One patient with glioblastoma still alive nine years later
by Tauna on Sun Jan 30, 2011 03:55 AM
Feeling very discouraged tonight. My husband diagnosed last April EC at base of esophagus, with nodes, not mets. He had Chemo/rad, surgery, more chemo. Last Chemo around Thanksgiving, then he got a blood clot in his next they took out port and we voted to not do last round due to hm so so so sick at Thanksgiving. He is still weak and fatigued and has days where he still tasted Cistplatin. He does not have his feeding tube anymore and it is a challenge to get his food and water in daily. You think I was going to torture him when I ask him what he would like to eat. He is going to work, but it is all he can do to get through the day, then comes home striaght to bed. He contiunes to have lots of nause with some vomiting. The Dr. wanted him off all of his pain med and Lorzepam, but sometimes that is the only way he can make it through the day. It is hard to keep him motivated and tell him he is doing good. His major surgery was July 29th. How long does it take to start to get any normalacy back. I'm starting to get discouraged. I feel sometimes I need encouragement. Any advice would be great.
by Broken on Sun Jan 30, 2011 07:09 AM
I know its hard to go through this most difficult struggle where we caregivers just barely hang on caring for our husbands during their fight to recover from cancer. But we do it some how.
I used to tell my son when he was young & he'd struggle with day-to-day things that Rome wasn't built in a day. Just remember, fighting Cancer is the same. It takes time & its toll on everyone but there is that light at the end of the tunnel. This site is a true testiment to those who beat this beast. Continue to post your frustrations here on this site - these posters are the most understanding people I know and maybe join a support group at the hospital or church. Just don't hold your frustrations in. I just don't think God intended for us wives to bear the full stress of this diease alone.
Okay, here's your words of encouragement! YOU CAN DO IT. Repeat after me: I CAN DO THIS. YES I REALLY CAN. Don't forget to get all your proper nursishment as well. You & your husband together will get through this one day, one minute at a time. Most importantly, don't get so caught up in all the grief and be sure to make the time to show your husband just how much you love him.
Now - the battle my late husband & I fought was totally different. I can attest to you that he & I fought his battle to the very end. In our case, only the Good Lord could help with it all. I really wished God would just give us one more chance to try to beat it. I know that this is just not possible though. So now I try to let others know here on this site that when you just feel that you have absolutely nothing else to give of your soul & self, reve up your engines, take a deep breath and once again, give it everything you possible have because there's only one chance at this. I now spend alot of time asking God to please give me the strength to accept the things in life that I cannot change.
Lots of hugs to you both & my heartfelt prayers are with you.
by luvliving on Sun Jan 30, 2011 12:05 PM
As one who has been there (stage 3 EC) two and a half yrs later my life is better than I would ever have thought including my doctors. It has been slow but steady. Take it one day at a time and life for you and your husband will get better. Have determination and stay focused. I rely on God to give me hope for the future. You can do it. God bless you and your husband.
by sdbatche1962 on Mon Jan 31, 2011 12:08 AM
Hi , It took me a long time to enjoy eating and to get my energy back up. It hasn't been that long for him. My daughter signed me up at a gym and I started going. Did very low impact stuff, But it got me on the way to regaining my strength. There are no magic cures for overcoming this treatment and surgery. It's one day at a time. I trusted God to help me through it all. I had pre op chemo and surgery in May'08. Like your husband I developed a blood clot two weeks into my post op chemo and the port had to be removed and chemo stopped. Today,scans show I'm cancer free! I now have a great appetite and eat almost anything. We all have to make adjustments in our eating after surgery, but I can manage it. My energy level is good and I am enjoying life to the fullest, But it was a terrible journey getting to here.
by rickjenn on Mon Jan 31, 2011 10:50 PM
Hi Tauna, This might not having anything to do with your situation, but since you mentioned that it was a challenge to get your husband to drink water, I am wondering if some of this is related to dehydration. I know for me, since surgery and chemo/radiation, it is extremely important that I stay well hydrated to feel well. Especially, right after radiation treatment when I was quite nauseated and couldn't drink much, I started going to the infusion center three times a week for a saline injection, which helped a lot. Even 2.5 years since surgery, if I don't drink enough, I start to feel less energetic and eating becomes more difficult. I still need to drink more now than I ever did before surgery. Good luck finding a solution. Rick
by paysongeorgi on Mon Jan 31, 2011 11:10 PM
I don't think that anyone of us sailed through recovery. Yeas it is harder on some than others, but never the less it is hard really really hard. I can think of many times that I wanted to give in, but so glad that I have stuck it out. Thats what it is all about. Just hangin there even when you feel like the EC is winning. Pretty soon things will start to get better. Little by little , Your and your husband will start to have a good life back. Not the same life, but a good one never the less. I am, 2 and one half years out. Still have that hope that I have beat this. Weight is coming back and life is good. I pray it will be good for your family too.
by cjmac49 on Tue Feb 01, 2011 12:50 AM
I think it took a year for me to feel better and another mile stone near 2 years.
It is a daily struggle and sometimes an antidepressant is necessary.
I was advised to take it one-day-at-a-time. A cliche to be sure but it worked.
I am 2 1/2 years out from surgery and still learning.
by doingfine on Wed Feb 02, 2011 07:45 PM
I agree with the others. I am a 7 year survivor this year. It took me a good 8 or 9 months after my surgery to feel good and I didn't need more chemo after the surgery. My surgery was in May of 2004 and in April of 2005 I was still having bouts of vomiting and dumping. BUT, the side effects got less and less the more time I got from the surgery. I also was skin and bones and thought I would never gain any weight.
Keep encouraged, it is a long slow process. I live a great life and after the first year, by that summer I was out mowing the lawn, taking a trip across country and painting the house on the second story.
I still have side effects, but they are easy to cope with and I am truly thankful for the life I have. Hats off to all the caregivers. My hubby still bears the scars of taking care of me for a very difficult 8 months, plus some. He still turns pale when I choke on something. Try to do something nice for yourself and remember you are going through a difficult trial also. Treat yourself each week to something special...
by pipernickel on Thu Feb 03, 2011 05:10 AM
It does take a while to get feeling better. Your husband will get better. Try to think on good things. I know it is hard, but you can do it. Just take one day at a time. I know that I've had my good days and bad days and it has been since Sept.2008 when I had my surgery. Wishing you all the best.
by robert450 on Fri Feb 04, 2011 10:07 AM
I had sugery and then 27 rounds of radiation, with 4 rounds of chemo f5u and cisplatin. I did not think i would ever feel right again. I thought my life was over. But here i am 2years later. There is light at the end of the tunnel. You and your husband have been thru a life changing experiance. He may never be the same as he was before. But he will get to feeling better. And start doing things that he used to do. I to went to work every day that i could and that was the best therepy for me. And with a supportive wife and faith in god, like many others i am making it thru. And so will ya'll
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