Radio clip about us

[TammyCross]

Brian Lehrer on NYC public radio did a brief piece for BC Awareness month. called "What's Hidden Behind the Pink Ribbon." He was asking this woman who has been through it and callers about preferred language (survivor? - no, she didn't like that one; "fighter?"). One woman said that the language about "cure for breast cancer" leaves out people with mbc. We are hidden, and the funding is disproportionate. The point was made about how often tell us we are brave and strong, but sometimes we aren't. The guest said she has crying days, too, and she doesn't want to be held to being "courageous" all the time.

It is slight, but worth a listen.

wnyc.org/story/whats-hidden...

[HelenWi]

Thank you Tammy. I’m glad that our story is getting some attention. I was getting frustrated with “awareness” and its rather vulgar commercialization before I was dx’ed with MBC and had decided that all my donations would go to pure research.

When Cokie Roberts died a few years ago, I was very sad — and of course was curious what stage she had originally, when it came back, etc. (I often did this I think to convince myself that I was safe) I came across an interview with an oncologist from UCLA who said that “clinically cured at 5 years” was not really true, that is no guaranteed cure yet. Certainly we are in a better place today than ten years ago but MBC certainly needs more focus.

The word “fighter” really irritates me as well. What does it even mean in this context? And it paints someone who dies as having lost instead of having lived life to the fullest. I do like the word “thriver” so much better. Just like other words in our culture, I hope fighter becomes labeled as incorrect in the near future.

Anyway , thanks for sharing this! Best,

Helen

[Iwasborntodothis in reply to HelenWi]

I have forbidden my husband from using that word in my obituary.

[TammyCross in reply to Iwasborntodothis]

I don't have a husband so I put it in instructions: Do NOT say I lost my battle with cancer. I am not at war. I am not winning or losing. I told both my health care proxies. One pushed back, making excuses for that language, which is ALWAYS used in obituaries. My choice, so shut up. (My other health care proxy just resigned!)

This woman also gave me a chocolate lion for my birthday.

[RedAzalea]

Chris, thanks for posting! Loved the bit with the caller whose wife does her own research, presents it to the oncologist, who then often agrees and goes with the patient’s lead for treatment.🥱however lovely it is to have an Onc who is responsive, it serves only to further convince me the metaverse is still deep in the wilderness.

[TammyCross in reply to RedAzalea]

Yeah, how is it we can know better than they do by Googling than they do with a medical education, some years of practice, attending conferences...? It doesn't make sense.

[TammyCross in reply to TammyCross]

Whoops, that sentence was a mess. Fatigue and I missed my nap today.

[Hopeful4Cure in reply to TammyCross]

Nope, you are right and then they practice on us. Thank GOD for this forum.

[HelenWi in reply to TammyCross]

This coming Saturday Dana Farber is having this: “2023-2024 EMBRACE Metastatic Breast Cancer Virtual Forum “

Their experts will discuss the latest research. I will miss it but they will provide recordings. Last year’s presentations were extremely interesting.

[fancydog]

Thank you Tammy Cross for posting this. I agree with everything said. I really hate this month because of the ignorance the general public has about Pink Washing and lack of funding toward research. I too prefer the word Thriver to describe my Metatstatic self.

[Andersl in reply to fancydog]

My thoughts....I despise the word fighter

I prefer the word thriver.

I often say I'm managing the disease together with my oncologist.

I hate being told on a bad day "you're usually so positive" oh yeah well you step in my shoes I'd like to say!

Sometimes I feel its gone on so long...too long...

Almost five years; 5 recurrences; non stop chemo and all its side effect and; 3 separate radiation treatments to my brain.

Nowadays I wonder more often how long have I got? What will take me out? The cancer, side effects of treatment or another health condition.

My children are "struggling " with the emotional ups and downs.

[TammyCross in reply to Andersl]

Yes, I hate being reprimanded when I am down, scared, weary.

You have really been through the wringer.

I wonder , too, whether it will be cancer, side effects (not too bad yet, but they do depress quality of life), or something else. When I get something else, I protest. I thought I had done enough by having incurable cancer. I should be exempt from other challenges.

I am not liking "thriver" as much as I used to. I think I have moved on to "and yet she persists."

How hard on your kids. How old are they?

[Andersl in reply to TammyCross]

My "kids' are 43 and 41. Not really kids but adults looking on at what's going on in my life. Probably reminding them of their own immortality and raising a range of emotions within themselves they have to deal with.

Living longer and the impact on ourselves and our families needs to be addressed. At the moment it seems to be a one sided story the drug companies and medical personnel staff enjoy telling.

[TammyCross in reply to Andersl]

Better than little kids who need you every minute, but 40's are a vulnerable age to be dealing with these thoughts and realities.

Good point. A little sick of the rah rah of living with mbc, because look at this group -- we have lost two major posters this year, one at five years, and more to come. As I was told when I was diagnosed, as the keynote speaker/researcher said at the first virtual mbc conference I attended, it is not yet a "chronic" disease. We are not there yet. Some are lucky that the more benign treatments work for years, but if not, the stronger treatments can be brutal. I get annoyed sometimes at my oncologist that she is more concerned about my quality of life than my survival, but I guess she has seen it all and knows what she is doing.

I know we prefer postings about living 19 years, or 10, with good QoL, but we need to support those, the majority, who are not so lucky.

[jersey-jazz]

I so agree with your oncologist and prefer quality more than quantity. It has to be said though, that I personally have been fortunate enough to have a "quantity"of life at age eighty-six and counting.

[RLN-overcomer]

Greetings:😇 Sister(s), Warriors(s), Thrivers, and also Over-comers😊. I am very conscious of the words I use. The word survivor is not one that I will use anymore. I stopped using the word survivor almost 12 years ago. The word survivor can be defined by many different challenges people face in life. ( To me) It also connotates a person hanging from a cliff🙄 trying not to fall and, wondering if they will fall then or at another time in the future. I have heard women say I am cancer free now, but I am worried about it coming back🤓. I will live my best life with the time GOD has given me, and I will not give my previous cancer diagnosis/prognosis the ability to remove any of what is the rest of what is left my best life/ joy journey😇. GOD bless us all. I hope/pray we will all have great fellowship with our loved ones everyday, and during the Holidays which are quickly approaching Amen😇