Feeling Isolatated & Misunderstood

Sonnypisano

Hey everyone. This is my first post to the discussion board but have been reading posts since my wife was diagnosed in October 2016. 

My 26 year old wife and I (31) got married in September 2016 and about 4 weeks after our marriage she was diagnosed with stage 4 colon cancer that had spread to the liver. About a month before the wedding, we took her to the hospital as she said she just felt so weak. The doctor diagnosed her with anemia and gave her 2 pints of blood and sent us home. Outside of that there was no signs while we dated. She would have stomach pains from eating too much or from drinking alcohol but not to the point to where she felt she needed to go to the hospital. I think that is why this has also been so hard. Immediately after her diagnosis she went right in for her colon surgery as she had about a 95% block after recovery she went in for her liver surgery removing 75% of her liver. She recovered well from both surgeries so well it seemed like this would be a breeze. Then she began her chemotherapy. They started her on folfox for about 4 months and she really didn't have too many side effects from the folfox. We went in for her first scan & we were blind sided when they found another tumor on her liver & possible developments on her lungs (too little to know if it was cancer) so they switched her to folfiri Chemotherapy. They told her she would probably lose her hair after the 2nd treatment & it would take a lot more energy out of her. She just finished her 6th treatment on folfiri and hasn't lost her hair but each treatment is wearing her down more and more but I’m so proud of her and how she has handled everything till this point. 

 Since the start of all this we have been blessed to have an amazing support system. Our families set up a chemo schedule where someone new would take my wife to treatment every other week. When I returned home from work I would be the care taker from home. I wanted to be at every chemo treatment but her mom wanted me to get a break so it didn't wear me down mentally and insisted I allow others to help. I‘m thankful she made sure that happen. I was at my wife’s side every moment throughout any surgery, scan, hospital stay, or if she was feeling sick at home, doing all I can to try and make sure she felt safe, and making sure she knew things were going to be alright eventually. Since my wife's setback from her first scan in May, our marriage and relationship has taken a significant downward swing. We weren’t communicating about our feelings and it built some tension and we started arguing the last 2 months. She started saying she doesn't love me & that she didn't enjoy me being around as much as she used to. I retaliated and got angry because I felt blocked out by her and could feel her love fading.

We both realized that we needed to start going to marriage counseling to help us cope with beginning a marriage with cancer.  I think one of the hardest things about getting this type of news so early on is our life and plans in life just came to a crashing halt. Having the uncertainty of being able to have kids down the line is killing us both. I feel like those type of feelings throughout this could've been talked about more but I didn't want to burden her with my feelings since I knew she already had enough on her mind. We agreed to set up appointments to the following week. As that was the earliest that specific counselor could schedule us. (I really wish someone would’ve made more of a point for us to go from the beginning but we can’t fix the past we can only prevent it from it continuing to happen.) If someone is reading this that is beginning their fight, I highly suggest seeking help it's way too much to handle on your own.

We have had a very busy summer friends weddings, out of town bachelorette & bachelor parties. Maybe that busy schedule didn’t allow for us to find time to appreciate each other 1 on 1. Who knows? I do know neither of us gave enough of an effort to do so. This past weekend, I went out of town for a good friend's bachelor party. My wife and I both knew things have been tougher recently than normal, and thought the few days away could help us miss each other and begin to find our genuine love again.  When I got home I found my wife had packed up everything of hers and left me. Since leaving, she has been saying she doesn’t want to see me again or can't see me till her next scan August 15th. The contact we have been having has also been very minimal as it feels like I'm talking to a wall or trying to pry her love for me out of her.  Going through all of this is absolutely killing me not being able to be there for her.

My wife was able to schedule her appointment with the counselor before I left and had a 2nd visit scheduled on the Monday I returned from the bachelor party. On Monday, my wife told the counselor we separated and said that counselor told her she can no longer see me the following week since we are seperated. (Sounds unusual to me) Fortnately, I was able to find a different counselor to see me this week to help with my sanity. I’m excited to start facing the problems that turned me into someone she doesn’t want to be around. I feel it's going to be tough for us to work on our marriage through a different counselor. Maybe I'm wrong but it’s been tough to work on a marriage with cancer to say the least.  I have never thought about or needed to go to counseling in the past.  I have had a few good phone conversations with my wife this first week but she goes from wanting to eventually see me to saying she is too hurt and doesn’t want to see me for now.  The relationship we had the last 2 months isn’t how our relationship started. I pray she understands that and one day and allows me back into her life. Before cancer, we had a great relationship, I wouldn’t say it was perfect but what relationship is? With all things considered going on in our life, I can honestly say we had a very solid relationship.  I know she still loves me, she tells me she does and I know she is nervous about what her next scan next month will entail. I’m nervous as well. She started saying the cancer is only her journey now and being a caregiver isn’t anything like having the cancer (I realize that and am not going to argue with her about it) but I feel like she doesn’t understand the cancer has taking a mental toll on me as well. Holding all that in and rarely having someone ask you ”Sonny how are you doing through this?“ puts a weight on you that is completely unexplainable. You’re left trapped and completely misunderstood. Cancer doesn’t just effect the patient it effects everyone involved. We both knew holding in these emotions & feelings was the cause of our arguments and we had a plan in place to begin fixing it together but things fell apart just before it allowed us to fix it.

The mood & behavior swings are completely out of our norm. I dont want to stress her out but I also want to be there for my wife knowing this is a tough time for her. This past week was a chemo week and seeing how much the folfiri chemo has been taking a toll on her more and more each week, being away is absolutely killing me. Having to be on the outside of all this sounds like an impossible task especially not knowing if and when she will allow me back in her life. I am having a hard time now I can’t even imagine a full month of not being able to support her. Her grandpa was diagnosed with leukemia a week after her and he passed away last Friday. Part of me believes losing him to cancer is bothering her more than she is making us believe. Writing this is so hard because she doesn't share how she is feeling mentally. She only shares her physical feelings. 

 This has been the hardest way to start a marriage and I understand I was at fault for holding in my emotions earlier on but I didn’t want to burden my wife. I wanted her to focus all her energy on recovery while I supported her and provided for our family. All I wanted in return was my healthy wife back. I feel so lost now and almost feel like my wife is diverting her anger of having cancer on me because as it‘s easier for her to be angry at me and get rid of me because we can't do anything about the cancer at this very moment. In the end, I just want my wife back  or at least given a fair chance to show my wife I’m not the person cancer turned me into. I’m not looking to point fingers because im already pointing my finger at myself. As a care taker and husband I should’ve got us into counseling much sooner. Having another appointment my wife needed to go to just seemed like too much. At the end of the day there is no manual handed to us care takers when we leave the hospital. If fighting for my wife is wrong, I don’t want to be right. I just love her so much. 

 

I appreciate anyone who took the time to read this and for advice from anyone who has gone through something like this.

 

Sonny

Noellesmom

First of all

You are right: this is a terrible way to start a marriage. Please continue seeing your counselor.

Your wife is very young (as are you) or she would know how awful this is for the caregivers.

Again, I'm sorry y'all are going through this. Be gentle with each other. Lifting prayers.

Sonnypisano

You're right. I plan to

You're right. I plan to continue to see my counselor even after 1 meeting I already feel better expressing my feelings and thoughts.  All I can do is be understanding for her. If my role as a husband is to be outside support for now I need to honor her requests. Her health is #1 priority right now. I believe working on a marriage together and her health is just do much her right now Which is understandable. If there is a will there is a way and God will bring us back together with time.  Thank you for your response. 

Bloemrag

SPOUSE SUPPORT

Sonny, my husband was diagnosed about a year ago, with stage 4 colon cancer. No medical aid so we had been in/out of state hospitals for bout 6 months before we got the news.

They gave him 6 months to live, he is one on the most stubborn people I know, and some days I feel like I am going to kill him before the cancer does.

By reading your post it sounds like a familiar story, I told my husband remember our vows? “for sickness and in health”; “for better or worse” 

I agree with you that Cancer affects all involved and sometimes people just think of the patient and not the spouse. 

I am not in your shoes but in similar circumstances, there are 3 rules I live by: 

1-      Pray for strength

2-      Take one day at a time

3-      Find every bit of happiness I can squeeze into one day with my husband 

3 very simple personal rules, 2 are extremely difficult to do.

Strength and prayers to you both

sondrahays

I can relate

My husband was diagnoised with stage 4 lung cancer, the same day he had his biopsy to conifrm we got married. we went to the court house at 9am got married and he was having a biopsy by noon the same day. there was no time for a wedding, or honeymoon. but we had talked about getting married before he got sick and decided to after he was told he may have cancer. it is a very scary thing for both the patient and the care giver, but in two totally different ways. My husband is bitter, he is upset, angry and very emotional. we argue also, because of his stubborness and not wanting to seek out and talk to someone. I found this to be my outlet. reading and writing about my own story. at the end of the day, we can offer as much love and support as possible. but we also have to find time to take care of us. hang in there, you are right there is no book on what is wrong and what is right. you are doing everything you can to show her the love and that is what is most important at the moment.

Sonnypisano

Bloemrag said:

SPOUSE SUPPORT

Sonny, my husband was diagnosed about a year ago, with stage 4 colon cancer. No medical aid so we had been in/out of state hospitals for bout 6 months before we got the news.

They gave him 6 months to live, he is one on the most stubborn people I know, and some days I feel like I am going to kill him before the cancer does.

By reading your post it sounds like a familiar story, I told my husband remember our vows? “for sickness and in health”; “for better or worse” 

I agree with you that Cancer affects all involved and sometimes people just think of the patient and not the spouse. 

I am not in your shoes but in similar circumstances, there are 3 rules I live by: 

1-      Pray for strength

2-      Take one day at a time

3-      Find every bit of happiness I can squeeze into one day with my husband 

3 very simple personal rules, 2 are extremely difficult to do.

Strength and prayers to you both

Thank you for taking the time

Thank you for taking the time to respond. Im  sorry to hear what you and your husband are going through. Prayers to you both