is get up and try to walk as soon as they allow and then walk, walk, walk.  It might hurt like heck but walking is going to be the best thing for you.  Make sure you stay up on pain medication.  Don't abuse it but don't wait until you can't tolerate it any longer.  It's better to keep the pain level steady and then back off medication.  Once again, wishing you both the best and a fast recovery.  You are in my prayers.

Kim

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  I'm praying everything went well.  Keep us all posted on your progress.

Trubrit's picture
Trubrit
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Joined: Jan 2013

Just popped in to see her FB page, and there was a post-surgery report from a loved one saying that surgery went well. 

I can't wait to hear her sweet words to us though. From the horses mouth, so to speak.

Tru

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

So good to know Grace is okay.  Appreciate the update.

NHMike
Posts: 214
Joined: Jul 2017

Thanks for the update. I've not figured out how to post on this site with my phone. I have no problems with my PC but can't seem to log in with my phone.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I posted a seperate thread, but will double post here. 

Grace is still in the hospital, of course, but can't get onto her page to post, as she doesn't have her password. She is able to read all the lovely posts though, and is really grateful for all of the thoughts and prayers. 

It is always such a relief to hear from our forum friends after a surgery, appointment, blood work, scan, time away from the forum. We're just one loving family, who cares about each other. Its a huge blessing, well, it has been in my life, thats for sure. 

Tru

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Everyone:

I made it through and finally reached a place where I can comfortably compose a coherent message that summarizes my experience.  Whew!

My procedure was successful.  I ended up with a temporary bag.  The surgeon made that judgement call and I am OK with it.  The extenuating circumstances were scar tissue that resulted from my radical prostatectomy conducted in 2009 and the effects of the radiation on my rectal tissue.  Because of that he doubted that he could get a reconnection good enough to function without leakage.

However, I had difficulty with pain control.  My surgery began at 11:30.  I was not rolled out of recovery until about 7:30 because they could not get me comfortable.  None of that do I remember.  However, I do remember arriving in my room and experiencing severe pain for a while (30+ minutes) while they adjusted my dosage.  I was receiving meds through an IV and an epidural.  Part of this was because of my high dosage of pain medication that I have been on for years.

My day after surgery was worse because of miscommunication with the hospital pharmacy.  No one would authorize the oxycontin so I HURT for most of the day.  No excuse for this and I intend to aire my opinion as soon as I get out of here.  I went out of my way to thoroughly explain my pain management situation to all affected personnel, but what I feared might happen did happen.

Today I have been up and walking as it absolutely is very beneficial for recovery.  Painful at first but eventually you regain your stride and strethch out your groin area.  I have also been trained on the use and replacement of the ileostomy bags.  My diet has been increased one level above liquid and I may be discharged tomorrow, but I am not yet sure if I am ready.

So my midterm plan is to recover from this surgery and then begin the mop-up chemo regimen (6 two-week cycles of 5Fu received through a port and a bag that I will carry).  About a month after that, or whenever I am physically strong enough to withstand the surgery, I will undergo the ileostomy reversal.  It will be March or April by the time I am finished with all of this, barring any complications.

My mental state has warbled a little bit.  I guess I was enjoying the temporary honeymoon between the end of rad/chemo and the resection.  The acute pain associated with this procedure was another "cancer slap in the face" and reminder that CRC is a long term event.  In one form or another, the cancer will affect you and you must remain on guard with a positive attitude.  It is very tempting to slip into a pity party.

To answer the question about stents - mine were inserted and removed while I was under general anesthesia.  There was no need to leave them in.

I am glad to be back and I appreciate everyone's concern.  Hope my experience has shed some light on what others may soon be facing.

And one more thing, cancer still sucks.

 

Jim

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

So glad to hear that you are up and walking and that the pain level has been adjusted.  So good to hear from you.  It's will be an adjustment with a temporary but can be doable.  CRC can be treatable and very much liveable as I've been through it as well.  Remember to walk, walk, walk.  It will help with recovery.  When you get home you might have some of the worst gas pains that will double you over and this happens to a lot so don't be alarmed but the more you walk the more you will pass the gas you need to.  Just wanted to give you a heads up.  Hope you recover quickly and thanks for posting and letting us know you are in recovery mode.

Kim

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

I am very sorry the road to get there was so hard. I think a little brief pity party is ok. You made it through you can do anything! I hope it just gets easier from here!

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

You really are the strong one to be determined to walk and get home asap.  Your thoughts appear to be clear now; and hopefully they will send you home with some strong meds.  I had to speak to my surgeon today who will MAIL me a refill as they aren't allowed to phone them to the pharmacy.  Shame these opioids are so highly regulated when we need them.  You are fortunate to have your treatment planned so specifically.  Pot o'gold for you in Spring 2018.

Jim, you continue to inspire.  Prayers you will conquer this.  

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

A pretty good post Jim, seeing you're so soon out of surgery. 

Keep up the good walking and positive attitude. You'll be off and running any time now. 

Tru

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Thinking of you all and remembering those early days after surgery... sending gentle hugs (not too hard).

Almost one year later and got through it all and you will too. 

Cindy  

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

So glad surgery is done for you and you are past that point.  Hope that you get home soon and your recovery is fast.  Look forward to seeing your post when you are able to get back on line.

Kim

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Thanks ladies for your comments.  It is very reassuring to know that kindred spirits are sharing my journey.

Jim

NHMike
Posts: 214
Joined: Jul 2017

Good to have you back Jim. Sorry about your pain issues but I hope that everything gets straightened out so that you can work on recovery. It sounds like the road is still pretty long for all of us. I'm just hoping that the potholes get smaller from here.

Sunnydeecat
Posts: 16
Joined: Aug 2017

Praise God all went well for you both!!!

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

That's good news all went well for the most part.   I'm in that 'honeymoon' phase as you put it post chemo/rad and waiting on surgery.  Well said.  

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

And to Trubrit for posting on my behalf.

The surgery on Tuesday went well.  The surgeoin said They took out about a foot of colon plus the rectum, anus, etc. and he got good clear margins. Preliminary pathology reports indicate that  the lymph nodes were  clear and none of them tested  positive for cancer.

Like Jim, I am hurting like the dickens. Most of the pain is in my backside, which makes sitting for any length of time extremely uncomfortable. I was discharged today, with a prescription for  Hydrocodon for pain with  my drainage tube still attached. I've already done one emptying of the colostomy bag  and one emptying of the drainage tube receptacle all by myself since we got home. It wasn't really as unpleasant as I'd imagined to would be.

I'm very glad to be home where I can eat real edible food, albeit a soft bland diet. The hospital food was either too sweet or too salty and the eggs must have come from rubbery chickens.

One of my major complaints is that no-one  in the SICU unit was authorised or trained to  access my port, so all the blood test sticks were in  my arms with their tiny, roling veins. Needless to say my arms turned several shades of purple and red and swelled up like  fully fed ticks. 

Jim, I hope you begin to feel better.

Grace/lizard44

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

I am glad you are home and I hope your pain eases soon! It's fabulous news none of your lymph nodes were positive! That's just so great! I hope you heal quickly and no more rubber chicken eggs for you ever! :)

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

running around emoticon I'm running around in happiness to have read your post. 

 Sadly, the pain and discomfort are part and parcel, but I hope they are short lived and you're back in your beloved garden before winter sets in. 

Take GOOD care of yourself. 

Cyber hugs!

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

It's so good to hear that you are home and eating what you want besides terrible hospital food.  Yup you're butt is going to hurt for awhile so get used to standing while you eat.  I'd never sit while eating for quite some time because of the radiation and then the surgery.  Just try to do a sitz bath as that can be very soothing and you can do that several times a day.  You can get them sometimes at a pharmacy but if not, your hospital can recommend where to go.  Hope you feel better soon and thanks for checking in.

Hugs!  Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I got one of those seat cushions with a cutout in the back for those with pain back there and it was pretty helpful on long drives and while working from home. It might be helpful after surgery - I'll have to see. I know that there are some modern chairs out there that don't require sitting and those might be handy too - it depends on how long the pain lasts.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Thanks for your descriptive post and am glad that you're back home and in familiar surroundings. I will keep the pain level in mind in my planning stuff (I don't really think that you can plan for it but I will decrease my expectations of what I can get done while in the hospital). My story on needle sticks is that my veins have always been a problem in my right arm and I looked like I was a drug user after the initial bloodwork and sometimes they had to go into the back of the palm which was annoying. Then I asked them to try the left arm and they had much better results so I always have them go into the left arm these days.

Are the pain meds helping with the pain at home now or do they just take the sharp edge off?

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

When I was a young buck I never dreamed that I would be sitting at home on Saturday night eating a petite, bland supper listening to my small intestines burp out green slime into a bag covering a hole in my side.  This is going to take some adjustment, but what choice do we have?

It is good to read the words from Grace.  She is another "knife" survivor.  Welcome home Grace.

Her comments raised two questions for me to ask my surgeon.  I never had a drainage port.  Why?  I have had them for all previous surgeries.  When I came home I looked like the blimp, swollen all over.  For the past 24 hours I have been urinating every two hours consistently and my weight has dropped about 4 pounds as a result.  I wonder if a drainage port would have been beneficial.  The other question relates to my pathology report.  I specifically asked my surgeon (during one of the brief 7 a.m. post surgery inpatient visits) if the tissue had been provided to a pathologist and he said yes, in a nonchalant way, but that was it.   As of right now, I have no idea about lymph nodes or margins.  I was not impressed with this surgeon to begin with but stayed with him so I could be admitted to the hospital where my daughter works.  Her attendance to me was wonderful and offset the less than stellar performance by the surgeon and anesthesiologists.  Just glad to be home so I can take care of myself.  Oh well, the pathology report and staging can be my surprise during my upcoming post-surgery consult.

I do have one more comment and it relates to pain control.  Grace mentioned her discharge script for hydrocodone (a mild narcotic) and her level of pain.  I know full well what my level of pain was and it was not adequately addressed in the hospital.  I am suspicious that the reaction to the current opiod crisis is negatively impacting the quality of care (pain control) for inpatients, and that is unacceptable.  I believe that the government crack down is causing physicians (in this case surgeons) to sparingly use opiods, to a level of negatively affecting the recovery from the surgery.  It's tough to relax when you are balled up in a painful knot; that was my experience this week.

Enough of my rant.  Welcome back Grace.  Our strength increases with numbers.

Jim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Well, that's a level of descriptive prose that paints a vivid picture to look forward too.

My state is probably the worst in the nation for opiod overdose deaths per capita and our politicians have certainly made note of what we're doing about it. Some articles on the issue regarding difficulty in getting pain meds:

https://www.nytimes.com/2017/09/17/health/opioid-painkillers-insurance-companies.html?_r=0

http://www.bendbulletin.com/topics/5342867-151/opioid-crisis-pain-patients-pushed-to-the-brink

http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html

https://www.statnews.com/2017/01/17/chronic-pain-management-opioids/

My local hospital is on EPIC which is one of the major Electronic Medical Records (EMR) systems used by major hospitals and it allows them to share information about patients between caregivers. It also provides an online patient portal so that I can get visit notes, pathology reports, bloodwork reports and allows me to chat with my doctor via an email function. The hospital with the ER that I originally went to has one of these online portals as well. My surgeon's hospital also has one of these via EPIC and I actually found the information about the tumor shrinkage from the portal. I met with the surgeon on Tuesday and she didn't mention anything about the tumor size. I received an email on Thursday with the pathology report and read it on Friday morning and that's where I saw the details from the MRI. I wouldn't think that the doctors would have your data off the top of their head but they should be able to have an assistant get the information to you. Perhaps you could check to see if your hospital has an online patient portal. I didn't actually start using it until about five weeks after my ER visit. It's a convenient way to keep up with your bills, copays and deductibles as well to make sure that nothing gets lost in the mail.

Welcome back to you as well Jim and I hope that you can resolve your pain issue.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I am so happy and envious of your clear lymph nodes!!!!  So much hope and light for your future.  I had a drainage tube for 5 days post surgery.  They were generous with opioids in the hospital, but I ran out of Norco this weekend.  Relying on Aleve & Ibuprofin.  Ugh.  

Went to a cider mill today.  Wore me out!  But good to be in the sunshine again.

Jim, I hate the low fibre diet.  All the white stuff we know is horrible for our overall health, but easy on our stomas.  I find if I chew the food well, it processes fine.  Of course your ileostomy is different than my colostomy.

Grace, I hope you agree the colostomy isn't the end of the world.  I still have my sphincter and a wee bit of rectum, and all my pain is in my abdomen.  But an eensy bit better every day.  

My surgeon shared clear margins with me.  We'll discuss the rest Thursday when I get my staples removed.  I am trying to focus on healing from this surgery before I lament about more chemo.  It's too overwhelming.

So glad surgeries are behind many of us for now.

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