Battle #1 done!

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Kathleen808
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Re: Battle #1 done!

Postby Kathleen808 » Tue Jul 13, 2010 2:22 am

Heather,
It is good to hear that Mike's surgery went well. Glad to hear that you had good support at the hospital. We have found that our friends and family have really sustained us during this time.
Dick had an epidural for his second surgery. It really took care of the pain while in the hospital. It was a bit tough coming off the epidural because it worked so well. After meeting with the pain management team they did get the pain under control with pills so he could head home.
Thanks for keeping us posted.
Get some rest.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

mike's wife
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Re: Battle #1 done!

Postby mike's wife » Tue Jul 13, 2010 6:43 am

Long night last night. For a guy that can fall asleep within seconds of laying down, he was awake most of the night due to not being able to move around. His legs are finally feeling a bit more normal and the epi has been reduced down to 5 from 8, but he can still boost it if he needs it. He's not happy with the catheter and wants that out yesterday LOL.

At least he was able to stop using the O2 around midnight last night and his O2 levels have remained at mid-upper 90's. Blood pressure has been really low, but then his usually is low. Just more so now, so they did a quick flush to bring it up a bit and that seemed to work.

Docs should be in this morning, which will be the first time Mike has seen them since before surgery. Hoping we can find out how many nodes were removed and where we go from here.
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com

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Gaelen
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Re: Battle #1 done!

Postby Gaelen » Tue Jul 13, 2010 8:03 am

Heather - the first couple days in the hospital immediately following surgery can be the hardest on the patient, until s/he learns the routine and the nurses' schedule and figures out which way(s) to move hurt the least. But they will pass and things do usually get smoother.

I noticed a few people (caregivers) mentioned that someone should stay with Mike each night in the hospital. As the patient, I can tell you that honestly, that is NOT something that I would have wanted - and as you know now after Mike's first night on the floor, it's not going to be easy for YOU or whoever else is 'sleeping over' to rest because of the activity of the hospital.

Yes, it's great to have a person who can advocate for the patient - but that means someone who is around and awake and clear-headed and can take notes when the doctors do rounds, who can get more cups of ice chips during the day, who can be sure that the newspaper guy drops off the latest paper. If you've spent all night in the hospital, you're not going to be on your best game when the docs drop by to visit. Yes, they often round early (6am) which means you might need to be close by so that you can make a quick trip in to the hospital to be there when the doctors show up. But if they round at 6am, and they wake YOU up, too, neither you or the patient is going to be at his/her best.

The other thing to consider is that having extra people in the room can be VERY tiring for the patient - and there's already NO privacy at all in most hospitals. It can be a lot easier on the patient when family ISN'T around every single minute. ;)

Frankly, as a patient, I could catch up on sleep by cat-napping during the day - and that made up for being awakened a couple times each night for vitals and pain meds. You, OTOH, will be running on high during the day *and* you don't get to sleep well at night in the reclining bed/chair the hospital provides. You might be able to manage that for a night or two, but by the end of a 7-10 day hospital stay, *you're* the one who's going to need bed rest. ;) You may also want to consider that Mike may rest better when he knows he's not disturbing you - lots of couples are like that. So I'd strongly suggest that you find a place to stay at night that *isn't* the patient's room, and pop back in right before morning rounds, and don't be afraid to occasionally leave the room during the day so that your husband can rest, you can recharge in a non-hospital environment, and the hospital staff can do their jobs.

This all assumes that your husband is conscious and can talk to the medical staff on his own. When a patient can't communicate for him/her self (language barrier, or unconscious) then family needs to be in the room 24/7. And in my very experienced patient opinion, patients who *won't* or **don't* communicate are a different issue and family members need to balance giving the docs information with not enabling those patients to decline to put on their big-kid panties and take some personal responsibility for their care. But that's another post. ;)

For now, just be sure to pace yourself, Heather. If sleeping in Mike's hospital room at night isn't preventing either of you from getting enough rest, fine. But if you find yourself feeling unrested, fraying at the edges, feeling overwhelmed, then go home or find a nearby hotel or care house to spend the nights. Don't let anyone's expectation that you should stay in the hospital guide your actions - let how you feel in the morning after a night in the recliner chair versus a bed define how you handle that. You will be a better advocate in the morning, and chances are that the patient will have a smoother night as well, because s/he's not worrying about disturbing the caregiver sleeping in the recliner.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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hopeful
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Re: Battle #1 done!

Postby hopeful » Tue Jul 13, 2010 10:32 am

Heather, so glad to hear that the surgery is over. He'll be feeling better each day, the first couple days are the toughest. Sending positive thoughts your way.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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CRguy
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Re: Battle #1 done!

Postby CRguy » Tue Jul 13, 2010 11:40 am

mike's wife wrote:Thank you for all the support shown on my previous posts!
Mike's Wife (Heather)

... and continued best wishes for an uneventful post-op recovery and success into the next stages of the journey !

In Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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hopeful
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Re: Battle #1 done!

Postby hopeful » Tue Jul 13, 2010 11:52 am

Gaelen wrote:
I noticed a few people (caregivers) mentioned that someone should stay with Mike each night in the hospital. As the patient, I can tell you that honestly, that is NOT something that I would have wanted - and as you know now after Mike's first night on the floor, it's not going to be easy for YOU or whoever else is 'sleeping over' to rest because of the activity of the hospital.



I think this depends entirely on the patient, the caregiver and the hospital. I stayed with my husband night and day for 6 days and it was beneficial for both of us and wouldn't have done it any other way. There were too many times, especially in the day or two following the surgery that he needed someone to get something or bring something to someone's attention when he wasn't getting a response from the hospital staff or was too groggy from painkillers to get the help he needed.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

lydia123
Posts: 771
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Re: Battle #1 done!

Postby lydia123 » Tue Jul 13, 2010 11:59 am

Yeah, that does really depend on the couple. My husband threw me out around six the day after the surgery. He decided I'd serve him better if I were rested, and I clearly needed the sleep.

He found that the noise reduction headphones were a great help. Pricy, but provides privacy when one doesn't have any.
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

JennyB
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Location: St. Louis

Re: Battle #1 done!

Postby JennyB » Tue Jul 13, 2010 2:52 pm

Glad to hear it went well -- wishing Mike a speedy recovery!
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

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beccab1
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Location: Raleigh, NC

Re: Battle #1 done!

Postby beccab1 » Tue Jul 13, 2010 3:32 pm

Great news! Hope he has a quick recovery!

Becca
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
ypT2N0M0
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

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pstolarski
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Re: Battle #1 done!

Postby pstolarski » Tue Jul 13, 2010 8:27 pm

I had mine done without the epi but mine was laproscopic. One suggestion I would make is if he is in a lot of pain ask for a drug called toridol. It is like a super motrin that deals with swelling and pain. You can only have so much of it every 8 hours and dosing is based on age and kidney function. It was like night and day with me when I was on it. I was able to get off the pain pump quicker and out of the hospital in 4 1/2 days.
Colon Cancer - DX 5/7/09 Age 42 - Right Hemicolectomy
DX: Stage IIA - T3N0M0 0/31 lymphnodes, poorly diff adenocarcinoma
Genetics testing: Negative
Started Folfox 7/22/09
Finish Folfox 12/24/09 8 rounds of Oxi

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BrownBagger
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Re: Battle #1 done!

Postby BrownBagger » Wed Jul 14, 2010 6:13 am

My wife visited me every day, but as Gaelen notes, it was nice for both of us to have her go home at night. One one thing, there was really no place for her to sleep and the rythym of life on the ward was is designed with the patient's and staff's convenience in mind, not visitors'. For example, all visitors had to use a public bathroom on another floor. Hospital rules. Bottom line: I had to cut my own deal with the people on duty, and sometimes other people just get in the way. I was pretty much able to act as my own advocate. So, it was great to see her when she came, and nice to see her go home to a more comfortable environment.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

mike's wife
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Re: Battle #1 done!

Postby mike's wife » Wed Jul 14, 2010 7:55 am

Mike continues to amaze me! He has been up walking around since late yesterday morning (day after surgery), loose stool and as of last night allowed to eat "real" food like toast & pudding. He's only about 40 hours post-surgery as of this post. He's REALLY hoping the foley can come out today. He's not a complainer, but that thing is about to drive him crazy.

He slept better last night thanks to Ambien and Jimmy Buffett on the iPod & hoping he'll be released tomorrow. I told him not to push going home. The kids and two dogs won't exactly make it easy to rest.
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com

mike's wife
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Re: Battle #1 done!

Postby mike's wife » Mon Jul 19, 2010 6:39 pm

Just when you think you know what's going on things switch again. Mike had his staples removed today and doc said he wants pathology to go over the lymph nodes again. Three were more than 3x normal size and all docs & oncs involved prior to surgery assumed lymph node involvement. Doc is "cautiously optimistic" at this point. If nodes are still showing clear he doesn't think the onc will go with chemo.

Genetic testing is in our future and at that point depending on if Mike shows markers for a certain virus (I think?) we may need to go as far as considering a total colectomy.

Mike is at least feeling well enough today that he took the kids out on his own tonight. I'm so grateful to have a bit of quiet. It's hard to keep the kids (ages 4 & 6) occupied when Daddy is home, but not actually available.

Sorry for the complaining - been one of those days :roll:
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com

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CRguy
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Re: Battle #1 done!

Postby CRguy » Mon Jul 19, 2010 7:59 pm

Sounds like a positive situation for right now, deal with the rest down the road ! Continued best wishes for good healing and good Doctor reports ! No chemo would be nice but if needed...doable !

just a quick note : please post it on your fridge...... "Doing too much...too soon = Not a good idea !"
What's that old song lyric ( which I haven't managed to mess with yet !) : Nice and easy does it..every time !

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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