What would you tell another cancer patient about the CC?

[NWgirl]

During my appt. today I told my oncologist I was planning on attending Call on Congress. He hadn't heard about it so I told him what little I knew that I'd be doing. Next month my oncologist will be giving a talk to a group of patients/caregivers at one of their offices about colo-rectal cancer. He asked if I would mind coming and speak to the group after he is done about my experiences with The Colon Club, The Colondar and how this has helped me in dealing with my disease. So I wondered, for those of you who love The Colon Club as much as I do - what would you say to a group of patients/caregivers about The Colon Club and how it can help them? I know what it has meant to me - but would love to hear input from anyone who cares to chime in so I can incorporate it into my talk.

[hopeful]

I like that it gives people an idea of what to expect during chemo and what side effects are normal and which might be something to worry about.

[pmterra]

As a caregiver, I had so many questions - some that I didn't even know I had ! I didn't find the Colon Club until well after we went through surgery and chemo. I wished I would have found it sooner! The compassion and understanding is so appreciated as a spouse worrying about what the future holds. I feel like I'm in a better place as far as dealing with cancer emotionally. I still come here to help other caregivers get over the shock and devastation of hearing "it's cancer". I never knew there were so many places to go for services when we found out in 2008 so i felt very much alone as no one in my family or group of friends that had gone through this. I feel like I'm giving back by helping others and I'm so grateful to be in a position to do that. It's amazing to me how close you feel to people that you have never met and how much a part of your life they become. For me it's also helpful to learn from other colon cancer patients about what they are going through and what they need from their caregivers. I have referred this site to many people that I have met who need answers and need to know that they are not alone. Hope that helps

Paula

[Phuong]

Wow, where to begin? I've told people abou the CC and one of my favorite reactions was "oh, it's like AA for people with colon disease." We can come and go depending on where we are at physically and emotionally, but the crux of it is that we come here for support when we need it to find people who understand what we are going through because they have gone through or are going through the same things. Those of us who have made it into NEDsville want to "pay it forward" for the kindness and support that we received in our own time of need. Whether this is through the sharing of tips/tricks we used to get through treatment, provide hope by kicking cancer's ass, sharing o/t things affecting our lives (good and bad) or sending prayers and I5's, it all is done to connect to people who truly do get it and allows us to share things that a vast majority of us wouldn't be able to share with our family/friends because no matter how wonderfully supportive they are, they simply (and thankfully) never have had to go through what we do. I think that's as short as I can make it because I could go on and on about this fabulous group of people!

[Granny]

1. Feeling you aren't alone with this monster.
2. Support from those who have been dealing with the monster longer than you and are better able to explain procedures, medications, etc.
3. The ability to verbalize your ups and downs and know that your still loved!
4. The treasure chest of links to updated information that you don't always have time to search out.
5. No discrimination due to who you are or where you are.
We share a common goal. We either want to survive or care for someone we wants to survive. We are genuinely happy for those with good news and our hearts bond as one for those who don't survive this monster.
Granny

[Surroundedbylove]

In addition to the above suggestions - that is is a very active support group - available 24/7 - even when you don't feel up to going to an in person support group.

I have loved the intellectual strength of so many who share here and I've learned so much from them

I also have appreciated that there are so many rectal cancer patients

Finally, that there are many other "young" people.

SBL

[jjlist]

I ditto granny
and
the 24 7 availability is comforting in those dark night hours
when we cant sleep.

[Jachut]

I find I get my real emotional support from real life - family, good friends etc. I dont come here for that so much. Its more that there are so many disgusting questions you have with this disease and I am not, and will never be, comfortable with bothering my surgeon with the minutae of my bowel function. As long as I'm continent, and dont have diarrhoea, that's his idea of a good outcome.

But the stuff I want to know I could only ask here - why is my poo sticky, why am I always dirty when I wipe (even if I only had a wee), why do I have gas that could burn holes in your nostrils - and mine are the mild ones. People have truly stomach turning problems (to the CRC uninitiated) such as fistulae and only on a forum like this can you simply discuss these things and have a whinge about it (even if you're not actually seeking advice). I've found rectal cancer (and my close friend who has a recurrence of anal cancer agrees) even as distinct to the catch all term of "bowel cancer" really makes people disgusted and uncomfortable.

I truly dont think I'd have joined a forum at all if I'd had breast cancer or skin cancer or something more socially palatable.

[Guinevere]

I found answers to question on how to deal with the side effects, support and comfort when I'm frustrated, humor about something that, for the most part, isn't funny and a comraderie with people who have been or are going through a lot of the same struggles I am and they get it. I'm also able to help some folks now get through things I've already gone through and I love that. I feel acceptance here and that's a big thing because this disease seems to make one feel isolated even when they have a good support system in "real life".

[helen098]

AA for people with colon disease." --- i really like this statment ......

[Mona6518]

I concur with so many other statements here that the only thing I can think to add is this....

No where 'gets' me so well and would understand this kind of humor...

While mentally preparing myself for 1st surgery, I mention to hubby....
"You know I may wake up with a bag right?
Yes.
How do you feel about that?
I think as long as you'd agree to stop eating corn, we'll be fine."

[Candyys03]

On the CC you can talk to others going through the same thing,that you are not alone on your journey.Learn about colon cancer all that comes with it. Get advice.Share good times and bad times.Make new friends,encourage others.Even in the middle of the night.

Candy

[Jen]

My view of the Colon Club:
Knowledge is power and makes things not so frightening or insurmountable.
Here you learn from others who have been on the journey for a while, connect with those who are new, and even learn from those who have passed - know what to expect, what to do, how to enjoy life and put cancer in it's place.
You learn from the strength of others. New therapies, treatment options, what to expect, side effects and their remedies. Soulful inspiration, celebrating milestones, dealing with grief, loss, getting life in order, financial planning.
Humor friendship differing views.
I have gained so much knowledge from this group and the angels who were once here, that I feel it has transformed my cancer experience from a place of darkness and isolation (not knowing anyone as young with a similar disease) to a huge learning experience knowing how others lift themselves up, endure, move on, and savor the sweet things in life. This shows people how to LIVE with cancer at whatever stage regardless of the unknown future.

[BrownBagger]

This is where people "get it." Pretty hard to find that level of understanding and empathy anywhere else, I think. And if you don't "get it" when you first visit, we make sure you do before long.

One of the things I really like about this site is how active it is. Most other message boards, you post a question and wait a week for someone to answer. And most of those sites sell advertising. This, I don't get--obviously, nobody is visiting those sites, so how much could you possibly charge for ads? I'm not saying the CC should sell ads, but we'd sure be a better market than some of those other support boards.

[shellfry]

I had great support and help during my treatment, but unless someone else is going through this they just can't totally understand everything. I get on here to read the "real" questions we all want to ask but can't ask anywhere else. It's just so you know you're not the only one with whatever problem you happen to be dealing with that day. I finished chemo back in May '11 and still have side effects from that and radiation. Radiation was bad at the time, but I thought it all went away but I was wrong. I've had two colonoscopies since and they still can't get in there. Radiation made my colon adhere to other places so it's "kinked". You can imagine the problems that causes. I also have neuropathy from the chemo, and at the onset of that I was really confused, then I got on here and started a thread asking and got a lot of feedback. It was nice to know what to expect and that it was normal.

Also, where else could you go to talk to about how much toilet paper you go through, how often you have to go, etc.? Everyone is very helpful and it really helps to have this to turn to.