:bouncing: I got this idea, after reading words from CD, to open a new thread where anyone can "vent and ramble" anytime. We all have good and bad days and perhaps we can take the good days and post a funny note and on our bad days, we can just express feelings, frustrations, anything...

The support that I found in this excellent group is the best thing that has happened to me in the last 10 months.

:wave: Love :wave: ,
Tonia

I think everyone will agree with me when I say that we are glad it helps. :angel:

I think everyone will agree with me when I say that we are glad it helps. :angel:


Jaydees, that is a very lame Vent or Ramble :jester: :D

Ktee:
It's been a while since we have heard a vent or ramble from you...??? ;) :D :jester:

*ATTITUDE IS EVERYTHING*

Ktee:
It's been a while since we have heard a vent or ramble from you...??? ;) :D :jester:

*ATTITUDE IS EVERYTHING*

You will probably get one next Friday when my inlaws move in around the corner !!!! :dizzy:

Oh, Ktee, what fun!

He's a rant sort of. Yesterday I went to the oncologist to get the results of my cat scan. He said everything was normal. Not all the blood test were back, but he felt no unusual lumps or bumps anywhere. Now the rant-yesterday morning I was getting dressed-just took a shower, shaved and was wiping water off the counter and the front of the vanity. I bent and twisted funny and got the worst pain in my back. My first thought was, how do I straighten up? Very slowly, I found. I took an Aleve because it was close and it said it was for pain. I figured when I was at the Dr. he could prescribe something stronger. Well, he said, you did the right thing, continue taking the Aleve. It would be nice to have something stronger. My other rant-there does not seem to be the same kind of organized fund raising for colorectal cancer that there is for some of the other cancers. At least locally, there is Race for the Cure, Golf for the Cure, Cook for the Cure (I am not against funding for the other cancers, my wife had breast cancer 5 years ago), a casino night for pancreatic cancer, a golf tournament and walk for leukemia and lymphoma, events for lung cancer. I would love to organize a fund raising dinner for colorectal cancer, but I don't even know where to begin.

Edinaman

yep we get all charitied out here too but I noticed that our onc. clinic usually had something going on ..... but often across the spectrum of cancers. Have you tried contacting your local "stoma assoc" ..... or similar.

A couple of years ago we had a stall at our local village fete. The fete is like a street party kind of thing with lots of different local charity stalls and we have a big knees up too. Well, a friend of ours who is also a bowel cancer survivor decided to hold a stall and competition to raise funds and awareness. It was a real hoot. The competition was "Gurning". Don't know whether its known beyond the UK but it involves framing your face with a toilet seat (thats the link to the bowel cancer !!! ) ,preferably decorated in some kind of fashion and pulling the uglist face you can manage. Anybody with dentures gets a head start cos you know how they look when the take em out (apols to anyone who is toothically challenged). Anyhow the stall raised £150 which isnt bad considering its a small rural village.


Anybody else got any ideas for Edinaman.

regards
ktee

I don't know that will fly in the US... especially if you want people to take Colorectal Cancer SERIOUSLY...(NOT that I'm not up for a good laugh, but...) you don't see people making jokes about breasts for breast cancer at charity functions do ya? Or, showing a dummy with a breast lopped off just isn't tasteful to me.? I don't know, maybe I take it too personally, but I think it SHOULD be taken seriously. And a majority of the people who would attend a charity function ARE survivors or people fighting...But maybe there is a way you can poke fun a little without it being so not serious? In any event I do think the charity thing specific to colorectal cancer is a GREAT idea.

As I posted on another thread, Katie Couric, a national US anchorwoman has made her cause real when she opened the Jay Monahan Center for Gastrointestinal Health in NYC. You don't have to do it national, but may start with some of the local associations. If you google some stuff, you will see that survivors usually start up something... Contact them and see if you can get a local event together. Don't go it alone, though. Seriously, there are people out there...people in the US have made Calandars, a Giant Colon to climb thru that they take around to big malls where you can see where the different problems occur-- tastefully done though. You can search for these things, and they DO have contact info. It might just go national in that case. Just my 2cents!

~CD
PS THANKS FOR THE POST TONIA! :)

Think the meaning of gurning is probably lost in translation and the brit sense of humour. Toilet humour is our forte !!! we did the stall to raise funds but primarirly to raise awareness. I know it was nowhere near a black tie bash but hey, im in deepest darkest rural england :jester: a village knees up is the best we can get. We got some posters from the Bowel Cancer Assoc (UK charity)
http://www.bowelcancer.org/
and their campaign at that time was something like "have you checked your number two's lately". They tried to get their posters on the door of every cubicle in every public toilet in the UK. They also ran a "loud tie" campaign at that time.

Their webiste , btw, has good info on bottoms in general from "The biology of your bottom" , "When bottoms go wrong" and " Talking about your bottom" . Its a great way to break the myth of "not talking about your bottom" . Thousands of people are, quite literally, ‘dying of embarrassment’. The British stiff upper lip means there is still a stigma attached to discussing bowels and bottoms. I dont suppose this is any different in anywhere else in the world.

Um..... whilst im on the subject ...... Cdad mentined that "you don't see people making jokes about breasts for breast cancer at charity functions do ya" ...... nope i would hope not. but humour and having fun (whatever the form) does draw an audiance and can deliver a message.

anyhow thats my two pennies worth

nite nite all
ktee

Kt and CancerDad, thanks for the info and suggestions. I think that giant walk through colon was here a few years ago. I don't remember if it was at a museum or the Mall Of America. Like most people, at that time, I didn't want to know about any of this "stuff".

See Ktee, that's my point too... you would never see something like that about breast cancer, and WE WOULD BE SO OFFENDED IT WOULD NOT BE TOLERATED... and that's because people DO take it seriously, NOW. I think were on the same page.. just confused semantics with the translation/cultural thing... You are SO right, humor CAN be great to break the ice-- as long as it's followed up with the understanding that this IS SERIOUS STUFF. And like you say "Thousands of people are, quite literally, ‘dying of embarrassment’." That's UNACCEPTABLE. Nobody talks about it for reason of embarrassment.

That's why I mentioned Katie Couric... she actually HAD her colonoscopy live on air after losing her husband to the disease so people could see how easy it is (I mean covered under sheets of course).. That worked to show people, and colonoscopy rates increased in the US after that airing. So if the "gurning" worked where you are, that's GREAT. TOO MANY PEOPLE are going though this, and IT DOESN'T HAVE TO BE LIKE THIS! Colorectal cancer CAN be caught early for EVERYONE and thousands can be saved if we just TALK ABOUT IT! "Every four minutes, someone in the US is diagnosed with colorectal cancer. Every nine minutes, one of them dies."

God, it's so infuriating!!! Even listening to posters, and my experience, doctors don't take it seriously, and can't talk about it... WHY?? We MUST DO MORE TO CHANGE THE PERCEPTION. I'll tell you, I, AS A SURVIVOR HAVE MADE IT MY LIFE MISSION, AND WON'T REST UNTIL PEOPLE CAN SAY POOP AND GET THEIR BUTTS INTO SPECIALISTS FOR COLONOSCOPIES!!!! I hope others on this board feel as strongly!

Best of Luck to EVERYONE,
CancerDad

Edinaman:
I actually have the information... they are taking it around the US... A survivor started it, and it continues... it might have been a little while since at your mall, but IT HAS BEEN at major malls, like Mall of America. Those are some great contacts... and like Ktee suggested, contact support groups, and Ostomy support groups. There are charities out there, you just have to look to get affiliated with them to bring your idea to life.

CD

Sadly, it seems like Katie is the only one who tries to educate people about colo-rectal cancer. I may be wrong, but she is the only one I ever see trying to shed some light on the disease. It seems as if most people still have no idea what it is or are afraid to even take it into consideration. Most people still assume it's a disease that only strikes older people, even some doctors! Unfortunately, most people only begin to acknowledge the disease after it strikes someone close to them or themselves.

Kewpie

Sadly, it seems like Katie is the only one who tries to educate people about colo-rectal cancer. I may be wrong, but she is the only one I ever see trying to shed some light on the disease. It seems as if most people still have no idea what it is or are afraid to even take it into consideration. Most people still assume it's a disease that only strikes older people, even some doctors! Unfortunately, most people only begin to acknowledge the disease after it strikes someone close to them or themselves.

Kewpie
Kewpie:
Sadly you don't find mine, or Maz's, or JDee's,or Edinaman's, or Goody's, or Ruth's, and countless other consistent Posters who have been here through thick and thin helpful and educational. I commend Ktee in her crusade, and respect her wisdom and the education and advice she has provided. I would like to extend the same commendation to the ones I have listed, and still others whose names just escape me right now. Thank you all who have taken time out to help others in the same way we all have, in the crusade to obliterate the IGNORANCE that exists surrounding colorectal cancer. As with most causes it takes something close to home for us to become involved. Even Ktee and (Katie Couric as I reference) has battled colo-rectal cancer with the rest of us, for themselves or loved-ones, and now take on this fight together with us all.

However, the post you posted, which I quoted above, sounds JUST like mine on this same thread~but, people feel as they do, and you are entitled to your feelings. I am saddened if the advice and understanding we have demonstrated to you has not been sufficient education.

I, for one, am glad that in the past I have received compliments and thanks on other posts. It has helped to let ME know that OTHERS HAVE HEARD ME. Because as I have said, IF I can help just ONE other person from enduring the same agony that I have had to these past two years, I would in a heartbeat. This is why I have stated, again on this thread and countless others, that I have made EDUCATION of this disease my LIFE'S EFFORT. :)

Best of luck with your colonoscopy.

Warm Regards Nonetheless,
CancerDad :angel:

*ATTITUDE IS EVERYTHING*

Kewpie.. you are so mistaken here.. CD has done the very very most of trying to educate people on the issue and also very much on the issue of getting a colonoscopy. He has helped me so much to try and understand whats going on and comfort and support me..
We have tried to support the newbies that come here with questions when we can.
and YES like CD sorry if we havent been able to support and help you

Take care
maz

Ozzie Osborn's wife also had CC and did some educating about it but I don't know how much of an audience she has compared to Katie Couric.

Now a vent;

I have a sore throat. Not a big deal right? Except that I have had this, a feeling that there is something stuck in my throat(not exactly 'sore' more annoying), for several weeks now. I figured it was the beginning of a summer cold but it has never left. Now, starting last Friday it progressed and feels bigger and makes me cough often but I do not feel like I have a cold.

So I called my doctor, the earliest I can get in is Sept. 14. With the influx of summer visitors in this area and covering for other doctors on holidays they get backed up like this. Normally the wait is about 1 - 1 1/2 weeks, not 3weeks +. Well at least I know that if I still have this then that I will need to see him and if it does go away then I can cancel the appt.

Of course this would not be a big deal except for that part of my medical history that I share with all of you. I am a practical person but here I go again with that niggling little voice in the background of my internal dialogue that says, "mets, throat cancer". I do have low thyroid and take a low dose of thyroxine for it. Does anyone know if the throat is a common met location or if thyroid conditions can cause such an effect? :confused:

JDees:
The throat is DEFINITELY NOT a common mets spot. The only thing that I would be concerned about, well the major one, is your lymph nodes. You can feel your neck yourself... up towards the jaw, manipulate on the sides behind your jaw and up and down the neck to feel for swelling and for tenderness. Also, the right lymphatic vessel is located on the right side... duh!! CD, hence the name! This is the major vessel that the upper nodes drain into. If it IS inflamed... means you have something going on viral, bacterial, or dare I say it, something worse. Also check out the axial nodes... under the armpits and down toward the breast (chest). Again, feel for swelling or lumps and tenderness. Mediastinal nodes are harder to feel for, but if they are tender, the chest would hurt too. Just palpate on either side of the sternum.

Lastly, I would just pay attention to your breathing... any problems lately? Now that I say to check for breathing is when you get the 'med school syndrome' and notice something wrong with every breath. Try to be objective though.

Now, I'm sure you don't smoke or chew, right? :nono:

If all checks out, and this is the soonest you can get in, I would try to relax, easier said than done...we survivors tend to think a sneeze is something with all we have been through. But try. And see if the symptoms dissipate in another week. Could just be viral. Think too if any other symptoms are present... any weight loss? If all else fails, instead of waiting so long, can you get in with your general physician or oncologist (you don't mention which, but I'm assuming you are trying your GP-- what about your onc? May get you in sooner, and draw CEA's)?

If none or even some of these things are true, it doesn't necessarily mean anything, so TRY to relax. ;)

I hope that helps JD, and as we always say, keep us posted, and keep venting/rambling as needed. Hang in there! :)

Fondly,
CDad :angel:

Cancerdad,
I'm sorry for the misunderstanding. I meant people in the public eye. Not everyone comes to this message board so they're not going to read what gets posted here. I've learned a lot from many people on this message board! If only more people came here. To be honest, your story is one of the main reasons I've decided to go through with my own colonoscopy (even though I'm a little scared).
Yes Katie has helped a lot, but people are still dying. Perhaps more celebrities could step forward and share their colonoscopy experiences to let people know it isn't so bad. However, I'm not expecting every celebrity to do this. I know Judge Judy (for example) shared her colonoscopy experience a couple years ago. People seem to listen to their favorite celebrities. I bet if someone like Oprah did a show on this topic it would raise a lot more awareness on the disease. She has a very large fan base.
If more people like Katie Couric would attempt to educate people about colo-rectal cancer then I think it would help tremendously. She seems to be the only 'celebrity' trying to make a difference.

Kewpie

Kewpie:
My apologies... I originally thought you were referring to our very own Ktee, who has magnificently used her gift for helping people in need on this forum. It then occurred to me that you may have been referring to my reference of Katie Couric. You are ABSOLUTELY correct, that it IS unfortunate that very few celebrities have taken up the cause of fighting this horrific disease of Colorectal Cancer. Katie (Couric) has attracted SOME media support and has gotten some celebrities to lend a hand... but NOT NEARLY ENOUGH.

With the recent death of Peter Jennings and disclosure by Dana Reeves of her diagnosis of Lung Cancer, this malady should receive some much needed attention. This cancer is tightly linked with smoking, and like Colorectal Cancer is Curable-- you don't have to get it from the start;Colorectal Cancer has a >90% 5 year survival rate WHEN CAUGHT EARLY. YOU MAKE AN EXCELLENT POINT and that is HOW ARE WE TO CATCH IT IN IT's EARLY STAGES IF NO ONE KNOWS ABOUT IT? It SICKENS me to think of the useless loss of life and suffering due to IGNORANCE and MIS-INFORMATION. All it takes is some education-- in the schools, by DOCTORS (who by the way are also ignorant as we have stated), in the MEDIA. Unfortunately, I guess there is more sensationalism for the Media to tell that someone just died from Colorectal Cancer, than to prevent it.

If anyone knows someone in the Media, or works in the Media, I URGE you to DO A SEGMENT on this. You can make it new and refreshing and newsworthy. Here's something... "About 1 in 9 cases of colorectal cancer is diagnosed in someone under 50 [I actually think it's higher, but...]--that is over 1 million young people in your lifetime!" Use that as a headliner!

Ok, that's my rantings for the day.

Thanks again for the clarification Kewpie, and I DO HOPE everything checks out well for you! You WILL DO GREAT! I'm confident you have enough luck and life left in you to conquer anything that is thrown your path.

Regards,
CancerDad

CD, thanks for all the advice. I was checking the places you posted as I read the post. Nothing untoward that I can find.
The 'sore' throat is a lump that makes me feel the need to expectorate. It is there almost constantly and lately actually developed into a soreness. It does obstruct my braething sometimes, feels like it gets up the entrance to the nasal passage. This feels the same as when you get water up your nose.

Yesterday though I gave out the most explosive hack I ever have and ( isn't this a lovely topic :o ) out plopped a huge amount of phlegm. After that I don't have as much feeling of an obstruction(still there but more like it was 20 days ago) but my throat was raw and voice hoarse all yesterday and so far today.

I am still keeping my appt with the doc though now I don't feel the urgency like I did when I posted here last.

I know that for the most part any feelings I have about any change in my body are a result of having gone through cancer once already. I once told a friend that I have looked upon the face of death once and he doesn't scare me anymore. That is true, what scares me is having to go through surgery and treatments again. What saddens me would be the loss of the life I am not finished with yet and the time with people I love.

Anyway , I am rambling on again. I am more calm about this today than before. I hate it when I allow myself to hypochondrisize(sp? or is it even a word?) and worry like that.

Thanks again.
BTW, I gave up smoking about 17 years ago now and never did 'chew'. Since giving up the cancer sticks I have had bronchitis once, three years after quitting. I used to get it every year or two starting when I was 19. I am 49 now so if you do the math that means that I had bronchitis 7 or 8 times before I caught on. I shake my head at that. If something was hitting you on the head you would only need it to do so once, maybe twice before you moved out of the way! It took me 7 or 8 times and over a dozen years to metaphorically move out of the way. :confused: :D

Jaydees, I am glad you are feeling better, but don't cancel your doctor's appointment. It doesn't hurt to have anything you are concerned with looked at. Don't apologize for rambling, you really weren't, and we all need some release. When you talk about smoking, I am amazed at the people who have gone through or are going through chemo and smoke. One of the chemo nurses told me that she could not understand how some of the chemo nurse could smoke.

:eek:
Chemo nurses who smoke :eek:

How can anyone who sees, on a daily basis, the effects that smoking can have and not be scared ****less is beyond me.
Then again, as I said it took me many years to notice that smoking was not not doing my bronchial tubes any favors. :o

I also want to chime in on the smoking thing....from my room in the hospital I could see the smoking area where the staff went to smoke. Lots of people down there puffing away. I just dont get how health care professionals can see the bad effects of smoking on a daily basis and keep it up....infuriates me.

JDees.
It very well may be allergies with rhinorrhea (watery nose) much like that of a cold or other virus...and the post nasal drip is causing clumps of mucous to form. So still have it checked out... they may want a CT scan of the chest, and of course a CEA *(just to be on the safe side... not to freak you out-- you know our montage, don't freak until there is something to freak about!) ... When was the last time for a CT or Chest XRay?

Hang in there, and as Edinaman says... RAMBLE AS MUCH AS YOU WANT! That's why this post is here, that's why we are here. We ALL have our moments (or longer like me!)

Fondly,
CD

not to freak you out-- you know our montage, don't freak until there is something to freak about!) ... When was the last time for a CT or Chest XRay?


Yeah, I know the refrain, said it enough times myself. That id(or is it the super-ego, my knowledge of Freud is limited) still breaks through with its fears sometimes though.

Last chest X-ray was last year. Only ever had one CT scan, 4 years ago.

Throat is sore again today, seems it is building up again. There has to be something stuck there. I don't recall if this first appeared after eating popcorn or fish(little bones) but that is now what I am speculating on. Yep, I am getting it checked out and if the doc can't see down far enough then I'll ask for a different diagnostic even if it has to be an endoscope.

Gary, I hope you are okay and did not or will not have effects from the hurricane.

I was about 150 miles north of the hurricane. Last year two of them hit 20 miles from me. But I'm doing well and thanks for your concern.

Gary

hmmm OK all.. I still smoke!!! Yeah ai know the bad things but I enjoy my smoking..
Sorry if that offends anyone but its my decision...
Take care all
Maz

Maz:
JDees knows why I'm asking these questions... and we will PRAY and WISH HIM THE BEST that his lungs are clear. Bottom line is the manufacturers are to blame... they get you hooked and then you can't stop. I call them "cancer sticks." I know how addicting they can be. Remember too that your CEA will go up and down with your smoking.

Wishing you well.

Fondly,
CancerDad

Maz, I too enjoyed my smokes. Put them down when the figurtive smacks to the head finally registered. If you aren't there yet so be it, I am not offended by your smoking. As a reformed puffer though I cringe that someone I care for(though granted we have never met) is doing something that could harm them as it harmed me. (the aforementioned bronchitis)

Dear Maz

Giving up the smokes is a v.v.hard thing to do. My late mum was a smoker all her life. Of course, it was an era where it was perfectly fine to smoke at the grand age of 14 but there was hell to pay if she entertained the idea of wearing lipstick or nail varnish !!!!!

Anyhow, she smoked for over 60 years and tried to give up several times but she was just hooked. When her lungs began to choke with chronic lung desease caused from the smoking she was warned that they would get no better but if she stopped they would get no worse. She tried the patches but she had terrible nightmares with them.

In the last few years it was a complete mother/child reversal. Whereas I used to hide my smoking days from her and she would inevitably find out, she then used to hide it from me and then i would find out. Crazy weren't we? I knew when she smoked cos she got her cough back and my asthma would flare up when I spent time with her.

For the last year of her life I believe she did actualy stop. Her lungs just couldnt suck up the smoke i think.

Like I said , I used to smoke too. From age 13 to 22. I gave up a year after husband did. He had a cancer scare which actually turned out to be pleurasy but it stopped him smoking overnight.

Enough of my ramble.

Good luck and regards
ktee

JDees,
Do we have a confirmed case of bronchitis? Have you been to the doc regarding that lump when you swallow? If so, please share your results.

Thanks.
Best Wishes,
CancerDad

I suppose I was one of the "embarrassed" people, and may have put a blind eye to early symptoms. Bad news for me.... good news is that in the constellation of folks around me I now know of 32 who trotted in for colonoscopies, and they in turn are talking to at least one other or more outside my constellation of friends/contacts. And that was passive!!... when I get myself better and have more energy and can drive myself again, my big mouth is going to be chattering into any ear within hailing distance. Where I live there are cancer support groups for most cancers, but nothng for colon/rectal..... I wonder why that is and am going to find out. :bouncing:

I suppose I was one of the "embarrassed" people, and may have put a blind eye to early symptoms. Bad news for me.... good news is that in the constellation of folks around me I now know of 32 who trotted in for colonoscopies, and they in turn are talking to at least one other or more outside my constellation of friends/contacts. And that was passive!!... when I get myself better and have more energy and can drive myself again, my big mouth is going to be chattering into any ear within hailing distance. Where I live there are cancer support groups for most cancers, but nothng for colon/rectal..... I wonder why that is and am going to find out. :bouncing:
Mudlark:
There are a lot of things for all different kinds of cancer that there are not for colorectal. NOBODY WANTS TO TALK ABOUT THEIR BUTTS!

I commend you for, like me, being proactive... start a support group, scream it to the world... you are NEVER too young or old, and there is NOTHING to be embarrassed about. For now though, Mudlark, you make sure that you scream to us at you keyboard.... and leave the heavy walking, driving, running, for another day when your body has recuperated!!~ I like your spunk! And if I were by you, I would ask to give you a great big hug (I guess for both our sakes!). Survivors, you will find, somehow know each other and maintain a tight bond. This I have found to be the reality.

You will soon be ready to take on the world... in the mean time, trips to the doctor, etc. will have to do! Scream loudly!

Love,
CD

Mudlark, I have mentioned it on this board. There does not seem to be much in the way of support groups for colorectal cancer. Locally, there are fund raisers for breast cancer, lung cancer, leukemia, lymphoma, pancreatic cancer. I can't find anything for us. I am in the very early stages of trying to organize a fund raising dinner for colorectal cancer. I have the email addresses of some people around the country who have done this and once I get through my colonoscopy at the end of the month, and everything is okay (I hope), I will get busy on this.