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Since cancer I have no voice.

supportingmylove
Posts: 1
Joined: Jan 2013

I have never been on a forum like this and do not know what to say. I came here to get advice and to see how other people are dealing with this disease that has turned our lives upside down. I am appalled at the defensiveness and selfishness that I saw and was brought to tears by the first few things that I read. I heard other people who have this disease say that if the people in their lives can’t be upbeat all the time and have a positive energy then they should go away. I have never been more outraged. My boyfriend and I met when we were 40 years old. It took me that long to find “my person” and I have never been more in love or happier. At age 44 he was diagnosed with colon cancer. I was there when “we” found out. Actually, I was there, he was coming out of anesthesia and did not understand what was going on. I was the one who had to tell him that he had cancer. It was heart breaking and scary for both of us. We held on to each other and went through the test to determine what stage he had and his prognosis. After a month of tests and Dr. appointments we were told that he had stage 4 colon cancer and it had metastasized to his liver. It was not what we wanted to hear, but we were determined to stay optimistic and positive about his recovery.  It has been a rollercoaster ride in the past 6 months but every day we are thankful for being each other’s person and for having each other to hold.  We have gone to every appointment, every test, every surgery, and every chemo treatment together.  I say “we “because he is not the only one who is dealing with this disease. I am the only one who has been there because his family lives out of state. I have had to take so much time off that my work has suffered. I have had to deal with the loss of intimacy and sex in order to take care of the man that I love. I have spent weeks in the hospital sometimes 20 hours a day in order to be there with him. I have never once waivered in my commitment to him and to our journey no matter what that may be. I have suffered from exhaustion and had to go to E.R. because of it. I have been put on medication because of the lack of sleep and depression at the thought of losing my love. I have psoriases and have outbreaks that take over my entire body. Since cancer came into “our” lives I have had no voice. I cannot have a bad day and ask for my person to hear about it. I cannot get sick and ask to be taken care of. I cannot break down in front of him when he has an allergic reaction to the chemo medicine and goes into anaphylactic shock in front of me because that would not be uplifting and happy for him. So now I go into the hospital corridors or my own shower to cry.  I am told constantly that I need to be a source of strength for him and never ask him for anything. I know that I cannot even begin to put myself in his shoes. I know that he wants to separate from me in order to keep me safe and he feels like he is alone in this. I want people to know that as caretakers we are just as affected by this disease. We have put our lives on hold because we want to be there for you. I did not sign up for cancer…It was not a choice, an obligation or a burden we do it because for us it is simple… We love you.

jen2012
Posts: 1245
Joined: Aug 2012

It is difficult and those on the outside just cant understand. People here can...so come here and vent away. My husband was diagnosed with stage 4 rectal cancer 5 months ago so i understand exactly what you are saying. He is 46...we've been married for almost 22 years and have a teen, a preteen and a toddler! I feel like im always taking care of someone else...well actually I AM always taking care of someone else! Sometimes I want to scream that I want someone to take care of me! Maybe bring me a cup of tea or something...anything! Couple of months after my husbands diagnosis, out son wad diagnosed with diabetes and one of my friends told me I was so strong. It kind of pissed me off...Im not strong...im a wreck but I wasnt given a choice in all this. All that said I dont always have my positive happy face on and have had breakdowns in front of my husband. Is your boyfriend telling you not to or is it other people?

Vee1
Posts: 59
Joined: Nov 2012

the life of a caregiver--especially your own story--is so honest and genuine.  I have read your post many times over and each time I come away with something more.

 

Cancer is an "equal opportunity disease."  It will take an entire family with it if allowed and I hate it for that reason.  Some caregivers (like yourself) have an extremely unfair burden.

 

I just hope and pray that you can somehow---someway---find a means to make sure you are alright.  I know it sounds trite, but I don't want cancer to take you both.

-Vee

Tishfish
Posts: 3
Joined: Mar 2013

I was with my boyfriend the day he found out about the first tumors. I have been with him every step of the way since, yet he doesn't seem to notice how it affects me. Sometimes he will say it's harder for me than it is for him, yet if complain "at least you don't have cancer". 

 

I feel like I do.  Like you said, it's a "we" thing and even though it may not affect my body, it does affect my spirit and my emotions and right now neither of them are in good shape. 

 

I'm glad to hear that so many others have been in our situation in that it lets me know I'm not alone.  At the same time it's heartbreaking to see how many have had to suffer through this. It's not fair to any of us...

dianelynn41's picture
dianelynn41
Posts: 71
Joined: Jan 2011

I can completely relate to what you are going through.  I married my Roby right before I turned 40, we would've been married 14 years this month.  I was with him when we found out he had cancer 12/1/2010, at the time stage 3, and was with him every step of the way for 2 years 2 months and 12 days.

If I had a bad day I tried to hide it, sometimes he could see it anyways and the last few months he felt guilty, thought he was the cause.  I told him he was never the cause but I was human and sometimes felt bad and frustrated about work or outside things going on but not him. I tried very hard to stay up and positive, i cried in the shower at work in the car.

Some things I did for him to keep his immune system up I did for myself and it helped.  We bought a juicer and used it everyday, I consulted a certified nutrionist and started Roby on supplements, his oncologist approved everything I gave him.  Said it helped his immune system so much, probably bought us at least 6 months, because he got healthy enough to do chemo.

But anyways I know what your going through, you gotta do what is best for both of you.

I wish you all the best and pray that the beat the beast called cancer.

Diane

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

I was touched by your story. It's clear that you're struggling and that your person's battle is yours as well. This is the sign of a really engaged caregiver, and I hope you know that no matter what he may say out loud, he knows that your presence is a blessing. I just urge you to find a way to take even 20 minutes a day to do something for yourself. It may be meditating, or writing in a journal, or taking a walk, or painting. Something that reminds you of life before cancer hit. I interviewed dozens of caregivers in writing a book, and their messages about taking care of themselves were nearly identical. The statistics show that caregiving can shorten  your own life by as much as 10 years if you don't find ways to take care of yourself. (Now I'm  making you mad, I'm sure!) It's hard to find / make the time to do so. But I urge you to think about things you  used to enjoy before cancer (BC) and to find ways to  do them again each day. One caregiver used to take a ride in his truck around a pond and watch the birds around sunrise. Another took up competitive biking--something he could do on his own. Another played drums and practiced with his band a couple of times a week. A fourth just took walks, either alone or with a friend. There's something about the freedom that's remembered through such activities, and the opportunity to remember that there's joy in life and that it's worth fighting for.  Also think about perhaps getting a massagem doing yoga or meditation, or joining a caregivers support group to help your own anxiety level.

Other caregivers' messages about being upbeat are really about finding ways to rediscover hope for your loved one. They certainly don't mean to offend you, but perhaps setting shorter term objectives that can give you the hope of accomplishment would help. One way to do this is to press your medical team for more active palliative care--anxiety relief for both of you, and pain and nausea relief for your person. You might also think about seeing an oncology social worker at your person's hospital. It can help just to have someone listening and letting you vent.

So I wish you the best and continued strength, and I hope you'll rediscover your voice.

Debbie

wolfen's picture
wolfen
Posts: 1197
Joined: Apr 2009

I agree that having a positive attitude and remaining upbeat as often as possible contribute to the healing of our patient and ourselves. However, IMHO anyone that can maintain this state of mind 24/7 either has a screw loose or is living on "happy pills". We are all bound to have a bad day, now and then, patients more than caregivers. It only makes it worse to hide your feelings. Too many hidden feelings will overwhelm a person causing illness or an explosion. I believe each of you should send out those positive vibes when you can, but understand that there may be times when they are not returned.

I have not lost my voice. I have lost myself. I no longer do any of the things I used to enjoy. In reality, I do not mind. For you see, I have lost my family. Many will tell you not to let cancer take over your life. In my life, cancer is all consumng. Our lives came to a screeching halt in 2008 when my beautiful daughter was diagnosed with Stage IV Colon Cancer. My every waking moment has been focused solely on my daughter's health until recently when my husband of 40+ years was diagnosed with Stage IV H&N Cancer and Lung Cancer. So CANCER is my life.

Like you, I did not sign up for it, nor did my daughter and husband, but our names were drawn, so we live day by day, adjusting as we can.

And do I have that positive, upbeat attitude all the time? You dam% well better believe I don't!

Luv,

Wolfen

 

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

After a hellish week I needed to read this.  i don't remember a day in the last 10 months that I didn't worry or have fun.  I miss having a life and laughing, but I think I will miss my husband more.  When we married "we became one" and that is how I operate.  I stay in the hospital when he is there, I quit my job so he didn't have to live in a long term care facility, I withdrew my retirement so I could pay the outrageous cobra so he could get the best care, but I would do it again.  I married an amazing man. He continues to have great strength through this battle. His faith has not waivered and I remain at his side.  This being said I was devastated to find out yesterday the cancer has moved to his brain and there will be no BMT and his time on earth is short. Platitudes have not helped me. 

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