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After Lobectomy Pain & The Word Incurable

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Hi,

I haven't posted in quite some time. I'm stage IV and about 6 weeks out of a lobectoby and wedge on left lung. In short, the tumor is gone along with most of my lung...but there were cancer cells millimeters from my aorta. Radiation can't be done safely and there's nothing left to cut out. I'm left with chemo and the word "incurable." 

 

I was wondering if anyone else has managed to be cancer-free or made it a few years after hearing this? My onc says to stay hopeful..chemo could buy me years...and hey? Maybe a new treatment would be available by then? I guess I just need some encouragement. It's our 3rd go-round in 4 years.

 

Also, the surgeon said it takes 6 weeks to feel back to normal after surgery. I'm feeling discouraged...still in an awful lot of pain, short of breath? Is this normal after 6 weeks? Im still taking oxy every 4-6 hours just to bear moving. I'm not a huge fan of extended opiate use after 5 months in the hospital on fentynal, morphine, Demerol and some wicked withdrawals upon release. Plus I'm just not hungry and need to fatten up a bit. Opiates are so not helpful. Any ideas or advice? Thanks to all. I sincerely appreciate any and all replies. Sorry if I sound like a Debbie Downer today...just bumming right now.  

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

My goodness! It has been a long time since you came on board. 

I am sorry to hear about your setbacks. Too much nasties going on with you. 

Surgery, and multiple surgeries take the stuffing out of you. Sure, being younger can help, but you're still going to feel it, and for quite a while. I can't help but think that having any kind of lung surgery is going to leave you breathless for some time. Don't push it! Don't overdo it! You deserve time, and with that time, you can beat this thing they call Cancer. 

You are not being a Debbie Downer. You have earned the right to have bad days, and that is one of the reasons we are here as a forum, to listen and understand. Not to judge, and to help in any way we can. 

Keep our page in your favourites. We are here for you. 

Actually, the forum has slowed down considerably in the last year. Not sure why, as there are still plenty of people newly diagnosed, and then theres us old folks who are walking the walk and trying to put space between us and the Cancer. 

Cyber hugs! 

SUE

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Oh, those are hard. Six weeks, my bum! I had mine in 2012 and it felt like an elephant was sitting on my chest for ages. Don't get discouraged...it is a very hard surgery to recover from. I still have a lot of pain in my back along the incision site along with numbness and "strange" sensations across the front of my ribcage. I don't take anything for the pain, but I used to wear pain patches just underneath the incision to take the edge off it. Now I'm just used to it. It's not as bad as the neuropathy pain, anyway.

As far as breathing goes, I don't have any problems with that. I get winded sometimes with exertion, but other than that it feels pretty normal.

Good luck with everything, and I hope you can get off those opiates. I don't know what state you're in, but if you're in one that has medical marijuana, I highly recommend it. It got me through some horribly rough times, and it will help with your apetite, too.

Hugs,

Krista

kmygil
Posts: 881
Joined: Feb 2007

Cut yourself some slack, Carrie.  You have undergone MAJOR surgery here, and one which cuts your oxygen intake substantially.  Until you get used to the "new normal" you're going to be tired simply from less oxygen.  As to the pain, I don't believe in it.  You can wean down once your pain levels subside.  Yes.  I know.  How do you know when your pain levels subside if you're addicted?  You do.  You just have to admit what is pain and what is craving.  And that is the point where you get your doctors on board for the weaning process.  Try to stay as active and mobile as possible without harming your surgical site(s.)  Eat a lot of tiny meals instead of trying to eat regular largish meals 3 times a day.  STAY HYDRATED!  Your nutrition, hydration, and mobility are so very much more important than you would imagine.  Finally, believe in yourself, listen to your body, and trust that you are going to be so much better soon.  Hugs.

Kirsten

nateswife's picture
nateswife
Posts: 65
Joined: Sep 2016

Hi, I'm sorry to hear that you have a diagnosis of "incurable". I do as well and it's quite a shock to hear. However, I'm encouraged by the examples of people on this board who live with cancer for a long time- or a lot longer than the amount of time that their doctors told them. 

A doctor told a friend of mine that when she has no appetite to eat the richest foods that she could find- ice cream, cake, candy bars, all that good junky stuff with lots of fat and calories. Now isn't the time to be concerned with nutrition. It's more important to put weight on and keep it on.

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