Question about protocol

Question for my stage IV sisters... Do you ever hesitate to respond to threads from lower stage sisters out of fear that the stage IV part of our diagnosis will scare them? Thoughts?

I totally get that lost feeling. Not only am I trying to adjust to life with a stage IV diagnosis, I'm also trying to recover from a 7.5 hour emergency spinal surgery. My leg is still 80% numb and it's hard to process the stage IV part when I am still having trouble with simple things like walking. Sigh... Yup, lost

Thank you so much, Nancy. It means more than I can say. I had about 12 hours notice before the surgery. I wish I was kidding. And then the hit me with the stage IV. Talk about your world being turned on its head. I'm still trying to figure out what end is up. Just putting one foot in front of the other and being extra kind to myself. It's really all I can do right now. Eventually all will fall into place.

They radiated my spine and now I'm just on ibrance/femara.. oh, and can't forget the lupron. At 42, my ovaries weren't finished naturally and there is no way in hell I'm going through another surgery right now.. so Lupron it is. This whole situation sucks.. just sucks.

illimae, I can't imagine being Stage IV from the get-go. I was 1A 6 years ago, and again last year when I had a recurrence. Six months later accidentally found mets on 2 ribs via routine CT scan (and correlated by bone scan). Since then a new lesion on my sternum, and now a paratrachial lymph node. A friend and BC sister said to me, "You're my nightmare" - and I've been devastated ever since. I want to reach out to newbies like I used to but don't want to scare them. So I read a lot and do t post much because I'm still finding my way...

finallyoverit- I can only imagine how difficult this time had been for you. 12 hours notice doesn't give you any chance to process what's going on!! This disease is so devastating physically and emotionally. I'll have to go back and read your other posts to see where you are physically - how are you doing emotionally with all of this?

Even if we can't talk with newbies - we always have each other. And while I wish none of us were here, I appreciate more than I can say that others understand. Thank you so much for being here!

I can't speak for everyone but I personally like the honest responses from people who have been in the game a bit longer than me. While I am a positive person and obviously hope for the best I'm not one to sugar coat or ignore the possible future. You ladies have a lot to offer and your experiences and trials are valuable. I know it can't be easy and at some point you might want to respond to a thread with "I did everything I could, exercised, ate right, slept like I'm supposed to etc. and I'm still stage IV". We get that and I appreciate that honesty too Please don't stop responding though. I would rather hear the truth from someone who's been there as opposed to burying my head in the sand. I also think that those of us currently diagnosed with a lower stage can offer support, companionship and even humor to our sisters in a different part of their diagnosis. I can talk to my family and friends til im blue in the face but sometimes it's the words of strangers who have/are experienced the same physical/emotional issues that help the most. Sometimes that's all it takes to get through get through the day.

I almost never look at the lower stage threads these days. In years past, I would read something and consider if my reply might strike fear in the lesser stage gals. If I felt it might, I did not reply. If I felt I had something worthwhile to contribute, I did. Most often, I didn't add anything to the conversation.

I'd had about a month there when I was getting tested before I found out I was stage iv from the start, and I can still recall how incredibly fearful I was to even see the link for "stage iv/metastatic only" section. It was incredibly difficult to click that link when I learned that was now "me". So I always keep that in mind about those who are lower stages.

And similar to you, exbrnxgrl, many times when I added my two cents worth, the thread would dry up. Hardly any more or no more posts. You'd hear crickets, as the saying goes. Even threads that had been active like gangbusters, suddenly, nothing. It happened too often for it to be a fluke. I am very intuitive about things like this, so I could tell my presence made others flee. It's okay, I moved past it.

To hear that a bc sister and friend told you that you were their nightmare , Nancy.....grrrrrrrr, that makes me so mad!

I started out IIIC which was a new category then and thought to be poor prognosis. I felt more comfortable on the stage III posts. Now I am IV and mostly stay on stage IV posts. The people there are great and many thoughtful suggestions and lots of research and heads up about new meds. I think part of it has to do with what is relevant to you at the time. At the beginning I did feel that stage IV was a death sentence and glad I didn't have it- but, I didn't know anything about it at the time. I'm just surprised that stage 0-->Stage IIIC all have the potential to become stage IV-none of us are immune to this. (and some people 20+ years later) Ultimately we ALL need $ and options for a cure.

Check out some stage IV and see if they work for you.

Went for my monthly Lupron shot today. The nurse looked at me and asked "anything I can do for you today?" Not sure why, but I started crying. I was just overwhelmed by her compassion. She gave me the biggest hug. Not sure why I had that reaction.. I really haven't shed many tears since this mess started.

Finallyoverit- I understand completely your feelings about your progression. I feel like I went through all the really dark horrible days and nights with the initial diagnosis. Always felt like the other shoe was going to drop- now it has and I feel calm.

I do look at the active threads outside the stage iv forum, and post when I feel I have some useful knowledge and experience to share. I have been able to provide guidance to some new people. But other times I leave the responding to others without such scary stats. I sometimes assert my right to participate in a discussion that is relevant to all stages, and not be shunned because I am stage iv. One of our lovely early stage members, when I mentioned to her that I was afraid my stats would scare people if I posted, had a different take on the question. She thought it could be valuable for someone to see that I was managing stress and anxiety well in spite of my stats.

All you thread killers, maybe your post was the last because you said it so well, there was nothing left to say. At least that is what I chose to believe when I heard the crickets!

Within the stage iv forum, I want to hear from my stage iv sisters wherever they are, no ranking. This is a community; everyone is included and has something to contribute. I will admit that there are times I feel the need to protect myself from the three topics that scare me most, so I do appreciate it that there are dedicated threads for those, and I can choose if and when to delve into those subjects.

A bit of a sensitive topic for me, but there have been a few too many times when I have been made to feel unwelcome on stage IV threads. Some feel I haven't suffered enough to earn my stage IV cred. It's upsetting but my experiences are what they are. Stage IV does not look the same for everyone but my fate won't be remarkably different in the end. I've ever been angry or pissed off at anyone, with respect to bc either. Some people find this off putting too but that's just me.

Thank you everyone.. maybe the reality is finally settling in. This disease just sucks. Words just escape me this morning. Wishing my bco sisters a pleasant, pain free day.