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I don't know what to hope for any more

now_what
Posts: 3
Joined: Sep 2012

My mom was diagnosed with Stage IV colorectal cancer two years and a few months ago. At diagnosis, she was expected to live a few weeks. Somehow she has managed to fight through and make it this far and has completely shocked everyone.

Back when she was diagnosed, we were all devastated. Mom was always so healthy. She ate right, took care of herself, did everything RIGHT. How could this happen? And she was so young (only 54 at diagnosis).

So we rallied around her and prayed for a miracle, and over the past two years, I have come to realize that our miracle is the gift of time with her. There won't be a cure. There won't be remission. We won't have any more time with her where this isn't part of her daily struggle. I think she accepts that at this point, and I think I've come to accept it for the most part too even though I hate it.

I feel so guilty that this isn't enough. I mean she has fought so hard for this, and we have been truly blessed with two years that we "shouldn't" have had with her to deal with the whole process, the eventual loss, to just spend time, make memories and be with her. Yet, I can't help but just be so damn mad...IT'S NOT FAIR!

I want my mom back. She has gone from the independent woman who can do anything on her own to a woman whose life revolves around chemo appointments, remembering to change pain patches, fighting with the insurance company, bouncing in and out of the hospital and just being sick all the time. She can't drive. If she does go out, she can't stay out long b/c the heat, the cold, the exertion kills her. I cannot stand seeing her in so much pain all the time. She is so weak and frail nowadays, but she keeps trucking along.

Very selfishly, I want my life back. I live about 12hrs away with two small children of my own, and we make frequent trips out to stay with her for weeks at a time. I cherish that time that my kids and I get to spend with her...every day of it, but it is our whole life. Our plans for more kids are on hold because I don't feel like I can be tied down and unable to go to her if she needs me, and I'm not getting any younger either.

In the last 6mos or so, I've finally reached a point that I'm not sure what to hope for any more. Early on, I was praying for the miracle cure, but that isn't going to happen. Then I was praying for more time, and we've had that, which has been wonderful. Now though, the uncertainty of each day and the agony of watching her cope with everything has me to the point that I almost want it to be over...for her, for everyone. I feel so terrible for feeling that way after all she has been through and how hard she has fought to stay alive this long.

Is it normal to reach this point? I feel so guilty, and I don't feel like this is something that I could ever say to anyone in "real life." It doesn't help that we're reaching the point of going off chemo again, which means that her tumors will explode again, and she's facing another possible hospitalization for a horrible reaction to her chemo drug, which is the only one that has ever actually made the tumors smaller (as opposed to slowing their growth slightly). Her hospital stays are usually anywhere from a couple of weeks to 30+ days.

grandmafay's picture
grandmafay
Posts: 1617
Joined: Aug 2009

You're right; it's not fair. When my sons were at the age when they often told me something wasn't fair, I often told them, "Life's not fair." Little did I know then how unfair it can be. My husband fought stage 4 colon cancer for 6 years before losing his life. He made the decision early on that he was going to buy as much time as possible. That required a lot on both our parts. Your feelings sound very normal to me. Yes, the feelings of guilt are also pretty common. It's a wasted emotion, but it can really do a number on us. I cherished the extra time we had, but I also hated seeing him struggle. We hurt when those we love hurt. it sounds like you are doing the best you possibly can. We do have a tendency to put our lives on hold when we are going through this time. It also serves to remind us that our days are not infinite. Make the best of the time you have. Take care of yourself, too. Fay

ketziah35
Posts: 1151
Joined: Jun 2010

Wow how our lives parallel. I have a lot of your feelings too with wanting mymother back and angry becaise I feel trapped by her health. My mom is in remission, but the side effects of chem$o have eft her more dependant. I too am about 11 hours away from my family and have to fly to chexk on my parents every 3 months. Before my mom's illness, I was saving to go to Greece. I feel so sad angry and trapped. My ife is not my own. Then I feel guilty for having these thoughts. If she hasn't already, I hope grandma faye responds to your post. She and noellw alawys know the right thing to say about these matters.

now_what
Posts: 3
Joined: Sep 2012

Thank you both for replying. It really does help in some sort of odd way to know that these feelings are normal (or at least shared by someone else out there). It's hard to talk to anyone about this stuff when you feel so guilty about your feelings because some of them feel/are so selfish, and it's even harder when it feels like no one really understands anyway because they haven't been there (and hopefully never will have to go there).

For now, we've dodged another hospital stay too, which helps with morale a bit too. I hate, hate, hate to see her in so much pain all the time. She really is my hero, and I know I could never handle what she's going through the way she has. To be honest, I'm not sure that I would have fought this long, but I'm amazed at her strength and determination.

donnare
Posts: 266
Joined: Jun 2009

I have those feelings too ... my husband was diagnosed with Stage IV inoperable colon cancer with over 11 mets to his liver three years ago. He was 52 years old, was rarely ever sick, had a colonoscopy two years prior and they told him not to return for another 5 years. He was given 12-18 months initially, and May was 3 years - sometimes hard, but still some very good days also. He has been through the ringer with infections, a bowel obstruction, attempts at a liver resection, an attempt to remove the entire right side of his liver, chemo that stopped working, a recent failed clinicial trial that resulted in growth of the liver tumors and many mets now on both lungs. It is a rollercoaster ride from hell for sure.

Today he was supposed to start another clinical trial, and after they took his blood they discovered that his bilirubin levels are too high. They admitted him and are discussing putting a stent in his liver -- if possible -- tomorrow, so they can get the numbers to come down and he can possibly start the trial next Monday. If they cannot do this procedure I am not sure what will happen, and judging from the expressions on their faces, I don't think they know either. We have been told that without treatment his time will be very limited, and seeing how quickly the tumors grow and spread without chemo, I am very scared for him, for me, for our daughters.

I am sitting in his hospital room waiting for him to come back from ultrasound, and I am wondering what I should pray for. He hates being in the hospital and I hate leaving here without him. Do I keep praying for a miracle - didn't I get that just by him being here for over 3 years? The docs always say he already beat the odds. Am I just being selfish in wanting him to continue getting treatment that will definitely not cure him? Do I have to let go? When will my life ever be normal again -- what is normal -- how can I even drag myself out of bed without him? How do I go on if something happens to him? I have to for my daughters, but I don't want to. I have watched him lose/give up so much in terms of strength, stamina, his job, his hobbies, etc. -- all the things cancer takes away, and yet I can't stop hoping for a miracle for him, for us, our family, me.

It isn't fair for any of us, and today I am just so angry. Don't feel guilty about your feelings, I am sure we all have them from time to time. It is difficult, to put it mildly, to watch someone you love go through this and I guess wanting it to be over is probably a natural reaction.

Go easy on yourself and try to take good care of yourself too. You sound like a wonderful daughter and I will keep you and your whole family in my prayers.

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