Do you imagine being told you are cured?

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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Do you imagine being told you are cured?

Postby Steph20021 » Sun May 28, 2017 5:10 pm

Sometimes I imagine what it would feel like if I was told I was cured in the future at some point. I wonder if it would put me back to the feelings and dreams and carefree attitude I had before diagnosis. Or am I somehow permanently changed? Is my psyche forever damaged by this experience of living with a currently terminal illness. Would I be able to dream big again? Would I make plans far out in the calendar? Would I get my license to practice law back? Who would I be?

Anyone else have these imaginary thoughts? What do you think? Can we re-learn the naïveté, or unknow and undue what we know?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: Do you imagine being told you are cured?

Postby musicluvr » Sun May 28, 2017 5:22 pm

I ask myself this all the time. I was not expected to still be here now, and because things are so clear, I actually wonder if I may get old after all! Stage IV with lung mets, but under control with Erbitux. Just one tiny spot. Chemo break right now. Is it possible to beat this???
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Do you imagine being told you are cured?

Postby Steph20021 » Sun May 28, 2017 5:45 pm

musicluvr wrote:I ask myself this all the time. I was not expected to still be here now, and because things are so clear, I actually wonder if I may get old after all! Stage IV with lung mets, but under control with Erbitux. Just one tiny spot. Chemo break right now. Is it possible to beat this???

I enjoy the mental escape of my fantasy. Sometimes I'll share it with my spouse and preface it by saying, I know this sounds crazy. Perhaps it's an expression of denial I have. I'm so excited for you to be enjoying a chemo break. What wonderful news you have! I do believe it can be possible for you, I draw so much hope and optimism from DK37. It's so lovely to dream about!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Do you imagine being told you are cured?

Postby Maggie Nell » Sun May 28, 2017 6:46 pm

Why don't you write it down: creative writing is just the ticket for that. Unfold the dream,
see where the pen takes you.

Those are big questions begging for answers that only you can do justice to....
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Do you imagine being told you are cured?

Postby AnnClare » Sun May 28, 2017 7:51 pm

I believe that imagining such an outcome is a wonderful and healthy dream/goal to have. While I personally imagine I am permanently changed by this experience (a certain amount of innocence has been lost, that's how I feel), I certainly aspire to being able to either beat, or at least, peacefully co-exist with this condition.

There's a book I read recently called "The Biology of Belief," by Bruce Lipton, Ph.D. It was insightful and gave me glimmers of hope. Another book, which I'm currently reading and thoroughly enjoying, is "You Can Beat the Odds," by Brenda Stockdale. While I'm not naive enough to believe we can solely "think" or "will" ourselves out of this situation, the latter book is inspiring, and full of research-based references (I know a lot of my science-minded folks particularly appreciate that kind of backing, as do I). Stockdale offers many techniques and strategies to use in conjunction with conventional treatments to improve outcomes AND enhance quality of life along the way.

In my humble opinion, it NEVER hurts to envision a day when you're told you are cured. Why not aim big, my friend? :)
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Do you imagine being told you are cured?

Postby Ron50 » Mon May 29, 2017 6:51 am

I have been told that I am cured. Did I return to my normal Life? It was in my normal life that I developed cancer, So I don't live a normal life , I proudly live the life of a survivor. As a survivor I have learned a little of what my body is telling me. It is telling me that although I survived cancer the treatment nearly killed me. I have learned a lot since I was diagnosed with cancer nearly twenty years ago. I have learned never to get slack and miss important tests like scopes. I have learned that medicine doesn't always get things right. I remember my surgeon telling me my cancer was so aggressive he could nearly see it growing. Because of that I was not happy when I went out to three yearly scopes . I had my last one in April. The GI said what are you worried about , I will not find anything. When I woke up I was shown a picture of four polyps , the largest 11 mm. They had grown in three years. I am now scheduled for two yearly scopes. I treat my side effects the same way. I was dxed with proteinurea. My gp said find a nephrologist and I will give you a referral. I did and picked a dud. He nearly killed me with prednisone. Next one was as bad . He nearly killed me with bp meds. My last one is a gem. My protein loss went out to 8 grams a day. He has it back under 1 gram with cyclosporine. I have auto-immune peripheral neuropathy. He has my blood pressure under control. He has my auto immune hepatitis under control with a short shot of pred occasionally. He keeps a check on my congestive heart failure and treats the oedema with lasik and fluid input restrictions. He can't do much for my neuropathy psoriatic and osteo arthritis. He figures with nephrotic syndrome and auto-hep the less medication the better although I do have type two diabetes from prednisone and take metformin twice a day. Like I said my life is not normal. I took cured with a grain of salt and continued to live survival mode. I've lived alone for ten years, I don't drink or smoke. My ability to exercise is limited by neuropathy and arthritis. I am 67 and still work four days a week. My life as such is not that great but under the circumstances I can't complain . I'll take survivor over cured any day , Hugs to all Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: Do you imagine being told you are cured?

Postby Felicitym23 » Mon May 29, 2017 10:50 pm

Being Stage 4. I like to think I will be cured. I try to live with hope.

Some days I come crashing back down to earth.

Some days I catch myself dreaming.

We have to dream big.

Like you I have lost so much and I just crave to go back to work etc and be normal.

Dream big.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

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

Re: Do you imagine being told you are cured?

Postby CRguy » Tue May 30, 2017 1:37 am

Do you imagine being told you are cured?
No
I just deal with what IS and say to hell with what IF
for now.

Today I AM this

the next "test" may well be WTF'ever
that is not ME
not HERE
not TODAY

some may say "yeah sure you are Stage IVa NED right now"

Really ?

Still feels like I am in the circus

DO I imagine ?
Honestly I don't allow myself that luxury,
for that question.

I AM this today ...
let y'all know how I am tomorrow
BUTT it will be real, not just imagined

BTDT already once and didn't like it


JMO
not to be a downer
just me

CR on the journey
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

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Do you imagine being told you are cured?

Postby Steph20021 » Tue May 30, 2017 1:53 am

Ron, I can hear the pain in your writing. I'm sorry it's been such a rough aftermath for you. I imagine living with permanent side effects etc. makes it difficult to move forward and beyond cancer, if that's even possible. I appreciate you sharing your voice.

Felicity-Yea, I am in your camp hehe I was reading some of your old posts on the great response you had with vectibix. Are you still on that treatment?

CR- I wouldn't call you a downer. Perhaps more of a realist. I find it surprising you still feel like you are in the circus. This sucks! And this is why I think even if I was cured down the line I would be changed because I'd have a lingering anxiety that probably wouldn't leave. I think it's totally possible to be accepting where you are today, but still let your mind wander and do role play in your head of what can at times feel like a total fantasy and other times feels totally within reach. I'm curious though, do you know your Myers Briggs personality type?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Do you imagine being told you are cured?

Postby Steph20021 » Tue May 30, 2017 1:54 am

Maggie Nell wrote:Why don't you write it down: creative writing is just the ticket for that. Unfold the dream,
see where the pen takes you.

Those are big questions begging for answers that only you can do justice to....

Never thought about creative writing, but that could be fun!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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

Re: Do you imagine being told you are cured?

Postby CRguy » Tue May 30, 2017 9:28 pm

Steph20021 wrote: I'm curious though, do you know your Myers Briggs personality type?

I could tell you BUTT then I'd have to shoot you .... :shock: :mrgreen: :mrgreen: :mrgreen:

Honestly ... at one point INTP
and sometimes the exact opposite of who I "am" here online .. if that makes any sense
always embracing the Yin / Yang balance
BUTT finding the BALANCE is always where it's AT !

So, given those metrics, I probably identify better with :
10 Year survivor in an ongoing NONrandomized UNcontrolled experiment with N=1 !
and my real life thought processes are along the lines of :
analyze
organize
incrementalize
compartmentalize
prioritize
individualize
incentivize
actualize
realize


...and Otherwize :
Aries / Rabbit / " what's up Doc ? " / MoFo / smartass /........
AND I probably qualify for a few novel DSM V categories as well ... :shock:

Yes, I'll go now .... :oops:

Thanks for asking.
Cheers
CR
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

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Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: Do you imagine being told you are cured?

Postby Hannah Faulkner » Wed May 31, 2017 2:03 am

I have the similar thoughts to woke up in pain free life. Its a good way to relax and enjoy for few moments by imagining these. :)

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Do you imagine being told you are cured?

Postby KElizabeth » Wed May 31, 2017 9:09 pm

Steph20021 wrote:
Maggie Nell wrote:Why don't you write it down: creative writing is just the ticket for that. Unfold the dream,
see where the pen takes you.

Those are big questions begging for answers that only you can do justice to....

Never thought about creative writing, but that could be fun!

On the suggestion of a post by Maggie Nell more than a year ago I took up the pen again and began drawing as I always had in my youth.
Do to interest I began to sell Giclee prints of my work and have my work showing at a gallery all of June. My first show! I'm so excited it feels like a new lease on life. I have something to dream for, and a way to release stress and meditate. Wouldn't it be so cool to survive this and start something new?
Keep dreaming. Keep evolving.
~Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Do you imagine being told you are cured?

Postby Maggie Nell » Thu Jun 01, 2017 1:58 pm

Elizabeth, I'm quite chuffed that the post I made (that got all of two replies) :roll:
got your creative spirit rolling.

viewtopic.php?f=1&t=53587&p=424906#p424906

I transitioned from being a maker of traditional quilts to a fibre artist since my emergency
r.hemi and subsequent *shock* diagnosis. My first inspiration was the Bristol Stool Chart...
which I passed off as just my quirky sense of humour... Quilters have a saying, "She who
dies with the most fabrics, wins!" Colon cancer cured my hoarding instinct... :D

Coincidentally, I was invited to display my work in a gallery only last week and as we were
chatting away over the afternoon, I realised these people knew zip about my health status
and what I have been through.....their ignorance was my bliss!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Do you imagine being told you are cured?

Postby juliej » Fri Jun 02, 2017 5:01 pm

CRguy wrote:Do you imagine being told you are cured?
No
I just deal with what IS and say to hell with what IF
for now.

Today I AM this

the next "test" may well be WTF'ever
that is not ME
not HERE
not TODAY

some may say "yeah sure you are Stage IVa NED right now"

Really ?

Still feels like I am in the circus

DO I imagine ?
Honestly I don't allow myself that luxury,
for that question.

I AM this today ...
let y'all know how I am tomorrow
BUTT it will be real, not just imagined

I can identify with this. I've spent the last year looking for Julie B. C. (Julie before cancer). I rock-climbed, bicycled, kayaked, ran hundreds of miles up and down the mountains around me, practiced my t'ai chi, meditated and meditated some more. But the more I looked, the more I began to realize she no longer exists. There is no going back to my old life. The journey into the wilderness of Stage 4B cancer survival didn't come with discharge instructions.

The most difficult thing about survivor's limbo is planning for a future that may never be. The specter of recurrence always looms. It is so difficult to try to look forward, to fall in love with someone, to take a new job in a faraway place, to make plans for old age. You hesitate because you fear your heart couldn't take the loss again if the cancer came back.

But CRguy has words of wisdom for me: "Today I AM this." And that's a beautiful message.

Inspired by him, I am a little braver in my heart today, flames a little taller in my soul, liquid-centered. Within me, flow. Namaste, my friend.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1


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