soothing the mind helpful insights appreciated

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NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

soothing the mind helpful insights appreciated

Postby NateA » Fri Sep 11, 2015 3:10 pm

So being newly diagnosed, frantically educating myself like I'm sure all of us on this forum have done and do always, I've becoming more and more determined soldier up on this. I've began walking, and against my will I've had to change my diet to something a little more healthy. Whay I am most concerned about at the moment is peace of mind. I'd really appreciate knowing what you folks whom I consider now my brothers and sisters, do to get the cancer off the top of the mind. I just want to jot think of it 24/7. Ideas and whatever you may do to help yourselves needed here. Thanks folks, be blessed today!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: soothing the mind helpful insights appreciated

Postby midlifemom » Fri Sep 11, 2015 3:29 pm

To calm the mind - not necessarily in any order
Xanax
Keeping busy
Physical work
Playing solitaire
Accepting what can't be changed
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: soothing the mind helpful insights appreciated

Postby lpas » Fri Sep 11, 2015 3:39 pm

I've found that getting really engrossed in a good novel helps keep my mind from going to dark places.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: soothing the mind helpful insights appreciated

Postby JJ2212 » Fri Sep 11, 2015 3:40 pm

Imo, the first few months post-diagnosis are the worst. It's really hard not to think about cancer 24/7 and I don't know that I was very successful in keeping bad thoughts at bay. Things that eventually helped:

Seeing a psychologist specialized in oncology
Getting a good night's sleep (with help from meds, when needed)
Allowing myself to cry no more than 5 minutes a day

Take care,

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: soothing the mind helpful insights appreciated

Postby Annemiek » Fri Sep 11, 2015 3:50 pm

I would add to ta, zolof, internet shopping,netflixmarathons, audiobooks while walking, mindfulness practise, love the chocolate meditation by mark williams ..http://franticworld.com/free-meditations-from-mindfulness/

Spending time with friends doing funstuff, preferably active where you have to keep your mind focussed so you can't drift into thoughts.

I bought some lego buildings for 16+ which is like 3d puzzles except less boring. Mindfull lego-ing saved me :D ( now I don't know where to keep the buildings)

I read a lot of uk crime/ detective novels just all type of books that grip your mind and you want to know how it finishes, but you don't have to do a lot of thinking while reading.

Giving yourself "time off" of cancer is so important to keep going...

Oh, and I spend a lot of time surfing this forum, looking at the fun topics :?

Making holiday plans for after treatment, gardening especially getting rid of unwanted plants agressively :twisted:


Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Nik Colon

Re: soothing the mind helpful insights appreciated

Postby Nik Colon » Fri Sep 11, 2015 4:43 pm

I agree with the xanax for stress/anxiety. But mainly, I just try to be as normal as I can. Personally I haven't changed much what I do now from what I did b4, imo, trying to change only makes you more stressed, and stress is one of the worst things for you. If change makes you happy, go for it, but if it stresses you or makes you think of it more because you are changing just because of this, imo it does no good. Jmo

Side note, look at it in a positive way, you found out and can now possibly fix it, vs not knowing and get to the point of no return.

For me, I had issues for sooooo long and knew something was wrong but they couldn't figure out why, I'm happy I can now say...see, I told you, lol

SugarBubbie
Posts: 239
Joined: Sun Jun 12, 2011 3:55 pm
Facebook Username: Rhonda Pinkston
Location: Texas

Re: soothing the mind helpful insights appreciated

Postby SugarBubbie » Fri Sep 11, 2015 5:34 pm

I found my outlet in drawing and then coloring mandalas. You draw a circle and put anything in it you want. It started with trees, flowers, birds, water falls...you name it. Then I'd color with Sharpie pens. The drawings have changed over the years and now a lot of my family want me to draw them one....who knew I'd turn into an artist. So good came of the bad for me anyway.

I also practice breathing to help with anxiety.
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

PainInTheAss
Posts: 678
Joined: Tue Jul 02, 2013 3:08 am

Re: soothing the mind helpful insights appreciated

Postby PainInTheAss » Fri Sep 11, 2015 5:48 pm

Ditto on most all of the above. I did a LOT of reading post surgery. More like Wikipedia surfing than books, though. Any thought or question that popped in my head got Googled like "Why don't spiders get caught in their own webs?" And "Is the Black Sea black?" Etc. I would read and read at night until I fell asleep.

I also got really into Ipad games. I had four or five going at once and I would just rotate between them while I was waiting for energy to replenish or for something to build.

I do remember I had a lot really strange dreams during treatment. There was always some disaster happening or something important going on like a Nicolas Cage movie. "I'm going to kidnap the President." I would wake up from a war or invasion and my problems seemed smaller somehow. Oh, and I read a lot about other people's tragedies. There's always someone else in a worse situation or who died younger than you are from something other than cancer. It made me appreciate the time I've had and I felt less like I'd been given a raw deal.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: soothing the mind helpful insights appreciated

Postby Joannerogers » Fri Sep 11, 2015 8:58 pm

I play solitaire A lot! Surf face book, play casino games on my iPad, read, clean house when feeling energetic and constantly talk to my mother in law on the phone....she can talk for 2 hours straight! If these aren't appealing on bad days and worry creeps in, which it does, I take my Ativan, thinking about medical marjijanua but so far it's not legal in tn and I don't want to add a worry of getting arrested lol...I'm not the jail inmate type lol
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: soothing the mind helpful insights appreciated

Postby ALW » Fri Sep 11, 2015 10:43 pm

I read and exercise a lot. When I can't sleep, I do a self hypnosis sleep mediation (YouTube has tons of them). I wasn't working at the time of diagnosis, but started a part time job during my second week of treatment. It's just 4 hours a day but it keeps my mind off of things and keeps my brain active. Others may disagree with this last thing, but I limit my time on this forum. I found myself freaking out as I was reading each thread. Now I come on here maybe just a few times a week instead of multiple times per day. I do love this ever so helpful forum though.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

Kiwi Debz
Posts: 167
Joined: Fri Aug 22, 2014 9:42 am
Facebook Username: Deb Goldby

Re: soothing the mind helpful insights appreciated

Postby Kiwi Debz » Sun Sep 13, 2015 1:59 pm

All of the other posters have given great suggestions. I guess the one thing is time.

I remember at the start I was obsessed with this disease, investigating, researching, listening, learning, dreaming ... It was all encompassing and exhausting..

With time I am now fully aware of my dilemma but I don't think about it all day every day. Still get a little anxious from time to time for the unknown but generally I am pretty good.

Give yourself time to learn to live with cancer rather than have cancer and live!

Hang tight!
Deb
6/14 DX mCrc stage 4
7/14 R. hemicolectomy; 4/17 LN; liver res. peri met; repair to illiac artery
8/14 FOLFOX
10/14 PET recurrence LN; liver ? Peri met Continue FOLFOX
12/14 PET: stable .Liver only! FOLFOX
02/15 Liver resection. NED
03/15 foundation One testing - BRAF mutant
05/15 progression; Hilum node; both lungs?
08/15 NED !!!!
Age 51 Mum to Tom (RIP) and Jose 18
KIA KAHA - Be strong!

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: soothing the mind helpful insights appreciated

Postby Mattie » Sun Sep 13, 2015 7:14 pm

Nate

I'm sorry for your diagnosis. I agree that the first months are the worst. I calmed down some, when I had a treatment plan. It felt good to be doing something about it....but I was still in despair thinking I only had a little time left. My kids were only 8 and 11 at the time. I used to stand at their bedroom door while they slept and cry about all the things I would miss.

It is easy to become obsessed and to think about nothing but cancer 24x7. It does get exhausting.

Just remember nothing is pre determined. Every "cancer Journey" (hate those words, but can't think of anything better) is different. Nothing is pre-determined. You can end up wasting alot of time worrying for no good reason. Looking back over the last 5+ years, I sure have.

Hang in there. You are in alot of good company on this board.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

ab123
Posts: 124
Joined: Tue May 21, 2013 12:25 pm
Location: Boston

Re: soothing the mind helpful insights appreciated

Postby ab123 » Mon Sep 14, 2015 12:08 pm

Things that helped me early on in my cancer experience to deal with the stress:

  • Stupid comedy movies and YouTube clips helped me. Stuff like auto-tune the news was so funny to me or anything stupid and goofy
  • Developing an exercise routine. Got a gym membership, started doing elliptical, swimming
  • Talking a lot with my family and friends - sharing my feelings and fear
  • Walking the dog
  • Going on hikes in the woods
  • Thinking about how I fit into the natural world, and the beauty and immortality of that, despite the mortality of my human body.
  • Thinking about the role of uncertainty in my life - the fact that it is always there and always has been there with or without cancer. No one ever knows what's going to happen and you might as well imagine good things.
  • Life is amazing and wonderful even though we all know it will end one day. Cancer has made me realize that more than ever - which for me is a very powerful and positive thing.
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!


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