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I'm trying out a new pair of shoes with a couple miles to go...

son of hal
Posts: 117
Joined: Mar 2011

I really don't post much anymore since being out of any treatment for awhile now. I still lurk and try to catch up but it's usually just too mentally time consuming. I find after reading a bad news post then contemplating a reply, I would think about it for hours afterward and it just stays with me. I really don't know how so many of you do this but I commend you for it. I remember when it was earlier in the fight and I was going through treatment I felt different about this forum. I felt like I belonged here with common goals and hopes for survival. I also couldn't foresee a time when I wouldn't want to be on here. But things are different now. The losses add up and the guilt kicks in. I understand more now why people "in the clear" don't stay involved. Heck, I'm not even sure that I'm "in the clear". I was NED after surgey fourteen months ago and still after a clean scan last month but I had a short nine months of NED two and a half years ago so I don't trust that designation anymore. Anyway, I guess I'm just going through a phase in the life of a cancer patient. I wonder if someone has studied the stages (phases) of living like they have dying. In high school they taught a class about death and dying that discussed the 5 stages of dying. There was denial, anger, bargaining, depression and acceptance. As cancer patients I think most have experienced some, if not all of these even if we aren't obviously dying. I know after my diagnosis I went through these stages in about a month. The final acceptance stage kicked in the survival mode which led to the fight we all find ourselves in. I guess in a way these same stages work after cancer as well. Denial would be the doubt I feel after a clean scan thinking maybe they missed something (don't get my hopes up). Anger might be looking at what we've lost due to cancer that we now have to live with. (ruined credit, new debts, physical discomfort as well as severed body parts and relationships). Bargaining could be the lies we tell ourselves about "getting healthy" or stopping smoking, drinking alcohol or drugs once we officially beat cancer. Kind of like a New Year's resolution you make every year only to give up by March. The Depression stage would naturally follow the bargaining stage believing that you may actually live through cancer where so many have not and wondering why you are considered lucky just to be alive and have all this screwed up debris (physical and mental pain) in your life left behind by cancer. Finally, Acceptance. I can guess what this stage might be like although I'm not there yet. I'm not sure when it will come for me but statistics imply I should see it in another 3 1/2 years, hopefully...
What this all boils down too is a long winded apology for not being more "involved" here after I recieved so much information and assistance early on in my fight. I chime in when I think it might help or on a subject I'm familiar with but it just doesn't seem like I have that much left to give. By the time I read a post there are better answers than I could offer and most of my replies truthfully could be "yea, what he/she said".
Lastly, it came to mind about trully understanding a person only by walking a mile in their shoes. Well, previously I couldn't trully understand what it would be like to face my own mortality after a cancer diagnosis until it happened to me. Now I'm finding it equally difficult contemplating life and emotions without cancer, even for this short time. So, acknowleging that this is an incredibly caring and understanding group here, my only other sentiment would be for others to understand that it's not always because someone doesn't care, when they don't post. Sometimes, it's that they care too much...

For now, Ive got a new pair of shoes and I'm gonna wear the heck out of them...
Take care, God bless,
CJ

steved
Posts: 836
Joined: Apr 2004

Thsnk you for vocalisiNg what a lot of people would have felt at times About their illness and about this site. Having had a long on and off relationship with this site I can understand your feelings. I genuinely believe that what you are are talking about are stages of 'recovery' in cancer. It is a word I like as it doesn't necessary assume cure or going to back to how we were after before cancer but about moving forward in life despite what we have experienced or continue to have to deal with. One of those processes is about cancer taking up less space in our lives and other more 'normal ' aspects of life beginning to recur. In that I think people's time on this site often diminshes as their recover and that is a healthy process and not one people should feel guilty about. I am impressed by those that remain but am also aware that for many moving on from this site is an important part part of their recovery.

Thanks again for the eloquent and thoughtful post- your contributions are valued and reflect the long experience you have in this journey that many here benefit from,

Steve

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

CJ

Amen.

Thank you so much for this post. So glad you're doing well.
I don't have much more to say than what You Said!

I need to show this to my wife, as she wonders why I keep coming back to this site.
As I'll take a week off or so because the bad news overwhelms me... but I come back so I can "repay" the favor that many others did for me. And, I'm pretty certain you were one of those "many others".

I joined here one year ago, after I learned my "bad news".
but this past year has truly been the worst and best year of my life.

Hugs to you and Thank you for your awesome words.

(can you send me a side note as I'd like to hear about your treatments and reversal... sounds like we are about the same age and have gone down a similar path with this stuff).

cheers!

Joe Metz

joe.met@metzgers.com

son of hal
Posts: 117
Joined: Mar 2011

Hi Joe- Thanks for the "pat on the back". I'll catch up with you soon.
CJ
PS. Love the new profile pic. much better than a hospital bed...

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

There's certainly no "need" for an apology nor should you feel guilty because you're doing well. But I think it's great how you've been able to put into words what I imagine many people have felt. I've had similar feelings with doing better than some and even better than some who see my Oncologist.

I think it's a Crap Shoot (for lack of a better word) at times as to who does well and who doesn't.
Thanks for checking in and for writing such a great post.
-phil

YoVita's picture
YoVita
Posts: 562
Joined: Mar 2010

You expressed yourself so well. Many of us are going through what you described. Although I understand where you're coming from, I hope you check in once in awhile if only to say "yea, what he/she said". Best of health to you.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

I sometimes mention to my wife whether this site does me more harm than good. It's usually after reading a post with tears in my eyes, especially lately with many of our folks here not making it, or in tough situations. But that's obviously inherent in a board such as this. I'm often at a loss for words, and like you put, CJ, someone has said it better already and you basically just wanna say, "what he/she said." But you wanna be supportive because other members have been so supportive of me, with information, understanding, and simply giving a damn. When you come here new, you're scared to death, with lots of questions, many that can't really be answered. Now that I've been here awhile -- a whole 9 months, lol -- I understand things much better -- mainly because of this board. I would be totally lost if I didn't have you guys, so my answer is always "more good than harm." I feel a responsibility to "pay it forward" by being there for others, and offering what little insight I may have gleaned with my fight of this damn disease. I don't know how I'll feel as I progress, good or bad, but I wanna stick around and do what I can to support others. Or be given support and encouragement when facing challenges that will inevitably come. You tapped into a lot of feelings, CJ, and put into words what I've thought but couldn't express. Which, again, is a reason to be a part of this -- because you folks are the only ones that really understand this journey. Good job, CJ. Dan

lauragb
Posts: 368
Joined: Aug 2011

Wow CJ! I feel like you are channeling me on here. Thank you so much for taking the time to post this. I too have been conflicted about my participation in the forum. I had recent NED scans and can now say I've been NED for a year since my first surgery. I am happy but still trying to deal with it all. Thanks to Steve for calling it the stages of recovery. I have felt everything you described. Approach-Avoidance, I hate bad news but want to know how people are, plus I feel a connection to folks on the site, common experiences. Well, I could go on but it's WHAT YOU SAID. Thanks again for putting this out here.

Laura

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hey,

I love your post ~ you nailed the emotions of having / had cancer. Thanks for sharing and wear out those new shoes walking!

"Minnesotagirl"

danker
Posts: 769
Joined: Apr 2012

I hope none of you are in my shoes. I'M comming up on three years since dxed and apparently still Ned. Two weeks ago I had to put my wife of 55 years into a home for Alzheimers patients. She got so she needed more care than I could give her myself. So I may be "Cured" only to watch my beloved die by inches before my eyes. A rough walk to say the least. May you all have an easier path.

YoVita's picture
YoVita
Posts: 562
Joined: Mar 2010

Alzheimers is a wretched disease - especially for loved ones. Try to get as much help as you can for your new rough walk.

son of hal
Posts: 117
Joined: Mar 2011

So sorry for your situation, danker. Fifty five years is something to be proud of. I am one who still believes in marriage and feel, asside from your current situation, you have been blessed. While I'm not overly religious, I hope you can still find the blessings in your life.
Please take care,
CJ

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

I'm so sorry about your wife.
I hope she's getting very good care, one can only do so much.
-phil

danker
Posts: 769
Joined: Apr 2012

I hope none of you are in my shoes. I'M comming up on three years since dxed and apparently still Ned. Two weeks ago I had to put my wife of 55 years into a home for Alzheimers patients. She got so she needed more care than I could give her myself. So I may be "Cured" only to watch my beloved die by inches before my eyes. A rough walk to say the least. May you all have an easier path.

danker
Posts: 769
Joined: Apr 2012

I hope none of you are in my shoes. I'M comming up on three years since dxed and apparently still Ned. Two weeks ago I had to put my wife of 55 years into a home for Alzheimers patients. She got so she needed more care than I could give her myself. So I may be "Cured" only to watch my beloved die by inches before my eyes. A rough walk to say the least. May you all have an easier path.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

so sorry about your wife. after 55 years i know it is hard on you but she will be well taken care of by them & you.
hugs
judy

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for your post
judy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I need to buy a new pair as well.

all the best and god bless.

hugs,
Pete

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

CJ: You summed it up perfectly. I joined this Board after completing tx, but am so glad I found all you folks.
Danker: How very sad for you.....
Hugs and more hugs,
Tommycat
DX 2009 Stage 3 rectal cancer currently NED

son of hal
Posts: 117
Joined: Mar 2011

Thanks for all the positive feedback, folks. I knew I couldn't be alone in my feelings and observations. This is one of the great things about this forum. When it gives us the knowlege that we are not alone in this no matter how crazy things seem sometimes. Knowing this, also takes away alot of the "why me" feelings when no one close to you is in a similar situation. Many people here expressed how they wished they knew about this site earlier in their treatment and I wish I had too. Not only for the valuable information but for the fellowship and communion these forums create. It's known to be therapeutic to share such things and maybe that should be a discussion that takes place when people are diagnosed. What does it take to change something like that? I remember my oncologist saying "counselors are available if you'd like to talk to someone" but I didn't think it was important at the time. Maybe it should be standard protocal? I don't know, but the number of members here and other similar forums is so small compared to the number of new cases daily that I think something in the system is missing.
Anyway, I wish the best for all of us here and hope I can continue to "share" now and then.
Take care,
Cj

Sundanceh's picture
Sundanceh
Posts: 4340
Joined: Jun 2009

Standard Protocol?

Maybe...I suppose that they could at least make folks aware that a program was available.

But, I think the overwhelming reason you don't see more folks in any kind of support group stems from the stigma attached to what that represents. Alot of folks are just not good at expressing themselves for whatever the reason is.

It might be an admission that they 'need help'...and they don't want to acknowledged that they are now "one of them."

I think for many (myself specifically) that cancer knocked down the last wall of pretense that I had been carrying...I was stripped naked physically and emotionally. That manifested itself in me trying to find an avenue to reach out to others...I just needed someone to listen to what I had to say.

And on this forum...I've been blessed by that.

Counter-point to that...

When my sister was murdered, the DA mentioned a physical support group for the families of murder victims...I declined...did not feel that I needed that...felt uncomfortable with it...thought I could move on without any help.

Did I?

Yeah, I think so...don't know if I would have benefited or not...I turned hard and my motto became "I don't get hurt - I do the hurtin'"

A stark contrast to what you see before you today:)

I was hurt and I internalized it and buried it so deep, it's still hard to find...but I made it through okay.

The first 5-years of my cancer journey, I walked alone...just me and my thoughts...just waiting for the opportunity...which then came in the form of this board when I accidentally stumbled into the room head first.

My role was different...I had experience...I came to help...not to be helped. I still don't think I've ever asked a cancer question in my time here yet...I came here...and stayed here for the people.

I believe the words you used were..."fellowship and communion."

No arguments that those are my bread and butter...new folks come here for the information...and some stay because of the relationships that are formed.

I think I would have still been okay had I never found this place...I have always been able to live within my own mind and I've had a lifetime of tragedy to teach me how to cope with the situation at hand...even if I know nothing of the subject itself...like where I'm at with all my dad's mess.

And yet, my life probably would never have evolved to where its at without the deep, warm relationships that have been cultivated here. X's and O's are always relevant, but it's the deeper, human connection that keeps one tied to a site or whatever it is that helps one.

Info is everywhere...but, that's not really what we are looking for, is it?

No, the bottom line is we are interested in shared experiences and how they relate to us.

We are interested in what the other person went through or has done - so that we can readily identify that their story closely mirrors our own. That's what makes good drama. It has to be real...because it's the real that sells you...it's the real that makes people identify with your case - and more to the point, who you are.

For every season - there is a reason...

And everybody has got to come to the light in accordance with their needs and where they are at in their life.

Years ago...I would have never considered counseling or needing help.

My help from the community has come about in a much different way as time has passed...

The validation, love and acceptance I've received here from so many of my friends has been invaluable to me in ways that would have been unimaginable in another lifetime. That's been the salve I try and use to heal my wounds.

Educating patients that programs are availabe should be more readily offered and even encouraged, I agree.

Along with that though is the ever prevailing thought that everyone has to come to that fork in the road on their own recognizance and initiative for it to be meaningful and beneficial.

You seen A&E's show...Intervention?

One must want help to receive help...and I think that's why you don't see more participation on the various forums that you are visiting. These forums represent only a microcosm of the population that is affected.

It's hard for people to get help...even if they are pointed to where the help is.

The old adage applies here..."You can lead a horse to water - but you can't make him drink."

That's evident here of course, as many patients and/or caregivers choose not to participate and let their significant other carry the torch for them for reasons that are their own.

As with all living creatures, we handle our situations according to one another's gifts.

But, your point is well taken. Glad you are doing well.

-Craig

Aud's picture
Aud
Posts: 477
Joined: Oct 2009

CJ. I appreciated your post and your contribution is valuable.
~Audrey

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