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Diagnosed and Surgery 3 weeks ago need advice

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

Hi I am more here for my husband but he isn't as into computers as I am. He was diagnosed with having colorectal cancer May 21st they did not feel there was time to try and shrink so he went from his coloscopy to surgery. We haven't really had time to let this soak in and have sooooo many questions. Things are moving so fast yet when things slow down a little we just want to soak in the peaceful moments. We just celebrated 16yrs of marriage end of April so this has definitely rocked our world.

His is a T3 N0 M0 Stage 2. A spot was found on his left lung but is very small so they are just watching it. He isn't a smoker or drinker is very active etc so guess it is just one of those things. It had broken the bowel wall into the fatty tissue so both radiation and chemo is being suggested. They took out over half his rectum and 6" of his colon I believe it was. No colostomy but I was told there was pretty much nothing left but the pelvis. He barely got out I guess w/o one. At one point I was called and told he was 1/2 was thru the rectum and he hadn't found good tissue yet ...from somewhere I found myself saying that wasn't acceptable... you know like he had a choice...lol. BUT he kept going and surgery ended up 4 1/2 hrs long but he found an area to reconnect.

He was at hospital 6 days after surgery. Released to home on oxycodone of which he hasn't needed any in about 2 weeks now. He was released May 27th, back in June 5th for diarrhea and vomiting they gave him flagyl as they thought infection and had seen small obstruction on xrays sent home June 6th listed as dehydration. Things started coming along fine and the last two days have been awesome! Last night around 11 p.m. he started having severe cramps out of no where. So called on call surgeon and he said could be constipation just have to learn to roll the roller coaster if he wasn't better by Monday bring him to the office or if worsens ER. Well by 1 a.m. nothing was letting up and he had a couple times with diarrhea and thinking back to last weekend on some levels is in much worse pain he described to be about an 8/9 on the 10 scale and he has a high pain tolerance. They ran tests xrays etc started iv, put him on oxygen as his levels were low, temp was 69.9 and started morphine for pain and some nausea meds. How many more times can we expect unexpected trips like this?? xrays show an obstruction -today they said it can be mechanical or physical blockage. He is now on a morphine drip where he controls how much he gets. 1mg per 10 mins as needed. They are kinda waiting it out and keeping him comfortable to see if anything breaks up before going further.

He is to begin radiation and chemo in 3...ish weeks depending. He has no trust or like for the radiology dr. and others we have spoken do not like him either they say he doesn't seem to have any compassion. He did not tell us everything and a few of my husbands very specific questions were danced around and not answered. One being a very touchy "guy" subject about his "equipment" still working since radiation will be in the general area of the prostate he is very concerned. the dr. also didn't tell us the ct scans showed a spot on his left lung...we found that out yesterday from the chemo dr. Whom was much more forthcoming and helpful and seemed to really care.

I am so very happy to have stumbled across this site. Hope to learn lots during this time. We have 3 children 2 daughters 15 and 12 and a 10 yr old son whom is high functioning aspergers...a form of autism. Very high on the spectrum but there non the less. He is most stressed out from all this and so I have him to contend to as well.

Did anyone here do 2nd opinions? We are considering looking into a cancer center 2hrs from here which our naturopath referred us to. He said where my husband got the best surgeon he could have gotten the cancer center here leaves something to be desired.

I am trying to read thru some of the stories here but so hard to soak it all in yet and we have many questions from long term side affects from treatment and short term? Where the dr.s have said I think it would help more to hear from other patients. I mean he just a couple days turned 51 so he is looking at quantity vs quality. Is there anyone here that regrets having gone thru treatments...did the end results out weight the cons?? I realize this is going to be different for everyone just looking for feedback. I am so scared and have tried so to stay positive but with every knock down block wall we hit the harder that gets. Trying to take care of the kids, dogs, horses him etc it is starting to weigh on me and I do talk to friends and such and it helps but I know they don't fully know what we are going thru. I know from being on their side of yes I felt bad for those that discovered they had cancer but now that we are going thru it...the feelings are much different now being here face to face. The commercials on tv, certain songs etc hit very different emotions now than ever before.

Anyhow any input you may be able to offer it would be much appreciated.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

but very doable.......first breathe and then get both of your heads together and know that it will be a battle won but a battle nonetheless. Take the small victories and don't expect anything major along the way. the win comes in small doses and the defeats seem large but keep pushing onward to the end where its finally a thing of the past like a bad dream, and some day thats all it will be ...know that for approx one full year it will be an emotional rollercoaster but also know that you advocate treatment for yourself. They work for you. As you grow in the knowledge of this journey you will learn what is good for you and him and what isn't. It will make you both very much closer to each other and also you will see everything in a complete different perspective...This is very doable and it will be a marathon, but it will be over before you both know it.....and 2nd, even 3rd opinion are great until you feel you have people on your medical team that care about you and your return to normalcy as much as possible...It will be a life changing journey, you can make it one that will bring the family closer together and get the full appreciation of what life really means......You have lost all control of what this disease will do and what you can do about it. Let the medical team take care of the medical side and you and hubby work on the mental side. The mental side needs more coaching than the physical side. Just keep remembering that it will end and life will be ever changed ....Mine changed the way that I look at everything and I am better focused now on what is and was really important in my life.....Love to you both and keep the questions coming.....you'll be fine...both of you...........Buzz

AnneCan
Posts: 3692
Joined: Oct 2009

Hi there,

I am glad you found this site. I hope you will find it useful; I know I have. You have a lot to deal with + this journey can seem overwelming at times. Each person's journey is a little different. Second opinions are a good idea, particularly if you are not happy with any of your team. I wish you and your husband all the best.

Ramphog
Posts: 7
Joined: Jun 2010

As you can see by my post count I am new here also..... just finished radiation.... 5 weeks... every day.......

I had a good team so that made it a little better..

I would be in for a 2nd opinion if you werent happy with the first... no one says you have to settle on the first doc that walks up to you......

If I can help with any radiation questions... please let me know....... Just finished two weeks ago......

Hope he gets to some solid place and feels better.......

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, welcome to the board. I'm so sorry about your husband's diagnosis, but you have come to a place where you'll definitely get some help. It's so confusing right now, I know, but things will get better.

*hugs*

Gail

theresa8's picture
theresa8
Posts: 61
Joined: Dec 2009

My husband was also diagnosed with rectal cancer T3N0M0 at 12 cm from the anal verge.
His treatment was not at all like your husband's since he did radiation and chemo prior to his surgery which entirely eliminated his tumor. His doctors also thought it was safer to do a temp ileostomy to give his colon a rest. He's presently halfway into his chemo and besides a bad infection that he had to deal with post surgery everything went not too bad. 5 months after surgery he's leading an active life, working, golfing, cycling and enjoying quality time with family and friends. My best advice: find the best medical team and the best regimen to treat his specific cancer (lung spot, should be followed closely). Then the psychological aspect is very important, be positive and seek answers to any questions you might have. If your outlook on things is good, he'll feel it also. If you have any specific question or worries come to this board and someone will help you out, it'll probably be better advice than your friends' or neigbors' since all the people on this board have been there and are of great help for a worried soul.
Take care
Theresa

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

Thank you to everyone for the support. Today not really much and they aren't hearing much activity going on in his belly so they are concerned about that. As well as looking a little gray in color. If nothing happens tonight they are doing scans in the a.m. He did take a walk tonight in hopes that would get something moving. Not as much as a gurgle:( I crashed earlier so didn't get much reading done here so going to try and get some done tonight. I told him when he woke a bit earlier that I know he isn't much for computers but really felt it would do him good to come and read from other patients going or have gone thru the exact same thing.

He always teased the kids before this that he was living to 100 just to annoy them longer. His first word after surgery was 100 so I know he is determined. I am generally upbeat and a firm believer everything happens for a reason but will admit even this is giving me a run for my money for positive thinking. Doesn't help any out of the last 23days 18 of them have been measurable rain!

Currently he is resting I went home and got our son. He seems better the closer to dad he is. He acts out more since this all began when away and not able to see what all is going on. Anyhow many thanks to everyone and I am sure we will be back with tons of questions.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

and sorry you had to find us and glad you did. I don't have much to add to the comments, Buzz sums it up pretty darn well as usual. Love the horse. We have three, Thoroughbred in my picture and two Morgans.

all the best, Leslie

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

Thanks and I found myself letting out a sigh of relief upon finding as I started reading around. We use to have more horses but 10 yrs ago after a 3rd child moved on to a new line of work and goals only to start turning back to horses and the more simple things in life. Learning and realizing money isn't everything...even more so now. We JUST picked her up just prior to all this going on now. Lady is a Quarter Horse but has a lot of thoroughbred in her and plan to breed some back in. So when the time is right we will be looking for a stud...of course currently back burner. My husband has been over 25 yrs in the horse business of one sort or another and has hated every minute being a wrecker driver.

Horses really are a healer for the soul just as our dogs are. I hope my husband has the strength soon to be able to go spend time with her. He has seen her twice since she arrived. I think as he gets his strength and some kind of energy back she will be good healing for my husband.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

When I was in active treatment or healing for surgeries, sometimes I would ask my husband do bring Sterling (he's now 22), or one of the Morgans, Sailor or Safi, to right to outside the bedroom window so I could feel his warmth and smell his breath. Our border collie is a constant source of comfort and joy. She adjusts her active play chasing her favorite toy, a plastic tub, on the bed when I could not get up much. Now it's the nightly ritual. Yes animals get us out of our thoughts and into our bodies. I'm so pleased that you have them in your lives.

Leslie

PS I'm also an equine massage therapist

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Renee, happy you found this safe place, but sorry you needed to.You will find that when you find docs you like, you will be able to trust a little more and your confidence will grow. Talk to your onc if you like him and let him guide you a bit. You are in our thoughts and prayers. Jean

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Renee (I assume),

So sorry about your husband. Cancer is life changing but totally curable. And this board is a great place to find strength, comfort among friends, and lots of knowledge. Sounds like you have extra challenges as do so many on this board. The first months after a cancer diagnosis are a whirlwind of emotions and a very high learning curve. So the most important thing you can do is help your husband assemble the best team possible. I don't know where you live, but I highly recommend one of the NIH designated comprehensive cancer centers. My husband who is stage four colon cancer gets his treatment at M D Anderson in Houston. We almost waited too long to make the decision to come here. But whatever you do,get a true team that works together to cure your husband. It really does take all of them working together.

Best of luck to you and your husband. My husband was 59 at diagnosis but this disease affects all ages. I hope your husband gets better really soon.

Hugs and Healing,
Priscilla

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