HAALT

I have been speechless.

Which as you all know is a first for me.

But I am going to lay it all on the line.

Like Karen Blixen said in Out of Africa, "I've lost everything, I am not too proud to beg"

I had a pretty good life going for me before the beast came into it. And after it did I tried my best to be a good patient, a good soldier, be a positive pink person and get myself up and out of the  depths of despair it leaves us in.

I found my cybersisters and I hung around with newbies. That was my biggest focus because I will never forget the fear I had in the beginning and I will never forget wishing I had someone say to me - I HAVE BEEN THROUGH IT AND I MADE IT THROUGH EVERYTHING YOU HAVE-

So I  decided to become that person. I think in my small way, over many boards over the past six years I have helped a couple of women. And I am grateful for that.

I was diagnosed with The BAD cancer. So instead of duck and cover I decided to take it on as one of my main cruscades. I want the word to get out about triple negative disease and I have been working very hard to do just that. In fact, next weekend I have been invited to speak at the African American Museum about tripleneg and young African American women. It is a dream come true for me.

But backing up, just when I reached my five year mark and I thought that maybe I could finally exhale and have HOPE- REAL HOPE- I get rediagnosed. It is a new primary they tell me. But they didn't tell me a lot and I have learned the reason my onc has had me in chemo since April and he is hitting me with every drug he can, and two have been mets drugs, is because it was not contained and things weren't as rosy as my breast surgeon made it out to be. So I am scared. But I have great role models here. The metsters I have come to know have shown me that if the worse happens I may be able to find a modicum of the grace and courage they have.

In the meantime, I am fighting to get one particular friend, whom I love dearly, the best help she can get to fight her virilent mets that won't leave her alone. (I am going to be by your side- you know who you are and I  love you so much- and we WILL meet at Christmas.)

In the midst of the fear and anxiety of everything that was happening the board changed. I am not good with change. It felt so warm and welcoming before. I could find my friends easily. I could navigate it easily. I felt lost and lonely.

Then we start to lose sisters here. Dearly loved sisters start dying... how can we NOT react? Last summer, remember when all those sisters got such terrible news and we all freaked out?  That is what this reminds me of, but  this time nobody knows where to go because we haven't found our comfort zones here yet.

HAALT

This is a principle that I think applies here:

H- Hurt

A- Angry

A- Anxious

L- Lonely

T- Tired

We are Hurt by the hard feelings that have passed between us- or by just watching hurtful things. We are hurt when our words are edited or deleted. It is a terrible feeling to find a post of yours chopped up or vanished. And when it happens repeatedly, it really hurts.

We are Angry at the Beast for taking our sisters. Angry at each other for not expressing views the way we feel comfortable with. Angry that we are being monitored.

We are Anxious. OUR SISTERS ARE DYING. This brings out ALL our fears. We ALL have placed ourselves in their positions. It is frightening because it is so close to home.

We are LONELY. Lonely for the way things used to be.... the way they were before the beast, and the way they were when we were a discussion board and had "Faith" as our mascot with her weirdo complexion and appearing and disappearing sunglasses and sunhat. We want SOMETHING of the old days back. It was a safe, welcoming place that made us feel good. I apologize to the site designer, but it is very clinical looking now and the way it is organized is confusing and I still haven't found the jump to last post button. I don't know about you all, but I miss our peach hangout.

We are TIRED. Physically the treatments have taken their tolls. The residual effects have lasted with us... or we are in treatment and we are exhausted from that. OR we are Tired from the cumbersome navigation getting around here. 

Things were bound to come to a head and blow.

I believe in letting people get things off their chests.

I don't believe in constant censorship and editing because it makes people assume the worst: if that post had to be edited it MUST have been bad.

I believe a mod should step in if someone's private information is being given out or if personal invective against someone is used. But after that, we all had cancer, we can handle a disagreement I think.

I do not believe in ganging up on one person.

I do not believe in deliberately trying to hurt someone.

I do not believe in constant censoring of only a very few people.

I do not believe we can have any more pain here.

A house divided can not stand.

Which leads me to my "other" house.

To everyone who thinks the worst- it is just a place I set up when I was so lonely and scared because everything was so cold and forboding here. But it is also a dream of mine. If I can connect with women on a smaller one to one basis and help them, then I am keeping it up. I will always post here at BCO and in no way am I trying to step on anyone's toes. Honestly, I am simply trying to expand my ability to reach women with breast cancer. Nothing more.

So fellow sisters- even those of you who supposedly are in a war with me- I am not in a war with anyone except the beast.

Talk it out. Then put it behind you and move forward.

Let us PLEASE stop the fighting and the jabs.

Let us remember why we came here in the first place... we were scared and we took a chance and posted a question or gave an introduction and then we let the sisterhood take over.

When the chips are down, my money is on the sisterhood and I know we can rise above this.

So-  

Hi,

My name is Gina. I am a two time breast cancer survivor....anyone want to talk?