2005 ROCK-TOBER CHEMO GIRLS

chumfry

Well, heck. Victoria and I posted simultaneously. I'm PMing you.

ravdeb

Cindy..that was a truly informative post and I totally thank you for it. The tennis ball idea...I think I get it and can understand how that could feel great.

I think all my problems have just gotten worse post-chemo. I'm going to see about a bone density scan on Fri. when I see my family doctor. I think he can refer me. I will ask him about MRI for the two spots. I may get that okayed as well because of the bc.

And thanks about my hair, Cindy. Both this woman and her daughter in law have told me to get my hair colored. They are the only ones, I think (besides my hair dresser..but he would make more money if I went back to coloring my hair..he misses my business!). With all my aches and pains, I was in such a bad mood after that!

I will get to the bottom of it all.

Victoria..you know how I feel. I wish you weren't leaving the board but I understand why and you need to do what feels right. You have been a wonderful contributor and have added to the diversity of our group in an inspiring way. You will continue that in the real world, supporting your friends, moving on to your new home and a fresh and wonderful start and staying close to your family. That is what really counts. I wish only the best to you..but I'm not saying goodbye. We'll be in touch.

TracyNY

The zofran suit "claims that certain drug companies reported false and inflated average wholesale prices for certain types of outpatient drugs." The lawsuit wants the court to pay money damages to some people who paid ot made co-payments for the drug.

Its not only zofran, the website is www.gsksettlement.com. The details are all there.

Anonymous

cindy - ravdeb -
I was having really bad shoulder pain about a year ago - my Ortho Doc suggested I get a cordless mouse and do one of two things:
1.) work with the mouse at a level lower than your desktop/keyboard
or
2.) work with the mouse at the same level but prop your arm up with a pillow or piece of foam rubber so that it's at a right angle.
He said he had the same problem, and that #1 worked for him. #2 has worked for me!

TaDah -
The drug on their list that I took was Kytril - but I think my Onc. gave me a sample of it.

Victoria -
I thought the troll incident was behind us all. Can you please stop resurrecting it in the form of e-mails, PM's, phone calls, letters and posts?

---------------------------------------------

Girls,
Whew...I'm exhausted...I just got back from checking all the windows in every room at the Hyatt (432 rooms each room had 3 windows) and all the windows in every room at the Marriot (386 rooms each room had 5 windows)! Guess what...? not one of them opens! LOL

ake

I'm so pissed right now, so I've taken time to collect myself and here it goes...

I have thought long and hard about this decision, but I must go with my gut. I joined this group when I began chemo and developed strong friendships with all you amazing women, finding connections with people all
over the country. I was the baby of the group and found wisdom in all of you going through chemo with me, found support, found humor, enjoyed seeing pics of everyone and I wore my pink Rocktober girl shirt with pride and I found strength in every single one of you. We became friends, sisters, true supporters.

In the last months, there has been a bit of drama, accusations, intrusive trolls, attacks, etc. which I thought were simply bumps in the road. Even the one directed at me. I mostly tried to ignore both situations or try to help and then I thought it was behind us. But, I just recently have discovered that my place in the group is not always welcomed and my "break" from the group a couple of months ago was in fact accepted by someone with relief and satisfaction....in other words, they were glad I was gone. I'm floored and upset. I have worked too hard in my life to not get caught up in negative stuff, especially after breast cancer.

It pains me to say this, but I really have to leave this group. I took a break from the boards a couple of months ago because I was overwhelmed...I was learning of other women on the YSC being diagnosed with mets and it scared me. I needed to get my footing back. And then I came back to you all. I thought my brief hiatus was respected and understood...I would completely understand if someone needed a break from something if they were feeling overwhelmed in any capacity. We, as survivors, have to listen to ourselves and know how we need to cope sometimes. I respect each and every decision that every single one of you make. But, I learned recently that my decision and more specifically... me as a person...was seen by someone as selfish with a kind of good riddance attitude. If I'm not wanted, if my break was misinterpreted as being selfish, if someone was actually glad I was gone, if any of my words were taken out of context, then I can't do anything more. I feel I have done my best to be as supportive as possible to all of you. My break from our group was not a selfish act, but simply a way of taking care of myself for a bit, so I could be a better Rocktober girl.

I can't be part of something where people talk behind my back and then act like my friend. This isn't high school. It doesn't make me feel safe and it doesn't make me feel accepted. I don't know what to do. For those of you who have no idea what I'm talking about, I can only say I love you all and am SO SAD about this, but I'm too tough to stay in a group where people don't want me or they talk behind my back. After a year of breast cancer, I have to do what's best to take care of myself and being part of something that has some members that talk negatively behind my back is not where my road to recovery goes. And it sucks. I'm mad, shocked, but most of all sad.

I've been a member of this group since the begining and I don't know what happened to our group, but I have to go with my gut. I refuse to be part of something where members say spiteful things behind my back. This is breast cancer. Something that can make someone feel vulnerable, scared, lonely, whatever. In the midst of all those feelings, not one single person should ever feel attacked. And I do. And it's not fair.

To my Rocktober girls...I'm so pissed it ended this way, but life's too short for the drama. Just because I'm out of this group doesn't mean I'm away from you. Those that have my email address or want to, please keep in touch with me.

-Amy

RoseMarie

Huh?

(I actually don't want to know this time.)

Anonymous

RoseMarie -

Smart choice! LOL

RoseMarie

TracyNy - I just dug out my paperwork from my onc in Tallahassee - it lists Zofran as one of the drugs they gave me but I think it was in my drip. The charge listed is $208.00!! Thanks for the info, btw!

Curlylocks

Okay I'm totally confused here and dont know where all of this started.

I do hope that I am still welcomed here as I am one of the newer members. I am saddened to think that someone may have thought just because I was new here that I had anything to do with whatever is happening now.

I do assure everyone that I have the best interests of our sisterhood in my heart and joined this group to become part of wonderful group of ladies that love life and make me laugh when those down days happen through this breast cancer journey.

I do feel a strong connection to everyone of you and was pm'd by Debbie444 to consider joining in back in Oct last year. I was hesitate at first as I was not a part of this original group going through chemo at the same time. I felt I needed an outlet and the friendship of you wonderful ladies so here I am.

Victoria I will miss your words of wisdom and am saddened you are leaving.

Amy I did not get to know you that well but you seemed to have such a wonderful zest for life despite being dealt this breast cancer hand at such a young age. You will be missed!

I really dont know what to say tonight as this recent turn of events has me speechless for a change. I am never usually at a loss for words.

Have a great evening ladies.

Michele

Anonymous

Amy -
I e-mailed you. I feel bad that you have to deal with this mess! You don't deserve it.

Michele -
This is all very confusing to all of us! I hope you don't let the spiteful words and opinion of one person, question the worth and meaning of your involvement here. You are always so sweet to chime in - and you always take the time to address each of us individually.

Paula15089

Ladies...
what the heck is going on???????
we have survived BREAST CANCER for crying out loud, supporting each other along the way, and we are fighting EACH OTHER now???? I dont get it.

All those accusations are very sad. I know it might open thw whole new can of worms, but perhaps some things should be brought in the open and names should be named? I dont know... we need a shake up. We need to get back to the way things used to be.
Who is accusing whom of what??
I am confused and very sad..

Anonymous

Girls -
I just want you to know that I am preparing a PM that will explain my feelings/thoughts/concerns regarding this issue.

But...I also have to remind you that the POLL ends tomorrow morning at 10:00AM! Yikes...it's awesome that we may actually have an "agreed upon" place to stay at! Yay! But in my Heart-of-Hearts...I just want everyone to be happy!

Love you all,

Anonymous

I truly believe that everyone should just put it past them and support each other. Time eventually does heal wounds and I would be sad if Amy and Victoria never came here again.

I am just sick that this is happening.

We don't know who the troll was and I am sure we will never know. I think we know who it's NOT. And the stranger (I think it just was someone who wanted to upset us) got what he wanted....to break us up.

cathy987

Trust is a delicate thing. It doesn’t take much to destroy it. Words are powerful and have the ability to destroy relationships. Taking responsibility for our part in the breakdown of a relationship is an adult thing to do. Some of us never reach that stage in our lives but if we do and we can admit that we are human and make mistakes and find the truth in ourselves the possibilities for healing relationships is unlimited.

Not one of us would like to admit we have spoken unkindly behind someone’s back. But I dare say at one time or another most of us have done that. When we are caught we have choices.

1. We can totally deny any wrongdoing to everyone involved. Children do this.

2. We can convince ourselves we didn’t actually do what we know we did and if we’re really nice maybe it will just all go away. This might work in the short run but eventually it will catch up with us and we will lose respect.

3. We can admit we have done so and try to repair the damage we have done. That is probably the hardest path because first of all we have to recognize our words have caused damage and then we run the risk that the other person will not accept our attempt to reconcile. We might not be liked anymore.

The acceptance I felt from this group of women from the beginning has been one of the best experiences of my life. I would really hate to see the group destroyed by one of us who might have been careless with her words and feelings and now feels the need to save face. The high road is not always the easiest but when taken it will lead to the best experiences of life and true friendships.

I don’t like to be so serious and preachy and know-it-all but I have faith this can be resolved.
I love you all.

maryannecb

What do I think?

I think if we stay on topic, that is talking about BC and what we are dealing with and how it affects us as individuals it can work.

Sharing opinions about the motives of others is a tricky business. Can we ever really know a person we have not met?

It is pleasant and interesting to hear of the comings and goings of others in the group . I do want to see how each of you fares out in life.

But the group dynamic can be difficult. Some will become closer, internal , more intense friendships are bound to happen. Some will talk about others, some will listen. Some will take, take, take, others will give. That is the way any group works.

Disenchanted members will find their way by working on what went wrong.If they can't find a solution they will leave. I have learned it is best to keep your thoughts entirely open or entirely to yourself when it comes to discussing other members. Say what you have to say to everyone, or keep it to yourself...

I dealt with the trolls post by reminding myself that this is the internet, you are all connected to me because of that. I share with you what I would with other casual acquaintances. no more.

It has been great to have some of my burden shared with you all. You have each helped me in different ways. Can you hurt me? Probably.Have you so far? No. So for now, I will carry on and hope that those that feel let down by our support group will reach their own solution.

Like the saying says"familiarity breeds contempt". Like any sisters( I have three in real life) we can fight, if our bond is deep enough we will try to fix the problem and move forward.

Fists up!

cathy987

Well said, Mary-Anne! Have a great trip to Switzerland.

maryannecb

Thanks Cathy, your post struck home with me too.

P.S. I have no preference for hotels. I will go with the majority.

Fists up!

ake

Ladies,

I completely apologize for everything that has gone on today. I know many of you are confused about what the hell happened and it's not fair to feel this kind of stress. We're breast cancer survivors. We are supposed to support each other. Unfortunately, that doesn't happen all the time.

These are the words that are making me leave the group...said by a member of our group. I can't feel safe or open in a thread where someone can talk behind my back in this kind of way...for no reason. So spiteful and confusing.

"Amy is all about herself. She always has been. It is always about her. She doesn't care about the group. She is different than every other member of the group in that way. She only cares about herself. Even from the beginning. She is the only one in the group who only thinks of herself. She's selfish and self serving."

With feelings like this, I don't know how I could possibly just let this roll off my back. I've tried to be as supportive to every single person in this
group. Obviously, to someone, it didn't seem that way. I wish that problems or complaints or needs could be communicated in a more honest way than talking so hurtfully behind my back. I'm completely confused about any action or sentence that I have posted that makes me appear selfish. I'm done and hurt and upset and sad. I trust every single one of you and to know that someone said these things behind my back is unfair and I feel completely betayed. I do the best I can, but this changes everything for me.

I'm a tough woman and I let things roll off my back usually and it takes a lot to make me back away something I love. I can handle those trolls and random posters. But, I don't deserve to have this said behind my back...for no reason. And by someone who I felt close to. I posted what was said about me because I wanted you to know that I wouldn't leave for just something little and I'm not easily hurt over petty things. This is ridiculous.

This group got me through the hardest experience of my life. I loved the feeling of sisterhood I felt from this group. I'm heartbroken that I found out not everything is what I thought and that I can no longer trust a member. Those that I have gotten messages from... thank you for supporting me and know. I am still staying in touch with those that know me for who I truly am.

Love,
Amy

Graycie

OH My, What happened I was only gone a few hour's and all h*** has let loose.

Thanks Tracy, I will check that out.

Graycie

Amy, I didn't know someone said all that about you. I am really sorry and understand how you feel.

Cathy and Maryanne, I agree with both of your posts.....very well said.

Paula15089

Cathy and Mary-Anne,
completely agree with your posts. It is internet, we have to take it with all of the risks.. or leave it.
Speaking for myself, i know that this group has given me more than words can say. And even though your support is virtual, i have gotten more out of your friendship than i have from some of my real life friends.
So i am prepared to accept all the risks that come with the virtual friendship so i can reap the benefits.

about the hotels - i go with the majority since i know zilch about Chicago..

Graycie

Paula, I couldn't say it better myself.....

Goodnite everyone.

debbie444

Cathy - maryanne - when did you get so wise????? Couldnt have expressed is so well but i throw my two pennorth in with that. It is sad when people talk behind others back , i go with th ethought that if you arent prepared to ssay it to their face , dont say it at all - that has kept me out of trouble so far in life ( except with my sister!!)
Graycie - for G=== sake dont go away again!!!!!!!

As for Chicago - i will go with majority - if it means Michelle cant swap and is stuck on her own, we will book there so she has someone to talk to, plus we will have a hire car so she wont be stuck !! This has to still happen as i have bought a cheetah bikini and i will look stupid wearing it over here!!

Debbie

ravdeb

Just need to comment..I was sleeping while this was going on.
True..this is internet. But, if we were a real-life support group, I think the same things would be going on if we were to meet on a daily basis like we do here. Cathy is so right. People DO talk behind others backs. Heck..I'd say that in our little town, conversation is based on gossip. We have a rule.. Don't say anything that you would not want broadcasted on the news that night!

I don't want to discuss this any further on the boards. I'm sorry feelings have been hurt. I certainly don't want you to leave, Amy. I met you in person and you are kind and beautiful and caring.
I never made a distinction between the "new" members and the "original" until it was mentioned. I find that to be ridiculous because we are on an open discussion board and anyone who wants to join can! Unfortunately, even trolls can join in.

Enough on that...Debbie bought her cheetah bikini so we need to concentrate on THAT!

I saw my family doctor today instead of tomorrow. My plans changed. He thinks I should do acupuncture. He wasn't helpful at all and told me to show my bone scan to my oncologist. When I told him I felt the bone scan wasn't even done properly, he just nodded. Why do they just nod???
And dummy me.. it doesn't say osteoporosis..it says osteroarthritis. Even my dh didn't notice that. My Hebrew is bad and I was in a panic when I read it yesterday! Makes more sense.
I will make an appt to see an orthopedist. My family doctor continues to disappoint me and one thing about socialized medicine is that I don't have a choice in family doctors. Whoever is in my clinic is who I see. He is new. He'll be with us for a long time unless he drops dead. The last one fell over and apparently had a stroke. He never returned. He had been there long before I moved here.

I had zofran but the GOOD thing about this system is that I got all my pills connected with chemo free.

Curlylocks

Good Morning Sisters,

Amy - you know how I feel. No apologies necessary.

Cathy - I knew there was a reason why we called you the "worldy one", I agree lets move on here and return this thread to the great conversation and friendship that exists.

Maryanne - you are right this is the internet but I am willing to risk it as we have a strong connection through breast cancer and the reward of friendship is great.

Debbie444 - the poll ends today on the hotel, that is sweet of you offering to stay in the hotel so I;m not alone. I can change my hotel reservation it is not carved in stone as the hotel allows you to cancel with no penalty and NOT charge your credit card up to the day of arrival.

Paula - you can stay in our room as we have two double beds booked and can add a cot as well. I also dont know anything about Chicago trusting on Deb's experience to get me around.

Deb - I think I told you that my mom has osethoarthritis (sp?) and it can be very painfully. She is 67 and walks like she is 80. I hope you get some solid answers soon.

I have to run and get a shower for work. Have a good day ladies.

Michele

ravdeb

Michele..my mom has osteoarthritis also and has been suffering from it for years. She'll be 80 and has had both hips replaced. The pain is gone since the hip replacements but range of motion is limited because of them. She is in constant fear of them popping out. It has happened twice and is unbearably painful.

I will see an orthopedist next Thurs. Hopefully he will test me properly for all things related to my bone ailments and I will have a clear picture. I don't like each doctor leaving me hanging. I had seen a specialist last year and he said to do nothing and if it got bad, to return to him. I don't think my insurance would cover it. It was covered then because I was still covered for my cancer treatments. I am covered for the onc visits but not for that. So, I have no idea what this new doctor will tell me but I'm getting tired of the run around and tired of being so health focused!

But..if your mom is 67 and walking like she is 80, you can only imagine how I'm walking!!!

Anonymous

Thanks for all the PM's!

I am really happy that you girls aren't going to let a "post" create upheaval. I knew that integrity would prevail.

------------------------------------------------

Quote:

---

This has to still happen as i have bought a cheetah bikini and i will look stupid wearing it over here!!

---

Debbie - OMG - LOL

Graycie

Debbie, you aren't going to get rid of me that easily. Cheetah bikini, I love it.........lol

Michele, I don't think you have to worry about the hotel I have a feeling that will be the one everyone will choose. Actually I thought it was pretty much decided before the poll. I guess we will wait until 10:00 to see. Now is the Eastern, central or Pacific time? lol

Deb, I hope you get the answer's to all your ache's and pain's. If your Mom has osteoarthritis than that is probably what it is. I think that is hereditary. And you are thin. My doctor told me thin people lose bone density quicker than heavier people. I used to fit into that thin category.

Gosh, It is snowing again here. Is it ever g oing to stop? I am getting pretty sick of it. At least I don't have to go to work today but I have a lot of work to do around the house, cleaning.

Gail

Curlylocks

Hey Graycie, I see your new avtar, hair looks fab!

Its snowing like crazy here too! Snow, snow go away.,,

Have to go back to work. haa haa:)

Michele

Anonymous

Graycie -
I think the poll is eastern time. A few of the girls expressed an interest in the Hyatt/downtown area...that's why I thought that a poll would be the fair/democratic thing to do. No snow here today - in fact it's going to be 50 degrees! A HEAT WAVE...ha - ha! LOL

I'll send some warm breezes over to you and Michele!