One patient with glioblastoma still alive nine years later
by paysongeorgi on Mon Jul 04, 2011 11:41 PM
A question to those that have had the EC surgery. How would you rate your quality of life since your surgery. It seems to me that everyone responds different and it does depend on certian factors, but in general?????????? Do you ever go back to almost normal? Even after 2.5 years I still do not feel well and I have more bad days than good. Yes, I should be glad to be alive, and I am sorry to complain, but I am so tired of feeling so weak and sick. I think, but am not sure that many of my problems maybe related to the fact that I am addicted to the oxycontin that the doctors are giving me. I want to get off, but with my heart, lungs and all so messed up...........well I think the withdrawls may kill me. Has anyone had any luck with this clinic in California that does Rapid detox.? I am scared to go through it but am desprate. I hope none of you stay on pain pills but for a very short period of time. They are hell on earth. georgi
by Dianewilson on Tue Jul 05, 2011 12:36 AM
I can speak to the question does things get better, YES!!! You have a ways to go yet. The old adage, time heals, is for us. I am 6 years out. Yes, my life is a little different but not a lot. I eat small meals, when we go out, I eat what will not be good warmed over and bring the rest home. I can't drink cold or hot liquids without hurting. I however can eat an ice cream cone. One dip, that came about in year 5. I think it is because we eat Ice Cream slow and warm it in our mouth. My energy started coming back about year 3. Up till then it was just do what was needed. So, YES, things will get better. Now the other question you have is about the oxycontin. GET OFF of it. But do it SLOW. Start with taking it about every 6 hours, (I had it every 4 to 6 hours as needed) then go to a 1/2 pill instead of a whole one. If you go off fast you will be really sick. I got off mine within a week or two of being home and they were the 3 worse days of the whole proceedure. Not because of pain but because I felt so bad. Again, you do need to get off of them but spread them out and do it slow. Talk to your doctor if you can, I can't believe he/she is still giving them to you 2.5 years out.
Good luck if I can help let me know. Diane
by paysongeorgi on Tue Jul 05, 2011 07:18 AM
Thanks for responding Diane. I left you a private message.
by donna70 on Tue Jul 05, 2011 01:46 PM
I think as you have said it is so different for so many people. I was petrified of being addicted to the oxy so I stayed on liquid form that I could titrate to smaller doses, like a half tspn. But after 7 months, I started feeling normal. I presume you had the Ivor Lewis like me. The rib pain and complications some get are bad. I have permanent lung damage. You mentioned you have lung and heart damage. So that changes. My lung on the side of the surgery is kind of solidified and I have asthma and Copd, but no oxygen. But my quality of life changed when I stopped all eating of food after 9 pm as I have mentioned on another post here. I was getting reflux that caused fluids to go into my lungs and really spent most of my time choking, coughing and vomiting but this all stopped once I stopped any food after 9 pm, I go to bed between 11-12 at nite. Now my only quality of life issue is shortness of breath. I do many things but can't dance or do extended physical activity but do many things just have to rest. I hope you get a better quality of life, I have heard of people who cannot eat right years after surgery and that does impede your life. Good luck,
by mccoy70 on Tue Jul 05, 2011 04:18 PM
by mapesuma on Tue Jul 05, 2011 04:33 PM
Yes, my quality of life is good, and still improving nearly 3 years out. You are right everyone is different, we all had different reaatments and different complecations and are different people. But in general - things get better. You are in a bad patch just now, you've had them before. One thing I can guarantee: bad patches are followed by good patches - and then you'll be back helping others to come to terms with what is happening to them and reassuring them.
Normal doesn't matter. What matters is that you come to terms with the way you are now and find a way of running your life so that you can enjoy it.
I do not have any personal experience with getting off painkillers. Before this op I didn't believe in taking them except in extreme circumstances. I was lectured before the op that I must take them and use them to stop the pain taking hold because it would need so much more to get if under control if I didn't. I did, but I was off them before I left the hospital. I was lucky though - I had the MIO which doesn't hurt so much as open surgery.
There must be help where you live to get off them safely and effectively. You must have expert advice. There are other problems you have so it is no good us just saying come off them. You come back to this issue often so it must be important to you. You can only effectively tackle one problem at a time. Decide which one comes first and concentrate on finding out how to sort it out. Don't give up until you have got it sorted. YOU CAN DO IT , GEORGI, I KNOW YOU CAN.
Have faith, one step at a time,
by tongrenhealer on Tue Jul 05, 2011 07:06 PM
Georgi...I don't think rapid detox is the way to go...especially not if you are concerned about your heart and lungs. Pat is fortunate that he never experienced much pain so pain meds have never been much of an issue. Even after short term use, we always saw there was some degree of withdrawal. Maybe if you could decrease the amount slowly like someone else suggested, but you also will have to find a way to address the pain if you still have it. Do you still reflux frequently, and is that related to your lung problems?
by doingfine on Wed Jul 06, 2011 09:58 PM
Hi, I can identify with Diane. I still eat my ice cream very slushy. It was several years before I could eat ice cream. Now I have it every day. Oh, and sweets...I couldn't eat them for a long time, but now I even eat cake. Once and a while I over due and pay a price, but life is good. Hmmmm! I am 7 years out from surgery. I have had a wonderful spring and summer. NO acid reflux at all since November and NO aspirating. The only thing I can attribute that to is that I am drinking a warm glass of ginger ale before bed. I read that ginger is a good stomach settler and good for acid reflux. Have stopped the yogurt so it must be the ginger. I also dropped down to 1/2 dosage of omeprazole. I now take only one 10 mg. pill int he morning and one at night.
Energy......was very fatigued, but I found when I push myself to walk and get going that is when my energy level goes up. Seems like the more I do the more I can do. Nov. Dec. Jan. are my worst months because we live in NYS and it is cold. The rest of the year I do fine.
Breathing....I also have asthma. I use Combivent as needed and Robitussen when I get real short of breath. Again, exercise seems to help me out here. My surgeon had a breathing team come in immediately after surgery and I had breathing therapy and went on the Combivent as a regular med at that time.
Those who came off the pain meds slowly should feel very fortunate. I was on morphine, fentinyl, oxycontin........went to the ER feeling really lousy and the ER doctor told me STOP everything right now and I mean everything. That was about 6 weeks after my surgery. Boy did I go through withdrawal. I wouldn't see anyone for 2 weeks. The first week my arms and legs had a mind of their own and I just could not control my body. BUT, I survived that too. I don't recommend coming off all at once because the withdrawal is pretty bad. Ask your doctor how fast to come down from those things. One thing I realized is that even the healthy people have normal things like flu, indigestion, aches and pains....not all of my problems are associated with the EC. Some of it is just plain every day viruses.
Keep encouraged...it will get better.
by Dianewilson on Thu Jul 07, 2011 03:49 AM
I eat 2 Tums at night, for Calcium, but I find they also help with the "acid". I eat Werther's candy's for the coughing. (Not to good for the weight.) For the dumping, I find that if I eat candy right after a big meal I can stay off the dumping. I also take a pill that works like yogurt to put back the good bacteria for the next day when I do dump. I agree that the energy goes up with the more I do. I am sooo sorry that they took you off the pain meds so fast. I remember coming off as the worse part of the ordeal. I agree that once you have something as terrible as we have it is hard to not think every small rash, itch, flue, cough, ..... is related but normally it is not. Thanks for writing makes me think that I can still get better yet. I had thought I was there. :-)
by andy2009 on Fri Jul 08, 2011 01:11 PM
Hi georgi and all, i hope everyone had a great 4th of july celebration. yesterday 7/7/2011 marked my 2 year anniversary post surgery. the only medication i am on now is 2 prilosec each day. otherwise i would say that i am 98% back to normal. eat normally and slightly smaller portion size. one good thing is that i seem to enjoy eating a lot more than before and i chew my food well. my wieght has stabilised about 22 lbs below my high and don't appear to want to go any higher. i also do not have any problems with alcohol and drink them normally. exercise wise i mountain bike 3 times a week and hike regularly. i am thankful and very lucky to be in this condition only 2 years most surgery. georgi - i hope you find a solution to your addiction to oxy and i am sorry i do not have any good advise on how to approach it.
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