Topic: CC Awareness Month - I GOT IT! Please read...

Hi Family. I just awoke from my percoset induced nap and I think I have it but of course need your input! Here is what we have so far:

CC Awareness Month      April 2010    Logo our very own CC Tree

I have been racking my brain, knowing that we have to start out small, we are scattered all over the Globe, but we need to become known. Here is my thought.

We pick the day in April, we gather all our friends and family in as many cities as we can represent. We stand in front of at least 3 -5 Media places with placards and our  CC brochures for the whole day.

Example of a placard:  Cholangio-Carcinoma = Bile Duct Cancer

                                    Research needed against this death penalty.
You get the idea....

Can you imagine if for one day around the world we all banned together it would be pretty impressive. All it would take is letting the Media know you will be there and making some placards and asking friends to join in. Small step big word!

Let me know what you think. If you all like this we can use this plan and I would start a running link where everyone could sign up for their city.

Just let me know if its a good idea or the percoset!!!! I can take the heat.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

Yay, yay, yay!!  Sounds good to me - count me in for London (or at least as much of it as I can expand myself into).

[P.S. Since I've been comfort eating lately, there's more of me than there used to be sad, so I'll be able to cover more of London than previously smile]

Jxx

"Time may be a great healer, but it's a lousy beautician."

Re: CC Awareness Month - I GOT IT! Please read...

I'd be more than happy to join in too - hey, if Julia, in her new found 'greater' persona & I stand in front of the Houses of Parliament we'd be able to block the view & would therefore attract a lot of attention!

More seriously, Derriford Hospital in Plymouth is about to become the regional centre for Upper GI cancers, covering Devon & Cornwall (BIG controversy here in the West) so as I refuse to believe I'm the only patient in this area having been diagnosed with cc in the last year I was thinking I should see the Specialist Nurse (who is a delight!) & get her on board with leaflets etc. There certainly didn't seem to be anything for them offer me. My hepatologist drew me lovely diagrams instead.
She assists with operations, certainly those done by my surgeon (David Stell, who is a HPB specialist & transplant surgeon) so regularly sees all kinds of patients for pre-op assessments. 
I've also seen the hepatology specialist nurse at several clinic appointments before my op so will talk to her too if that's appropriate.

I have a couple of possible contacts at the BBC in various locations so could give them the nod when we decide. Certainly the local radio should be interested with the regional centre controversy. Of course, they should be interested anyway.....

I'm right on with April, my birthday too (22nd Lainey - we're almost twins), & think using the tree is a great idea - best not to confuse the issue by adding in other flowers/symbols. And stay with the bile green - I'm guessing we could nearly all have made that disappear when placed next to us at one time or another! 
Hey, there's a suggestion - how about all us patients get the tree tattooed on, in just the right shade of jaundice, then when it disappears we'll know there's another blockage?
Stay positive all, Val

Re: CC Awareness Month - I GOT IT! Please read...

Val, so very happy to have you and Julia come aboard. I am so pumped! But we need a whole lot of cities represented to carry this off. My son suggested I write my Congressman and ask for April to become our month. First I want to make sure we have enough people or it will not work. Instead of tattoos, how about wearing bile green? I am in enough pain yet the thought of a tattoo doesn't excite me!:):):)
Your thinking is all in the right direction and you and Julia along with anyone else over there could muster up friends and family enough to cover several places.  A wonderful human aspect would be for some of our family to meet that day for the first time!!!  OMG, the thought I might have a twin out there is very frightening to the world.  Love to you all!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

What if instead of trying to have a little representation in lots of cities, we pick two to bombard? (and gather for a reunion)
I suggest Los Angelas to tie in with Teddy's name for the cancer (city of angels with cancer of angels) and London, another city of the same initial. I also like the idea of asking Congress to declare April Cholangiocarcinoma awareness month. Could the MPs in England also be asked to make the same declaration? My belief is that a concentration and focus is needed to get this off the ground. Later, more cities can join in.
Louise

Re: CC Awareness Month - I GOT IT! Please read...

Lainy,
You can count me in on whatever discission is made.  Personally I think more than two cities are needed so people don't have to travel so far to express their commitment for bringing Cholangiocarcinoma awareness to the foreground.  Keep having your good dreams.
Peace,
Karen

Wishing all God's blessings!

Re: CC Awareness Month - I GOT IT! Please read...

Good ideas Louise and thanks for the back up. I had thought about a reunion and using 2 cities however, it is very hard to get enough people due to the obvious reason of CC holding back quite a few who would otherwise love to join in. Then I thought imagine it........cities and people  coming together from all over the world at the same time and it gave me chills. Like hands reaching around the World. A small group of loving, caring people united for one cause. I like to come on with one big SPLASH. Also waiting for my daughter to talk to her Business teacher who is involved here at our NBC Chanel. IF and its a big IF, he got involved we could maybe get a couple of people on Good Morning America that day in NYC. I talked to Teddy's sister last night and she lives in Dallas and said she would love to work with people from that area. Her husband is the lead tenor of the 4 Lads and somehow maybe they could use them. Not sure yet all these ideas are revving me up! Again, before I wrie my Congressman I want to make sure we have a lot of "our people" backing this  up. Keep the ideas rolling.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

lainy, you are full of great ideas.  i just wanted to bring something to your attention that might be of some help............i ran across a site for bile duct cancer walks..http://bileductcancerwalk.org   i don't know if this site has already been posted here (there is a link to cholangiocarinoma.org on the walk site) but due to that walk (other "tandem" walks took place in other states that same day) more than $12000 has been raised for bile duct cancer research and the site said all together there were 269 walkers.  those funds are going to john hopkins.  the 2010 walk is set for april 3rd (there's your month again lainy :-) ).  maybe you could "feed" off those walks to help gather more people on a particular day.   maybe the walks could be arranged so they ended at places where the walkers would get a lot of notice.... everyone could wear their wristbands and perhaps a cholangio t-shirt.

thanks lainy and glad to hear you are past your surgery,

always (well most of the time) in hiding barb h

Re: CC Awareness Month - I GOT IT! Please read...

Thank you for the link, Barb.  How are you?

Sending my best wishes
Julia

"Time may be a great healer, but it's a lousy beautician."

Re: CC Awareness Month - I GOT IT! Please read...

I am more than willing to help if I am able. I know Sarah was looking for someone to head up the project and was talking about getting a poll together to choose the month. I might be a good idea to get all of that organised before we start making plans. For instance, I think it might be good if the person who is in charge lives near the place for a group organisation if that is what is decided. That way there is a contact person in place there.

Goodness, I hope that didnt come across as being a damp blankett!! I just think it would be easier to organise once the person is in place and we then can funnel ideas and suggestions and offer our money, body and souls to help out. Besides, I am sure the foundation has some ideas and opinions. I myself am one of the most disorganised people you could meet so I am truly wanting this to be well organised so it doesnt end up like my life! smile

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: CC Awareness Month - I GOT IT! Please read...

Thanks for the link Barb and the heads up Kristin. I had no idea anything was being done on this by Sarah so best not to do double duty and will wait to see what happens. Goodness knows I have enough on my plate as it is.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

Lainy,
Get some steroids. I swear I eat more and more each day on them. You will get your plate cleaned up lickety split. smile

And tell that Teddy of yours to be good to you or he is going to have a webboard full of people knocking on his door.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: CC Awareness Month - I GOT IT! Please read...

julia thanks for asking about me.  i'm doing ok, just battling a lot of pain.   i'm just ....so it seems... always in constant turmoil due to family, insurance, etc.  you would think i would have adapted by now...

my heart goes out to you re your sister.  she is fortunate to have you helping her, loving her.... the more you love, the more you hurt.

bless you julia.. sending you a big hug,
barb h

Re: CC Awareness Month - I GOT IT! Please read...

hey lainy, i just got my latest issue of aarp magazine.  there's an article that has to do with problems with health insurance and there is a woman by the name of theresa rattei who lives in phoeniz, az .  she ... appears to have cholangiocarcinoma.    here's the link to the story

http://www.aarpmagazine.org/money/healt … _game.html

she might be another one you could recruit for your project.  unfortunately, post her insurance fight, treatment, the cancer is back and is in her lungs.

take care,
barb h

Re: CC Awareness Month - I GOT IT! Please read...

Hi Barb and thanks for the post from AARP. We are so absolutely lucky with our Insurance Companies. Both of us. I was thinking of trying to locate this lady but also thinking I don't want to infringe. On the other hand if you get quoted in a magazine it leaves one open o calls etc. I would appreciate some feedback on this and in the meantime will go back to the site and write down her name.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

lainy, her name is Theresa Rattei.  i'm guessing she would be happy to hear from you as i think her diagnosis must be cholangio don't you from the write up?  then she would learn about this site and get a lot of information to help herself.

i don't see a problem with trying to contact her since her name/story was published in a magazine.  i wish she had stated where she is being treated.

i'm AMAZED that you nor teddy have had any problems with insurance.  i've been fighting insurance from the day i started having pain.  first it was kaiser, then health net, now it's blue cross ppo.  what insurance do you and teddy have.... if you don't mind telling me?  did teddy get avastin?  i had to fight big time for coverage for that and missed several infusions because blue x refused to pay for them.  then...........post a very long fight and getting the california state board involved, blue x said that would pay for ?? some avastin infusions.  a week later than said no again.  so.....in the end blue x said yes for ?? some infusions and it was at that time my oncologist said we should take a break as i wasn't feeling very good.  the timing was horrible because it took me a lot of energy to fight.....  blue x also turned me down for other treatments saying they were "experimental."

thanks lainy,
barb h

Re: CC Awareness Month - I GOT IT! Please read...

When T first got sick 4 years ago, we were visiting our kids in Milwaukee and it was an emergency as he totally jaundiced. He had all the tests, an aborted Whipple a double e coli infection, the "real" Whipple and was in the hospital for a total of 7 weeks. Cigna paid 230,000 and we paid 4,000.00 not bad at all. He was advised by 3 Oncologist, the surgeon and the director of liver transplants at Banner Samaritan here that he could never do chemo it would not work on his type of CC which was in the bile duct valve. He can do radiation and cyber knife which he did a year ago when the CC returned where his duodenum used to be. Cigna only balked once and wanted him to have the radiation before the cyber knife. I have Secure Horizons and my recent surgery was 50,000. for a week in the hospital and I paid 700.00. When I read these horror stories about the insurance I feel we have lucked out big time. I just cannot imagine being in a CC position and being told your insurance will not help you have treatment.

Theresa Rattei -  I spent the better part of a day, along with my daughter and could not find her phone or e mail. I even tried to e mail AARP but they don't take e mails. Any ideas?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC Awareness Month - I GOT IT! Please read...

lainy, thanks for the info on your insurance.  like you, i think you have been fortunate to not have to fight for coverage... but i do wonder if some of it is because neither of you have had chemo.  although, i'm battling my insurance over pain meds too...........   i'm just glad for you and teddy.

now about that theresa person.........  if i get my head screwed on soon (don't hold your breath) :-) i'll try to see about sending a short note to aarp.  perhaps they might be of some help.  too bad the article didn't say where theresa was getting her treatments.

much love to you and your sweet daughter for working so hard.

barb h

Re: CC Awareness Month - I GOT IT! Please read...

Thanks for the hug you sent me, Barb.  I didn't see it until today but it was wonderful to receive it.  I send a big hug back to you.

Jxx

"Time may be a great healer, but it's a lousy beautician."