The Colon Club

I was diagnosed stage 4 at 36 married with 3 kids. I took this on like a champ and completed multiple major and minor surgeries and 2 separate rounds of chemo before and between surgeries, which knocked me down and I still mentally stayed strong for everyone. Had a huge scare with 2 blood infections one being sepsis and and the other a port infection, just weeks after my full APR. I now have a permanent colostomy which I still have not accepted and I just deal with and hate every single day! My problem here is I have my one year scan this Wednesday and in my head I already have it again! I just want to know if others have these thoughts and how they live with them?. I feel like I’m living in a different world then others, completely! I am rushing through every day like I have to get 9 things done in one day. I feel like I’m living dog years and I can’t slow down and accept it. I just have so much shit I want to do before I go and just sitting here not rushing to anything is so wasteful of time! People are living like they have so many days and seasons and years left like it’s ok to sit around for a week and it’s ok to relax on the couch? I am pushing so many people away from me right now and I need help on how to slow down and cope! I am a pretty manly man and this is just huge for me to open up but I’m afraid I’m going to lose everyone before I’m gone. I also just get so upset and angry so easily when people say anything to me or do anything to ruin my good day here. I snap and hold grudges like I’m not going to get that day back.... I feel like why are we wasting these days when we should be happy. Thanks so much.

Hi Paul

I too went through the relentless 'scanxiety' through my journey also. I remember seeing this quote on another members signature back when I first joined in 2014. I read it every single day.

"Live your life like it's going to be a long one, because it just might, and then you'll be glad you did."

One day at a time.

Chin up

MM

If you are like me, cancer is the scariest thing I have ever dealt with. I would say it is ok if you do not handle it as gracefully as you would like. I catch myself being short with people at times. I try to focus on hugging them and letting them know that I love them more often. The bag sucks and I wish I did not have to deal with it so you are not alone there. I had a couple of mishaps with it over the past month...I was in the parking lot, walking towards the grocery store when the latch gave way and the bottom fell out of the bag. The front of my pants and shoes were covered. I called my wife and had her give my 12 y/o son a chore so I could get into the house without him seeing me. The second mishap happened when the side of the bag came undone while I was sleeping. It feels incredibly embarrassing to feel like you have gone from a manly man to someone that needs help and care. I deal with anger and sadness as well. I look at my wife and think about the plans we have and I can barely look at my kid without wanting to break down. My point is, you are not alone.

Hi Paul,
I am stage 4 with 2 kids. Luckily 1 in college and 1 still at home in high school. I think we “stage 4” live in a different world. Honestly even local stage 3, can’t get it. Nobody can unless you are in our “stage 4 club”. All your feelings are valid. Please don’t feel guilty over your feelings. I try to only focus on 1 day. I purposely block the future. It works, I just had to work on it. Try to enjoy your good days. And don’t worry about others. Sending love! Funny fact: going skiing on chemo. I think my onco is going to have a heart attack from me.

Hey Paul,

I hear you. It's been 4 years for me since diagnosis and I've gone through many ups and downs with my own frame of mind. There are times I've not been the best dad to my kids, losing patience or feeling tired and not maximizing my time with them. It always makes me feel terrible...I find if I force myself to focus on what has been good I feel better. None of us are perfect cancer patients, everyone fails to be their best some of the time, but that's ok. There have been great times and there will be at least a few more before I go.

I just had a scan myself. I don't know the results but this is probably the least hopeful I have felt in a long time....But since then I coached a couple fun soccer practices and we all laughed our heads off at Kindergarten Cop for family movie night (classic)!

Probably does not help but you are not alone.
Cheers
AT

Thanks to everyone who responded as I don’t feel alone anymore at all and I felt like I was the only one living in my world when everyone else is living in the one that lasts indefinitely and that’s hard. People think about the future and push things today off, because they have indefinite days in they’re head. I feel no matter what I do I’m just going so fast and not pushing anything off and upset those around me because I’m always going and I cause confusion in others life’s! Thanks for making me feel not so alone!

I would ve very surprised if cancer would not go into anyone's head at all.
Every time i tell people that I have cancer, I can perceive how much this single information disturbs them.
I think all of us have the same type of feeling you also have. My next series of exams will be in July, but for every exam we always wonder if it will come clean or not.
In the past years I used the hint everybody gave here : to live one day at a time...
On my case, I also looked for some help of a psychiatrist and he helped a lot with some anti-depression medicine, which I am taking now for a year and will continue as much as needed. Do not forget having cancer impacts us heavily psychologically and chemo causes imbalances in the brain's chemistry balance.
My best wishes for you and let me know if I am able to help somehow

Hi Paul,

For me, Mike (MM) summed it up with Brownbagger's words and that was massive for me to overcome. Yes we all have faced a stage IV diagnosis, and to be honest, have no real control over the outcome but the only thing we have control over is what we do with the time that we are facing it. I'm 9 years on from diagnosis but I faced a choice of either letting the cancer diagnosis dictate to me the life I lived, or I could seize it by the balls, decide to do the things I always wanted to do, and do them now whilst I still could. I look back now and I am so glad that I did those things. My wife and I always said it was either 100% or 0% so live like it was 100% ok until a 0% smashed us in the face.
Sure, I lived with fear for a long, long time and it always plays on your mind but I choose to look at what memories did I want to make for myself and my wife (no kids), and in your case for your kids? I guess you want the best for yourself and your family so you need to find a way to tame that fear.

Brownbaggers words helped with me with that, and another person once PM'd me and talked about a knife killer (cancer) hiding under her bed. The fear will always be there but you just need to find your own way to control it as best you can.

Good Luck.

Kiwi

I don't think anyone that hasn't been through cancer can fully know how awful it is and what it can do to your psyche. I can't imagine anyone going through it unscathed. The time before a scan absolutely awful. You're not alone and we're rooting for you!

kiwiinoz wrote:Hi Paul,

For me, Mike (MM) summed it up with Brownbagger's words and that was massive for me to overcome. Yes we all have faced a stage IV diagnosis, and to be honest, have no real control over the outcome but the only thing we have control over is what we do with the time that we are facing it. I'm 9 years on from diagnosis but I faced a choice of either letting the cancer diagnosis dictate to me the life I lived, or I could seize it by the balls, decide to do the things I always wanted to do, and do them now whilst I still could. I look back now and I am so glad that I did those things. My wife and I always said it was either 100% or 0% so live like it was 100% ok until a 0% smashed us in the face.
Sure, I lived with fear for a long, long time and it always plays on your mind but I choose to look at what memories did I want to make for myself and my wife (no kids), and in your case for your kids? I guess you want the best for yourself and your family so you need to find a way to tame that fear.

Brownbaggers words helped with me with that, and another person once PM'd me and talked about a knife killer (cancer) hiding under her bed. The fear will always be there but you just need to find your own way to control it as best you can.

Good Luck.

Kiwi

This made me so happy for you reading it!

Hi Paul, just want to let you know I too understand where you are coming from and you are not alone. It's not easy to come on here to acknowledge the feelings and emotions that you are going through and I just want to say it's okay to do so.

When I got diagnosed, my whole world got turned upside down. Everything that I came to believe in (my beliefs, values, ideals, visions, life mottos, philosophies etc...) was thrown out of the window in a span of 6 months after I got diagnosed. One would think that as time went by and as chemo finished and I got qualified as wait and watch candidate, the emotional turmoil and agony would be gone together with the damn tumour. Nope! The emotional turmoil didn't go away and it hung around all the time, even during times when I should have been happy! I felt soooo guilty, so terrible for not being happy and that in turn made me even more depressed.

I was trying to live life as if every day was my last day trying to cramp, push, shove anything in my way on a fast-forward mode, and in the process of it all became withdrawn and hurt a few loved ones along the way. I also decided that I shall have no patience for anyone or anything as a form of revenge and resentment against what I was going through. It was as if I was living a grudge with everything in my way and I don't even know why!

I'm a little better these days but the months running up to a scan will have me freaked out all over again. My husband thinks it's a form of cancer PTSD. I had a lot of help from a counselor in the first year and she helped me tide through some dark times. I wonder if you may want to consider that if nothing else is working. I also asked to be prescribed a supply of benzodiazepine medication to calm me down whenever I need to. I was on Lorazapam. I was on the verge of asking for anti-depression medication at one point but managed to get out of my funk a couple of months ago but I wouldn't discount that if and when the need arises.

Heal at your own time, allow yourself to be emotional if you need. Speak to someone you trust about what you are truly feeling. If that is not possible, seek counseling or psychiatrist help. I wouldn't discount medication if that is what it takes to get you back on track. All the best. Always remember you are not alone, come here for a rant or a chat anytime!

Dear Paul,
I can certainly relate. Not only is it exhausting physically, but also mentally. I sometimes think the latter is even worse. The why-me question and how it tore apart any plan I had for myself and my family made me angry and beyond upset.
One night as I was sitting by my son’s crib, I thought to myself, life is not fair and I’d been dealt a terrible card. I have two options. Should I keep being angry or should I bite the bullet and make the best of a horrible situation?
I thought about how my wife felt. Somebody she loves has this deadly disease and she couldn’t help take that pain away. My children’s eyes when they saw me shaving my hair off because it had gotten bad with bald spots from chemo and then they looked away. They were at the ages of 5 and 3 then. But they knew something bad was going on.
I realized then what I was doing to them (snaps, rush through everything, constant yelling) did not make the cancer go away. It pushed them away.
In my situation, however, annoying they did, I needed that distraction. I found that without them, all I could think about was how bad the chemo made me sick or I would have to listen to the sound of 4FU poison pumped into my vein.
Do not make cancer steal your life more than it has. Rather, enjoy whatever little things that make you happy despite the circumstance.