An Apology with a Twist....

I am not a know-it-all.  I clearly state that it is my personal experience and that everyone is different.  I offer what has helped me.  I try to ease fears, not create them.  While it is my very personal experience I share - if there is anything to be gained from it - take it, use it, make it count - if just one of you fighting this beast gains something, then it is worth the 'typing through the tears'. 

Every good intention can, at times, have unexpected and mixed results.  I have truly attempted to raise 'awareness' with the upcoming 'Pink Parade' of which I am so fond...NOT!.  But it is Breast Cancer Awareness Month and laying myself out there - yes, my 'personal' experience - has led to being berated for instilling fear into those early stagers that are fearful enough already - for that, I sincerely apologize as that was not my intent.  It was meant as an informative and 'be viligant' message to EVERYONE that encounters this beastly thing - at whatever stage.  Yes, gals, it can be erradicated at an early stage and you may never encounter the beast again.  Bless you if you can.  I applaud your bravery and respect your fears and I was in no way trying to 'frighten' you into thinking there will be a 'black cloud' hanging over your head for life.  The best message is to just be viligant - there is a trial taking place right now concerning the benefit of a breast ultra-sound either in addition to or in place of a mamogram for its ability to detect anomalies in dense breast tissue that a mamogram cannot.  http://www.medicalnewstoday.com/articles/107356.php

The twist to this apology is the on-going issue of posting to appropriate stages.  Newcomers are terrified and are desperately searching for some way to ease their fears - they don't know the forum and are just seeking help and support and information - they learn, as I did when I was 'new' only a year ago, that sometimes a little respect goes a long way but respect is not what anyone is thinking about when hearing those words 'you have breast cancer'.  At that point, you don't know the stage, you know nothing about anything other than OMG and your world is up side down.  Once settling into the dx and treatment and options - understanding the different issues encountered at different stages, the posts become more relevant.  However, we have stage iv - while we invite your well wishes, your support, your encouragement, your sympathies, your jokes, and other wonderful things you say to us - unless you are stage iv, there is no understanding of what it is like. 

Once again, I will set myself out there as an example - a 'personal' experience.  Some feel I don't belong posting on the lower stages as I don't understand - oh, I do, very well - been there, done that, moved on to stage iv.  This board is now 10 - my experience began 11 1/2 years ago - had this board been here, I would have been a stage II poster.  Here is an example of a post I might have made (in the past tense):

I remember all too well what it was like as a stage II - I can still taste the chemo everytime I walk into the treatment room for my infusions now.  I remember having wonderful D boobies and hair down to my ass. I remember playing, camping, running, watching and loving my then 8 year old who had to watch his mommy get sicker and sicker and sicker and had to learn to cook - I did all my cooking on my treatment day after (steriods still kicking) and made micro wave meals for the week so the little one could 'cook' dinner for us.  He did get pretty good with mac and cheese on the stove.  Friends came in and helped me with laundry and I worked the entire 8 months through it all.  And then it ended.  My brain didn't come back for a good 6 months.  My finances were in ruin.  I missed so much of my little boy's life - concerts, ball games, camping trips - but he hung in there and was my little rock.  And then the Tamoxifin - BTW, Arimidex does have a few more se's  but good golly, 43 and premature menapause due to chemo - ahhhhh, I thought I would lose my mind.  I had to cut my hair but for the luck of the draw, my treatment combo let me have a 30% shot at not losing my hair - it thinned but didn't all go - it did in other places...lol.  I feel very confident that I do understand the early stagers but I have to go through the story because I am a stage iv now and I am not supposed to get it I suppose. 

Here is the present - I got to see many more concerts, ball games and camping trips and had 10 plus wonderful years after my treatment ended with my son.  He is now 21 and a Marine and I couldn't be prouder.  I have been dx'd with bone mets and am now stage iv.  Although there is no expiration date stamped on my foot and with treatment, I may yet have a life, a forever changed life but life - for how long is unknown.  I have bone mets only - a blessing, in a way as my treatments are kinder than most of my metsisters.  Daily, I read about my new 'family' on the stage iv forum about not going to be able to see their children grow up.  I did, I was lucky to have that time and I so feel for my sisters - but, the difference with the stage iv group can be pointed out so clearly here - at stage II, although I lost time with my son, my treatment ended and I got to see him grow up.  Today - I face not seeing him be married, never being able to hold his children, my grandchildren, never knowing the wonderful woman he will choose as his wife, I may not see him finish his Marine Corp enlistment and see what he will become in life.  I won't be missing a part of his life as I did at stage II - I will be missing the rest of his life.  While I was sicker than a dog, I was still in his life - I now face that there won't be me for him to call when he has a problem, he won't have me to text to give him a wake up call, he won't have me to comfort him when something goes wrong, he won't have me to guide him, hug him, love him ever again.  All I can do now is always be there the best I can, put things together for him to remember me, write him letters that I will not send but he will get in a box when I am gone.  Things - all I have to leave him are things.  This is stage iv breast cancer - there is no way anyone but a fellow metsister can understand how this feels despite how compassionate one may be. 

While treatments may be similar and have similar se's - the reason for the treatments are so very different.  I am not going to go further, enough said.

I send cyber hugs in a big way to each and every one of you that has encountered this beastly thing, to every life it has touched and family member here for help to support your loved one. 

Now, can we get back to being the supportive, helpful, caring, loving, compassionate, wonderful, respectful group who is here to help each other in our collective fight against the common enemy - breast cancer? 

Group Hug?  LowRider