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How to adapt to new lifestyle

MichelleChristine's picture
MichelleChristine
Posts: 6
Joined: Apr 2016

SOOO this is my first blog and I am really excited to have found this network. I am new so I am not sure how this really works but I want and I NEED to vent about my disease to people who have actually shared my experiences. Family and friends are AWESOME but there is something about sharing your feelings with people who have been there. I also am excited about sharing my support for you guys because I know how important support is for anyone going through this special type of HELL.

I have stage 4 NH Follicular Lymphoma. I am in remission and currently undergoing maintenance chemo, Rituxan, until December of this year. Although I am in remission and forever thankful for that, I live with the constant fear that my Cancer will come back and ruin my life all over again which I am still working on building back. I lost my job, gained weight, became deeply depressed, developed anxiety, and a whole lot of other problems over this journey. I constantly miss my pre-Cancer self. I am still tired, overweight, slighly depressed and anxious, and now working a new job that I loathe. On the bright side, my hair is growing more everyday, I am in remission, I have my social life back, and my mental health is improving everyday. I realize if you are still undergoing treatment how selfish and ungrateful this post may seem and if you feel that way, I am truly sorry. I am SO lucky to be in remission. I just miss my pre-cancer self and my pre-cancer life everyday. I need to accept my new way of life and learn to adapt. 

Can anyone relate or offer some advice?

po18guy's picture
po18guy
Posts: 1222
Joined: Nov 2011

Don't look back! What all of us 'were' is gone. In fact, I do not want to go back because eight years ago my future had more cancer in it than I could have imagined. But, to live in fear is to stop living. We know that we do not live forever. We know the end will come some day - but we just try to keep kicking that can down the road. Well, sometimes, that can rolls back to us. If we fear death, to some degree, we also fear life - and life is not intended to be a fearsome thing. We are intended to enjoy it, pass it on and not be totally derailed by its challenges.  

A person's worldview makes all of the difference in the world. Having beliefs about life and death are only human. Each and every society and culture that has ever existed has had them. What do you believe? We are in an age of confusion in which we have cast aside many 'old fashioned' beliefs and have embraced the new - except that the newproduces an awful lot of anxiety in a very anxious age. Double whammy.

I can speak only for myself, but I do not fear death. Death's power has diminished each time that I have had to face it down. The sad fact is that, as long as we are alive, our bodies produce cancer cells. Daily. Our immune systems kill them off, but occasionally, one is missed. That's all it takes. You made the conscious decision to face it and fight it once. You were the victor. Decide to be victorious again, should it ever cast its shadow over you.

As to anxiety: It cannot change the past or predict the future. It can only paralyze today - and that is all we possess. If anxiety is a continuing and powerful problem, I would advise you to get powerful help with it. Anxiety is not a positive. It is a negative and can produce symptoms that are interpreted as a relapse, which produces more anxiety. A vicious circle.

Keep your vigilance up on the anxiety front and monitor your health. Find out how others cope and examine their methods and beliefs. One will speak to you.    

Kaniksu
Posts: 54
Joined: Nov 2015

Your post hit close to home for me...as I was searching this morning for a resource to find a professional to speak to . What is the new normal for us after treatment? What changes do I need to make in my life? Should I retire? Will I totally regret it if I keep working and the cancer comes back...if I don't just keep living my life as normal will that mean the cancer won?...I guess getting this really does change us and somehow we are forced into making decisions about our lives we were not ready to make....Quality...Guess I better get the things done now I will wish I had....Hats off to us and the soul searching journey cancer sends us on.....As far as the weight thing I am right there with you..15 lbs Ineedto loose now, hair is growing back but I just decided I was gonna rock it bald...and it has been very liberating ..some good foundation, lip gloss and big earrings!

MichelleChristine's picture
MichelleChristine
Posts: 6
Joined: Apr 2016

big earrings and bald was my favorite look during cancer! You go girl =]

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

has a special spin to it. But at the same time there are a lot of unifying feelings and concerns.

Where you are, where you are going. What you have accomplished. What you seek. What is left undone

all enter into the equation. Some of this is age related. Some is not. How do you want to be remembered.

Is it important to you. These are just some of the issues that we all struggle with. No one knows how fast

the hands of the clock move in our pursuit of, call it meaning, reason to be, you name it.

re your pre-cancer self - it is gone. I think we go through the Kubler Ross stages of grief in saying goodbye

to our old self.

 

Steve.

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I think a lot depends on the circumstances and story of the individual. You look very young and have a lot of life in front of you. That can change a point of view. Also, you are a women; that plays in as well. I am a 50 year old man with strong faith in God. All my children are out of high school. That shapes my post-cancer mind. I started chemo 2 years ago May 1. I became NED in October 2014. Since then, I decided to move forward and not look back too often. Although, I take a glance back once in a while (when I go to my checkups or need to get back on track). Even though there is a possibility of the cancer returning, I continued to work because I need to support my wife and myself. I also, push myself to get in decent shape and eat well. Not easy...but super important!! That helps with a positive mind set as I feel good. That part wasn't easy and took about six months. I also try and plan something fun with friends and my wife every two weeks (hike, bike, fish). Something to look forward to. But my new goal is to try and help others. The church I attend assists the poor and infirm with yard work etc. That makes a person feel good. Before cancer, I wasn't happy for each birthday and and I was spending too much time competing in sporting activities. Now I truly celebrate each birthday and try as hard as I can to focus on others...super hard for me to do because I'm selfish. If I get cancer again, I will battle. But I'm really not afraid of dying or losing my hair again. I don't want to feel sick, but I can't do anything more than I am to keep from getting it again. Also, I believe a big part of having peace is my faith. But, that is my story. With that said, if you can't get out of depression on your own (exercise, healthy diet, regular sleep pattern etc.) don't hesitate to get professional help. You can do this!!!

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm sorry you're here but glad you found this forum.  Hugs.

I was diagnosis two years ago at the age of 48, follicular, stage four, grade two and a low burden of disease.  I had this for ten years before it decide to show its ugly face.  I have always lived a healthy lifestyle with food, gardening, exercise etc....   The time I was diagnosed, I was pretty fit.

My father was diagnosed three weeks after so I decided to keep my cancer under the radar and told only my husband and best friend who happens to be a hematologist oncologist.  Treatment wiped me out.   I had no energy to work out but I did try, only thing that seemed to help me were shakes and fresh juices.   Because of my fathers lymphoma, I had little time to concentrate on myself, I had to protect him and help him and of course my mother too.   Then I lost my dad.  My circumstances were mentally very difficult,  treatment robbed me of my energy but today I can tell you things are not perfect but I am totally happy, pretty healthy and quietly gaining ground  and you will too.  After treatment was over I did seek the help of a professional because I had/ have terrible shortness of breath etc.. and I wanted to do everything right.  I have two beautiful children and have be a good example for them.  Also I don't know why I was put on this path but I was determined to make God proud of me.  

Just my two cents.  

My counselor did tell me it's more difficult the year after when you have to cope with all that you have endured.

 I should also say I am a fierce warrior and a freaky positive person.  It maybe impossible not to look back from time to time but it does get easier to move forward.

Be good to yourself and don't feed the monster with stress.

All my best.

 

Sal0101's picture
Sal0101
Posts: 136
Joined: Sep 2015

Michelle,  I'm in remission after a DX of stage 4 DLBCL. My prognosis was not good in the beginning and it concerns me everyday that I might relapse. I have aches and pains i don't remember 10 months ago.  Its only been 8 weeks since I found out I was I'm remission, so in my mind it's just not long enough to relax.  I feel that my anxiety is higher now than when I was going through treatment.  Is it going to come back?  Will I have insurance?  Should I retire? Should I go part time?  If I go part time I'll lose my insurance, but I'll be covered under my husbands insurance.  How long will that last Considering he is planning on retiring soon.  We are both 58.

I have more friends Than I even realized.  They came out of the woodwork during my treatment, but have now retreated back to their lives.  life goes on. You are not alone.  This disease has definately changed all of us.  I try very hard to remind myself something that I read on here...worry can't  change the past and can't predict the future. Enjoy the moment!  I'm trying, but it's hard. ohh, by the way, my hair is also coming back... You're not alone...

hopeful lady
Posts: 36
Joined: Apr 2016

I definitely keep asking myself the same questions. It is not easy being faced with the idea of what our body will do next.

I do some of the same things I have always done but somehow it all feels surreal. I touch my children and grandchildren and wonder if it will be my last time doing so. Then I quickly remember that I am touching them and loving them and that is really all that counts. Some days are better than others. 

 

You will know what is right for yourself.....trust all your instincts.

And remember we are all here for you. Much love and prayers coming your way!

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I was diagnosed with stage 4 follicular non-hodgkins lymphoma Dec 2014. Six cycles of R-chop, still some cancer alive. Then 3 cycles of RICE and in Nov I was told I was in remission. The plan was to follow this with a stem cell transplant. That has been thwarted by my bone marrow. It has become "dysfuntional". My blood counts (red, white, hemoglobin) will start to rise and then drop. The Drs are trying to figure out what is the best to do with the least amount of risk to me. 

I have been fortunate to be able to work throughout my treatments. Has my life changed, absolutely.

My life changed when I went to college. Again when I graduated and got a job in my chosen field. Another change when I got married and later we bought a house. A big change when I had kids. In between these changes were others like loss of my dad, job changes, loss of loved aunts and & uncles. Another big changes as those kids grew up and moved out to start their OWN lives and then the loss of my mom at the same time our first grand cild was born. For each of these events I didn't turn into a different person just because aspects of my life had changed. Now cancer has changed my life again. It will not be the last change in my life. 

Our lives are full of changes. Cancer is just another one is how I look at it. 

 

hopeful lady
Posts: 36
Joined: Apr 2016

Such a great attitude.....you are so right...we are more than our cancer. We will have other obstacles to overcome because this is life. You guys give me lots of hope. Thank you for sharing your journey!

hopeful lady
Posts: 36
Joined: Apr 2016

So thankful you are in remission. I have only had one round of chemo. So far all is ok.

I understand what you mean about your "pre_cancer" self. There are days that I wish I could go back and claim that person! I already know that the person I am becoming with cancer is a much more thoughtful and caring personwho wakes up truly thankful for another day. I have to live one moment at the time. I have a tendency to over think and I have to work hard to focus on the moment.

My very best to you in your continued recovery. Though we did not ask for this disease we will do the very best we can to survive.

Keep us posted..... sounds like you are working at your new life and that is awesome. I am so happy to read about everyone's journey!  

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