Taboo subject

This is a very interesting topic with a lot of strong feelings attached to it. But it seems mostly to be handled respectfully and I am glad.

When I was diagnosed, I was offered the oppty to be in a 2 month support group for couples going through treatment.  Well, there were 4 couples.  We were the youngest (early 50's).  I had IDC  and was HEr2+, as was one other woman. The other 2 women had DCIS - in late 60s or 70s.  The one woman just had a 'reduction' on both sides and no other treatment except hormonals. The other woman had lumpectomy, rads and an AI.   Very different experience than the other woman and I who were showing up every week bald and sick most of the time.

Well every week covered a different topic. And as we all got to know each other better, more and more depth of feeling came out.  And I got to really know the 2 women who had the 'easier' diagnoses and learn what they were going through.  The one woman who had the reduction was a grandmom and one week she talked about how she had loved to nestle her grandbabies into her (ample) bosom and now she couldn't do that any more and she sobbed as she talked about having to throw her old bras away.  Until then I had thought she had it so easy but that night I realized that LOSS is LOSS, no matter what. And she experienced loss and was grieving for it.  It was a very interesting experience and gave me, I think, a good perspective on the suffering that goes on with a lesser dx and tx experience.

Of course in the bigger picture, ALL OF THIS SUCKS, every type, every stage, every tx.  We all do the best we can - and some of us have more 'fight' in us than others. I always figure there are all kinds of people out there and a selection of all of them get BC so we are going to find all kinds of women HERE as well. I worked straight through my tx, the other woman in our couples group took disability and stayed home. She said that she wished she WAS working, because all she did was sit home all day and worry. So you never know......

I think your feelings are totally understandable. Objectively, we all know it is difficult no matter what stage you are or what tx you need. But who can be objective???  I guess we lose that when we have our own stuff to go through.

MMountain- You expressed your feelings very well, thats how i felt too, You are very brave as well for posting that comment!

Thank you Molly for posing the subject.  Thank you Brenda R for helping us consider the other side.  Thank you ladies for all offering balanced and caring comments and playing nice!  You are truely amazing women. 

This is an interesting topic, and I too have rolled my eyes at people at an earlier stage than i complaining about radiation or Arimidex aches, where I am thinking "well, it beats being dead".

But there is that saying that goes - "People trip over pebbles, not Mountains."

In a way, because I was dx at a later stage, I knew I had to do everything I possibly could. I knew I was fighting for my life. My boob? Chop it off. Chemo? Bring it on. Rads? Sure. OK. What else?? Ovaries - don't need them. I argued my Onc into giving me Zometa, I have changed my diet, I exercise every day, do everything I possibly can to give my children a chance of having me around while they grow up.

It has not been easy, and it still isn't, but I think if I had been dx at an earlier stage in some ways it may have been harder. If Chemo wasn't a sure thing, I may have had a harder time with it. If my cancer hadn't been so huge and invasive, making the decision to have a Mx may have been harder.

I guess what I am trying to say is just exactly what everyone else has said. Everyones   experience is different, no one has an easy time, and as stated above, we were all hoping for NO cancer.

KerryMac, you said something I appreciate, about being dx at an earlier stage being harder in some ways.  I tend to think you are right; I was dx at stage one, grade one and while a mx was a given given the fact my bc was multicentric chemo didn't offer me much of an advantage, so I opted not to have it.  But I still wonder about my decision.  

I think anyone, with any diagnosis, has the right to complain about bc treatment.  It just sucks.  However, I understand what Molly is saying about people using the dx as a opportunity to say poor me.   And there is a difference between complaining about treatment and side effects, versus getting stuck in a pity party.   

I think these message boards are empowering because they let you express that anger- that we all have- out into the universe where it does no harm.  I would never express this frustration to my friend, but it doesn't mean I don't feel it.  My post does seem a little harsh upon reading it again. Survivor guilt takes on a whole new meaning with this disease.  My friend and I have shared many of those "insider" moments and I hope we have many more years to share them but my reality is that she may very well outlive me.  I was diagnosed stage IIIC in my 40's and still have a teenage son at home. I just became a grandma.  I savor every moment with my famliy. I shouldn't feel guilty about being happy about being healthy today.

mmmountain- So sorry for the loss of your friend (((((((((((hugs)))))))))))

I have felt just the opposite of what you're talking about Molly. I felt bad because I was too sick to "do it all". I missed alot of work and my DH was very busy with the house and our grandkids and I was working with a Stage 4 that battled for years and never missed a day. I truly tried, but then I would over do and it would be even worse. I think what it comes down to is expectations. What we expect of ourselves and others. It would be much easier to just go with the flow.

I hope I won't get into trouble posting on a stage III thread when I am stage II given how territorial BCO is, but you sisters always hog the interesting threads and topics - not fair! :-)

I have two completely contradictory reactions to Molly's post, and I cannot reconcile these differences, so I will simply express them here:

It does take courage to post what she did and any and all "controversial" ideas and thoughts should be welcome. However, people often forget that we all come here with cancer as we are - WITH or WITHOUT our life's traumas, pre-existing conditions and constitutional vulnerabilities. Therefore, you cannot take two women, give them the same dx and treatment and expect either the same result, the same attitude, the same support system or the same circumstances.

For example, I could make an argument for how fortunate Molly is. She has a job, which is more than many in our country can say. If we go further, get petty and make this a competition, we could say that her four children constitute an "assist" because children, hard work as they are or burdensome as they can be, are also HUGE incentives. Never in the history of the world has nature created such a huge incentive for survival and thriving as the child, for the mother.

Many of us come to cancer with different baggage. Some of us have life threatening, chronic illnesses in addition to cancer; illnesses that destroy lives and shatter dreams, and we almost welcome cancer treatment with its array of choices. We are like Stage IV ladies in two respects: death is not so exotic, and we are in treatment for the rest of our lives. We must often choose between one illness and the other because both cannot be treated, and that is just the way it is. We must choose, perhaps, between QOL and early death because that's just the way it has to be. Period.

Or perhaps we are someone who had chemo's worst side effects. Perhaps Molly is the lucky one who could work, because when you are in an emergency room with low WBC not even four children will enable you to work. Perhaps you are very early stage, but you lost a loved one to the same disease and sometimes feel paralyzed with fear.

And there is this part of Molly's post: 

BUT- I have seen many posts where someone who is at a lesser stage complains how they can't work- and how do they get Disability. I know that is is none of my business and I don't knoe theris situation- but I cannot help but get a little angry! I think some people (a small minority) use a cancer diagnosis to say "poor me" and try to get out of things they want to do. Yet- there are many Stage IV women who work, volunteer, help others and give back to society on a daily basis.

So this assumption is that, for example, Stage IV women who don't "help others" and "give back to society" are just saying "poor me" and trying to get out of something they don't want to do? This sounds rather horrendously callous, and what is anger should probably be compassion. That paragraph in italics shocked me. Stage IV women who get out and volunteer may be many things and may have several characteristics, but one thing they have to be is physically able. Not all Stage IV's are created equal. It is one thing to have a single bone met and another to have progressed to bone, liver and brain. Anyone who posts on BCO should know that by now. 

Did you know that I only missed one day of work because of my BMX? So am I to think that the women who missed weeks were either faking it or being indolent?

Yes, it takes courage to post what Molly did, but the consequence has to be an honest discussion.

OK, so now let me go about somewhat contradicting myself:

Your know what really makes me angry and judgemental and uncompassionate, etc....

IT IS WHEN WE HAVE TOPICS STARTED IN CAPS!!!!! BY SOME REALLY EARLY OR NOT EVEN DIAGNOSED PEOPLE!!!! OR SOMEONE WHO SAYS HELP!!!! I AM BEGGING FOR HELP!!! And because there are so many nurturing women on this board, they get everyone to come over and fawn over their situation while others suffer in silence.

And this speaks to one of the unfair truisms of illness: you pay a penalty when you don't complain because people do not acknowledge your pain. And here is where Molly's argument is strongest and most understandable, IMO.

I wish people would show some sensitivity to that fact that is is a breast cancer forum, and if you are scared/panicky, etc.... over cancer what the hell do you think everyone else here is?

I cringe when I think of some of the stage IV ladies having to read these TABLOID-LIKE HEADLINES!!!! SO SCARED!!!!! It also makes me jump out of my skin a bit but if I were stage IV I would be furious.

I want to be clear - I think it is wonderful that we can all surround a given person and have a long thread in their honor and there is no reason why it can't be for an early stage person. But I do confess to getting annoyed WITH THE HEADLINES!!! by someone who should have the common sense and etiquette to tone it down. There. Insensitive, I know. 

I'm hopping in on this one kind of late....

I have to say, I have shared the thoughts on the different stages. However, I didn't even know there were stages, and HER2 +++ and triple negative, BRCA1, etc, when I was first diagnosed.

When I was first dx, I was told I had DCIS. So I read about it and was happy to hear 'my' cancer wasn't life threatening. Unfortunately, during the next weeks, I found out I was actually stage 3a. I used to come here and look at the threads and cry because stage 3 was my group. What happened to DCIS and why couldn't that be me? I am sure my stage 4 sisters would love to be stage 3!

This was three years ago and in that time I have seen women who had no node involvement get mets, women who were stage 1 and 2 get mets (triple negative gals seem to have a special curse). The prognosis vary, for sure, but truly anything can happen to any of us.

I have always been troubled by the stories of, "I worked every day while I was getting chemo and didn't miss a beat." When I was sick, I had a friend (different ones) take me to my first two chemo treatments. Then my brother called me and told me how a lady with cancer at his church was working full time and didn't need any help. He made me feel ashamed for asking my friends to help me. So, I drove myself to the rest of my treatments. After it was all said and done, I wish I had not done that. I had friends who would have been happy to help me and spend that time with me. I was unmarried and living alone and I could have used the support. I honestly don't know how people work through chemo. Kudos to them... it is truly a blessing!

I know cancer sucks for everyone and we all do need to try to offer whatever support we can and try to have a thick skin..... we're on the same team!

Love to you all..... </p>

Miss S

Dear Molly,

I applaud and have much respect for you for seeking help to deal with the feelings that seem to be preventing you from enjoying a full recovery from your bc, and reclaiming your life. 

((((((Molly)))))

Had to post and say how much Athena's comments about the tabloid-like headlines cracked me up.

 I'M OUT OF PEANUT M&MS!!!!!!!!!!!!  HELP ME, PLEASE!!!!!!!!!!!!!!!!

I think this is going to be my new mode of communication. 

Thanks for the chuckle, Athena!