Quotes from you for MBC Awareness Day (Oct 13)?!

Thank you, AnimalCrackers, Linda, Mab, Zills, and Mara.

Thank you Shetland Pony! You have captured the essence of this experience and this would be the best inspirational message we could share.

Deanna...bittersweet is exactly the right word for every happy thing that happens now. We can never again be carefree as we continue to lose BCO friends, lose our physical capabilities and sometimes feel that we are losing ourselves even when the disease is stable

As long as successful MBC treatment is "a few extra months" it is hard to believe in pink. Tomorrow could be a day to celebrate if real resources were dedicated to finding a cure.

Where are our quotes posted?

It is disappointing to me that only our positive feelings were captured for a Facebook post. It isn't easy to talk about the reality of our diagnoses, at least for me. Your choosing to only post our upbeat "put my best face on" entries adds to the shame of this disease, whether intentional or not. MBC is scary, it hurts, it's lonely. And it's too uncomfortable for everyone else. I for one am sick of trying to make everyone else feel better. This thread and these discussion boards provide an honest, safe environment with other women who "get it". Picking only the words that paint a pretty picture makes me feel betrayed.

Totally agree

Thank you for acknowledging our posts.

Sometimes we feel really marginalised as a lot of us aren't counted (only de novo) and any publicity is pink, or positive. Yes, it is possible to live & enjoy life as stage IV/metastatic, especially when you're stable and treatment is working. But that's not the case all the time.

Progression and the failure of a treatment is scary. Dealing with new side effects of yet another treatment (in our diminishing arsenal of treatments available) is scary. Dealing with the symptoms of the newly progressed cancer is difficult.

We push on and do our best, but it's not always easy and sometimes we struggle. I hope for the best, but know one day that's not enough.

Yes, thank you for the more updated graphic. I had seen the first one and was disappointed not to see other posts in there. I believe both the realistic and hopeful aspects of MBC can coexist.

I also agree that only having people who are doing many things can make others feel that they are not good enough, if they can only just make it through another day (which is amazing by the way). All facets of this disease need to be included, not just for stage IV but for all stages of BC. Make it more realistic.

I appreciate what you are trying to do, but I think that these still sound so "put on a brave face". And I'm not saying that I don't put on that face most days. But these still shy away from the devastation of this disease. If people don't understand the devastation, then why would they be motivated to work so hard to find a cure?

Well said, Bluefrog! Exactly. Mods, thank you so much for listening to us, for opening up a dialogue, and asking for our input. No, I don't think those words sum up what we have been saying. I know it is hard for people to hear and hard to understand. Please re-read the comments from October 11 forward. It is important to see that even as we (as a group and as individuals) hold hope and appreciation for today, we also hold frustration, sadness, fear, etc. Some of us can live a "normal" life and some cannot, and others can do it just some of the time. Never-ending treatment is a bitch. (Oops, did I just say that?) So are cancer symptoms. We know how it will likely end if better treatment or a cure is not found, and we mourn our sisters and brothers who have died of breast cancer. One of many quotes from earlier that really touches me with its honesty is Bluefrog's "I am living with metastatic breast cancer, and I still feel heartbroken every day." Or kt's "I hope for the best, but know one day that's not enough."

It will be hard for someone who is not stage iv to truly speak for us. And we want to avoid cliches. Maybe some of the women here would like to re-state some previous comments or compose some additional ones with the proposed format in mind. Is it possible to come up with the right words for such a graphic, words that will be true and representative? Words that will help wake people up to reality and motivate them to promote more research and better treatment? Words that will encompass our grief and pain as well as our hope and bravery? Words that will help other stage iv people feel more understood and less alone? Or is the proposed format of sound bites just not adequate? I'm not sure right now. If it is to be done and done well, it will take some careful thinking, writing, and editing, and a clear sense of purpose. I think we need to be realistic and honest without driving people away. We need a bridge, not a wall.

like it Deanna!

Mary Anne

November 8, 2016

G'evening!

I just joined this Forum last week. After being dormant for 11.5 years, those damn cancer cells 'jumped on my bones!' The first indication was hairline fractures in my neck (cervical spine) and like a robot, I said, "OK" when my medical oncologist advised me to get on my radiation oncologist's schedule--for 10 treatments." Foolishly, I thought since I endure 33 radiation treatments for my Stage IIIA breast cancer in 2004--these 10 would be a 'walk in the park'--by comparison. Not even close--devastating, as was wearing cervical neck collars for six months.

It's taken me a long time to "process" this new reality. At first, I just couldn't imagine our carefree life coming to a halt. We had been full-time RVers for eight years, and now do that, part-time, along with Christian Volunteer RV work. I'll be 75 this weekend, and it really gripes me that the cancer-related fatigue has me under it's spell. I try not to "fight it" but gracefully come upstairs and stretch out for at least an hour. I hate the way I can't move as quickly as I used to, and while my IDEAS are still running rampant, I just run out of steam and don't accomplish a lot each day.

I agree with Shetland Pony--we need to raise our collective voices for more $$, more research, more support to MBC--it's like a disease that's hidden in the closet! It's not our fault--we did nothing wrong!