Anyone else struggling to live life normally?

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Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Anyone else struggling to live life normally?

Postby Pagola44 » Fri Apr 26, 2024 10:27 pm

So in June 2023 I was diagnosed with Stage 3B Bowel cancer,
Even though I was extremely healthy and had no genetic/family history of cancer.

Since then I have had surgery and completed my chemotherapy.
My first blood test and CT scan after treatment showed clear of disease except for 3 small tiny spots on my lungs my oncologist told me not to worry about for now.

I've been really struggling to try and live my life normally. I know others have it worse and i should be thankful. But all my life i've always felt "cursed" and bad things seem to happen to me. I can't shake this gut feeling / inevitability that I will experience a recurrance.

I don't know how i'm supposed to live. Do I live like i will be living for a long time or the above will occur? I can't concentrate on studying somthing new and changing career because what if thinggs take a turn for a worse? I'm in a relationship but scared to go to the next steps because of this as well. I have dreams and wake up in cold sweats about this happening.

I've tried talking to people about this and seeing a therapist but feel like it didn't really help. I'm tired of dealing with this. Anyone else in a similar boat?

Am i meant to just accept the inevitable move to thailand and live life like i don't have long left?
Or am i meant to focus on my career and do things with the thought i'll be here long term?
Even though i can't shake this gut feeling of inevitability

I have had visions/dreams of people talking at my funeral people saying "Oh how could this happen he was so young and healthy" it feels like destiny. Anyone else?
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Anyone else struggling to live life normally?

Postby Rock_Robster » Sat Apr 27, 2024 8:20 am

You seem like a logical guy, so here's my approach.

What would the regret be if you lived your life ‘normally’ without fear of cancer, and ended up having a recurrence at some point?

Would that situation be any worse than if you had lived your life in constant fear of recurrence and then had one?
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

Rock_Robster
Posts: 1038
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Anyone else struggling to live life normally?

Postby Rock_Robster » Sat Apr 27, 2024 8:31 am

Or, let’s think of it as a game theory set (this would be shown better as a tree, but we work to the limitations we have!).

First, let’s simplify. You have two options: live Hopefully (Hope) or live Fearfully (Fear).

Cancer has two options: Recur (Recur), or Don’t Recur (noRecur).

Let’s also assume (for now) the outcomes are independent - that is, our mindset doesn’t change the risk of cancer occurrence, and vice versa.

Our possible outcomes look like:

(1) [Hope] [NoRecur] = best case outcome, a long full life enjoyed to the maximum

(2) [Hope] [Recur] = likely second best outcome, ultimately has cancer but could fully enjoy NED and/or healthy years in between, and other opportunities as they arise.

(3) [Fear] [NoRecur] = bad outcome, spent entire life limited by fear of something that never ultimately happens. A life of regret.

(4) [Fear] [Recur] = while there may be a certain amount of vindication felt, overall this feels like the worst to me as life wasn’t able to be enjoyed fully at any stage, and then still ended up having to deal with cancer.

Now if you remove the independence and apply even a slight correlation that fear could increase the risk of recurrence, then the tactical weighting toward Hope becomes absolutely inarguable as my choosing this you can not only still capture the 2 potential best outcomes, but also adjust the odds in your favour on the uncontrollable event.

So from this, you can see there is no scenario where choosing Fear leads to a superior result. Fear doesn’t confer ‘proctective” qualities against future uncertainty. Or as Brene Brown says, “you can’t rehearse trauma” (check out her YouTube vids btw).

Choose Hope! Or as 1990s Trainspotting says, Choose Life!
Last edited by Rock_Robster on Sat May 18, 2024 9:22 am, edited 2 times in total.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

User avatar
Green Tea
Posts: 545
Joined: Mon Oct 24, 2016 10:48 am

Re: Anyone else struggling to live life normally?

Postby Green Tea » Sat Apr 27, 2024 11:00 pm

Pagola44,

I just read your most recent post and I think I saw some indicators of clinical depression there.

My suggestion would be to ask your father to suggest a good doctor who specializes in treating emotional disorders, and then make an appointment with that doctor to have him do a formal diagnosis of your issues with (1) anxiety and (2) depression.

If it turns out that you have a formal diagnosis of "depression", then there are excellent medications that are very effective in treating this condition. These anti-depressive meds are well-tolerated, are not habit-forming or addictive, and they can be taken for
weeks or months at a time with no bad side effects. They will have the advantage of giving you a more positive outlook on life.

That's my suggestion. Since your father works in the medical field, I think he should be able to help you find a good doctor who can explain the differences between "anxiety" and "depression" and then give you a prescription for an appropriate medication.

zephyr
Posts: 399
Joined: Thu Aug 18, 2016 7:31 am

Re: Anyone else struggling to live life normally?

Postby zephyr » Tue Apr 30, 2024 11:21 am

This isn't intended as a fix as much as something to consider and maybe try. I'm not a therapist, just someone like you who has struggled with the anxiety of what if. Speaking from my own experience, the anxiety that arises from having your head in the past and the future can become a habit - and the hardest thing to break is a habit. Interrupting that cycle is a skill. Like any skill, this will take time and practice but I believe you will eventually start to notice a difference. I'm not suggesting that your anxiety isn't real or valid, only that once it fires, it's easy to get stuck there but you can learn to get out. Speaking from my own experience, the first step is catching it before it consumes you, which is sometimes easier said than done. But if you can catch yourself, I have found that interrupting the tornado of thoughts is step one. Be gentle with yourself - rather than beating yourself up for having anxiety, simply recognize that the anxiety has made an appearance. I know it sounds silly, but it helps to say (casually, not judgmentally), "Oh, anxiety, there you are again." Somehow naming it takes the edge off a little. From there, start to go through the list of what's right with your life in the here and now. Everyone's list is different but I think (if I recall correctly) that yours might include: right now I don't have cancer, right now I'm feeling healthy, right now I'm in a relationship I enjoy, right now I can (insert something you really enjoy), etc. After a while - and it will take some time - you'll start to notice that more and more, you're less anxious and when it hits, it doesn't last as long. I hope this helps you as much as it helped me.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

Deb-o
Posts: 11
Joined: Mon Sep 13, 2021 7:55 pm

Re: Anyone else struggling to live life normally?

Postby Deb-o » Wed May 01, 2024 6:52 pm

Try keeping your mind & body as busy as possible. During my treatments I had such fatigue that I had to rest a lot, but I always walked my 30 minutes a day. Being out in nature, sun shining on you, birds are singing, you can’t help but feel better. It’s good for your soul. I tried to stay busy enough that at night, I didn’t have time to worry, I fell asleep. I still had some anxiety and worries, but life is good. I did not use medication or a therapist, but I suggest that you keep trying different therapist, until you find the right one for you. They will be able to suggest different treatments for you.
DX 1/17/20 CRC
3C T3N1M0
3/20 6 wks radiation & Xeloda
5/27/30 Resection LAR robotic surgery, ileostomy placed
7/13/20-11/25/20 9 rounds of Folfox
CEA at DX 29.7
4/21 1.3
8/21 0.9
12/21 0.9
4/22 0.9
10/22 0.8
4/23 0.9
10/23 1.0
4/24. 1.1
CT, colonoscopy, MRI
1/20
CT of lungs & liver 2/20 NED
CT:
7/20 NED
1/21 NED
8/21 NED
4/22 NED
4/23 NED
4/24 NED

saltygirl
Posts: 173
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Anyone else struggling to live life normally?

Postby saltygirl » Fri May 17, 2024 3:09 am

You are very young to deal with this. Focus on a day at a time. Yes, focus on your career on your future. Look even if you had a reoccurrence. It's not a death sentence. I am in my best physical and mental stage. I look better in my late 40s than I was 20 years ago. I was in a mom's mode for 20 years. Now I focus on myself. And look 15 years younger. I tell myself: look good, feel good. For everybody it's something else. You have to find a strength that works for you. Work to live your life not work to live. Enjoy your life to the fullest.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

User avatar
chowchowgrl
Posts: 1
Joined: Wed May 29, 2024 6:49 am
Facebook Username: chowchowgrl

Re: Anyone else struggling to live life normally?

Postby chowchowgrl » Wed May 29, 2024 8:13 am

Hi. This is my first post, having just joined the forum this morning.

What a lot of great advice here! Several wonderful suggestions. Here are a few things that help me.

If you are around animals at all, you observe that they respond to the moment. They enjoy sniffing the weeds, sleeping in a patch of sunshine, chewing on something tasty. Their "life plan" is to keep living their lives, maintaining their intent for survival but making the most of each opportunity for comfort.

Along those lines, and speaking as a retired nurse, seek out what makes you happy. Feeling happy is healing to the body. You like football? Watch some every day. You like driving? Go! Flood yourself with pleasurable moments.

Finally, make use of the "break the cycle" trick. You know how at public gatherings somebody will clink a fork on a glass to get everyone's attention? If two pets are squabbling, clanging a metal pan will stop them dead. You can do the same thing to yourself when you feel yourself in a spiral of depression or overwhelming anxiety: physically do something to break the spinning. Go outside if you're inside. Go eat something with an intense flavor that totally distracts you. Put on some loud music that makes you dance. Make a head out of clay and punch it. Call up a friend who gets what's going on with you.

You know yourself best so you can enjoy experimenting with different techniques that change your immediate feelings. Your emotions about your condition are normal and to be expected, but you have the power to keep them from overpowering you.

Oh, yeah, one last thing. About the couple of little spots the doctor mentioned? Contact the doctor and ask questions! You don't have to be left hanging!

Good luck to you.

chowchowgrl

Siti
Posts: 273
Joined: Thu Aug 01, 2019 10:58 am

Re: Anyone else struggling to live life normally?

Postby Siti » Fri May 31, 2024 4:00 am

chowchowgrl wrote:Hi. This is my first post, having just joined the forum this morning.

What a lot of great advice here! Several wonderful suggestions. Here are a few things that help me.

If you are around animals at all, you observe that they respond to the moment. They enjoy sniffing the weeds, sleeping in a patch of sunshine, chewing on something tasty. Their "life plan" is to keep living their lives, maintaining their intent for survival but making the most of each opportunity for comfort.

Along those lines, and speaking as a retired nurse, seek out what makes you happy. Feeling happy is healing to the body. You like football? Watch some every day. You like driving? Go! Flood yourself with pleasurable moments.

Finally, make use of the "break the cycle" trick. You know how at public gatherings somebody will clink a fork on a glass to get everyone's attention? If two pets are squabbling, clanging a metal pan will stop them dead. You can do the same thing to yourself when you feel yourself in a spiral of depression or overwhelming anxiety: physically do something to break the spinning. Go outside if you're inside. Go eat something with an intense flavor that totally distracts you. Put on some loud music that makes you dance. Make a head out of clay and punch it. Call up a friend who gets what's going on with you.

You know yourself best so you can enjoy experimenting with different techniques that change your immediate feelings. Your emotions about your condition are normal and to be expected, but you have the power to keep them from overpowering you.

Oh, yeah, one last thing. About the couple of little spots the doctor mentioned? Contact the doctor and ask questions! You don't have to be left hanging!

Good luck to you.

chowchowgrl


You’re right… there are a lot of things beyond our control but what we can control is how we react to things. Hopefully everyone can try to live a good quality of life despite all the bad news.
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

mozart13
Posts: 170
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Anyone else struggling to live life normally?

Postby mozart13 » Thu Aug 22, 2024 4:21 am

OP, did you try CBD oil? It sure helps me manage my symptoms in a way that medication alone couldn't achieve. It offers a calming effect without the side effects I experienced with other treatments.

On Releaf's page about medical cannabis for cancer pain, it's mentioned that a 64% decrease in pain after consuming medical cannabis was reported in a survey of US medical cannabis patients. Trust me, it gets better.
Last edited by mozart13 on Sun Aug 25, 2024 6:55 am, edited 1 time in total.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Anyone else struggling to live life normally?

Postby utahgal7 » Sat Aug 24, 2024 12:09 pm

Hi,

Every piece of advice given here is really good advice. I just wanted to add that you shouldn't put your life on hold because you are afraid of recurrence and/or dying, etc. Pursue the things in life that you want to do NOW. DON'T WAIT! Are you interested in a certain career path? Go for it. Want to pursue a relationship? Go for it. Want to take a trip? Go for it.

In a previous post, Rock_Robster had given some really good advice. Choose hope and don't live your life in fear. As you know Rob recently passed away and I am certain he wouldn't want you to delay "living life" because of fear. None of us want that for you.

Take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

mozart13
Posts: 170
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Anyone else struggling to live life normally?

Postby mozart13 » Fri Oct 11, 2024 4:46 am

My mental health was a bit shattered. That's why I started taking CBD. Mamedica, the clinic where I'm subscribed, recommended it for my anxiety and stress.
So, if anyone wants to try, give it a go. But consult with your doctor first.
Last edited by mozart13 on Mon Oct 14, 2024 6:49 am, edited 1 time in total.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

aquarian_asian
Posts: 52
Joined: Wed Jul 07, 2021 7:07 am

Re: Anyone else struggling to live life normally?

Postby aquarian_asian » Sat Oct 12, 2024 6:41 am

Hi dear

I understand your feelings - we all here gone through at one point of time, cuz cancer is scary - BUT it is not a death sentence.
Keep positive thoughts, go for regular walks, meditation, even party with your good friends (just a beer)...

You are too young and LIVE YOUR LIFE without fear.

Enjoy.
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

mozart13
Posts: 170
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Anyone else struggling to live life normally?

Postby mozart13 » Sat Oct 12, 2024 2:42 pm

This is totally fine as it may take time to recover from all that you have been through. I tried thinking that it is good to live for today and be afraid of that tomorrow. Perhaps discover things that make you happy or activities that make you enjoy life on the daily. Perhaps trying to change your concern into what you like could be more useful to you. Now just remember what I am telling you that it’s perfectly alright to be feeling exactly as you are. . You’re not alone in this.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

claudejgreengrass
Posts: 2
Joined: Sun Oct 13, 2024 3:15 pm
Location: Detroit, Mi
Contact:

Re: Anyone else struggling to live life normally?

Postby claudejgreengrass » Sun Oct 13, 2024 4:36 pm

Just starting on my own personal cancer journey. It took almost 2 months from my colonoscopy till my first radiation appointment. Seems like far too many 'hoops' to jump through.
Colonoscopy, GP sets up appointments for CT scan, surgery Dr. who adds MRI, which adds prostrate biopsy. See 2 oncologists. Me and my SO are on the phone or hospital portal chasing appointments from Dr. that won't respond or acknowledge and we don't even have a plan of know what has to happen first before we can start treatment.

I haven't be conscious of any stress, but my essential tremor is much worse than normal so I must be stressed. Tomorrow I state radiation of the colon cancer with a big dose of capecitabine daily, 5 days a week for the next 5 weeks. I think I get a break of a couple of weeks before they start on the prostrate cancer radiation. They put a "Smart port" under my collarbone for infusion which will state sometime in the future for I think 4 months. Then the may do some surgery.

At least my treatment starts tomorrow (finally!!!).

Is the path for treatment always so obscure or does it vary from person to person or hospital to hospital?
Colonoscopy Cancer of colon with rectum (CMS/HCC) 8/26/24
CT 8/27/24
Circumferential wall thickening of the high rectum/rectosigmoid colon
(14.3 cm from the anal verge)
No evidence of metastatic disease in the abdomen or pelvis
MRI 9/5/24
There is an 8 cm high rectal tumor, T3cN+
Prostate Biopsy 10/2/24
Prostatic adenocarcinoma. Intraductal carcinoma of the prostate (IDC-P)
Baseline CEA value: 5 ng/mL 10/3/24
Start radiation 1500mg capecitabine x 25days 10/14/24


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