This cancer is getting to my head and I need some help

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PaulSmarinecorps
Posts: 19
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

This cancer is getting to my head and I need some help

Postby PaulSmarinecorps » Sat Feb 20, 2021 8:23 pm

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.
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

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muskokamike
Posts: 229
Joined: Tue Feb 25, 2014 4:38 pm

Re: This cancer is getting to my head and I need some help

Postby muskokamike » Sat Feb 20, 2021 9:46 pm

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
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

BrettC.Ellis
Posts: 1
Joined: Sun Feb 21, 2021 8:58 am
Facebook Username: Brett.ellis

Re: This cancer is getting to my head and I need some help

Postby BrettC.Ellis » Sun Feb 21, 2021 11:03 am

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.
Brett (39)
Dec 2020: Stage 3A Rectal Cancer T2N1A
CEA: 2.2
01/19: Resection
02/18: Port Placement
03/02: Chemo Starts

saltygirl
Posts: 2
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: This cancer is getting to my head and I need some help

Postby saltygirl » Sun Feb 21, 2021 1:28 pm

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.

Achilles Torn
Posts: 129
Joined: Fri Dec 16, 2016 2:41 pm

Re: This cancer is getting to my head and I need some help

Postby Achilles Torn » Sun Feb 21, 2021 4:06 pm

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
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

PaulSmarinecorps
Posts: 19
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

Re: This cancer is getting to my head and I need some help

Postby PaulSmarinecorps » Mon Feb 22, 2021 8:17 am

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!
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

Thedruid
Posts: 3
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: This cancer is getting to my head and I need some help

Postby Thedruid » Mon Feb 22, 2021 11:16 am

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
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B colon cancer, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX started in 08/29/18 - finished 2/5/2019
Stage 4
Liver met found in 01/2020. RadioAblation in 02/2020

kiwiinoz
Posts: 1155
Joined: Thu Jan 03, 2013 11:44 pm

Re: This cancer is getting to my head and I need some help

Postby kiwiinoz » Wed Feb 24, 2021 8:51 pm

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
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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horizon
Posts: 1605
Joined: Tue Apr 12, 2011 10:10 pm

Re: This cancer is getting to my head and I need some help

Postby horizon » Thu Feb 25, 2021 10:20 am

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!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

Jolene
Posts: 164
Joined: Wed Jan 23, 2019 10:17 am

Re: This cancer is getting to my head and I need some help

Postby Jolene » Thu Feb 25, 2021 11:58 am

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!
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

NoVA21
Posts: 5
Joined: Thu Feb 25, 2021 7:15 pm

Re: This cancer is getting to my head and I need some help

Postby NoVA21 » Thu Feb 25, 2021 8:58 pm

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.
Dx Jan 2015
Colon Resection Feb 2015 stage 3B
Folfox started Mar 2015
Could only finish 11 out of 12 rounds
Mar 2016 dx mets on both lungs - officially stage 4
Apr 2016 double lung resection
By the grace of God, am still clear today.


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