Can you go on like normal

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Can you go on like normal

Postby Trying » Sat Jan 05, 2019 10:39 pm

Can those with more advanced cancer just live happily each day without fear. Im seeing a psychiatrist soon but am so consumed with fear i am missing out on so much. Im down from 10 mets to 2 but so scared because cea went from 11 to 19. Nurses said its such a small rise that could uave been caused from inflammation or stress.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Can you go on like normal

Postby Rock_Robster » Sun Jan 06, 2019 5:02 am

Hi Trying, I’ve only been on this journey for two months now so I might not be the best to comment, but I’ll give my two cents anyway.

I am afraid; absolutely. Every day, to some degree. Some days though I can still live “happily” mainly by focusing on what I’m doing that day and that day only, the things I have (all my senses, my partner and family, that I’m fortunately not in pain, etc), and not thinking too much about the future and all the “what ifs”. I guess this is called mindfulness and it is REALLY hard, but my psychologist is a big advocate and I can see the benefits.

I also have to tell myself that there are just so many possible “imagined” fears about the future (the majority of which will likely not happen), and I have enough real challenges now and real good things to appreciate, that I can’t possibly worry about everything. I have to focus only on the real and the now, and deal with the future as it comes.

I don’t know if I’ll ever feel “normal” again like before my diagnosis, but maybe there’s a “new normal” I can make peace with so I can live my life to its fullest. The thing I find hardest is that due to my personal circumstances I have had to give up in the short term so many of the things that used to make life feel “normal”, so I now have to work on re-establishing some sort of routine and identity beyond someone who just gets cancer treatment, in order to achieve my “new normal”.

Getting help from a psychiatrist, psychologist or therapist is a great idea. I had to visit a few to find one that I ‘clicked’ with, but it’s definitely worth doing and persisting with. Also exercise helps my mood and overall well-being a LOT (and as a bonus, is proven to lead to better health outcomes and reduced recurrence risk). I’ve also heard lots of good things about meditation though have yet to get started myself (planned for mid-Jan).

Best of luck, keep talking and asking for support, and focus on the good news when it comes - down from 10 mets to 2 is great news!
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

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Can you go on like normal

Postby Punky44 » Sun Jan 06, 2019 2:41 pm

I can relate to your feelings from two different angles—one from being the caregiver to my mom going through this and worrying about her everyday and then as a sufferer of severe health anxiety myself, I have been fearful of just living in general for years and my mom’s cancer diagnosis has taken it to a whole new level.

I hope you can get some help from a professional—I have been to a couple and it’s been helpful but I always fall back into my bad habits.

It really is all about mindfulness and living in the now and not being consumed by what if or the lack of control and certainty. I “get” it but damn, is it hard to do. :/
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: Can you go on like normal

Postby kiwiinoz » Sun Jan 06, 2019 5:17 pm

Hello Trying,
You are in a challenging place. However how you handle that is totally up to you. I too struggled with similar emotions, which I found hard to process. I was loosing the battle, and then I talked to someone on this site that I exchanged many PM with and he was in a much worse situation than I was, but he lived his life to the fullest. He had a motto "Live your life like it's going to be a long one, because it just might, and then you'll be glad you did", which I took a while to digest, but to me it comes down to you have cancer, you can't change that. You can't control anything apart from how you react to that, and that will determine how you feel during this process.

If you chose to dwell on the negatives, then your time will be negative, if you chose to try to make positives, then you will have positive things in your life, despite all the other factors you can't control.

I did chemo with someone who was always trying to make her life fun. She baked and brought in food for her chemo mates, she was always going on small holidays with her friends, she had a great Oncologist that pushed her chemo to maximize the time she could have off chemo so that she could make the most of her life.

I am not trying to say anything other than you need to find a way to process what is happening to you and find some positivity or it will eat you up inside and your life will be a sad and dark one.

Cheers

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 - August 2020
Port Out 26 March 2015

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Can you go on like normal

Postby stu » Sun Jan 06, 2019 6:07 pm

Just on a practical note . My mum’s CEA always popped up a bit on chemo . The first year it caused my anxiety to sore . The second year I knew the script. Her scans were showing significant reduction.
My mum has been fortunate as she felt very peaceful as she did not feel it was her time . I would not even say it’s true to her nature .
It’s very hard to control your mood by yourself . Sometimes we need a bit of help so I am pleased you are seeing someone .
What I would say is others have reported the same reaction to this threat and with time and help seem to have gotten to a better place . I hope for this for you too .
You are doing incredibly well with treatment by the way . My mum’s rise was due to tumour death !!!
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Can you go on like normal

Postby lakeswim » Sun Jan 06, 2019 7:57 pm

I'm glad someone posted on this topic. I think about it a lot.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Can you go on like normal

Postby Trying » Sun Jan 06, 2019 9:16 pm

Thank you all
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Can you go on like normal

Postby Trying » Tue Jan 08, 2019 8:31 pm

Cea dropped back down a bit :D
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: Can you go on like normal

Postby Detox » Tue Jan 08, 2019 11:00 pm

Trying wrote:Cea dropped back down a bit :D



AWESOME!! Keep fighting and keep pushing for surgery and doing HIPEC.

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Can you go on like normal

Postby Koreysue » Wed Jan 09, 2019 1:27 am

Hi Trying,
I struggle daily with fear, and what now seems to be depression. I’ve started seeing a therapist which has helped. And am about to start some medication. Hoping that will help. I’ve heard some say it gets easier as the years pass... getting closer to the 5 year mark.
I wish we all didn’t have to be in this situation.
It helps me to re-read stories on here like stu’s Mom, and Lee, and CRguy and others.
Korey
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Can you go on like normal

Postby CRguy » Wed Jan 09, 2019 2:12 am

Once we have the diagnosis .. there is NO normal :shock:
if that makes any sense ..... :?:

Normal IS what WE make of it
here and now
today and tomorrow

I go on with NO rmal

parse that as you like ... BUTT I am here
NOW

and I am guessing that is kinda ...? normal ??

Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Can you go on like normal

Postby stu » Wed Jan 09, 2019 9:48 am

Yippee . A wee blip . Now you know it can go for a wee bounce you can relax about it .
It is still going in the right direction .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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