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Science and angels

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Last night I posted a study I found interesting under the title, “New study on meat intake and colorectal cancer.” https://csn.cancer.org/node/311421

Not that I need to explain my rationale, but I found it interesting for two reasons.  First, oncologists generally tell you to run away from beef, but at least for women, this study indicated that consuming beef was inversely related to the initial occurrence of colorectal cancer.  Second, I have noticed that a number of people new to the site question whether something they did led to the cancer.  I thought this study might be some comfort to them since, other than eating cured meats, meat consumption seemed to have little relationship to the occurrence of colorectal cancer.

Maybe I am being a bit cranky since I started this latest course of chemo, but the first reply, entitled “Ugggg,” led off with “to me these studies are worthless.”  The next reply chimed in “I agree,” and so forth.  This hurts my feelings.  I thought the study was worthwhile and I went to the trouble to post it, along with a link, for people who share my interest.  There is no need to trash my effort.

I have observed that a large number of people come to this site for support.  That seems valid to me.  But I am not looking for support, I am primarily looking for information.  I expect there are many others like me, and I expect that being unconcerned about social issues they do not post much. I believe there should be room for both groups on this site.

There is, for example, a string on the forum about angels.  If angels make your life better, more power to you.  However, I am not interested in angels and despite the fact I have an opinion about angels, I do not post it because I do not think it would be helpful to those that believe in angels.  However, I do believe in science and I do intend to continue to post about it.  I would request that people who do not like the science I post give me the same respect that I give to the posts on angels.  Thank you.

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

You have obviously put many hours of research into your posts, and I know everyone appriciates it. I certainly do. 

I am sorry that your feelings have been hurt, but it is understandable and nothing to be apologising for.  

I am really happy to hear that you will continue to post, and not feel 'run off' by negative replies. It shows you are a person of great personal strength and understanding. 

Tru

PamRav's picture
PamRav
Posts: 280
Joined: Jan 2017

and don't be discouraged.  I love your posts and their links.   I'm just not able on my own to find the kinds of articles you post .  I'm more than happy to benefit from your hard work.  Have a nice glass of red wine and congrats yourself on all your hard work!!!

Annabelle41415's picture
Annabelle41415
Posts: 6514
Joined: Feb 2009

That was me and I'm sorry if I've offended you, but I've been through this for so many years and everyone kept telling me this or that (especially one daughter) and got tired of hearing it.  Didn't mean to discredit your post.  I'm aware of where you are coming from so I'll just end with - wishing you the best.

Hugs (and big ones) Kim

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

You are so sweet, Annabelle.  I love it every time I see your picture and read the joined date under your name. A true survivor, even if it does come at a cost. 

You are gracious to apologise. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6514
Joined: Feb 2009

Hugs to you dear girl :)  and thank you.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Thank you.  Apology accepted.  We all face tough times and frustrations.  I only ask that we all try to respect each other and to stay positive.

Annabelle41415's picture
Annabelle41415
Posts: 6514
Joined: Feb 2009

Thanks!  Laughing

Inishbofin
Posts: 11
Joined: Jul 2017

i'm new to all of this.  Was diagnosed in late May with stage 4.  I tend to lurk a lot, but I really appreciate the study info and general support that this board provides.   I'll often read when I cant sleep, and i love reading about the latest studies.  It's definitely food for thought, even if some of the study findings require more follow up and research.   I'm on medical leave at the moment, but I work for a large healthcare organization, and have sat thru my fair share of research presentations and physician  critiques of published research.  (I am NOT a clinician).  There was one specific to colon resection which a colleague presented 2 months prior to my diagnosis, which was really great.  When I was in hospital, I pulled up that info and reviewed it again and had a great discussion with the surgeon re the research.  I love it, however there are times when I specifically want to take a break from ALL of this, but I always turn to this board for info and encouragement.

i just started cycle 4 today....home with annoying FU pump, and I can't sleep!

 Just want to say thank you for your posts.  As a newbie, I read almost everything!!  It's a great primer for someone new to all of this.

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Thank you.

MyJourneywithCancer
Posts: 83
Joined: May 2017

I am here in the forum for the same reason: information.
You got a friend, 'Buddy!

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Thank you.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have to apologise as well because I was that second post agreeing. I'd have done so sooner but I took a couple of days off because someone on here really annoyed me by responding with quotes of something I'd posted, which I really hate and find offensive, and I just didn't want to come on. And you're absolutely right, you are trying to help and have taken the time and do deserve more respect for that. 

I'm so sorry for being offensive. I think for me I just am so frustrated with the science and how little it has helped us and the constant barrage of "oh, this is wrong, don't eat this" and "oh, now it's fine and is actually good for you, eat all you want". And I'm frustrated with the fact that I cannot think of anything that I did to bring this on so the science just annoys the crap out of me. If they know so damn much then why can't they do something about this? I'm frustrated with the money that's been thrown at it, I'm tired of hearing what not to do to avoid getting colon cancer and knowing that I didn't do those things, I'm sick of seeing people who do abuse their bodies that are running around healthy, I'm angry that children get it and wonder why the hell that is, I'm disgusted that I have not once been to my doctor and been given positive news, it's always bad and I'm getting worse and my disease is progressing, I'm sick to my stomach with fear every single freaking day and I'm fed up with feeling like crap and having little quality of life. 

Cancer makes me furious. Why can't they figure out how to just make the body recognise it and get rid of it itself?? Why can't they find cures that really are effective? Despite all the big pharma conspiracy theorists millions of people really are trying to come up with cures and the amount of money spent on it is ridiculous. What's the problem?

I am enraged by all of it. The science that comes up with theories about how to prevent it but really doesn't know, the snake oil salesemen that take advantage of the fear and sell their so called cures that actually don't work and are preying on people who just want to live, even my own bowels that gave me grief and made my life hell as long as I can remember with IBS and now I have this?? Really? Because that wasn't enough?

Sorry, I guess I'm showing how I really feel about it. I try to be positive and instill hope in people in whatever way it's helpful because that's the most important thing to me, hope. If you lose that you have nothing. If it comes from science or hearing the stories of others or from faith, or all three, it doesn't matter. I have hope most days because I have no choice but I haven't been on here sharing my positive stories like others have because mine isn't going so well. I wish it could be me for once but the truth is that I had extra stuff go south with me and now my cancer is not responding and is getting worse quickly and I'm choked about it.

The initial doctor failed me by having me scanned too high and didn't catch it, the colonoscopy doctor didn't think I had anything serious so he put off the colonoscopy. My family doctor had to bug and bug to get it moved up but it still took seven months until I got it done. By then I was stage three. I don't know how fast this grows, maybe it wouldn't have made a difference. Then I had two abcesses at the resection site and was in the hospital twice after the surgery for that. Then I had an infection tunnel under my incision which left me with a hole the size of a man's finger and had to have that packed and dealt with before I could start the mop up chemo. Then, I had several blood clots while on the Folfox and my doctor told me to just take aspirins. Finally one went to my lung and I almost died. If my husband hadn't been home I would have. I had five to seven cardiac arrests before they stabilized me and I've been told since then by the EMTs that they were going to give up because it had been ten minutes. I ended up with kidney failure, a stroke, a brain bleed between the hemispheres and ultimately went into a coma. My family had to make the decision whether to keep reviving me at one point because the neurologist said I'd never be normal and would be in a home forever. When I awoke from the coma a couple of weeks later I was totally paralyzed and spent the next three months learning how to do everything again. At the beginning I could barely turn my head. I didn't start to walk for three months and was sent home still in a wheelchair. I had to get myself back to normal and was back at work seven months after discharge from the hospital. I worked for a year and a half and now my cancer has metastisized to my lung and that's getting worse and they're growing like crazy. The one chemo that was proved to work on my cancer made me toxic and I had to go off of it after one treatment. I'm back on it now and it seems to be okay so far but in the meantime I developed another tumour in my lung.

My point is that I have no reason to trust medical professionals at this point or to trust that my cancer will be beaten. I spend a lot of time thinking about death and what will happen to my family and my animals and our money situation and how we''ll even afford to bury me. The only thing that keeps me going is my hope and faith because science ain't' cutting it right now. You could say that science saved me when I had the blood clot but two of the doctors there told me I had received a miracle and they had no explanation for my survival. My chances were something like one in a thousand to survive and incalculable to have survived and be normal again.

After all that I'll add a little humour. I can't imagine what my family was going through while I was going through that but the day that they took a tube out of my lung and then wanted to put it back in and I was fighting it after I'd woken from the coma my daughter was there. I'll say that in real life I have quite the potty mouth. The nurses kept insisting that they had to put it back in and finally one said I had to have it or I was going to die from the liquid in my lung, I'd drown. So I said "okay, fine, put the 'effing' thing back in then". My daughter said this is when she knew I'd be okay mentally. Previous to that I'd been out of the coma but had been raving and incoherent.

So, long post, sorry. I just wanted to explain why I am the way I am. 

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 1090
Joined: Apr 2017

Jan:  From visiting the forum I know you are nice person and that you have faced great difficulties.  I am sorry for that.  Please also recognize that the situation of people visiting this forum varies, from stage 1 to stage 4, and the strategies and attitudes that people adopt vary as well.  I am certainly critical of the health care system and I think it has many failings.   That is one of the reasons that I am constantly researching non-chemo strategies of dealing with the occurence and recurrence of cancer.  As of now, that is what works best for me.  I share what I find in case others find it useful.  But please understand that when I post something I am not suggesting it is useful to you.  Let us just put this issue asside and move forward, but hopefully with a little more awareness and respect for the positions of others.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I like that, sounds good. Very well said.

I'm not in a good place these days mentally, I have to admit. I know there are worse off people than me so I feel like a jerk when I feel sorry for myself but it is what it is. I feel like I'm not winning this battle at all, which I'm not, and I resent it because I didn't do anything to bring this on and it makes me angry. I'm sick of being scared and having anxiety. It makes me angry how much this takes from us and there's no respite. I guess for some who end up NED there is but not for me. It's wearing me down and I'm sick of talking about it and trying to be positive.

Jan 

NHMike
Posts: 214
Joined: Jul 2017

I know a little as to what you feel as the treatments ratchet up the pain and discomfort over time and I do worry about spread. But you do help out a lot of other people here and the smile on your picture gives me the impression that you're a positive person.

I have seen people wind up NED from stage 4 so there is hope there. Anger, fear, anxiety. I like to sing psalms during radiation treatment. I should read Job soon. Maybe an in-person support group could help?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for the support Mike. The picture was taken on a good day not that long ago, maybe a couple of months but I don't have many good days now.

I just need to get some genuine good news. I found out today that my next ct scan is on September 25. If this chemo hasn't worked I don't know what we're going to do, I've run out of options according to what they say. I'm terrified. I'm so sick of thinking about cnacer and reading about cancer and worrying about cancer and it hovering over my life like an evil entity. I might take a break from the forum, I don't want to bring anyone else down with my bad attitude.

Jan 

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Jan, I really hate that you are feeling bad but some really genuine good news is that everyone here is loved and no matter what, you have already won the fight.  You are just on cruise control at the moment.  Good luck on your upcoming scan and I will continue praying for good results for you.

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