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INFO ON WEEKEND IN SPRINGFIELD - AUG 8th and CIRCLE OF FRIENDS by the AMERICAN CANCER SOCIETY
Just thought that I would update you all on what has been going on. NO! I have not given the idea up or forgotten about it.
I have recieved 2 messages from the ACS. The public relations manager will be contacting me within a week about our lodging. She is working on the details as to where would be a good place for all of us. They are also working on the Look Good Feel Better session that I asked about.
The media relations manager ran a story about us in the June edition of the e-mail newsletter that they put out. I tried to get there by the web site at the bottom of the page but I couldn't. I guess that is because it is a subscription newsletter. So I will print it out here so you all can read it. Please bear with me in any typos I might make.
Circle of Friends
After months of tests and treatments that didn't relieve her symptoms, Chris Recco felt she was at the end of her rope.
"I had such terrible pain and gastrointestinalproblems, and I was getting sicker and sicker'"Chris recalls, describing the time just before her diagnosis with Ovarian cancer in 2005.
Doctors thought it was irritable bowel syndrome, and later, depression. "Then I found the cysts in my abdomen and a biopsy finally uncovered the truth."
Chris was in shock. Although her mother had survived breast cancer, she didn't knowthe first thing about ovarian cancer. With her son and his family living nearby,she had family to rely on. Still the closest hospital - with its resources and cancer support groups - was miles away.
Chris decided to search for information on the Internet. That's how she found a special group of friends who have helped her learn how to live with cancer.
The women, who live all across the U.S. and as far away as Australia, come together through a series of chat rooms and bulletin boards. "None of us are doctors, but as survivors, we all have wisdom to offer," Chris explains. :We've become incredibly close."
The women "meet" almost daily to share news of surgeries, setbacks, triumphs and losses. They answer each others questions about symptoms, treatment and side effects and counsel new patients who join the conversation.
"Since my cancer was diagnosed at stage 4, there is no cure," Chris says. "Without these friendships, I don't know what I would have done.... whether we log on from Costa Rica or Colorado, we're there for each other."
A Very Special Meeting This Summer
This August, several of Chris' friends will finally have the chance to meet each other in person at a gathering she is organizing.The women will come to Springfield from several midwestern states and as far away as New Jersey. She hopes that one highlight of their visit will be a Look Good Feel Better session hosted by the American Cancer Society.
"Chemotherapy can really affect your looks. I've lost my eyebrows... twice!" jokes Chris. "I attended a Look Good Feel Better session in Olney and I learned so much. I am looking forward to the class we're planning for our group.
No One Should Face This Disease Alone
Chris says she's enjoyed learning more about the range of patient services the American Cancer Society provides in Illinois.
"I'm passing the word along to people I meet online," she says. "No one should face this disease alone. I'm glad to know you're there for all of us."
As soon as I recieve word I will begin contacting everyone who has expressed interest in coming, so we can get some kind of count as to the number of rooms etc. I hope that all of you who have contacted me and expressed interest in being there, have not changed your minds and still plan on coming. With all of the help from the ACS, I am hoping that this will be a weekend that memories are made of.
Love to you all,
Chris
I have recieved 2 messages from the ACS. The public relations manager will be contacting me within a week about our lodging. She is working on the details as to where would be a good place for all of us. They are also working on the Look Good Feel Better session that I asked about.
The media relations manager ran a story about us in the June edition of the e-mail newsletter that they put out. I tried to get there by the web site at the bottom of the page but I couldn't. I guess that is because it is a subscription newsletter. So I will print it out here so you all can read it. Please bear with me in any typos I might make.
Circle of Friends
After months of tests and treatments that didn't relieve her symptoms, Chris Recco felt she was at the end of her rope.
"I had such terrible pain and gastrointestinalproblems, and I was getting sicker and sicker'"Chris recalls, describing the time just before her diagnosis with Ovarian cancer in 2005.
Doctors thought it was irritable bowel syndrome, and later, depression. "Then I found the cysts in my abdomen and a biopsy finally uncovered the truth."
Chris was in shock. Although her mother had survived breast cancer, she didn't knowthe first thing about ovarian cancer. With her son and his family living nearby,she had family to rely on. Still the closest hospital - with its resources and cancer support groups - was miles away.
Chris decided to search for information on the Internet. That's how she found a special group of friends who have helped her learn how to live with cancer.
The women, who live all across the U.S. and as far away as Australia, come together through a series of chat rooms and bulletin boards. "None of us are doctors, but as survivors, we all have wisdom to offer," Chris explains. :We've become incredibly close."
The women "meet" almost daily to share news of surgeries, setbacks, triumphs and losses. They answer each others questions about symptoms, treatment and side effects and counsel new patients who join the conversation.
"Since my cancer was diagnosed at stage 4, there is no cure," Chris says. "Without these friendships, I don't know what I would have done.... whether we log on from Costa Rica or Colorado, we're there for each other."
A Very Special Meeting This Summer
This August, several of Chris' friends will finally have the chance to meet each other in person at a gathering she is organizing.The women will come to Springfield from several midwestern states and as far away as New Jersey. She hopes that one highlight of their visit will be a Look Good Feel Better session hosted by the American Cancer Society.
"Chemotherapy can really affect your looks. I've lost my eyebrows... twice!" jokes Chris. "I attended a Look Good Feel Better session in Olney and I learned so much. I am looking forward to the class we're planning for our group.
No One Should Face This Disease Alone
Chris says she's enjoyed learning more about the range of patient services the American Cancer Society provides in Illinois.
"I'm passing the word along to people I meet online," she says. "No one should face this disease alone. I'm glad to know you're there for all of us."
As soon as I recieve word I will begin contacting everyone who has expressed interest in coming, so we can get some kind of count as to the number of rooms etc. I hope that all of you who have contacted me and expressed interest in being there, have not changed your minds and still plan on coming. With all of the help from the ACS, I am hoping that this will be a weekend that memories are made of.
Love to you all,
Chris
Kimmywah,
You are such a sweetheart to offer to help when you cannot even make it! Right now I cannot think of anything, but if i do I will let you know. Thank you so much.
As many of you know when we first started talking about this, it was for all of us. Well nothing has changed. I know that the article from the ACS focused mainly on cancer, but then that is what they do isn't it? When I first started talking with them and they became so interested, I told them that many of the women here did not have cancer themselves, but were caregivers, women whose lives had been touched by ov ca, and women who had had an ov ca scare, and just stayed around to offer support to the many friends they had made during their awful waiting period. Had they had available space, the article would have been longer. I wish that I could meet ALL of you here. But since i know that is not possible, I want to meet as many of you as I can. That is also the reason why I suggested earlier that we could possibly make this a yerly or even bi-yearly event, so that everyone can have the chance to meet the wonderful friends they have made here. We will see what happens down the road. And I will do all that I can to help set something like this up in different parts of the country in the future.
I also just read the message from medhelp. I wish that they would step back and look at the over all forum, instead of just a few posts here and there. If so, they would see that for the most part, we all are very close. Just the excitementover this summer should tell them that. Sure we are all going to bicker back and forth occaisionally, but how can you get a bunch of wome together everyday without that happening some. But just like the women that we are, we can always work it out. I do appreciate their intervention in cases such as the "imposters" in the past, as they were trying to protect all of us. But I really see no need to hang threats ove anyones head, as if they really understood, they would know that many of us have our really bad days due to not feeling good and all of the medications that we are on. We do not always mean the things that we say, but when we feel the way that we do, sometimes we just have to get ALL of it off our chest at once.
I really hope that a lot of this has not changed anyones feelings on coming this summer. We are all still the same women we were when this was first being planned. Many of you have been here a lot longer than I have and have been friends for a long time. I hope that the excitement of finaly being able to actually meet those friends will be what influences your final decision on coming.
As I said before, as soon as they have contacted me, I will let everyone know.
I love you all, no matter what ever happens.
Love Chris
You are such a sweetheart to offer to help when you cannot even make it! Right now I cannot think of anything, but if i do I will let you know. Thank you so much.
As many of you know when we first started talking about this, it was for all of us. Well nothing has changed. I know that the article from the ACS focused mainly on cancer, but then that is what they do isn't it? When I first started talking with them and they became so interested, I told them that many of the women here did not have cancer themselves, but were caregivers, women whose lives had been touched by ov ca, and women who had had an ov ca scare, and just stayed around to offer support to the many friends they had made during their awful waiting period. Had they had available space, the article would have been longer. I wish that I could meet ALL of you here. But since i know that is not possible, I want to meet as many of you as I can. That is also the reason why I suggested earlier that we could possibly make this a yerly or even bi-yearly event, so that everyone can have the chance to meet the wonderful friends they have made here. We will see what happens down the road. And I will do all that I can to help set something like this up in different parts of the country in the future.
I also just read the message from medhelp. I wish that they would step back and look at the over all forum, instead of just a few posts here and there. If so, they would see that for the most part, we all are very close. Just the excitementover this summer should tell them that. Sure we are all going to bicker back and forth occaisionally, but how can you get a bunch of wome together everyday without that happening some. But just like the women that we are, we can always work it out. I do appreciate their intervention in cases such as the "imposters" in the past, as they were trying to protect all of us. But I really see no need to hang threats ove anyones head, as if they really understood, they would know that many of us have our really bad days due to not feeling good and all of the medications that we are on. We do not always mean the things that we say, but when we feel the way that we do, sometimes we just have to get ALL of it off our chest at once.
I really hope that a lot of this has not changed anyones feelings on coming this summer. We are all still the same women we were when this was first being planned. Many of you have been here a lot longer than I have and have been friends for a long time. I hope that the excitement of finaly being able to actually meet those friends will be what influences your final decision on coming.
As I said before, as soon as they have contacted me, I will let everyone know.
I love you all, no matter what ever happens.
Love Chris
I am so praying for you Jan, that this chemo round is not going to be so rough on you and I know you are dreading it, but this is GONNA knock that mongrel in the butt!!
Chris, I hope your Ca is down down down.
To all,
This gathering in Chicago is going to be so amazing for you all. I am so excited for everyone and believe me would love to travel over and be there, but sadly I am just TOO far away..lol.
If there is somewhere where we, who cannot make it, could make some contribution, even if it is to help with beauty sessions or t shirts or whatever, then could you please post and let us know.
Now Please PEACE today and love....Kim
Chris, I hope your Ca is down down down.
To all,
This gathering in Chicago is going to be so amazing for you all. I am so excited for everyone and believe me would love to travel over and be there, but sadly I am just TOO far away..lol.
If there is somewhere where we, who cannot make it, could make some contribution, even if it is to help with beauty sessions or t shirts or whatever, then could you please post and let us know.
Now Please PEACE today and love....Kim
No the Topotecan was not rough on me. Gemzar was the hardest chemo that I have been on. It did not hit me quite the way that it hit you but it was still hard. I would come home from treatment knowing that I only had another couple of hours to do anything I needed to get done. Because after those 2 hours were up, I could feel it coming on. then it would hit like a freight train, and it would take me most of the week to start feeling a little better. but of course by then, it was time to go again. It also worked real well for me, at first, it just did not work long enough. It is the only chemo (other than the first) that has brought my CA down under 200. but it hit that low and then started gradually rising again. That was when they switched me to Topotecan, and after Gemzar, that was like getting nothing at all. Unfortunately that was how it worked on me to, like I was getting nothing at all. My CA never went down even one point while I was on it, but continued rising. Then I started the avastin/abaxane. I am having a Ca drawn tomorrow and keeping my fingers crossed that it has started coming back down. I am also keeping my fingers crossed for you that this one will be much easier on you.
Love Chris
Love Chris
Chris, you are so sweet. Cory is going to come down to Cleveland Wednesday and come back Thursday and I don't know if I will be going with him. I feel like I have a prison sentence hanging over my head and I feel tremendous pressure to get everything done before than just in case it is as bad as they say it will be.
I would hope that a hotel would be understanding about a bunch of women on chemo who may not be able to make it at the last minute. It sure wouldn't look good for them if word got around that they were mean to a bunch of sick old ladies. LOL
I am enjoying these good days. Hey, when you only get 20 a year you have to appreciate them.
TO CHRIS R. You said the gemzar was not rough on you and other than constantly throwing up, the only big issues I had were bone pain, (was taken care of with Fentanyl patches) HORRIBLE chemo brain, and sensory overload. It worked very well and I am still baffled why they took me off of it instead of just giving me different nausea meds. I am going to ask him about that, because it was not that bad except for being in the hospital 8 times for dehydration.
I would hope that a hotel would be understanding about a bunch of women on chemo who may not be able to make it at the last minute. It sure wouldn't look good for them if word got around that they were mean to a bunch of sick old ladies. LOL
I am enjoying these good days. Hey, when you only get 20 a year you have to appreciate them.
TO CHRIS R. You said the gemzar was not rough on you and other than constantly throwing up, the only big issues I had were bone pain, (was taken care of with Fentanyl patches) HORRIBLE chemo brain, and sensory overload. It worked very well and I am still baffled why they took me off of it instead of just giving me different nausea meds. I am going to ask him about that, because it was not that bad except for being in the hospital 8 times for dehydration.
Jan and Chris,
Thanks for bringing this up. When I went through a few places like Expedia, Hotwire, etc, most of the hotels that put in bids, stated that there would be no deposit required, the latest that I think I saw for reservations was 3 weeks in advance, and they also said the group would not be held responsible for rooms not used. They were working with me knowing the circumstances so I am hoping that anyone who will work with the ACS will be the same. I will have to just wait and see what she comes up with and go from there.
The article that I reprinted above in my original post, is going to be in the June e-mail newsletter that the ACS puts out each month. It goes to the thousands of people in Illinois that support the ACS. I am hoping that we will get a positive response to it. And we my be surprised by what it will bring. She sent me a copy of the article when she first wrote it and it was then titled, Living with Cancer. I responded back to her asking her to change several parts of it so it was not just about me but about all of the wonderful people that I have met here. I was pleased with the changes that she made. All of the women that I have talked to have been so nice and want to help all that they can.
Jan you are right about mentioning the hotel that works with us. I think it would only be right to do so.
As I said, she is going to contact me in the next week as she is working on all of the details. They also told me that if we want to do any sight seeing that they can set all of that up too. so you all just need to let me know. But as soon as I hear back from her, I will let you know what is going on.
I feel as though I need to thank everyone here also, for being so enthused and wanting this to happen. It has made me want to do it that much more.
You will know as soon as I hear anything.
Love Chris
Thanks for bringing this up. When I went through a few places like Expedia, Hotwire, etc, most of the hotels that put in bids, stated that there would be no deposit required, the latest that I think I saw for reservations was 3 weeks in advance, and they also said the group would not be held responsible for rooms not used. They were working with me knowing the circumstances so I am hoping that anyone who will work with the ACS will be the same. I will have to just wait and see what she comes up with and go from there.
The article that I reprinted above in my original post, is going to be in the June e-mail newsletter that the ACS puts out each month. It goes to the thousands of people in Illinois that support the ACS. I am hoping that we will get a positive response to it. And we my be surprised by what it will bring. She sent me a copy of the article when she first wrote it and it was then titled, Living with Cancer. I responded back to her asking her to change several parts of it so it was not just about me but about all of the wonderful people that I have met here. I was pleased with the changes that she made. All of the women that I have talked to have been so nice and want to help all that they can.
Jan you are right about mentioning the hotel that works with us. I think it would only be right to do so.
As I said, she is going to contact me in the next week as she is working on all of the details. They also told me that if we want to do any sight seeing that they can set all of that up too. so you all just need to let me know. But as soon as I hear back from her, I will let you know what is going on.
I feel as though I need to thank everyone here also, for being so enthused and wanting this to happen. It has made me want to do it that much more.
You will know as soon as I hear anything.
Love Chris
You would definitely have the experience of dealing with attrition with groups of your size:) Meeting planners for larger groups are expected to have experience and know how to gauge attendance or, as you said, they can get "gouged". Hopefully, the hotel/lodging that Chris is going to be dealing with will extend flexibility and she'll have a compassionate sales person. August here can be a little slower since everyone is heading back to school, and that can help with rates and what the hotels are willing to do. It's all based on how busy they are and how much they want the business. And the publicity can only help them. I'd be glad to help as needed. Hope you're enjoying feeling a little better, Jan. Hugs, Chris P
Dear Chris & Chris,
Chris P, I should have remembered that you do that. Maybe you can help with those rooms as you have a lot of experience. I guess I have always been involved with CE classes for the legal profession where there are generally 200-300 people booking rooms and they like to gouge us so.....LOL
Chris C: I thought about that after I wrote it and Chris is right. If it is going to get positve coverage, you may want to try and make a deal with them based on that if you can get the local paper to go along with it and mention the generosity of the hotel. They won't want to look like the bad guys with a bunch of sick old women. The letter you wrote me about this sounds so very exciting. I really do hope I can be there. You are doing a terrific job. Also, so glad you are enjoying your little glade. It sounds peaceful and calm.
Jan
Chris P, I should have remembered that you do that. Maybe you can help with those rooms as you have a lot of experience. I guess I have always been involved with CE classes for the legal profession where there are generally 200-300 people booking rooms and they like to gouge us so.....LOL
Chris C: I thought about that after I wrote it and Chris is right. If it is going to get positve coverage, you may want to try and make a deal with them based on that if you can get the local paper to go along with it and mention the generosity of the hotel. They won't want to look like the bad guys with a bunch of sick old women. The letter you wrote me about this sounds so very exciting. I really do hope I can be there. You are doing a terrific job. Also, so glad you are enjoying your little glade. It sounds peaceful and calm.
Jan
Chris, great job and what a wonderful article! I wish I could be there and I will be in spirit. As for the room rates, I work with small groups to block hotel rooms all the time. In our area if X amount of rooms are blocked for an event, those rooms are sold at the group rate. There is typically a cut-off date 3 weeks or so prior to the event for registration. Rooms not reserved by the cut-off date are released back to general inventory and anyone from the group looking to reserve a room after the cut-off date is likely to be given a rack rate, which is higher than the group rate. Rates are not raised for those who have reserved by the cut-off date. It is usually with larger groups that attrition clauses come into play - if the meeting planner guarantees the block and it's not all picked up, the group can be charged an attrition fee (which some planners/organizations pass back to the attendees - it all depends on the contract and the type of group). It is true that some hotels include attrition clauses in their contracts as a matter of course, so you should watch for that and have it removed if it's there. Our hotels don't typically hold room blocks based on verbal contracts. Once they propose and the client indicates they accept the proposal, the client has a specific timeframe in which to contract or the rooms are released.
I think if you explain the circumstances to the hotel and get a written contract with no attrition clause you should be okay. Typically, especially for smaller groups and certain types of groups (family reunions, weddings), hotels don't block all the rooms requested anyway because they expect a certain percentage will not reserve as expected. However, if they have guaranteed that number in the contract and the number is reserved by cut-off, they are obligated to have rooms for you, or find you rooms elsewhere. Also, if the hotel knows the ACS is working with you on this, and there is the possibility of positive publicity, they should generally be flexible and easy to work with. If not, you can always find another hotel, though you are getting pretty close timewise.
Best wishes and have a great time. ChrisP
I think if you explain the circumstances to the hotel and get a written contract with no attrition clause you should be okay. Typically, especially for smaller groups and certain types of groups (family reunions, weddings), hotels don't block all the rooms requested anyway because they expect a certain percentage will not reserve as expected. However, if they have guaranteed that number in the contract and the number is reserved by cut-off, they are obligated to have rooms for you, or find you rooms elsewhere. Also, if the hotel knows the ACS is working with you on this, and there is the possibility of positive publicity, they should generally be flexible and easy to work with. If not, you can always find another hotel, though you are getting pretty close timewise.
Best wishes and have a great time. ChrisP
Chris,
I just wanted to say that I think you are doing a wonderful job and I am excited that all of you are going to meet in person (for those that haven't already). I will be praying that those that are planning on going are feeling well enough to attend.
Hugs,
colleen
I just wanted to say that I think you are doing a wonderful job and I am excited that all of you are going to meet in person (for those that haven't already). I will be praying that those that are planning on going are feeling well enough to attend.
Hugs,
colleen
Yes, they can and hotels have adjusted rates. You have a verbal contract and in some cases written contracts for x amount of rooms and if you do not hold up your end of the contract they are not obligated to hold up their end. Some hotels do and some don't. It is something we should check on first before the hotel is booked.
Peace
Jan
Peace
Jan
Hey there.....I have been watching and listening to all your planning. As far as I can tell you are doing a great job.....I know there are many of us who would like to, and many who will, attend.
We just had a wedding last week-end and there were cancellations at the last minute and there were no adjustments to rooms already registered.....I cannot imagine anyone changing rates after registrations are made....they can't do that so this is not something to worry about.
I am hoping to be able to attend but will not be able to say for certain just yet.
We just bought a small house in a small town nearby for our son and we have lots of stuff going on.....like repairing walls, windows, bathrooms and kitchen.....removing old carpet...painting walls after washing them.....eauch....we will see.
I will stay in touch.....hang in there and take care.
Peace.
dian
We just had a wedding last week-end and there were cancellations at the last minute and there were no adjustments to rooms already registered.....I cannot imagine anyone changing rates after registrations are made....they can't do that so this is not something to worry about.
I am hoping to be able to attend but will not be able to say for certain just yet.
We just bought a small house in a small town nearby for our son and we have lots of stuff going on.....like repairing walls, windows, bathrooms and kitchen.....removing old carpet...painting walls after washing them.....eauch....we will see.
I will stay in touch.....hang in there and take care.
Peace.
dian
I can't wait. I am praying that my chemo this round won't be as bad as he says it will be. I do have chemo on Tuesday of that week but screw it I may not go. I wish it was my off week. I told my husband I wanted to schedule my chemo so that would be my off week and he gave me THAT look. I have to start next Tuesday and by August I will either be adjusting to it or sick as a dog. We will see. The bad thing Chris is that you will probably get a good hotel rate by promising x amount of people and some of us just won't know if we can make it until the last minute and if we cancel, the room rates may go up for the others. I hope not but that is the way it usually works.
I am so glad you were up to this. Hey, don't forget you're going to have a bunch of southerners there to.
I am so glad you were up to this. Hey, don't forget you're going to have a bunch of southerners there to.
You go girl! You are doing a great job with this. I hope, hope, hope I can be there. All depends on what is going on with my husband's illness. (or mine, I guess)
Teresa
Teresa
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