Things people say or don't say but it's okay

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benben
Posts: 328
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Things people say or don't say but it's okay

Postby benben » Thu Jun 29, 2017 8:24 pm

stu wrote:Oh I have a wee confession . I am a daughter. I had trouble posting about six years ago so tried using my son's name . Stewart! He is 17 too. I am so touched your son has been so mature. My son has been great with his support when my mum is ill but he is also great at picking up on my needs too.
I have decided against trying to gain an associate Medical doctorate specialising in oncology. I thought even a bad oncologist must be better clinically than my novice status . But I keep ahead of what is coming through and decided a supportive role was probably much more useful to her.
I have learnt loads and totally change along the way.
I wish you every success and you must be a good dad. There is a reason I support my mum!!!
Take care,
Stu


OH STU! You made me laugh! HA!

I'm so sorry I assumed you were a son. That is totally my bad.
That said. I still view you in highest regards, knowing the role you are taking on :)
I'm happy you have a supportive son as well. I know for me its a big emotional boost and huge delight
to witness my sons compassionate growth and development into a compassionate human being.

There is a reason indeed that you support your mum, she must have been a great mother :)

Keep on the path - one step at a time.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Things people say or don't say but it's okay

Postby Swirdfish » Thu Jun 29, 2017 8:26 pm

Not all organic food is good for you. :lol:

http://www.iflscience.com/health-and-me ... s-parents/
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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Bev G
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Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Things people say or don't say but it's okay

Postby Bev G » Thu Jun 29, 2017 9:12 pm

Maia wrote:
JudeD59 wrote:That post is dedicated to Delinda and CrystalD and Voxx and Bella and so many others. Always in our hearts.


Oh, the fine people you're naming!
Now I imagine Voxx commenting on all this:
HA.

: )

Edited to add: I want to remember this night dianne052506 and Skypup.
I'm going to copy here a tale that Dianne liked very much:
    "Once upon a time, Buddha, with his monk disciples stopped by a village. His intentions were to deliver sermons and spread the message of righteousness and liberation. Some of the villagers however did not receive him well. They called him an atheist, used abusive language and asked him to leave the village. Buddha, however, remained quiet and peaceful as ever. He did not respond to any of the verbal abuse. His face expression did not change.

    His disciples could not bear their master being abused, they could not see him treated that way. They felt bad and hurt. Taking cue from their master, they chose to stay quiet however.

    The disgruntled villagers left after a while. Peace ensued. Only Buddha and his disciples were left there.

    “O Venerable One!” Shariputra, his close disciple said to Buddha, “how come you could stay so calm? How come it did not bother you?”

    Buddha’s eyes half closed and his elusive smile remained unchanged for a good few minutes. After which he spoke the following words:







    “If someone offers you a gift and you refuse to take it, to whom will it belong?”

    “It will remain with the one who offered it, Master,” Shariputra replied after some thought.

    “In much the same manner, my spiritual son, I refused verbal gifts of the villagers,” Buddha added, “How can I be burdened by something I do not accept? And why would I stop them if they felt good?”

    Upon hearing his master, tears trickled down Shariputra’s face. He understood the profound wisdom and compassion behind the golden words of Buddha.

    We don’t control what others say about us, but we always have the choice to accept, reject or ignore whatever is offered to us, verbally or materially.

    If you do not accept whatever gives you grief, well then, it can never grieve you. Just before you accept or reject anything, any opinion, there is a quiet moment. It is a short one. It is the moment to exercise your choice.
    Much like the auction where you only have so much time before the hammer goes down. Once you consciously accept something, getting rid of it becomes harder later on.

    Next time, anyone tells you what all they don’t like about you, you have the choice to reject it; they may give you a hundred reasons why your goals are too ambitious, you have the choice to ignore them; they may have a list of all the things you lack, you have the option to not buy their opinion. The choice is entirely yours, independently yours. And it is your choice alone that is going to make a direct impact on your state of mind and being.

    The choices we made yesterday determine where we are today and the choices we make today will dictate where we may end up tomorrow.
    Never let others’ words or gestures make you feel a certain way. It is not easy but it is possible with practice.
    You dictate your own rules. That requires an awareness."


WORD

Love you, Maia.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Things people say or don't say but it's okay

Postby JudeD59 » Thu Jun 29, 2017 9:27 pm

Maia wrote:

    Once you consciously accept something, getting rid of it becomes harder later on.

[/quote]

Lovely, Maia. Thank you. I would just like to add that once you consciously reject something that is offered, it may not be offered again later on.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Things people say or don't say but it's okay

Postby Lee » Thu Jun 29, 2017 10:01 pm

JudeD59 wrote:
Maia wrote:

    Once you consciously accept something, getting rid of it becomes harder later on.



Lovely, Maia. Thank you. I would just like to add that once you consciously reject something that is offered, it may not be offered again later on.

Judy[/quote]

Just want to add thank you Maia, and thank you Judy, beautiful words from both of you.

This will be the last time I respond to this thread.

All the best to Christine and M. . .

And of course to all those who tired to help,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Things people say or don't say but it's okay

Postby ams5796 » Thu Jun 29, 2017 10:10 pm

I hear you, Lee. I'm out too. This is exhausting. Time for me to get off the colon club again. :(


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Bev G
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Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Things people say or don't say but it's okay

Postby Bev G » Fri Jun 30, 2017 12:38 am

Hi gals,

Count me out as well. Maia's story helped me a lot.

I keep thinking about what happened with Patrick M. many years ogo. This whole thread reminds me of that...butt really, in such a different way. I've used up my time for nonsense foe a while.

xox to you guys.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Things people say or don't say but it's okay

Postby CRguy » Fri Jun 30, 2017 1:18 am

If this is a board where it's all about misery loving company, with no hope and comprised only of victims who tolerate bad behavior based on seniority and where the most snarky of sarcasm is not only accepted but cheered, then it isn't the board for me, of course. Time will continue to tell and I will, as I may have already said, just use the mute button. I have expressed deep thanks in other posts and have engaged in enough useful productive exchange of information to make me think that this isn't just a board of people who play no role other than to criticize, attack, and personally insult.


When I read this the only thing which comes to mind is another quote from the movie Top Gun :
" You didn't learn a damn thing, did you? "- Charlie to Maverick

As you sow....
so, shall you reap

I am indebted and committed to this group, of your self professed misfits.
When you leave I honestly hope you will find the same, elsewhere, for your husband and yourself, as it seems we are not it.

Namasté

Best wishes on your 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

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Things people say or don't say but it's okay

Postby LPL » Fri Jun 30, 2017 3:17 am

Maia, Thank You !!
Those wise words from Buddha are now saved so that I can easily find & read them again when in need..
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Things people say or don't say but it's okay

Postby Sophy » Fri Jun 30, 2017 6:02 am

Once again I have to say that this board is amazing - so many people have given so much of their time to craft polite, helpful, non-threatening replies to a stranger in need of help.

Whether that gift of help is accepted or not is up to the OP - but nothing she/he says can diminish the good intention of those who replied.

And - I can never be grateful enough about my successful treatments - thanks to support and information about possibilities which I learnt from this board - my CT scan last month shows that I am still NED 6 1/2 years from diagnosis and getting on for four years from recurrence. Wow. I really would not be here without all the amazing members of the Colon Club so I thank you all.

Sophy
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Fri Jun 30, 2017 5:17 pm

Some people didn't find anything wrong with the OP, one even loved it, some found offense, but I haven't learned? No, I just haven't conformed and bowed down to the intense pressure some of you put on people when they have a different opinion.

Of course, if that quotation from one of the journal articles offended a few of you, I'm sorry it did but I didn't make it up nor did I share it with the purpose of offending. As explained, it's part of a larger philosophy, one of hope and possibility, that I have based on personal experience.

"We don’t control what others say about us, but we always have the choice to accept, reject or ignore whatever is offered to us, verbally or materially."

Word.

To those who loved that post by Maia, which was wonderful btw, thank you: I kindly suggest that if you also find this exhausting and don't like my perspective (which is based on decades of up and down depths of experience with life, health, love, near death, and death and rebirth - and none of you have any idea whatsoever of what I have personally been through), then you might be helped by a variation of the afore-cited quote:

"We don’t control what others say, but we always have the choice to accept, reject or ignore whatever is offered, verbally or materially."
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Things people say or don't say but it's okay

Postby Sophy » Sun Jul 02, 2017 6:00 am

When I read this the only thing which comes to mind is another quote from the movie Top Gun :
" You didn't learn a damn thing, did you? "- Charlie to Maverick

So mpber maybe you could count up the hours which people here have spent trying to help you and your husband - those hours are pro bono? But as you say - you are too busy doing paid work for clients to even take the time to read properly the replies which strangers are giving you for free and not charging you for their time - who needs to know what xelox or folfox or xeloda or 5fu means? Maybe friends and family of an Mcrc patient?

I have been a member of this board for over six years now and have never encountered such arrogant ignorance as mpber login has displayed. It has been shocking but also sad - I was horrified, any normal person would be horrified and saddened, to read that someone could blame a cancer sufferer for their disease - especially a sufferer from colorectal cancer which all specialists agree is not the fault of the patient.

But on reflection I don't believe that anyone could be so evil, no-one could try to put blame on someone they loved for a life threatening disease which wasn't their fault. I think we can be reassured that mpber is just a troll and not a human. There is no husband being tortured with remorse for a deadly disease which isn't his fault.

Seriously, that troll shook my faith in humanity before I realised that of course it was a troll...

Sophy
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Things people say or don't say but it's okay

Postby Swirdfish » Sun Jul 02, 2017 11:14 pm

Personally I think this thread should be locked by admin and we all move on before we go around in circles again quite shortly. Our energy is required in other posts for people that need our help.

It will not add any further value to this forum.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things people say or don't say but it's okay

Postby mpbser » Mon Jul 03, 2017 5:49 am

" to read that someone could blame a cancer sufferer for their disease - especially a sufferer from colorectal cancer which all specialists agree is not the fault of the patient. "

I am getting so sick and tired of people making such straw man arguments. Again, reread the post and see exactly what I wrote, which is actually lifted from the research conducted by "specialists."

Here it is again, from the OP: Bowel cancer is probably one of the cancers where lifestyle habits have the highest impact on risk. (ME: no duh) Therefore, lifestyle habits have the highest impact on cure. In other words, when it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles, it stands to reason that CRC could be reversed by extremely healthy lifestyles.

AND, for your convenience, because it appears that you didn't even link to the corresponding journal articles, here is the one from which the quotation was derived:

BioMed Research International
Volume 2015 (2015), Article ID 871613, 5 pages
http://dx.doi.org/10.1155/2015/871613

Research Article
Awareness of Lifestyle and Colorectal Cancer Risk: Findings from the BeWEL Study
Annie S. Anderson,1 Stephen Caswell,1 Maureen Macleod,1 Angela M. Craigie,1 Martine Stead,2 Robert J. C. Steele,1 and The BeWEL Team3

1Centre for Research into Cancer Prevention and Screening, Cancer Division, Medical Research Institute, Level 7, Ninewells Medical School, Dundee DD1 9SY, UK
2Institute for Social Marketing, University of Stirling, Stirling FK9 4LA, UK
3University of Dundee, Nethergate, Dundee DD1 4HN, UK

Received 4 May 2015; Accepted 8 July 2015

Academic Editor: Fränzel van Duijnhoven

Abstract

It is estimated that 47% of colorectal cancers (CRC) could be prevented by appropriate lifestyles. This study aimed to identify awareness of the causes of CRC in patients who had been diagnosed with a colorectal adenoma through the Scottish Bowel Screening Programme and subsequently enrolled in an intervention trial (using diet and physical activity education and behavioural change techniques) (BeWEL). At baseline and 12-month follow-up, participants answered an open-ended question on factors influencing CRC development. Of the 329 participants at baseline, 40 (12%) reported that they did not know any risk factors and 36 (11%) failed to identify specific factors related to diet and activity. From a potential knowledge score of 1 to 6, the mean score was 1.5 (SD 1.1, range 0 to 5) with no difference between intervention and control groups. At follow-up, the intervention group had a significantly greater knowledge score and better weight loss, diet, and physical activity measures than the control group. Awareness of relevant lifestyle factors for CRC remains low in people at increased risk of the disease. Opportunities within routine NHS screening to aid the capability (including knowledge of risk factors) of individuals to make behavioural changes to reduce CRC risk deserve exploration.

and

5 Lifestyle Tips that Lower Your Risk of Colorectal Cancer
By Amanda Chan | October 27, 2010 02:23am ET

Keeping a healthy lifestyle — by refraining from smoking, limiting alcohol intake, eating healthily, working out and maintaining a small waistline — can go a long way in preventing colorectal cancer, according to a new study.

Nearly a quarter of colorectal cancer cases could be prevented by adhering to these five lifestyle recommendations, said study researcher Dr. Anne Tjonneland, of the Institute of Cancer Epidemiology at the Danish Cancer Society in Copenhagen.

"Bowel cancer is probably one of the cancers where lifestyle habits have the highest impact on risk," Tjonneland told MyHealthNewsDaily.

If you have such a problem with these data, please take it up with Dr. Anne Tjonneland and Annie S. Anderson,1 Stephen Caswell,1 Maureen Macleod,1 Angela M. Craigie,1 Martine Stead,2 Robert J. C. Steele,1 and The BeWEL Team3
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Things people say or don't say but it's okay

Postby jep » Mon Jul 03, 2017 6:15 am

Good morning. As I read your signature (Mpbser) describing your DH's situation, it's almost as if I'm reading my DH's description. Their surgeries were just days apart and they share many other factors. I've never been through anything like this in my life, and I've never been more scared than I am now. Things are getting better emotionally around here, but as I read through many posts I'm realizing that this is a long road we're traveling. I look at my young daughters and think, how can this be happening to them? To us? I truly hope that your husband finds great success in his treatment . . . My DH starts chemo on 7/17 and we're praying for the best possible outcome. Stay strong and stay positive! And good luck with your appointments in Boston.
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20


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