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radiation almost killed me

carrieh
Posts: 114
Joined: May 2012

Radiation obliterated my small intestine...spent 5 months in the hospital..7 surgeries..at Christmas I was put ob hospice..told I had 2-5 days to live. The doctors informed me that a smaller/(very thin) person has a much higher chance of this happening. I certainly would have appreciated the info before the damage was done...thanks doc...as a result of having most of my colon and small intestine removed I live with constant pain..severe dehydration issues..and am unable to absorb vital nutrients..ivs 3 days a week at the hospital..8 hours per day..5 months later and am just able to walk again...away from children was the hardest thing.

 

This was not from cancer..it was the treatment..my surgeon was utterly shocked that I didn't die..im not recommending that someone skip radiation as everyone s reaction is different..just that if you are a small person to be careful!! It's pretty scary to wake up from surgery and be told you are as good as dead within the week.

Peace be with you all

Trubrit's picture
Trubrit
Posts: 1415
Joined: Jan 2013

B the cancer, I worked for a pediatric doctor. 

When we girls were grumbling about our weight, he told us that all women should carry extra weight, up to ten to fifteen pounds, because we could run into problems with severe weight loss if we developed a severe illness. 

I am very glad for his advice. 

I'm sorry for your suffering. 

 

 

thxmiker's picture
thxmiker
Posts: 1214
Joined: Oct 2010

We are sending our thoughts and prayers for the strength to keep fighting!   I was told from MD anderson that I was screwed. (Not my words but the lead surgeons.)  My wife looked at me and I told her I was long from giving up. 

 

We went to USC and was given a new lease on life. I have a surgery scheduled with UCSD at the end of June.

 

It may be time to seek another oppinion! (Just saying.) 

 

Best Always,  mike

PS  Keep letting us know how you are doing!

 

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

Sorry for what you went through. It sounds to me that whoever was administering the radiation did not seem to know what they were doing. It may have been too much and not targeted. Having your surgeon be shocked he didn't kill you is not a good thing to say the least!

For every good story there is a horror story. I've always believed that as patients we need to find the best possible group of doctors that we can, and also to ask plenty of questions. If they don't want to answer or give you a hard time, maybe they aren't for you. It's certainly not an easy task by any means and sometimes it's just luck - good luck or bad luck.

I recently did radiation and only had mild heartburn as a result. Everyone's situation and story is different but I often hear of botched operations. Deciding what to do pre-surgery is just as important as deciding what to do post-surgery.

That must have been a frightening awakening!

Sundanceh's picture
Sundanceh
Posts: 4281
Joined: Jun 2009

Radiation took its toll on me as well, though not to the same degree.  I've got hip and back problems from the external radiation.....and I took a hit in my lung when I did 30tx of that. Lots of associated breathing problems and internal lung pain from both lung surgeries and rad treatments.....compromised to say the least.

And I developed avascular necrosis in the hips (joint death due to insufficient blood flow) years after treatment ended (close to 9-years ago).....and the pain increases more each passing day.  Hip replacements are the prescribed solution as there is no other recourse one can take to alleviate the symptoms according to all the medical literature I've perused.

And yes, being thin does not help with radiation or with chemo treatments....for the reason that I think Brit stated.....it's good to have reserves available for nutrition if you get to points where you can't input on your own. 

And I've read of other women who've had radiation done to them (thin women by their own account) and due to their thinness, the radiation penetrated through and damaged things on the inside.

I agree with you about radiation.....the part that is most overlooked are the potential side effects and most are never really mentioned....not the ones that matter anyway.

I'm not sure what we would all do...but to at least have a laundry list of possibilities would help make the decision easier.

But, then again, we are fighting for our lives....we aren't armed with the knowledge we need....and even if we did know, would we not have gone with it anyway?

Your story is heartbreaking...I'm so sorry about all that you are having to go through....it just doesn't seem right....and I know you feel cheated.....and your feelings are right on.

Radiation damage is permanent of course, but I've found that time can ease things somewhat - at least, make them somewhat manageable on a day to day basis. 

Radiation did things to me for a couple of years after my first go with it.....and then a couple of years later, there was some internal body healing and rebuilding that came into play, so TIME is the only real healer that we've got.

And I hope that Time will help your body to continue to bounce back as much as it will allow itself - and that can pick up some of the pieces.

Thanks so much for your story.....alot of stories get glossed over, but I sure appreciate you bringing your experience with radiation to this post.  It's important to hear all sides of the story.

I'm glad you are still here - that was some kind of ordeal that you overcame......congrats to you!

 

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