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Poor Me, Poor Me, Pour Me Another...Surgery On 11/14..yikes

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

The GP I've been seeing is a good doctor but with a bedside manner that's so awful it's non existent. I had an early AM appointment with him a few days ago and was there with bells on (big replicas of the Liberty bell that clang when you walk) Sean was there too but he did not have bells on. I like his nurse because she's chatty and fun and she laughs when I ask him him if he's sure he want's to be a stand up comedian. I've grown to just love nurses period - they don't hold back on the compassion and kindness. If you're lucky the Doctors spend a nano second with you - it's the nurses who fill the void of caring that most doctors have long left behind.  

 Oh, and on his wall hangs a big award, a plaque with a blown up cover of Connecticut magazine on it, it's the issue that lists the Top 100 Physicians in the state - you know the one, all states have a magazine like this. During one of my first appointments I congratulated him on making the list and told him that it was a good thing bedside manner wasn't a criteria. So there he is peering at his computer screen and I can sort of see there's a report from the surgeon and he says "this is BIG surgery"
 
I wish I could tell you about the snappy retort I had or a reply that leveled him but I can't and there wasn't. All of a sudden I was under water, I felt like crying but I didn't, at least not there in his office. Hearing those words shattered the denial I was getting so cozy with. The first few days after learning I had colon cancer there were lot's of tears and there was laughter too. Some people went out of their way to support me others seemed to have ran in the opposite direction and who can blame them, cancer is scary it's really scary. I hate the constant worry it's caused Sean, I've never seen him so stressed and so sad but also so brave and so determined.
 
Surgery is this Wednesday I feel pretty awful, my brain never shuts down, not for a second I feel isolated and alone because I've allowed myself to become isolated and alone with a big helping of anger and a side of woe is me. I took a treadmill stress test last week and they found a "Baseline Abnormality" I have no clue what this means and apparently neither does the cardiologist so I'm scheduled for a Nuclear Stress test on 11/12 all I know about it is that it takes around 3-4 hours and the after effect of glowing in the dark starts to fade in a week or two - after that you have to go back to turning on a light if you want to read. Results take 48-72 hours which presents a problem because my surgery is 11/14. The folks at Yale say they'll try and get the results as early as possible and to just keep moving ahead so that's the plan or rather lack of one. It turns out my fight or flight instinct is broken. I only have the flight part -  every cell in my body is screaming run you idiot, high tail it outta here. And it's not just the pain, everyone's afraid of pain - it's this overall feeling that this isn't the end of something bad but rather the start of something worse.
 
abrub's picture
abrub
Posts: 2028
Joined: Mar 2010

The anticipation is often the worst part.  However, don't expect yourself to bounce back in a couple of days/weeks.  This one requires months.  (My colon was resected in 2 places - sigmoid, and right hemi-colectomy, with some ileum for good measure.  No bag, long recovery.  I'm fine.

BREATHE.  You'll get through this.

Alice

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

Thanks Alice and I'm sorry you've had to suffer through 4 surgeries, but that means with so much practice you should be able to perform them by yourself, think of the fortune you'll save on surgeons. Yes, the recovery will be long 6-8 weeks I think because the whole sigmoid colon is being taken out. Sigmoid Freud, who once said remember "sometimes a colectomy is just a colectomy"

Peter

abrub's picture
abrub
Posts: 2028
Joined: Mar 2010

For my upcoming surgery (#5) in February, 2019, my surgeon wants to just give me a spinal so that I can stay awake help supervise.  After all, his Fellows will be there learning, and I have much more experience than they do!   My surgeon is also 11 years older than the first time he operated on my, so he wants me to make sure he's doing everything correctly.  I still don't quite trust myself to do the surgery to myself.  That will be at #6. 

 Cool

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

And the student becomes the teacher, I feel bad for the surgeon but after 11 years he must know what he's in for :)

abrub's picture
abrub
Posts: 2028
Joined: Mar 2010

He laughed, agreed that I could probably do it myself, and asked me to supervise!  (No, I'm not having a spinal - I'll be full under for this.)  Gotta love him!

Twinzma
Posts: 154
Joined: Jan 2018

You must have been a great poet in a previous lifetime, prehaps a famous playwrite? The words you write!!!! Love, the surgery you are facing is not an easy one of course you want to run! As long as you don't do it when you are dressed in the gown then that's okay. The nurses have seen enough full moons, they don't need to see yours as well. You will get through this and yes you will have pain, but you will be given some very potent drugs to ease it. The heart now that is disturbing not having a cardiologist know what that means but as long as your heart is still beating, your good. Maybe a little rythm issue? Maybe a greedy doctor trying to pad the bill. I heard the prices of yachts are going up. In a few days you will have your answers so try not too look too deeply into anything right now, eaiser said than done!

Sean is having a hard time adjusting to all this, us caretakers are really in a pickle you know. We don't know always the right words to say so we are walking on eggshells constantly. There are all theses scenarios playing out in our minds but the person we always go to with our troubles we can not go to now. Our darkest thoughts oh boy, we certainlly can not open up about them to our loved ones that are the patient living it. See if he would join a support group himself they really do help. 

I will be praying for you Peter, more so than usual and for Sean as well. You will get through this love and the other side of surgery will be good. Maybe not at first of course, but you will be as high as a kite through the worse of it so you won't remember that part at least. Hugs!!

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

In a past life I was the village idiot but your kind effort to avoid the obvious is appreciated and you're not half bad at tickling the keys either I might add. Plus a thank you is in order because sometimes you need things spelled out for you even though you should know them by heart. I'm talking about spouses like yourself and Sean, the caregivers who have no choice but to be stoic and brave because we, the people with cancer don't give them much of a choice - at least I haven't and I'm not proud of that because I should always be kinder and more patient. Cancer is a lot of things but it isn't an excuse to hurt someone you love no matter how unintentional.

 
I've been so miserable these past few days that the only reason the dogs stay by my side is because I anesthetize them. Sean is always, always trying his best despite my recently more gruesome and terrifying ogre self. Like you said walking on eggshells, trying to do and say the right thing - trying to side step the emotional land mines this ugly disease has buried all around the grounds of our life, but I think it's impossible for each of us. After I read your post I sent him a message, said I was sorry it made me feel better and I hope he feels better too, he has an odd schedule and works Saturday & Sundays so Mondays & Tuesdays are the weekend around here.
 
I agree about the support groups, I've even suggested this one and promised him that he doesn't have to admit to knowing me, which isn't unusual because most people don't but still he's hesitant, although I've found him reading cancer stuff from time to time and he's been in every meeting with every Doctor, scribbling in his note book and asking important questions while I make shadow puppets on the wall and snoop around for drug samples.
 
And yes, I have been promised the big gun kind of drugs, in fact this surgeon is so kind that he offered to meet me in the alley for a free sample, I declined but how awesome is that? He did promise to keep me comfortable so I expect a big industrial sized vat of morphine and a straw or I'll be writing one harsh Yelp review - of that you can be certain. I know you have your own difficult times but please know how much I hope things are easier for the both of you and that the days ahead are brighter, filled with love and good health - as for those prayers, I'm grateful for any you can spare and please know I'll be sending you plenty of my own.
 
Peter   
Canadian Sandy's picture
Canadian Sandy
Posts: 384
Joined: Jul 2016

You’ll get through this just fine Peter. Don’t make the surgeon laugh to hard or he won’t be able to do his job. lol  Prayers being sent your way.

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

Before they knock me out I hope at least to ask the surgeon if I'll be able to play the piano once I recover, with abit of luck he'll say "of course you'll be able to play the piano" which means I'll get to say "It's a miracle, I've never been able to play the piano!" it's a very old line but it still works. Sandy, thank you for all the kind support it really helps and many prayers back to you from me. Peter

Trubrit's picture
Trubrit
Posts: 4447
Joined: Jan 2013

not all of them 'Big'. Just most of them. 

You will do well.   Be sure to get up and walk, just as soon as you're given the OK to get out of bed.  Getting out of bed will hurt, but once you get moving, you will feel so good. Plus, it gets the bowel moving, and thats what you want after surgery. 

You've got all of us routing for you Wednesday. 

Tru

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

Tru, you're the salt of the earth it shows in posts and kindness, please know how much I appreciate it. I've been hearing how important the walking is and I'll do my best and I think they try and get you up and moving very quickly if not the day of certainley the day after. No matter how much my dogs are barking, I'll be forcing them on to the nurses station and back. Heartfelt thanks for the caring and support, be well. Peter 

SandiaBuddy's picture
SandiaBuddy
Posts: 503
Joined: Apr 2017

Best wishes for good results in your upcoming test and surgery.  Do consider Buddhist philosophy and meditation for assistance with your thoughts and feelings.  It has benefited me.  You could do some reading during the endless waiting for your doctors.  When I started, I enjoyed You are Here by Thich Nhat Hanh. 

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

I do know a tiny bit about meditation and I have no doubt I could benefit from learning more. Thanks you so much for taking the time to reply and for the book reccomendation, there's even more waiting ahead so I'll have the time and the will, thanks again. Peter

Butt
Posts: 70
Joined: May 2018

Pete, it is not a hard surgery. We will think of you.

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

It's really nice of you to offer your support, I hope my experiance goes half as smooth as your surgery went. I know you have a battle on your hands too, I'm wishing you well in return, thanks again. Peter

Ruthmomto4's picture
Ruthmomto4
Posts: 532
Joined: May 2013

we are in CT too, we switched to Sloan but we were using Yale. You will get through this, my husband has had his original surgery where they removed the tumor from his colon, and two liver resections. I think the first and the last were the easiest recoveries for him. I have yet to find too many surgeons with much personality, oncologists are usually the worst, his gastro dr is fabulous though and has tons of best dr in Ct and New York pictures all through his office. You will be very happy recovering at Yale the rooms are all private and the nurses are great. I know how Sean feels I have been in this game with my husband for 8 years, it’s very hard for us too. If he ever needs to talk he can message me any time as can you. Love the dog in the picture if it wasn’t for my kids and my pets I would never make it through this. i will be thinking of you on Wednesday. You are going to be fine!

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

Well hello neighbor, I'm so glad you and your husband are happy at Sloan and I know this is one of the ultimate places to go for cancer. My choice was soley based on this one surgeon there's nothing icy about him he's engaging and warm, from what Ive read and learned quite skilled so I guess at the end of the day it was really more of a gut feeling than anything else. Both Sean and I liked him immediatley and it was closer to home, closer to my dogs. I wish Sean would reach out and get some support and help, I don't know how spouses who become care givers handle it all, and to be honest I don't want to know. I did show him this post and as I told another member here, I told Sean he doesn't even have to admit that he knows me - which is something most of my friends and family do so who knows. Thank you for the kind words about Harley he's the oldest of our two Bulldogs, he's 14 going on 15 and in every way my heart, he's rickety but still here and he's a major reason for me to get better and back home.

Our other is an 8 year old bullie named Elvis. I'm glad your dogs and kids help you and your husband get through - there is documentary you might like if you have netflix you can watch it there or on Amazon Prime, or you can buy the dvd from Amazon it's called " My Dog - An Unconditional Love Story" if you haven't seen this pricless gem, please do because it's that wonderful. Thanks again and my best to you both. Peter

Ruthmomto4's picture
Ruthmomto4
Posts: 532
Joined: May 2013

your gp had the not so great bedside manner, sorry about that! We loved Yale and his liver surgeon was super sweet and nice, but wasn’t willing to do a risky surgery so that was the only reason we went to Sloan. His plan was to continue with his oncologist there DR Jill Lacy we loved her, no warm and fuzzy stuff but one smart lady! They were not able to handle his hai pump no one there knew how to fill it or empty it. I will warn you about oncology there nothing is quick be prepared to wait up to an hour or more for appointments. Not sure where you are but there is a Yale satellite office in Trumbull with excellent drs as well. 

I have not seen that documentary I will have to watch it. We have 3 dogs Sophie is a golden mix and is 14, lots of  arthritis  her new meds seem to be helping. When my dad passed away we put his handicap ramp on our back deck so they didn’t have to do the stairs anymore. We have Ella an almost 10 year old yellow lab, and our newest addition Brady who is about 5-6 months old some sort of lab/pit miX. We also have 5 cats, 3 rabbits, a guinea pig, and two turtles. My son also has a pet rat. It’s a crazy house. 

Again, I will be thinking of you and please Sean if you need someone to talk to I am here. You are going to be fine Peter!! 

Annabelle41415's picture
Annabelle41415
Posts: 5729
Joined: Feb 2009

Surgery is never easy especially when you have no clue what the outcome is but you will get through this and the recovery that follows you because you have a family, friends and people around you, and here that are going to help you move forward.  Remember to walk, walk, walk and then walk some more.  You are going to be sore but moving is the best medicine.  It's ok to be scared, everyone is.   You will get through this.  We are here to help you.  Praying for the best outcome on Wednesday.

Kim

Peter_S's picture
Peter_S
Posts: 118
Joined: Oct 2018

Kim, I know you've had such a hard time yourself and yet you never hesitate to reach out and offer help. This proves my theory beyond any doubt that angels don't just wear white, a few are known to wear yellow. You were one of the first to greet me here and it's just amazing to me that in a such a short time I have really come to love the folks here. I don't know what I would have done without the support I've found in this nut house...errr I mean Forum! I know you are right about walking, the spirit is willing I just hope my footsies are, because boy can those dogs start barking, But I'll do whatever it takes - thank you for the prayers and please know you're also in mine. Peter

ellend
Posts: 71
Joined: Apr 2016

Surgery is scary stuff, doesn't help that the doctors and surgeons have to give you worst case scenarios and the odds. Makes one brain go into overtime worrying about all the bad stuff that could happen, even though most likely it won't.

I had a LAR or Lower Anterior Resection for rectal cancer. The surgeon used robotic surgery so it left only small scars. However, that being said, I needed to incline the bed and use the bed rail to sit upright the next few days. It wasn't that it hurt as much as it felt like my core muscles were non-existent, not that they were that strong going into surgery. People who are in better shape going into surgery probably have an easier time of it. I had a temporary iliostomy, so I can't say anything about bowel movements afterwards. The surgeon wanted to let the colon heal before having toxic waste move through it. Interestingly, I didn't have that much pain, which is a good thing because I don't tolerate pain meds very well so I avoid them as much as possible. Weird, I know. The nurses sometimes scolded me because they said you don't heal as well if you are in constant pain.

Like others said, your doctors and nurses will want you to walk. It helps the healing process, even though you may not feel like you have the energy to do so. My husband nagged me  because the doctor's orders were to get up 4x a day to take a stroll. So one of the walks was to walk with him to the elevators when it was time for him to leave for the day. You can either bring your robe or ask for an additional gown if you don't want to display your rear to the world when you get up for your walks. I used the gown as a robe, putting it on backwards.

Wishing you all the best and hope your recovery goes well.

Ellen

plsletitrain
Posts: 266
Joined: Jul 2017

This is it Peter! Let's do this! We're here for you.  Let's do the surgery first, then let's think of the rest later.  Let's hope and pray it is benign, but if its confirmed to be cancer, we'll be with you through all of it.  You got this. You're very funny and I look forward to still seeing that smile and humor after you've recovered from the surgery.

Butt
Posts: 70
Joined: May 2018

Pete, just please know that a lot of people will think of you tomorrow.... You will see an anesthesiologist before the surgery. They can start making you sleepy on your way to an operating room. You may ask for that infusion, so no extra anxiety when you get to the theater and  have to wait. Butt.

NewHere's picture
NewHere
Posts: 1030
Joined: Feb 2015

You got this Peter.  It will be fine. Your biggest concern is how I will be pining for a few days since you will not grace the board with humor as you take care of yourself and recover.  Laughing  Actually for me  I was on an iPad and iPhone.  I may have posted a bit during the few days in the hospital.  Wi-Fi was intermittent and no cell signal, as compared to anyting else, I was playing scrabble with my brother the next day after surgery and walking around with the IV cart as guide. 

And think about this.  One of the things they want you to do is fart so show things are working properly.  Think about this, you get permission to fart in front of people with no embarassment or apologies needed! 

BTW couple of other things, just as a head's up and not huge concerns:

- Just in case, the first time I went to the bathroom in the hopsital it was like a opening a can of beets with all the liquid dropped into the toliet.  Freaked me the hell out.  Apparently it is not uncoommon. A bit of internal bleeding that clearded up. Freaked me out for a moment because I had no idea.  Nurse came in and said nothing of concern.

- I had a morphine drip.  There was a split in opinion, some said get ahead of pain others said just as needed.  It is on a system where you cannot overdose or adminster doses too often.  I hit it anytime I thought I might be feeling a twinge, but probably really did not need it.  The doctor's asked me if I was in that much pain.  I told them no, and often was maybe mild discomfort most of the time in bed.  A level that did not need morphine for sure.  Also note opiods can bind you up.

- The one time I had discomfort was a muscle spasm.  That was the only real discomfort I had.  They have Ativan for that - muscle relaxer.  They had to call for it and it took a bit of time to get to me.  I am not sure why, but perhaps you can get a standing order for that.  

Kidding aside***, the surgery will turn into a memory quickly.

Did you get the cardiac results yet?

Anyway, try to relax now as much as possible.  As I mentioned you will in all likelihood (99.999999999%) be scared as you get to the hospital and get into the gown. Totally natural and as I mentioned I wanted to run out.  The operating theater is actually kind of cool with all the gadgets and set up.  And before you know it you are waking up and done.  This will become a memory quickly.  5 days after surgery I was home and walking a bit around the house, but relaxing.  I think by two weeks I was pretty good and more concerned about making sure I did not pick up things that were heavy just trying to obey guidelines as opposed to feeling I could not lift things. My internal monologue:  "Hey idiot, the rule is do not lift things over 10 pounds for a month.  Is this 10 pounds?  It could be.  But it looks like I can lift it.  And if I can lift 10 pounds, if this is really 15 pounds, that is not much more.  Eh, to heck with it, let me watch something on Netflix.  I know the remote is under 10 pounds and got to listen to the Doctor.

Thoughts are with you and look forward to seeing you posting back here soon with updates and humor. 

 

*** not joking about farting.  It is true.  Before cancer i had some sense of decorum about things.  It all goes out the window.  And that farting appeals to my inner 5 year old is a bonus  In the past I would go to a dressing room to take a gown off and on under any circumstnance, now when I go for scans from waist up, I just take the top off in the CT room and put it in the hamper and throw my shirt on.  

Ruthmomto4's picture
Ruthmomto4
Posts: 532
Joined: May 2013

if your surgery is still tomorrow I wanted to wish you well and let you i was and will be thinking about you! 

Mikenh's picture
Mikenh
Posts: 782
Joined: Oct 2017

I was worried for my first surgery and spoke to my surgeon's Resident. He could tell that I was worried and he told me that they'd take good care of me. I said that I was worried about dying and he said that it can happen but it's very unlikely. He asked me if I knew of anyone that died in surgery and I said no - I've heard of such things happening - just not to people I know personally. So I went to sleep, and then woke up in recovery. I worried less on the second and third surgeries.

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